Hospice Palliative Care In Erie St. Clair/media/sites/esc/Goals and Achievements... · Hospice Palliative Care In Erie St. Clair Report on Current Services and Recommendations for

Hospice Palliative Care In

Erie St. Clair

Report on Current Services and Recommendations for Future Systems

December 2008

Send questions and comments to: Beth Lambie Director, Erie St. Clair End of Life Care Network [email protected]

Cite report as: Lambie,B., Erie St. Clair End of Life Care Network (Dec. 2008), Hospice Palliative Care in Erie St.

Clair, Report on Current Services and Recommendations for future systems

mailto:[email protected]

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Acknowledgement

This report is prepared by Beth Lambie, Director of the End of Life Care Network of Erie St. Clair, with secretarial support provided by Shari Scarpelli from CCAC.

Content for this report has been provided by all members of the End of Life Care

Network of Erie St. Clair (EOLCN ESC). Current members of the EOLCN - ESC Sharon Allen Jan Harrison Joanne Noah Ann Baker Judy Hastings Janet Nunn Vera Brajen Cathy Hockin Cathy Orr Terry Bresee Georgie Houston Mary Ellen Parker Ann Brignell Crystal Houze Kelley Phillips Marna Brownlee Nicole Hunter Cheryl Prince Debbie Burke Joyce Jardine Sherry Prince Linda Byers Julie Johnston Denise Quigley Linda Caldwell Joanne Jones Lori Ranchuk Anita Capeling Debbie Kafford Pam Reaume Brenda Carter Sandra Kent Karen Reid Paul Cavanaugh Sandra Kinart Maureen Reynolds Patty Chapman Kelly Kopcok Sue Roger Helen Cole Sandra Kroh Stephanie Rumble Barbara Coleman Betty Kuchta Lynn Rush Sharon Colman Sue Laforce Shari Scarpelli Jody Costello Beth Lambie Katherine Scimmi Karen Dally Angela Langford Candy Scott Donna Danelon Pat Lescinsky Sandra Shearme Carol Derbyshire Phyllis Lockery Agnes Sibiga Vivianne DeWitte Lucy Lombardo Trina Smith Charlene Dodge Mary Ellen MacDonald Nancy Snobelen Patti Drummond Dr. Glen Maddison Agnes Soulard Lorraine Dupuis Susan Mair Christine Stergiou Beverly Faubert Carol Markham Cindy Stokes Rosemary Fiss Delynn Marlatt Audrey Stringer Barb Frayne Carolyn McFadden Lawrence Stromme Dr. Nancy Friesen Paul McPhail Holly Tesselaar Dianne George Jennifer Middleton Melonie Thibert Carole Gill Liz Mikol Gale Turnbull Karen Glasier Amber Morin Cindy Vinall Dianne Goheen Diane Mulcaster Andrew Ward Shelley Gold Barb Nahnybida Sue Watson Cathy Harris Nora Nelson Barb Wheelton Support: The EOLCN is supported through funding from the Ministry of Health and Long Term Care. This funding was part of the MOHLTC End-of-Life Care Strategy (2006) and was ‗flowed through‖ CCAC. In ESC additional support is provided by the Windsor Regional Cancer Centre/ Regional Cancer Program and the Community Care Access Centre of Erie St. Clair. Thanks to LHIN staff for support and advice related to this report: Alec Anderson, Dawn Maziak, Paul Brown, Ralph Ganter, Brad Keeler.

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Table of Contents List of Appendices ........................................................................................................ iv List of Tables ................................................................................................................. v List of Figures ............................................................................................................... vi Executive Summary ..................................................................................................... vii INTRODUCTION ............................................................................................................. 1 SECTION 1 – Background related to this Report and Consultation Process .......... 1

Goal and Structure of this Report............................................................................... 1

Mandate of End of Life Care Network ........................................................................ 2

LHIN Request ............................................................................................................ 3

Consultation Process ................................................................................................. 3

Aging at Home Funding related to End of Life Care................................................... 4

Foundational Work ..................................................................................................... 4

SECTION 2 – Context – Understanding Palliative Care ............................................. 5

Definition – What is Palliative Care (PC)? .................................................................. 5

At what stage should patients receive Palliative Care? .............................................. 6

Terminology ............................................................................................................... 6

Benefits of Palliative Care .......................................................................................... 6

Recognized Need for Palliative Care ......................................................................... 7

Access to Palliative Care ........................................................................................... 7

Inconsistency of Palliative Care Delivery ................................................................... 7

Increased focus on enhancing options for location of death and terminal care .......... 8

Providing Hospice Palliative Care (HPC) – How is HPC delivered? .......................... 8

SECTION 3 – Erie St. Clair Region – Why is Palliative Care important here? ........ 13 Erie St. Clair (ESC) Profile ....................................................................................... 13

Need for Palliative Care in ESC ............................................................................... 14

Health ratings ESC region .................................................................................. 14

Demographic trends ........................................................................................... 14

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Health ratings within specific counties ................................................................ 14

Population Characteristics .................................................................................. 15

Health Care Resources ...................................................................................... 15

Community Priority ................................................................................................... 15

Readiness ................................................................................................................ 16

SECTION 4 – Description of Palliative Care Services in ESC – by Service Sector 17 Introduction .............................................................................................................. 17

Hospital - Acute Care (including HPC Tertiary Care) .............................................. 17

Hospital – Complex Continuing Care ....................................................................... 31

Long Term Care Homes .......................................................................................... 34

Residential Hospices ............................................................................................... 37

Community Care Access Centre (CCAC) and Community Service Provider Agencies – Care in the Home .............................................................. 43

Regional Cancer Centres ......................................................................................... 48

Outpatient Palliative Care Clinics/Consultation Services ......................................... 54

Volunteer Hospice Program (VHP) – Community Support Service (CSS) Funded Service .................................................................................................. 56

Palliative Pain and Symptom Management Consultation Program (PPSMCP)- Community Support Service (CSS) Funded Service .......................................... 60

Hospice Day Programs (Hospices – non-residential component) – Community Support Service (CSS) Funded Service and Non-Funded Service . 61

Expert Teams........................................................................................................... 66

Primary Care Providers ............................................................................................ 70

Grief and Bereavement and Other Programs and Supports .................................... 71

Summary Comments ............................................................................................... 71 SECTION 5 – Right Patient in the Right Place at the Right Time – How Do the Sectors Fit Together? ....................................................................... 72 Interventions/Procedures/Services .......................................................................... 72

Criteria for Admission ............................................................................................... 72

Tipping Points – Factors that Influence Patients‘ Ability to Remain at Home for EOLC .................................................................................................. 72

Case Studies ........................................................................................................... 76

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SECTION 6 – What Will the System Look Like in the Future? ................................. 77 Planning Considerations for Future System ............................................................. 77

Vision Statement ................................................................................................ 77

Key Functions of an Integrated Hospice Palliative Care (HPC) System ............. 77

General Goals of an Integrated HPC System ..................................................... 77

Objectives/Outcomes of an Integrated System ................................................... 78

Proposed System Level Indicators ..................................................................... 78

Principles and Values ......................................................................................... 79

Planning Assumptions Related to Erie St. Clair Regional Palliative Care ........... 79

Target Population ............................................................................................... 80

Key Elements of an Integrated System of Hospice Palliative Care (HPC) ............... 83 Identified Issues and Gaps Related to the System as a Whole ............................... 85 Recommendations for Future System of HPC in ESC ............................................. 87 Conclusions ............................................................................................................. 97

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List of Appendices Appendix 1 - End of Life Care Strategy and Networks - Information about Provincial and Erie St. Clair Networks including: History, Funding and Accomplishments; Diagram illustrating Structure of EOLCN ESC. Appendix 2 - Community Consultation Results - A summary of themes which have emerged from community feedback. Included are verbatim narrative comments from the on line survey posted on the LHIN web site. Appendix 3 - Domains of Issues Associated with Illness and Bereavement -From CHPCA - A model to Guide Hospice Palliative Care – Figure 7 Appendix 4 - Excerpts from Fraser Health Planning Reports -Operational Models for Residential Hospices and Description of patient needs in Residential Hospices Appendix 5 – Summary of Preliminary work related to ESC HPC Education Strategy/Blueprint 2008/09 Appendix 6 - Volunteer Supports by Key Location -Service Provided by Volunteer Hospice Program (VHP) and In-house Programs Appendix 7 - Summary of Community Support Services (CSS) Funding for Palliative Care in ESC by county Appendix 8 – Case Studies Appendix 9 – Planning Framework Appendix 10 – Pictorial Representation of Community Based Service Support

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List of Tables

Table 1 – Acute Care HPC in ESC Table 2 – Acute Care Bed Equivalents -Projected Need

Table 3 – Complex Continuing Care HPC in ESC

Table 4 – Long Term Care Homes - HPC in ESC

Table 5 – Residential Hospice HPC in ESC

Table 6 – Residential Hospice Beds – Projected Need

Table 7 – Community Care Access Centre and Community Service Provider Agency HPC in ESC Table 8 – Regional Cancer Centres HPC in ESC

Table 9 – HPC clinics in ESC

Table 10 – Volunteer Hospice Programs in ESC

Table 11 – Day Programs for HPC in ESC

Table 12 -Typical HPC Interventions/Procedures/Services Provided on site – By Patient location Table 13 -Typical Eligibility Criteria for Hospice Palliative Care in ESC Table 14 – Target Volumes – ESC HPC Current and Projected Needs by ―Consultation Category‖ Table 15 – Target Volumes – ESC HPC Program Needs – Current and Projected

Table 16 – Key Elements of an Integrated System of HPC in ESC

Table 17 – Recommendations – System Level

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List of Figures

Figure 1 –The role of Hospice Palliative Care during Illness

Figure 2 – Provider roles in Hospice Palliative Care

Figure 3 – Episode of Care Scenarios to meet Palliative Care Needs

Figure 4 – Providing Hospice Palliative Care

Figure 5 – Tipping points which contribute to patients‘ move from home to another care setting. Figure 6 – Target Population

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Executive Summary

Hospice Palliative Care – Erie St. Clair

Report on Current Services and Recommendations for Future System

Introduction

Each year over 5000 people die in the Erie St. Clair (ESC) Local Health Integrated Network (LHIN) region. It is projected that over 3000 of these people (and their families) require a specialized program of Palliative Care, with many more requiring primary care Palliative Care services.

Palliative Care (PC) aims to relieve suffering and improve the quality of living and dying.

Palliative care seeks to:

Treat all active issues,

Prevent new issues from occurring

Promote opportunities for meaningful valuable experiences…

Palliative Care is described in many ways including:

1. A philosophy of care

2. A clinical specialty with skill sets specific to palliative care.

3. A cultural ―movement‖.

Palliative Care is beneficial to patients and families and when implemented, as a program, provides significant cost savings for the health care system as a whole.

Palliative Care is required in all care settings/sectors.

Overview of report

This report is prepared by the End of Life Care Network of Erie St. Clair (EOLCN ESC). The overall goal of the report is to provide foundational information which will facilitate creation of a regional system for Palliative Care Service Delivery.

This report provides a context within which the Aging at Home initiatives, related to end of life care, will be implemented. Additionally this report provides an inventory of current PC services and provides an update to the strategic plan for the EOLCN ESC. This report will be submitted to the Erie St. Clair Local Health Integration Network (ESC LHIN) to be used as a source document for preparation of their directional plan for palliative care service delivery in ESC.

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This report is structured in six sections:

1. Background related to consultation processes and to the report itself.

2. Context to provide a basic understanding about Palliative Care and how it is provided.

3. An examination of why Palliative Care is important in ESC, including a summary of relevant regional health ratings, demographic trends etc.

4. An inventory and review of Palliative Care Services in ESC framed by service sector.

For each sector the review includes:

Background and context for palliative care in this sector,

Description of current Palliative Care service delivery in Erie St. Clair-including models of care, volumes, costs/funding etc.

Projected role of this sector in the future system of Palliative Care Service Delivery. Population based projections for numbers of acute care and residential hospice beds are included.

Issues in Palliative Care for this sector in ESC,

Recommendations for enhancing Palliative Care Service Delivery in this sector in ESC.

5. A summary of how the sectors fit together – right patient / right place / right time

6. A planning context for the future system. This context includes:

Articulation of planning elements: vision, functions of an integrated system, goals, objectives, system level indicators, principles and values, planning assumptions and target population.

An examination of key elements of an integrated system and ESC current status related to these elements.

Issues and Gaps within the system as a whole,

Recommendations and high level action plans for the system of Palliative Care within ESC.

Current status of Hospice Palliative Care (HPC) in ESC

Despite numerous demographic trends and health status ratings which indicate a greater need for Palliative Care in ESC than is the case across the province, ESC system level PC indicators are not significantly worse than throughout Ontario and Canada. This is a credit to the many dedicated professionals and organizations in ESC that were ―early adopters‖ of Palliative Care programming.

Dying patients are cared for in all sectors and as such palliative care needs exist in all sectors. These needs are being addressed to varying degrees in each agency/facility. Many examples of best practice Palliative Care are evident in ESC. Section four inventories and describes, in detail, the current status of HPC in our region.

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Future System

In an integrated Palliative Care system, each service provider agency should be able to:

Identify patients, within its facility/service, who require palliative care,

Provide these patients with adequate palliative care services within the facility/service.

Understand enough about the broader system to know when and to what location the patient may be discharged.

This requires that:

Secondary level of expertise is identified and offered in each organization / service provider agency.

Each sector is committed to a cross sector integrated system of HPC service delivery.

A dashboard of data elements (which can evolve into indicators) is reported by each sector.

Gaps in the service continuum are addressed.

To move from our current sector specific service provision to a true system of palliative care service provision requires:

A. Commitment within each agency/organization B. Cross sector education and shared clinical practices which connect sectors C. System level accountability D. Full continuum of Care across the system E. Human Resource levels which are adequate

Accordingly recommendations are made within this framework. These five provisions serve as strategic priorities as we move forward to design and build a true system of regional palliative care service.

Recommendations

A. Commitment within each agency/organization Recommendation #1

It is recommended that each agency / organization in each sector:

Clearly define its model of hospice palliative care delivery.

Identify secondary level expertise within the agency/facility or clearly define access processes to outside expertise.

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Examine (and improve if necessary) practices for coding of Hospice Palliative Care to insure consistency and measurability (e.g. Z51.5 in acute care, MIS95 in CCAC sector etc.).

Continue to advance the use of consistent approaches to HPC across the region. This includes the enhanced use of the ESAS and PPS (as articulated in the aims of the Ontario Cancer Symptom Management Collaborative).

Continue to participate in the development and updating of cross sector processes including ―criteria for admission‖ by sector within each county as well as for the region as a whole.

Review and respond to sector specific recommendations in this report.

Identify key organizational contact for HPC

Continue to participate in EOLCN activities.

B. Cross sector education and shared clinical practices which connect sectors

Recommendation #2

Establish and Implement an Education Strategy as part of the A@H initiative related to EOLC in ESC

Recommendation #3

Establish Expert teams as part of the A@H initiative related to EOLC in ESC

C. System level accountability

Recommendation #4

Continue to enhance the EOLCN structure including articulating clear accountabilities relating to the advisory capacity of the EOLCN relative to A@H initiatives and reporting to the LHIN about system level outcomes and performance of the HPC system.

D. Full Continuum of Palliative Care Services

Recommendation # 5

Continue to advocate for a full continuum of funded HPC services in ESC. This includes:

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Residential Hospice in Chatham Kent.

Funded HPC day programs in Chatham Kent and Sarnia Lambton

HPC Clinic in Chatham Kent.

Identified Acute Care HPC Tertiary Care Beds within the current programming of HPC.

Advocating for greater than 50% funding for current Residential Hospices.

Recommendation #6

Embrace specific members of the broader community as explicit partners with the HPC team – particularly Spiritual Care Leaders.

E. Human Resource levels which are adequate

Recommendation #7

Define baseline levels of Palliative Care expertise required in ESC. Continue to recruit and train.

Next Steps in creating a regional system of Palliative Care in ESC

The ESC region is well positioned to take the next step of palliative care service delivery – development of a truly integrated cross sector model of care across the region. Many of the essential building blocks are already in place:

A critical mass of direct care providers exists that understands and can apply the essential elements of Palliative Care (PC) service provision including standardized assessment and management tools.

Structures for ongoing education are in place

A palpable passion exists to provide good care.

A regional leadership structure has been established, with key leaders at the table.

While many of the basic building blocks are in place, further development is required to put in place the ―mortar that holds the blocks together‖. This then is the ‗next step‘ challenge.

Within this report, specific next step recommendations and initial action plans are articulated.

The funding awarded through the Aging at Home initiative and the excellent leadership provided by the LHIN of ESC, are key catalysts which will transform these next steps into reality.

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Hospice Palliative Care – Erie St. Clair

Report on Current Services and Recommendations for Future Systems

INTRODUCTION

―At some time, in some way, we must all face the end of life. And most of us share a common hope – that when death comes to us or to a loved one, it will be peaceful and free of pain. We hope to face death surrounded by those we love, feeling safe, comfortable and cared for.‖1

All people are of worth and they matter to the last moment of life. Effective Palliative Care seeks to do all that can be done, not only to help each patient to die peacefully, but to live until he/she dies.2

Indeed the need for effective palliative care is not just a desire of the individual and his/her family, it is a societal imperative. The province of British Columbia introduces its Provincial Framework for End of Life Care with the following statement, ―The way we care for and support people who are dying, and their families is one of the measures of our society‖3

The report which follows looks at how we provide this support from a perspective of system design now and in the future.

SECTION 1

Background related to this Report and Consultation Process

Goal and Structure of this Report

This report is prepared by the End of Life Care Network of Erie St. Clair (EOLCN ESC).The overall goal of the report is to provide foundational information which will facilitate creation of a regional system for Palliative Care Service Delivery to continue to enhance care for those requiring Palliative Care in Erie St. Clair region.

This report provides a context within which the Aging at Home initiatives, related to end of life care, will be implemented. Additionally this report will serve as an update to the strategic plan for the EOLCN ESC and will be submitted to the Erie St. Clair Local Health Integration Network (ESC LHIN) to be used as a source document for preparation of their directional plan for palliative care service delivery in ESC.

This report is structured in six sections:

1. Background related to consultation processes and this report.

2. Context to provide a basic understanding about Palliative Care and how it is provided.

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3. An examination of why Palliative Care is important in ESC, including a summary review of relevant regional health ratings, demographic trends etc.

4. A review and inventory of Palliative Care Services in ESC framed by service sector.

For each sector the review includes:


Description of Current Palliative Care service delivery in Erie St. Clair,

Future System – Projected role of this sector in Palliative Care Service Delivery, including population based calculations for numbers of acute care and residential hospice beds.



5. A summary of how the sectors fit together – right patient / right place / right time

6. An examination of how the system will look in the future.

This examination includes:

Articulation of planning elements: vision, functions of an integrated system, goals, objectives, system level indicators, principles and values, planning assumptions and target population.

An examination of key elements of an integrated system and ESC current status related to these elements.

Issues and Gaps within the system as a whole,

Recommendations and high level action plans for the system of Palliative Care within ESC.

Mandate of End of Life Care Network

The mandate of the End of Life Care Networks across Ontario is consistent with the goals of this report.

The mandate of End of Life Care Network‘s is:

accountability for broad system design,

coordination and integration of services at a system level,

monitoring and assessment of community needs,

promotion of service innovations.4

Current members of the ESC EOLCN are listed inside the front cover of this report. In addition to providing key consultations, these members submitted information for this report and vetted tables and full documents.

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(Refer to Appendix 1 for details of EOLC Networks, End of Life Care Strategy and EOLCN of ESC , including accomplishments related to Strategy and EOLCN ESC Structure.)

LHIN Request

In keeping with the mandate of the EOLCN, the ESC LHIN requested that the Erie St. Clair End of Life Care Network (ESC EOLCN) prepare a report, which will guide the ESC LHIN decision-making and investments in the next three to five years as it relates to Palliative Care in the ESC region.

The ESC LHIN requested that the ESC EOLCN:

Report on services currently available,

Provide suggestions regarding potential services to be provided in each sector,

Develop a high level implementation plan,

Develop and provide planning recommendations to the ESC LHIN for the strategic alignment, of the local EOLC services continuum.

Consultation Process

For the purpose of this report, several consultation and review processes have come together, those processes being:

the End of Life Care Network (EOLCN) planning process for next steps,

the Aging at Home (A@H) initiative - as it related to EOLC (refer to LHIN website for details), and

an inventory of Palliative Care services currently available in ESC.

These consultation processes engaged hundreds of key stakeholders and were informed through:

More than 20 consultation meetings with over 60 members of the EOLCN, as part of the A@H initiative and this report writing process.

2 surveys on the LHIN Web site - one which was specific to End of Life Care (more than 120 responses)

Completion of hard copy surveys, facilitated by the Alzheimer Society staff (35 responses).

Review of outcomes of focus groups and one-on-one contact with more than 120 individuals as part of preparing the Service Delivery Plans submitted to the MOHLTC in 2005,

End Of Life Care Strategy meetings with resultant plans –November 2004, February 2005,

End of Life Care Network Regional forums on Nov. 30th 2006 and Feb. 9th 2007,

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Validation of draft reports –April, May and October 2008,

Motion by EOLCN Steering Council that this report submitted to the LHIN include recommendations for each sector and for overall regional program – May 2008,

Validation of/consensus around Key Issues, Next Steps and accomplishments to date – May and June 2008,

Validation of information and data – July and August 2008.

Results of a needs survey for HPC education with over 100 responses - Sept.2008.

(Refer to Appendix 2 for further details related to these consultation processes including narrative results of on line survey from LHIN website)

This report seeks to help set the stage for this next level of Palliative Care Service Delivery in the Erie St. Clair region, including implementation of Aging at Home strategies related to End of Life Care.

Aging at Home Funding related to End of Life Care

The Erie St. Clair Local Health Integration Network (LHIN) received first year funding from the Ministry of Health and Long-term Care for 24 seniors‘ health service proposals under the Aging at Home Strategy. The Erie St. Clair End-of-Life Care Network submitted two proposals for consideration, and had both proposals approved for funding. This funding is to be used for these specific initiatives as directed by the LHIN.

Education Program: One of the two approved proposals focuses on the development of a LHIN-wide, integrated, cross-sector hospice palliative care education program. The first step is the development of a hospice palliative care education framework for Erie St. Clair. An education workgroup will assist with ongoing strategies around education and will provide reports to the EOLC Network. The EOLCN will serve in an advisory capacity for this initiative. The funding agency is the Community Care Access Centre (CCAC).This funding is annualized.

Team: The second initiative is the development of a regional expert multidisciplinary resource team for end-of-life care. The expert team will begin in one county, Sarnia-Lambton, and will then expand into the rest of the region in subsequent years. Year one funding for Sarnia Lambton will be annualized with additional funding for the other two counties in year two and three.

This team is a collaborative initiative between the North Lambton Community Health Centre and the Community Care Access Centre. The End of Life Care Network will serve in an advisory capacity.

Foundational Work

This report will serve as a foundation for subsequent annual reports relating to the ―system‖ of Palliative Care in ESC.

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SECTION 2

Context – Understanding Palliative Care

Definition – What is Palliative Care (PC)?

Palliative care focuses on quality of life for patients with progressive life-threatening illnesses and their families. It aims to prevent and relieve suffering (physical, psychosocial, and spiritual). It has a role all along a patient‘s illness trajectory.

Palliative Care is described in many contexts including:

1. A philosophy of care

2. A clinical specialty with skill sets specific to palliative care

3. A cultural ―movement‖

As a philosophy of care / approach to care Palliative Care takes a holistic approach to care explicitly embracing care within all domains of issues associated with illness and bereavement:

Disease management

Physical

Psychological

Social

Spiritual

Practical

End of Life Care / Death Management

Loss, Grief

(Refer to Appendix 3 for excerpt from CHPCA -Model to guide Hospice Palliative Care which details these domains5)

Palliative care is multidisciplinary in its approach.

As a clinical specialty with skill sets specific to palliative care, Palliative care notably addresses pain and symptom management in an aggressive and unique manner. For example, medication regimes for this field of medicine may be quite different from those used for post operative pain.

As a cultural ―movement‖ Palliative Care distinguishes itself from many other specialty areas in health care. Palliative Care is frequently embraced by communities and care providers with a unique passion. The CHPCA Model to Guide Hospice Palliative Care concludes with the following statement:

In the end, our society‘s ability to realize its potential will be related to its success at relieving suffering. The health and compassion of our communities will be related to the degree of integration of hospice palliative care into all aspects of our healthcare system.

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At What Stage Should Patients Receive Palliative Care?

The diagram below from the Canadian Hospice Palliative Care Association‘s (CHPCA) national consensus model6shows how individuals with progressive life-threatening diseases can receive treatment to modify their disease and also receive hospice palliative care. The initiation of hospice palliative care should not wait until the last few days of a person‘s life when all hope for cure has been exhausted. Cancer Care Ontario has endorsed this concept and uses the term ―simultaneous care‖.7

Figure 1 – The Role of Hospice Palliative Care during Illness

Hospice palliative care also includes support for families. As depicted in the model above, hospice palliative care continues after the death of the patient to include bereavement support.

Terminology

In Canada, the terms ―hospice‖, ―palliative care‖ and ―hospice palliative care‖ are used to denote a philosophy of care. The term ―End-of-Life Care‖ is used to define the final stages of life. Additionally the word ―hospice‖ is often used to refer to a place of care. For the purpose of this report these terms will be used interchangeably.

Each sector has specific operational definitions related to Hospice Palliative Care/ End of Life Care.

Benefits of Palliative Care

Palliative Care is beneficial to patients, families and to the system. Palliative care is:

Patient-centred and family-centred8,

Beneficial in reducing symptom burden and enhancing patient and family satisfaction.9, 10, 11, 12, 13, 14

Cost-saving in terms of reducing hospital and ICU length of stay while providing compassionate care. 15, 16

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Recognized Need for Palliative Care

An increasing need for palliative care has been identified across the country and province.17, 18, 19, 20, 21, 22 Palliative Care is a recognized priority internationally, throughout Canada and within Ontario. In 199523, 200024

and again in 200525, the Senate of Canada released reports related to Palliative Care and is currently continuing to address Palliative Care issues through its Committee on Aging.26 The federal government has introduced a number of policies and programs to address some of the identified concerns and provincial governments are initiating strategies, frameworks and performance measures to help enhance Palliative Care Service delivery.27 Palliative Care is recognized internationally, with notable system planning and integrated initiatives in many countries28.

Ontario‘s End-of-Life Care strategy was announced by the Minister of Health and Long term Care, on Oct 5, 2005.29 The overall goal of the End of Life Care Strategy for Ontario is to create a system of Palliative Care that is: comprehensive, consistent and high quality.30

Access to Palliative Care

It is reported that across Canada the percent of dying Canadians who receive palliative care is ―alarmingly low‖.31

Patients are frequently referred to hospice palliative care too late to receive full benefit. Late referrals result in: more unmet needs; lower confidence and satisfaction levels; and more concerns about coordination and continuity.32

A CIHI report about End-of-Life Care in Western Canada indicates that overall:

only 13% – 16% of people who died received hospice palliative care,33

those who died in hospital received hospice palliative care in 25% of cases; for those with a terminal illness, that number went up to 37%,

many patients do not have their pain and distressing symptoms effectively managed at end of life, despite clinical advances in care which could have been provided.34

The CIHI report, HSMR (hospital standardized mortality ratio): A new Approach for Measuring Hospital Mortality Trends in Canada indicates that as it relates to deaths in acute care, ―patients reported to have received palliative care accounted for approximately 2% of HSMR-eligible case and 15% of deaths. This is likely an underestimate…‖35

Inconsistency of Palliative Care Delivery

There is a need for consistency in Palliative Care Delivery.

―Wide variation in care suggests that a systematic approach to end-of-life care does not yet exist.‖36

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In its Strategy document for Improving the Quality of Palliative Care Services for Cancer Patients in Ontario, Cancer Care Ontario cites several significant variations in palliative care practices across Ontario:

The percentage of cancer patients receiving a palliative physician visit in their home in the last two weeks of life varies across regions from 10% to 32%,

Outpatient palliative care physician assessment in the last two week of life varies from 4% to 33%,

Inpatient palliative care physician assessment in the last two weeks of life varies from 14% to 26%.37

Increased Focus on Enhancing Options for Location of Death and Terminal Care

One of the specific objectives of Ontario‘s End-of-Life Care Strategy is to shift care of the dying from acute settings to alternative appropriate settings of the patient‘s choice.38

In 2000, approximately 75% of deaths took place in hospitals and long term care homes.39 While this percentage is decreasing, a CIHI study showed that more than half of the over 65,000 people who died in Western Canada in 2003/2004, died in hospital.40

Frequently cited polls indicate that a high percentage of Canadians state that they would prefer to die at home.41

Providing Hospice Palliative Care (HPC) – How is HPC delivered?

Locations of HPC - Patients requiring palliative care are cared for in virtually all care settings. Therefore palliative care should be provided in all care settings. Each sector requires internal expertise at both a primary and secondary level. Processes should be clearly articulated for access to specialist level (tertiary level) palliative care expertise if that expertise is not available ―on site‖.

The Canadian Hospice Palliative Care Association (CHPCA) states:

―As in any other healthcare situation when primary providers encounter care issues and situations beyond their level of confidence and expertise or when their practice outcomes are not consistent with accepted norms of practice…., they must be able to seek help and support from … experts.‖42 For this to be possible, interdisciplinary teams of secondary hospice palliative care experts must be readily accessible in every setting where patients and families receive care.‖ 43

In many other specialty areas of healthcare, access to tertiary experts is often regarded as being possible only in a major academic or population centre. However if patients requiring palliative care are to be maintained in their homes or in settings close to home it is necessary for the specialist level of expertise to be available to patients in each county.

Provider roles - The Canadian Hospice Palliative Care Association describes roles for the following levels of care providers:

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Primary providers – available in all settings o Manage disease, its manifestations and the predicaments it creates o Identify issues o Provide the core competencies of hospice palliative care o Have enough basic level HPC awareness that they can identify patients requiring

HPC and refer them appropriately

Secondary Experts – available in all settings – preferably on site o Are experts in hospice palliative care o Support primary providers in every setting where patient/families receive care o Identify patients requiring specialist level HPC and refer them appropriately

Specialist /Tertiary Experts – available to patients in all settings (may not be on site, but must be available) o Consult to secondary experts and primary providers on difficult-to-mange cases o Educate/train secondary and tertiary experts o Conduct research o Develop advocacy strategies.44

The Palliative Pain and Symptom Management Consultation Program (PPSMCP) serving Erie St. Clair has developed a framework articulating educational requirements and role expectations for the three levels of expertise described in the CHPCA model. Education and mentoring from the PPSMCP is geared around this framework.45

These three distinct levels may not be developed in each region and there is frequently a blurring of roles between secondary level and specialist/tertiary level expertise. This merging of roles occurs currently in ESC and will likely continue as we develop the future model of care. In some academic settings the opposite phenomena may occur with a subdividing of roles; a fourth level may be identified to provide consultation to secondary and tertiary levels and to lead educational/research initiatives

Figure 2 below from CHPCA model of care illustrates provider roles and interactions between / among the identified three roles.46

Figure 1 - Provider roles in Hospice Palliative Care

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Palliative Care Australia identifies two main levels of expertise and describes them as follows:

―Primary care providers include general practitioners, community and hospital based doctors, nurses and allied health staff … whose substantive work is not in palliative care. Primary care providers, in the context of palliative care, can also be other specialist service providers….For those patients who have relatively uncomplicated journeys, most if not all, of their needs may be met by their primary care providers… Primary care providers will need to have established and supportive relationships with specialist palliative care services to ensure their continuing development of their skills and to ensure quality of care‖47

―Dedicated specialist palliative care services meet the needs of patients with complex or resource intensive needs that are beyond the expertise or exceed the capacity of primary care providers. Specialist palliative care is generally described as being provided through either individual patient based consultation or co-case-management with primary care providers.‖48 ―For most people this is likely to be episodic need of specialist care provided in partnership with their primary care team. A patient may expect to access specialist services on a number of occasions while receiving ongoing care from their primary care providers.‖49

Shared Care / Collaborative Care – Palliative Care is most frequently provided using a shared/collaborative approach to care. Figure 3 below is taken from Palliative Care Australia and demonstrates a number of possible care scenarios for a person with a life limiting illness based on his/her individual needs. These scenarios show the interactions between primary and specialist care providers.50

Patient #1 is cared for using a shared care/collaborative care model with Primary Care throughout and three episodes of Specialist Care. A shared care model is in place at time of death, with the patient‘s needs being at a Primary level.

Patient #2 is also cared for using a shared care/collaborative care model with two episodes of Specialist Care. A shared care model is in place at time of death, with the patient‘s needs being at a Specialist level.

Patient #3 requires only Primary Care.

Patient #4 is cared for using a shared care/collaborative care model with all of the care needs requiring involvement at a Specialist Care level. At time of death the patient‘s needs continued to require Specialist Level care.

Figure 2 - Episode of Care Scenarios to meet Palliative Care Needs51

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Conceptual Model - Figure 4 (on page which follows) presents a conceptual model to assist Palliative Care development in ESC. The diagram shows patient movement between three levels of care and also includes a level of tertiary interventions (see note of clarification re term tertiary below). Figure 4 correlates the levels of care with:

Description of patient needs at each level

Description of provider roles at each level

Typical location/setting of care for each level.

The base of the triangle in figure four represents the largest volume of patient activity with the apex illustrating the smallest volume. The 3 levels may be combined or further subdivided depending on regional variations. For example, in some academic settings a subdividing of the third level of care may occur with a fourth (quaternary) level emerging to provide consultation to secondary and tertiary levels and to lead educational/research initiatives. The opposite may occur in other settings where a blurring/merging of roles between the secondary and tertiary levels occurs with a two tiered model emerging (as is reflected in the Australia model). (Figure four does not illustrate either of these contingencies).

From a practical standpoint the beginning point for implementation of a model of palliative care is to:

recognize that Palliative Care is a specialty and levels of expertise must be developed beyond the primary level,

develop expertise in an interdisciplinary context,

build on the expertise currently available.

Note of clarification related to the term Tertiary

The term Tertiary is used in three contexts:

Tertiary Experts in Hospice Palliative Care – The CHPCA context cited above describes a level of expertise which should be available to patients in all care settings.(This is level 3 in the triangle of ―Levels of Care/Expertise” depicted in figure 4 and is described by CHPCA)

Tertiary Level Interventions/Procedures/Services for patients with life limiting illnesses -Tertiary level interventions and procedures include surgery and acute medical interventions which may be necessary to manage symptoms. These procedures are conducted in a hospital inpatient or ambulatory care setting and are regarded as tertiary level interventions. Further discussion of this occurs in Section 4 below related to acute care. (This is the apex of the triangle of ―Levels of Care/Expertise” depicted in figure 4 )

Tertiary Hospice Palliative Care Unit – ―A Tertiary HPC unit (THPCU) provides specialized, skilled assessment and intervention in a supportive acute care environment in order to stabilize patients so they may return home or go to a hospice or residential care setting…‖52 (This is one of the “Settings of Care” depicted on the top far right of figure 4).

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SECTION 3

Erie St. Clair Region – Why is Palliative Care Important Here?

Erie St. Clair (ESC) Profile

ESC is the most southwest region in the province, being comprised of three counties with a total population of 651,000.

The ESC LHIN Website gives the following community profile:

County Population Largest Urban

Centre Profile

Essex 410,000 Windsor (56%) 3 .8% Francophone 1.2% Aboriginal 11.4% Visible Minorities

Chatham-Kent 109,000 Chatham (39%) 4.0% Francophone 2.0% Aboriginal 3.8% Visible Minorities

Lambton 132,000 Sarnia (56%) 2.4% Francophone 4.3% Aboriginal 2.3% Visible Minorities

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Need for Palliative Care

Erie St. Clair region shows significant trends which indicate an even greater need for palliative care than is the case across the province. These are summarized below. Health ratings ESC region:

Relative to the province, ESC as a region shows statistically significant worse health ratings as follows:

Total Mortality rates

Cancer mortality rates– all cancers

Circulatory Disease death rates

Ischemic Heart Disease death rates

Potential years of life lost (PYLL) – all causes

PYLL – All cancers combined, Lung Cancer, Circulatory Diseases, Ischemic Heart Disease, Respiratory Disease, Pneumonia and Influenza

Life expectancy

Demographic trends:

The proportional increase of 65+ in ESC is higher than the province as a whole.

Health ratings within specific counties:

Relative to the province, specific counties within ESC show statistically worse health ratings as follows:

Essex – Cerebrovascular disease death rates and PYLL

Essex – Prostate Cancer Incidence

Essex and Lambton – Cancer Incidence – Bronchus and lung

Essex and Lambton - Cancer mortality – lung

Chatham/Kent and Lambton– Cancer Incidence –all invasive Primary Cancer sites

Chatham/Kent and Lambton - males colorectal cancer incidence and death rates

Chatham/Kent and Lambton – females PYLL –Breast cancer

Lambton –mortality rates due to all cancers have been declining among Ontario males, but this downward trend is not apparent in Lambton

Lambton- rates of lung cancer escalated in the late 1990s and remain higher than provincial and regional rates

Lambton – mortality rates for mesothelioma are 4.5 times greater than expected during latest reporting period

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Population Characteristics:

Relative to the province, the following population characteristics are evident in specific counties in ESC:

Chatham/Kent and Lambton have a higher proportion of age 65+ residents and higher ratio of aged dependency

Chatham/Kent and Lambton show lower average incomes for all family types and lower median family incomes, especially for female lone parent-led families

Chatham/Kent and Lambton are 1.28 and 1.34 times more likely to receive their income from government transfers

Chatham/Kent and Lambton show percentage of seniors in local population at a rate 1.14 and 1.23 times higher

Chatham/Kent and Lambton seniors are 1.12 and 1.26 times more likely to live alone

Chatham/Kent and Lambton residents report providing much more unpaid care to seniors

(Details and definitions for above information can be found in the Health System Monitoring Report53 Population Health Profile: ESC LHIN54 and the Lambton County Health Status Report 55.)

Health Care Resources:

Relative to the province, specific counties within ESC show fewer healthcare resources as follows:

Windsor/Essex and Sarnia/Lambton have fewer acute care beds per 100,000 population (S/L-approx. 50 more beds completed by 2010, no defined plans for Windsor Essex).56

Windsor/Essex has fewer complex continuing care beds per 100,000 population 57

Windsor/ Essex has fewer LTCH beds per 100,000 population.58

Sarnia/Lambton, Chatham/ Kent and Windsor/ Essex all have significantly fewer General Practitioners (GP) and Specialists per 100,000 population: for GPs- 36%, 32% and 40% lower respectively, for specialties- 40%, 62% and 33% respectively.59

All counties have fewer healthcare professionals in all categories per 100,000 population than Ontario, in all categories with the exception of Extended Class Registered Nurses and Registered Practical Nurses.60

Community Priority

The community at large, in ESC, has recognized the significant need for enhanced Palliative Care Service Delivery and has repeatedly identified its desire to build a Palliative Care ―system of high quality care which is accessible, timely, comprehensive,

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flexible and respectful of an individual‘s choice of place in which to spend their last days.‖61 This message has been conveyed through many venues including: local media, survey responses, willingness to financially support Hospice and other palliative care endeavours, EOLCN consultation forums, etc.

(Refer to Appendix 2 for a summary of themes from these community consultation opportunities.)

Readiness

Erie St. Clair is well positioned to immediately enhance Palliative Care Service Delivery. Care providers in ESC have, over the past 20 years, responded passionately and competently to the very apparent need for Palliative Care. Hence, the ESC region is equipped to enter the next level of palliative care service delivery - a truly integrated cross sector model of care across the region.

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SECTION 4

Description of Palliative Care Services in ESC – by Service Sector

Introduction

Palliative Care is required and provided in virtually all care settings.

Each of the three counties in ESC developed a unique focus and a slightly different model for Palliative Care Service Delivery. Service delivery plans, which were submitted to the MOHLTC in 2005 from each of the CCAC regions, highlight these differences.62,63

Despite the differences in emphasis, each county has provided some degree of palliative care in all care settings and has a number of supportive services available to the patient and family requiring palliative care.

Volumes used in the following discussion are presented to enhance our understanding of ―order of magnitude‖ of palliative care in ESC. No cross sector tracking of individual patients is done therefore the numbers are not additive.

No specific qualitative data is included in this report. Every sector has some form of qualitative evaluation; however it was beyond the scope of this report writing process to acquire, compile and analyze this information.

For each sector the description below provides:


Description of current Palliative Care service delivery in Erie St. Clair for this sector,

Future System – Projected role of this sector in Palliative Care Service Delivery, including population based calculations for numbers of acute care and residential hospice beds.



Hospital Acute Care (including HPC Tertiary Care)

Background and Context

Acute Care – reference point for system as a whole

When examining the palliative care system, it is important to understand the Acute Care sector of Palliative Care because acute care is a reference point for the system as a whole. One of the strategies of the MOHLTC EOL strategy is to shift care of the dying from acute settings to alternative appropriate settings of the patient‘s choice.64 Reducing dependence on acute care is one of the outcomes cited in the majority of initiatives submitted for the A@ H initiative.

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Typically indicators, which are used to measure Palliative Care improvements within the system as a whole, relate to decreased reliance on the acute care sector.

For example Cancer Care Ontario indicators for End of Life Care have included:

A measure of decrease in percentage of deaths in acute care.65

A measure of decrease in the proportion of cancer patients that visited the ER during last 2 weeks of life,66

A measure of decrease in length of stay in acute care for last 6 months of life for patients who died of cancer in Ontario67

This referencing is not inappropriate since acute care costs are the highest in the system and typically patients report a preference not to be in an acute care facility. Therefore it is important to examine and articulate what is an appropriate role for the acute care sector in Palliative Care service delivery.

How does ESC compare in terms of Acute Care system level indicators?

Information from four indicators shows ESC with outcome similar to comparators.

Indicator 1 – percent of deaths in acute care – ESC compared with province as a whole and with other provinces:

ESC is slightly lower (better) than Ontario as a whole and is at midrange as compared to other provinces; ESC is at 62%68; Ontario as a whole is 63%69, Canadian rates range from 87% in Quebec to 51.6% in Saskatchewan70.

Indicator 2 – percent of patients, who died of cancer that died in acute care – ESC compared with Ontario as a whole:

ESC rate is slightly higher (worse) than Ontario as a whole; ESC is at 59%; Ontario as a whole is at 53% 71

Indicator 3- Emergency room – Proportion of patients who died of cancer that visited the ER during the last 2 weeks of life – ESC compared with Ontario as a whole

ESC is slightly higher (worse) than Ontario as a whole; ESC 2008 first quarter report shows 43%; Ontario‘s mean is 40.6%72 (this indicator uses vital stats information and is therefore several years old)

Indicator 4– Length of stay (days) in acute care for last 6 months of life for patients who died of cancer – ESC compared with Ontario as a whole

ESC is slightly lower (better) than Ontario as a whole; ESC 2008 first quarter report shows 18.9 days; Ontario‘s mean is 19.4 days.73 (old data due to use of vital stats info)

Typical models of Palliative Care in Acute Care Inpatient Settings

The typical models of acute care inpatient palliative care are:

1. Dedicated units / Designated beds where specialized staff care only for Palliative Care patients 74

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2. Integrated units where ―a palliative care unit can occupy a portion of a larger unit, dually trained staff can cross-cover and beds can swing from palliative care to other uses as needed‖;75

3. Consultation teams or consulting experts– with or without a dedicated unit or dedicated beds.76,77

Tertiary Care Units/Beds

Fraser Health describes the role of a tertiary care unit as follows:

―A Tertiary HPC (Hospice Palliative Care) unit (THPCU) provides specialized, skilled assessment and intervention in a supportive acute care environment in order to stabilize patients so they may return home or go to a hospice or residential care setting…‖78

In regions with defined tertiary level palliative care in acute care hospitals, this care typically is provided on a dedicated unit with:

at least 10 beds clustered

access to a broad range of acute care services including: o critical care o operating rooms o radiology and laboratories o oncology o anesthesia79

Cost of Inpatient Palliative Care

There are many indications of overall cost benefit of a PC program in Acute Care.

Curative treatments are more expensive than palliative care and may be unnecessarily prolonged if no palliative services are available,

Algorithms are available to calculate potential savings.80

According to a recent American study (Sept. 2008) of eight very different hospitals:

hospitals saved from $279 to $374 per day on patients in palliative care programs,

hospitals saved from $1700 to $4900 on each admission of a palliative care patient,

savings included significant reductions in pharmacy, laboratory and intensive care costs. This means a savings of more that $1.3 million for a 300 bed community hospital…81

Comparative Cost of typical models

It is not possible to compare which model of Palliative care service delivery in hospital is cheapest. There is no available Canadian based cost comparison of models of inpatient palliative care. While a dedicated unit is easy to cost out, other models have PC patients dispersed on other units and it is difficult to determine costs for PC patients as distinct from other patients on the unit.

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(This difficulty in cost comparisons has been compounded by the discontinuation of mandatory reporting of Nursing workload data in 2005).

Volumes Definition

The metrics used to gain insight into acute care PC volumes are based on the Z51.5 code as defined by CIHI82.

Notes of caution re volumes and AC data interpretation

It is generally agreed that the numbers of patients requiring palliative care are significantly higher than what is generally captured by hospitals in the Z51 code. During the validation process of the HSMR review, several hospitals across Canada identified challenges with palliative care coding. ―Based on this feedback, CIHI issued an interim guideline for the coding of palliative care services in June 2006‖.83 In response to concerns of ambiguity in relationship to chart documentation of ―terminal illness‖, CIHI issued a further clarification in October 2007, to be used for fiscal year 2007-2008.84A footnote in the HSMR report states ―A national coding standard will be implemented in 2008‖.85

Therefore it is evident that coding of Palliative care in acute care hospitals, for the past several years, may not be consistent and as indicated in the HSMR report there is likely an underestimate of palliative care.86 Hence volumes below must be interpreted with caution.

Additional observations to be aware of when considering ESC hospital palliative care volumes and relative percentage of deaths in hospital are cited below:

The CIHI HSMR report states that there is some question about how the presence of a cancer centre and/or being an inflow referral centre may impact the HSMR results.87 This suggestion was reiterated as a possible mitigating factor relative to Windsor Regional Hospital HSMR results.88

Lung cancer patients (compared to all cancer diagnoses combined) demonstrate a higher overall percentage of in hospital deaths across the province.89 Therefore counties (Essex and Lambton) with a higher incidence of lung cancer (including Mesothelioma) and lung cancer mortality rates would be expected to show more in-hospital palliative care and in-hospital deaths.90,91

The absence of an active palliative care program and/or palliative physician in an acute care setting may decrease the identification and coding of patients who are appropriate for palliative care. The preeminent Palliative care physician in Windsor /Essex left at the end of 2006. This may have resulted in an under coding of Palliative Care in Windsor Essex.

Description of Acute Care Inpatient Palliative Care in Erie St. Clair

Description by Facility

All three typical models of care are evidenced in ESC as described below. Acute care volume data included below was provided by each facility.

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1. Windsor Regional Hospital (WRH) – The palliative program beds are integrated with the oncology program beds. This inpatient unit is a 28 bed acute care oncology unit plus 2 Oncology Flex Beds and 2 Emergency department hold beds. This unit admits patients with any cancer diagnosis as well as overflow medical patients. Palliative Care patients with a non-cancer diagnosis are dispersed throughout the medical / surgical / intensive care units. Palliative Care consultation is currently provided by an expert nurse from the Regional Cancer Centre (RCC). Since the departure of two key Palliative Care physicians, PC consultation at WRH has been limited. Some medical consultation is provided by a RCC oncologist and a physician from the Hospice of Windsor Essex.

Volumes (Z51) 07/08:

96 discharges

998 total days of care

3.2 bed equivalents (at 85% occupancy)

Palliative Care days of care as percentage of total days of care -1.1% of total days of care.

Comment - WRH is currently developing a new model of care for patients requiring Palliative Care. This development will include an analysis of Z51 data. It appears as if there may be under coding of Palliative Care at WRH at the current time, particularly in view of high HSMR.

2. Leamington District Memorial Hospital (LDMH) – There are no designated acute care beds for palliative care, although a clustering of patients is attempted. Several staff members have palliative care training. One Hospitalist Physician and one Nurse Practitioner will accept Palliative Referrals and have additional education in Palliative care.


23 discharges


.36 bed equivalents (at 85%)

Palliative Care days of care as percentage of total days of care - .36% of total days of care.

Comment – Many small rural acute care hospitals, including LDMH, report providing a significant amount of care for dying patients. This does not appear to be reflected in the numbers cited above. As indicated above, coding issues exist across Canada as it relates to interpretation of the Z51 code. Further evaluation of these numbers is ongoing.

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3. Hotel Dieu Grace Hospital (HDGH) – Several palliative care rooms are available throughout the facility. A specialist Nurse Practitioner certified in Hospice Palliative Care Nursing and who participated in the Change Foundation Palliative Physician Training Project brings expertise to the patients wherever they are located throughout the facility. Comprehensive palliative medical care is provided by Hospitalist Physicians group.

HDGH has developed and implemented excellent palliative care processes. A Supportive Care Pathway for dialysis patients has been developed based on the level of patient function. This pathway helps the interprofessional team identify and anticipate need for palliative interventions at various stages through the disease trajectory.

The Intensive Care Unit is developing End-of-Life Care order sets and has struck a committee to ensure quality End-of-Life Care in the ICU. The committee has requested a consultation site visit from the MOHLTC‘s Improving End of Life Decision Making in Critical Care Coaching Team.

These processes are constructed on best practice.


255 discharges


12.8 bed equivalents (at 85%)

Palliative Care days of care as percentage of total days of care – 6.3% of total days of care.

4. Chatham/Kent Health Alliance - There are no designated acute care beds for palliative care at either the Chatham site or the Wallaceburg site. The Palliative Supportive Care Consultation nurses are available to consult with patients in regards to EOL care, decision making, pain and symptom management and service availability. Physician Palliative Care is provided by the Most Responsible Physician (MRP).


207 discharges




5. Bluewater Health - Bluewater Health (Sarnia site) operates a 12-bed in-patient Palliative Care Unit, funded as acute medical. This consolidated unit is an open unit to any patient, requiring palliative or end-of-life care, of a physician with active hospital privileges. All patients referred to the Palliative care unit are ―accepted‖ with

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the patients‘ PPS and ESAS determining their priority status. Palliative Care patients are not limited by a cancer diagnosis although it is the predominant population for admission. CAPCE is the standard for education and training for nurses on the Palliative Care Unit. One nurse is CNA certified in Palliative Care. Experts from this unit provide consultation throughout the facility. The CEEH (Petrolia) site has no designated acute care Palliative beds, but can request consultation from the Sarnia site. Medical consultation is provided by a team of three physicians who have additional training in Palliative Care.


201 discharges




Regional Summary

a) Volumes by County (Refer to Table1 which follows)

Total number of Discharges -782 discharges were coded as Palliative in 2007/08 in ESC (discharges not individuals): o 207 in Chatham Kent, o 201 in Sarnia Lambton, o 374 in Windsor Essex (likely an underestimate – see comment below)

Total days of care -10,104 total days of care for patients coded as palliative in ESC: o 2039 in Chatham Kent, o 2980 in Sarnia Lambton, o 5085 in Windsor Essex (see comment below)

Bed equivalents – 32.6 bed equivalents (at 85% occupancy level) o 6. 6 in Chatham Kent o 9.6 in Sarnia Lambton o 16.4 in Windsor Essex (see comment below)

Comment - It is suggested that the relatively low numbers for Windsor Essex may be reflective of under coding of Palliative Care at WRH and LDMH (particularly in view of the high HSMR rating at WRH).

b) Tertiary Palliative Care in ESC - Erie St. Clair has no identified Tertiary Level Acute Care inpatient beds, although all three local EOLC Network committees identified the need for this within each county. The local committees further suggested that, by default, Tertiary Level interventions and consultation for patients requiring complex palliative care will always be needed in all acute care settings. In

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many cases this level of care is already being provided, but is simply not being recognized as such. The committee members indicated that this tertiary function could be strengthened and improved by formally acknowledging this role and clearly identifying the palliative intent. It was further agreed that all three counties required this service in their own acute care facilities rather than consolidating this in only one regional location. (Refer to descriptions of tertiary expertise and tertiary level interventions under Section 2 above – under the title ―Providing Hospice Palliative Care‖.)

c) Emergency Department Avoidance - It is universally agreed that the Emergency Department is not the optimal hospital entry point for patients requiring palliative care. Yet few alternatives exist for patients who require acute care intervention. Bluewater Health in Sarnia has developed processes for direct admissions from the community and other communities are starting to consider such processes.

d) Summary Table– Table 1 below gives a summary of HPC services in AC beds in ESC.

Table 1 – Summary -Acute Care (AC) Hospice Palliative Care (HPC) in Erie St. Clair

Sarnia/Lambton Chatham Kent Windsor/ Essex

Bluewater Health

2 Sites Chatham Kent

Health Alliance

2 Sites

Windsor Regional Hospital Hotel Dieu Grace Leamington District

Memorial Hospital

Description

Model of

Care

Dedicated unit

12 beds

Consultation provided to other

units & sites; med/ surg/ ICU from

Palliative Care Unit

as required

No designated beds at either site

Consultation model

Integrated unit

Oncology unit with cancer

Palliative Care patients and cancer patients receiving

curative treatment

28 beds plus 2 flex beds and 2 emergency hold beds

Non cancer palliative patients dispersed throughout med/

surg/ ICU beds

No designated beds

Several private rooms

with special amenities are used for palliative

care when available

NP consultation for Palliative Care

No designated beds, clustering is attempted

Resource Level

Secondary and

Tertiary level

experts

identified

specifically for

HPC

Clinical resource Nurse—Palliative

certified and CAPCE

trained

CAPCE is standard

for each nurse on unit

Physician expert

team available for

consult and or consult & care

1 FTE Supportive Care Palliative

Clinical

Consultation Nurse

1 FTE Palliative

Supportive Care Coordinator

Physician care —

MRP

No identified

physician champion for

palliative care

No secondary level palliative care expertise identified

within WRH

Expert nurse from WRCC provides PRN consultation

Physician coverage by MRP (oncologists, hospitalists)

with some consultation

available from Hospice physician

Model currently under review

Expert nurse consultations

Physician coverage by MRP (hospitalist, etc.)

No dedicated palliative care staff

1 Hospitalist and 1 Nurse Practitioner will accept

palliative referrals and have

additional education in palliative care and are

available for consultation

1 RN with additional training in palliative care

Volume Z51– 07/ 08

Discharges

Days of Care

Bed equivalents

(85% capacity)

PC days of Care as

% of Total AC

Days of Care

201 discharges

2980 days of care

9.6 bed equivalent

6.4% of total days of care

207 discharges

2039 days of care

6.6 bed equivalents


96 discharges

998 days of care

3.2 bed equivalents

1.1% total days of care (likely an underestimate -

coding issues identified)

255 discharges

3975 days of care

12.8 bed equivalents


23 discharges

112 days of care

0.36 bed equivalents

0.7% of total days of care (may be an underestimate -

coding issues questioned)

Staffing 16.20 FTE

RN & RPN staffing

Allied health

available

RN & RPN staffing

in most acute care

units

Direct care staff not

specifically designated as

palliative

Allied health available

Oncology unit: all RN staffing

Direct care staff not specifically designated as

palliative care but expertise in

full continuum of oncology care

Allied health available

RN & RPN staffing in

most acute care units

Direct care staff not specifically designated

as palliative Allied health available

RN & RPN staffing in acute

care

Direct care staff not specifically designated as

palliative Some allied health available

Costs

Total cost approx. $1.2M

(06/07)

Includes: staffing, meds,

equipment, amortization,

etc.

Recoveries include:

Room differential,

approx $240,000

WSIB & other

recoveries: $90,000

Staffing levels, costs & recoveries specific to palliative care cannot be determined for patients integrated with other patients on a unit.

Staffing, cost & recoveries are integrated within med / surg / ICU cost centres

Process for ER

bypass & Direct

Admissions

Yes No No No No

Education

-Formalized training for staff available from Palliative Pain & Symptom Management consultation Program (Fundamentals, CAPCE, AHPCE,

etc.). -Other education provided on a sector specific basis. Hospice Windsor Essex receives MOHLTC funding to provide training.

Future System – Role of Acute Care in Palliative Care Service Delivery

Role

Acute Care continues to be an important component of Palliative Care service provision now and in the future. Acute Care involvement with the patient and family requiring palliative care will typically occur at the following junctures on the journey:

Diagnosis / Prognosis- Frequently patients are in acute care when they receive the news of a terminal diagnosis and prognosis.

During the course of Palliative Care – Patients may need to receive treatment for an acute medical or surgical condition or for symptom control.

At end of life - As indicated by the statistics cited above, across Canada, over half of deaths occur in hospital. With increased services in the community it is anticipated that a number of these patients will be supported to live their last days in a non-acute setting. However some patients will continue to die in acute care due to a number of legitimate factors including the need for services and interventions not available in other settings.

Community providers, patients and families need to know that if/when a crisis arises and care needs exceed what can be offered in the current setting, there are acute care Palliative Care services available. This assurance helps prevent admissions which are motivated by the fear of ―what if‖. Additionally a PC program in the acute care facility will help facilitate discharge back to the community and will help reduce prolongation of treatment which may not enhance quality of life.

Volumes – How many acute care inpatient beds are required?

No predictive methodologies have been proposed for Acute Care Palliative Bed Equivalents in Ontario (The Health Service Restructuring Commission proposed numbers for Complex Continuing Care beds). The HSMR illustrates that Palliative Care is coded in every acute care facility in Ontario and under coding is cited, however no ―right size‖ indicators are readily available for Ontario.

Projections below are based on the experience of two regions that have well developed Palliative Care programs both in the community and in hospitals:

Fraser Health in British Columbia, Canada – projections are drawn from the Fraser Health Acute Care Capacity Initiative – Plan for Acute Care Palliative Care and are applied to ESC population.92 – These extrapolations work out to a requirement for 7.73 acute care beds / 100,000 population (combining acute and tertiary unit numbers) as well as 7 hospice beds / 100,000 population.

Palliative care Australia – published projections are from – Palliative Care Service Provision in Australia; a Planning Guide.93 This publication recommends a minimum of 6.7 designated palliative care beds / 100,000 population. Palliative Care Australia cites these as minimum levels and states that these numbers will need to be supplemented with additional resources in rural areas etc.

The Australia work indicates that ―these recommendations are for specialist palliative care inpatient beds and assume that as patients are stabilized they will return to more

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appropriate levels of care – discharge to home…aged care facility or other sub-acute clinical environments.‖94 This of course assumes that there is palliative care service developed in other environments. ESC is in the process of developing these programs.

Using Australia‘s methodology and ESC population the projected number of ―specialist palliative care inpatient beds‖ currently required would be:

43 for ESC as a whole o 7.3 for Chatham Kent o 8.8 for Sarnia Lambton o 27 for Windsor Essex

Using the Fraser Health projections the number of acute care beds for ESC would be:

50.3 for ESC as a whole o 8.4 for Chatham Kent o 10.2 for Sarnia Lambton o 31.7 for Windsor Essex

As indicated above, current bed equivalents are:

32.6 for ESC as a whole o 6 in Chatham Kent o 9.6 in Sarnia Lambton o 16.4 in Windsor Essex (this is considered an underestimate related to coding

issues)

Volume Recommendation: Patients requiring palliative care will continue to be admitted to acute care facilities in ESC. It is generally agreed that due to coding ambiguities, the current numbers are an underestimate, particularly at WRH and LDMH.

Assuming that community programs continue to develop expertise and provide palliative care, it is recommended that a minimum of the following acute care bed numbers be projected for ESC:

45.57 palliative care bed equivalents for ESC as a whole o 7.63 for Chatham Kent o 9.24 for Sarnia Lambton (This number is slightly higher than the recommended

number of beds, 6 to 8, as cited in the ―Smith report‖).95

o 28.7 for Windsor Essex

It is not recommended that these beds be considered additional acute care beds. These patients are already in acute care. What is needed (and in many cases currently exists) is:

a recognition that these patients require Palliative Care,

implementation of a formalized program of Palliative Care with a defined model and defined expertise,(refer to further discussion of this comment below),

explicitly embracing the role of Tertiary HPC beds within each county, (refer to further discussion of this comment below).

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Summary Table Projected Volumes

Table 2 below summarizes projected volumes for acute care bed equivalents for HPC in ESC.

Model of care

Which model of inpatient care is best practice? Much debate has occurred over which model of care is most effective and most cost efficient. It is frequently argued that best practice is a dedicated unit96, 97 but it is often assumed that this model is more expensive. Due to case costing ambiguities (described above), it is difficult to accurately compare costs of a dedicated unit with other models. The Canadian Hospice Palliative Care Association (CHPCA) states, ―While a specialized environment can be created ‗as needed‘ in the patient‘s environment, it is frequently more efficient ….to have a number of beds…in one location‖.98 The best configuration of the Palliative Care Beds at each Acute Care site is a matter for each facility to evaluate. What is most important is that each facility acknowledges that patients requiring Palliative Care are in its facility and that some model of palliative care delivery needs to be developed to effectively and efficiently address these patients‘ care needs.

As described previously each acute care facility in ESC has developed or is developing its own unique model of care.

Sarnia Lambton EOLCN local committee strongly supports a dedicated unit model of care.

Table 2 - Projected Need

Acute Care Bed Equivalents

(Assumes ongoing development of Community Based Programs

Residential Hospice, CCC & LTC Palliative Care Programs)

Australia Fraser Health Recommendation for ESC

2009 Assuming opening of Residential Hospice Sarnia

Lambton & ongoing Development of Community Supports

Beds/ 100,000

Population 6.7 7.66 7

Projected Number of Beds

Using Chatham/ Kent Population of 109,000

6.7 x 109,000

100,000

=7.3

7.66 x 109,000

100,000

=8.34

Includes 2.18 tertiary beds

7 x 109,000

100,000

= 7.63


Using Sarnia-Lambton

Population of 132,000

6.7 x132,000

100,000

=8.8

7.66 x 132,000

100,000

=10.11


7 x 132,000

100,000

= 9.24


Using Windsor/ Essex


6.7 x 410,000

100,000

=27

7.66 x 410,000

100,000

=31.4


7 x 410,000

100,000

= 28.7


Using Total ESC


6.7 x 651,000

100,000

=43

7.66 x 651,000

100,000

=49.86


7 x 651,000

100,000

= 45.57

Explanation of

Methodology

Australian recommendation

is for specialist palliative care

inpatient beds.

F H projects the following

(2010) needs for a population

of 1.5 million,

30 Tertiary beds, or

2 per 100,000

85 Acute care beds

Total of 115 beds (plus

Hospice beds)

Extrapolation for ESC

combined Tertiary & Acute

beds

Difficult to evaluate current PC Acute Care

levels in ESC due to under coding

(especially at WRH).

Current coded numbers show:

6 bed equivalents in Chatham

9.6 in Sarnia Lambton

16.4 in Windsor Essex

Tertiary Care and Emergency Department Avoidance

No Tertiary Hospice Palliative Care Unit (THPCU) is identified in ESC and by default each acute care facility assumes this role. Each acute care facility in ESC possesses the specialized services necessary to fulfill a tertiary role. Acute care facilities in ESC have an opportunity to create local best practice by explicitly assuming the role of a Tertiary Hospice Palliative Care Unit regardless of the current distribution of beds. Most of the interventions required of a tertiary care centre are already conducted within the acute care facilities – what may be lacking is the acknowledgment that these interventions are for palliative intent - to control pain and other symptoms- rather than to cure the underlying condition. It is expected that by articulating a model of care and by explicitly embracing a tertiary care role, increased awareness/expertise will be developed thereby enhancing identification of patients requiring Palliative Care, (which will indirectly improve the HSMR).

The Emergency Department currently is the most common hospital entry point for patients who require acute care palliative care. Processes should be developed to bypass the Emergency Department and expedite care and discharge.

Development of / Identification of expertise- CHPCA states ―…interdisciplinary teams of secondary hospice palliative care experts must be readily accessible in every setting where patient and families receive care.‖99 Each acute care facility should develop and identify such expertise.

Issues in Acute Care Palliative Care

Current identified issues in Acute Care settings in ESC include:

Confusion about the role of acute care in the palliative care system and models of care:

While the emphasis of the EOLC strategy is to decrease the percentage of deaths that occur in acute care by increasing the options for care locations and while there is general agreement that care options need to be increased in the community, the fact remains that in Ontario, across Canada and throughout the developed world, patients requiring Palliative Care do and will continue to require care in acute care. Hence there is a need for each acute care facility to develop programs and processes related to how to identify, care for and appropriately discharge these patients.

Inconsistent coding practices for Palliative Care,

Inadequate availability of palliative care experts (including physicians).

Recommendations for Acute Care

It is recommended that each acute care facility in ESC:

Clearly define its model of palliative care delivery including identification of key secondary level experts, (Sarnia Lambton EOLCN local committee requests that it be noted that they strongly support a dedicated unit model of care for Bluewater Health Sarnia site with a consultation model at Petrolia site).

Explicitly articulate its Tertiary Care role within the model of care delivery for Palliative Care,

Develop and implement admission and discharge processes for palliative care patients requiring hospital admission; such processes would facilitate Emergency Department avoidance and provide expedited care and discharge (refer to processes developed at Bluewater Health),

Develop and implement Palliative Care processes for renal disease and other non-cancer diagnoses (refer to processes at HDGH)

Continue to examine (and improve if necessary) practices for coding of Palliative Care to insure consistency and measurability (i.e. Z51.5),

Consider, with the LHIN, the bed equivalent volume projections for each county,

Continue to actively participate in cross sector integration activities including the End of Life Care Network.

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Hospital – Complex Continuing Care


Complex Continuing Care (CCC) facilities ―provide continuing and specialized services to medically complex patients, who usually have multiple health problems and/ or functional impairments. There is a variety in the types of services provided, which includes …… palliative and end-of-life care; and also support to families with respite care needs‖.100

CCC patients are coded separately from acute care patients. An extensive data set is available relating to CCC patients in Ontario.101

However there are few available published studies or reports that specifically describe and/or compare palliative care service delivery in CCC facilities across Ontario.

The Hospital Report Complex Continuing Care - 2007 compares, by LHIN region, the percent of CCC patients who died in CCC beds, as a means of helping depict differing CCC services and populations. Erie St. Clair shows 32% of CCC patients died in CCC beds during the reporting period of 2005-2006, as compared to the provincial mean of 29%. This report suggests that hospitals with a higher proportion of patients dying in CCC beds are providing end-of-life care.102 It would appear that ESC may be slightly ahead of the province as a whole in terms of utilizing CCC beds as an alternative to Acute Care for end of life care.

A study of the younger population of patients in CCC beds demonstrates a significant proportion of cancer patients.103

Ontario‘s Cancer System Quality Index showed that 15% of patients who died of cancer in 2003, died in Complex Continuing Care.104

The ESC LHIN region has 7% of the total number of CCC patients in Ontario with 4 facilities providing care.

Models of care

Models of palliative care in CCC vary across the province, from a dedicated unit to no defined model of care. No data is available to indicate how many patients dying in CCC received palliative care.

Volumes used to reflect HPC need

Although a significant percent of Ontario‘s population die in Complex Continuing Care beds there are few available specific measures related to palliative care service delivery in these beds. For the purpose of this report, the number of deaths in CCC will be used to give insight into the need for end-of-life care in CCC populations.

Description of CCC Palliative Care in ESC – current

1. Windsor Regional Hospital - A 20 bed CCC Palliative Care Unit opened in June 2005 and is located on the Western campus in Malden Park. Eligibility for admission is based on anyone who is 18 yrs of age or older who has complex medical needs that cannot be met except in a Complex Continuing Care unit. Diagnosis of a terminal illness (Cancer, End Stage Renal Failure, End Stage Congestive Heart Failure, etc.) is typical. Admission can be related to pain and symptom management issues that are complex or related to any number of complex issues which prevent

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the patient from being managed at home Several nursing staff have advanced Palliative Care training. Medical consultation is provided by a specially trained physician who is also the Medical Director of the Long Term Care beds which are co-located on site.

This unit is not located with acute care services and as such must limit some of its medical interventions. For example, blood transfusions are not provided in the CCC beds at Malden Park.

Direct admissions from the community are accepted thereby avoiding Emergency Department visits.

2. Leamington District Memorial Hospital - A consultation type of model of palliative care is employed

3. Chatham Kent Health Alliance (CKHA) - A consultation type of model of palliative care is employed at CKHA in conjunction with an integrated unit approach. Chatham site CCC has a clustering of 6 beds in a ―Palliative Pod‖ with augmented staffing levels. These 6 beds are co-located with other CCC beds.

4. Bluewater Health - A consultation type of model of palliative care is employed. Bluewater Health CCC palliative care beds are located on the same floor as the acute care Palliative Care unit thereby facilitating consultation from the Palliative unit.

ESC CCC Volumes - In total in 2006/07 506 deaths occurred in CCC beds in ESC. This represents approximately 10% of deaths in ESC.

Summary description – Table 3 below gives a summary of HPC services in CCC beds in ESC.

Table 3- Summary - Complex Continuing Care Hospice Palliative Care (HPC) in Erie St. Clair

Sarnia-Lambton Chatham/ Kent Windsor Essex

Bluewater Health

2 Sites Chatham Kent Health

Alliance

2 Sites

Leamington District

Memorial Hospital

Windsor Regional

Hospital

Description

Model of Care

Consultation model

Dispersed beds

No dedicated

Palliative Care beds

Clustering of 6 beds at

Chatham site –integrated

unit with other CCC beds

- 2 beds at Wallaceburg site

Consultation Model

Dispersed beds

No dedicated Palliative Care

beds

Dedicated unit

Resource Level

Secondary and

Tertiary level

experts identified

specifically for

HPC

Consultation available

from Palliative Care

Unit as required

Total Number of CCC

beds in Sarnia

Lambton—82

Consultation

from Pain & Symptom

Management Dept.

Total CCC beds in CK—

68

No dedicated Palliative Care

beds

Total Number of CCC beds—

19

1 Hospitalist and 1 Nurse

Practitioner will accept

palliative referrals and have

additional education in

palliative care available for

consultation

I RN with additional training

in palliative care

20 beds dedicated to

Palliative Care

Total Number of CCC

beds—144

Many staff with

advanced training

Volumes

Total # of deaths

in all CCC beds

is used as an

indicator of HPC

need

104 deaths in all CCC

beds (06/ 07) 131 deaths in all CCC

beds (Chatham site plus

Wallaceburg site) (06/ 07

34 deaths (06/ 07) 237 deaths (in all CCC

beds not just 20

dedicated beds) (06/ 07)

Staffing Staffing

numbers are

not

specifically

designated for

PC

Staffing for 6 bed pod is

augmented relative to

other CCC beds

Staffing numbers are not

specifically designated for

PC

No dedicated palliative care

staff;

28 FTE

2:1 ratio of RPN to

RN

Costs

MOHLTC funding in global budget

Specific funding for Palliative Care is not typically designated.

Defined Process for

Emergency Bypass &

Direct Admissions

No No No Yes

Education

Formalized training for staff available from Palliative Pain & Symptom Management consultation

Program (Fundamentals, CAPCE, AHPCE, etc.).

Other education provided on a sector specific basis.

Hospice Windsor Essex receives MOHLTC funding to provide training, support and counselling services

– refer to community support service tables (CSS)

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Issues in Palliative Care in Complex Continuing Care

The following are reported as issues in Palliative Care in Complex Continuing Care settings:

Few direct admission opportunities (exception is WRH – Western Campus),

No specific Palliative Care information is readily available despite the extensive data collection via the CCRS.

Future System – Role of Complex Continuing Care in Palliative Care Service Delivery

An opportunity exists to enhance the volume and intensity of PC services in CCC facilities. Since 10% of deaths in ESC occurred in CCC it is expected that a formalized program of palliative care be available for these patients and families in each facility.

Further opportunities may exist for direct admissions to CCC beds from the community, (although occupancy levels near to 100% may make this difficult).

Recommendations for Complex Continuing Care

It is recommended that each Complex Continuing Care facility in ESC:

Clearly define its model of palliative care delivery including identification of key secondary level experts,

Explore the possibility of developing admission processes for palliative care patients requiring hospital admission; such processes would facilitate Emergency Department avoidance and provide expedited care and discharge (refer to processes developed by WRH – Western Campus),

Continue to actively participate in cross sector integration activities including the End of Life Care Network,

Work with LHIN CCC partners to extract from the CCRS indicators relevant to the patients’ Palliative Care needs.

Long Term Care Homes


Long Term Care Homes provide care to individuals who no longer are able to live independently and have fully utilized all available resources and services within the community.105

Increasingly Long Term Care Homes (LTCH) are the location of care and death for older individuals with chronic illness.106 In Canada it is reported that 39% of deaths occur in LTCH.107 It is reported that most residents of a LTCH die in that home. Most residents in LTC Homes are over the age of 65 with the average age at admission typically being greater than 80 years of age.108

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Ontario‘s Cancer System Quality Index showed that 5% of patients who died of cancer in 2003, died in LTCH.109

Models of care

Models of Palliative Care service delivery in LTC Homes vary considerably across Ontario.

Volumes used to reflect HPC need

Although a significant percent of Ontario‘s population die in LTC Homes there appear to be few specific reported measures related to palliative care service delivery in these beds. For the purpose of this report, the ―number of deaths in LTCH‖ will be used to give insight into the need for end-of-life care in LTCH populations.

Description of Palliative Care in LTC Homes in Erie St. Clair

Models of care

All LTC homes in ESC care for dying patients. No homes in ESC have a specific unit or zone which is dedicated to the care of dying patients. Several homes have identified experts within their facility. Homes may access the Palliative Pain and Symptom Management Consultation service for mentoring and education of staff.

An excellent clinical standards project was implemented in two LTC homes in Leamington and has been considered an example of best practice.

Volumes

An estimated 1343 deaths occurred in LTC Homes in ESC in 2006/07; 271 in Chatham Kent, 334 in Sarnia Lambton and 738 in Windsor Essex. This is approximately 20% of all deaths in ESC.

Summary description – Table 4 below gives a summary of HPC services in Long Term Care Homes in ESC.

- 36 -

Table 4 - Summary of Hospice Palliative Care (HPC) Services LTCHs in ESC

Sarnia/Lambton Chatham Kent Windsor /Essex

Description

Model of Care

Models of Palliative Care vary significantly

Beds typically not dedicated to Palliative Care only – some specialty areas/rooms available for EOL care

Resource Level

Secondary and Tertiary level experts identified specifically for HPC

Wide variation in expertise

No tracking of secondary level expertise by Home

Total LTCH beds in Sarnia Lambton -1044

Total LTCH beds in Chatham Kent -847

-Total LTCH beds in Windsor Essex -2306 -Two LTCHs in Leamington served as pilot sites for a best practice clinical standards project

Volumes (06/07)

Approximate total # of deaths in all LTCH beds is used as an indicator of HPC need

Approximately 334 deaths in LTC beds



Staffing

No designated Palliative Care staff

Variable levels of training

Funding MOHLTC funding—Palliative Care not specifically designated

Education

Formalized training for staff available from Palliative Pain & Symptom Management consultation Program (Fundamentals, CAPCE, AHPCE, etc.).

Other education provided on a facility specific basis.

Issues in LTCH

Increasingly LTC Homes are admitting and keeping sicker patients.

Key issues typically identified by LTC Homes in ESC are:

Inadequate staff time to provide the intensity of care patients require at end of life,

lack of acute symptom management services within the Home thereby necessitating emergency department visits.

need for more education related to End of Life Care.

Future System – Role of Long Term Care Homes in Palliative Care Service Delivery

Long term care homes will continue to play a vital role in the care of the dying. It is currently unclear what percentage of LTC patients move out of that setting to receive terminal care in hospital or to receive care in the emergency department. With augmented services and education LTC Homes may be able to increase the number of patients who remain in that setting.

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Recommendations for Long Term Care Homes

It is recommended that each LTCH in ESC:

Clearly define its model of palliative care delivery including identification of key secondary level experts,

Continue to actively participate in cross sector integration activities including the End of Life Care Network.

Implement the Palliative Care best practice standards project (refer to project at two Leamington Homes).

Residential Hospices


Across Canada and internationally residential hospices are increasingly being viewed as a necessary component of an integrated Palliative Care program.110 111 112 Funding for residential hospices was one of the strategic initiatives of Ontario‘s MOHLTC‘s End-of-Life Care Strategy. Despite the surge in interest and availability of Residential Hospices, models of care and funding vary greatly, making cross-jurisdiction comparisons difficult.

Models of Care

Two Canadian examples of residential hospice operational models of care (in terms of funding and location) are described below:

Fraser Health Authority (FHA) promotes a contracted service provider model with mostly freestanding hospices. FHA funding covers core staffing and operations. 113 Refer to Appendix 4 for excerpt from Fraser Health Hospice planning document which outlines operational models

Edmonton Capital Health Authority locates most of its Hospice beds in specialty units located in Continuing Care facilities with enhanced interdisciplinary, nursing, physician and medication support.114

In Ontario, operating funding for Ontario‘s freestanding hospices was intended to cover direct service costs of the clinical staff. However experience thus far has indicated that funding does not completely cover for direct care provision with a shortfall of approximately $37,000 per Hospice bed per year. All costs for administrative and other support staff are offset by fundraising and other local activities.

The Ministry of Health and Long Term Care (MOHLTC) in Ontario has assisted with capital cost with a 2007/2008 announcement of $14M to assist with infrastructure etc. of 10 residential hospices.

Clinical Models of Care in Ontario are evolving. Some residential hospices hire their own staff, others contract staff through CCAC. Typically in Ontario, thus far, Residential Hospices are in stand-alone facilities and are not co-located with other 24/7 services. Many Residential Hospices also provide some level of day programming.

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Typical Roles for Residential Hospices

In North America, Residential Hospices provide care to patients with varied levels of acuity and complexity ranging from short term sub-acute care to longer term residential care. Some provide respite care. In Fraser Health Residential Hospices are resourced to provide a sub-acute level of care ―aimed at patients who require frequent adjustments to medications for symptom management, and psycho-social-spiritual care of patients and their families during the final days and weeks of life. Patients admitted to Hospice Residences require longer stays, with less intensive levels of medical and nursing care than in a hospital setting. They generally do not require acute care investigations and treatments. They require more specialized care than individuals in residential care…..Hospice patients that require treatments for symptom management (for example, blood transfusions, radiation treatments, paracentesis, thoracentesis, IV bisphosphonates) are transported to a hospital Ambulatory Care unit for treatment.‖115

Refer to Appendix 4 for excerpt from Fraser Health Hospice planning document which describes typical roles for Residential Hospices.

Admission criteria for Ontario’s residential hospices typically include the following:

Valid OHIP

Must be eligible for CCAC nursing and personal support services

DNR and/or Home Pronouncement of Expected Death in the Home (EDITH),

Informal caregiver support exceeds what can be provided in the client‘s own home setting

Client is not eligible / appropriate to receive care in other End-of-Life Care settings.

The Hospice of Windsor Essex County - Residential Hospice has refined and simplified these criteria by posing these two eligibility questions to help clarify patient type:

Could the patient‘s care-needs be met in his/her own home with the available CCAC services? (Yes)

Is there sufficient informal caregiver support available to safely care for the client at home? (No)

These criteria underscore the current role of Residential Hospices in Ontario – that being as a substitute for home when informal care support is not sufficient.

Discharge criteria include the following:

Client condition or circumstances changes so that the client can safely be managed at home,

Informal caregiver support becomes available to adequately care for the client at home,

Another setting becomes more appropriate i.e. acute care, CCC.

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Description of Residential Hospice Palliative Care in Erie St. Clair

Hospice of Windsor / Essex - The Windsor/Essex Residential hospice opened in May 2007 with 8 beds and provides care 24 hours 7 days a week for patients who require end-of-life and palliative care services. The Residential Hospice Program in Windsor Essex was assumed by an organization which began as a volunteer movement and evolved to an integrated program of Day Programs and Community Support. Due to its connection with these other programs, the Residential Hospice in Windsor Essex has a significant advantage over many new hospice projects across Ontario; this advantage relates to the synergy of programming that evolves from the global budget that this hospice has developed over its 29 years of operations. This budget accesses funds from multiple sources including: Community Support Services –MOHLTC funding (i.e. Volunteer Hospice Program; Caregiver Training, Information and Education Program; Caregiver Support and Counseling Program), Contract with CCAC for social work, MOHLTC SMI funding for counseling services, grants and partnership agreements with hospitals and Regional Cancer Centre etc. In most communities (including Sarnia Lambton) even the Volunteer Hospice Program funding does not rest with the organization that is developing the Residential Hospice program.

Volumes – Volumes cited below are for the first 11 months of operation (May 2007 to March 31, 2008).

Hospice Windsor Essex -Residential Home First 11 months

Number of Cancer Admissions 79

Number of Non Cancer Admissions 9

Number of Deaths 75

% of patients admitted from home 49%

% of patients admitted from hospital 43%

% of patients admitted from LTCH 8%

Average Length of Stay 20.3 Days

Discharges home 4

Discharges to Malden Park 1

Occupancy Rate 81%

Number of Days on Waitlist 4.4 days

Findings /Discussion of Volumes - The number of admissions and deaths are high. The Length of Stay is surprisingly low, thus indicating a high turnover of patients. The Director of Care at the Residential Hospice has indicated that many of the residents have come from home expressing significant satisfaction with care in the home. These patients indicate that although care was excellent, they do not wish to actually die at home. These patients and family report peace of mind in being able to apply to the Residential Home as a backup plan for the last days. Fortunately the residential hospice has been able to admit these patients with a minimal waiting time.

- 40 -

St. Joseph’s Hospice of Sarnia – The hospice for Sarnia Lambton is slated to open in 2009 with 10 beds.

Chatham /Kent – No plans are underway for a Residential Hospice.

Summary description – Table 5 below gives a summary of Residential Hospices in ESC.

Table 5 - Summary – Residential Hospices in Erie St. Clair


St. Joseph’s Residential Hospice

(Projected to open Spring 2009).

No

Resi

den

tial

Ho

spic

e B

ed

s A

pp

rove

d. N

o p

lan

s u

nd

erw

ay. Hospice of Windsor Essex

Opened May 2007

Description

Model of Care

Dedicated Palliative Care beds in a stand-alone setting

Day programs provided in adjacent building

Dedicated Palliative Care beds in a stand-alone setting

Day programs provided in adjacent building

Resource Level Secondary level expertise

10 beds

Expectation is that all staff will have secondary level HPC expertise within their own professional scope of practice

Clinical Director will have specialist level nursing expertise

Physician specialist level expertise

8 beds

Almost all staff have secondary level HPC expertise within their own professional scope of practice.

Clinical Director –specialist level nursing expertise

Physician specialist level expertise

Volumes

180 admissions per year—projected 104 admissions

92 deaths (in first 13 months of operation) (May 1, 07 to May 31 08)

Staffing

Projected Residential Hospice 24/ 7 staffing

1 PSW

1 RN Total Staffing: Approximately 10.5 FTE plus Director of Care (FTE # for Residential Hospice only; day program staff not included)

CCAC provides allied health

Residential Hospice 24/ 7 staffing: 1 PSW 1 RN Total Staffing: Approximately 10.5 FTE plus Director of Care (above numbers are for Residential Programs & do not include day program staff) CCAC provides Allied health

Costs Fundraised $ for > 50% of costs

MOHLTC funding approximately $580,000.

Total budget approx 1.25M for Residential Hospice

CCAC provides patient supplies (as if patient were in own home)

Fundraised $ for large % of costs

MOHLTC funding approximately $500,000.

Total budget approx $975,800 for Residential Hospice

CCAC provides patient supplies (as if patient were in own home)

Education

-No funding for education; program not organizationally linked with Volunteer Hospice Program (see discussion below)

- -Formalized training for staff available

from PPSMCP (described below).

-Volunteer training partially funded via Volunteer Hospice Program. Hospice Windsor also receive funding to provide training, support and counseling services (described below). -Formalized training for staff available from PPSMCP (described below).

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Future System – Role of Residential Hospices in Palliative Care Service Delivery

Role – level of acuity

It is expected that the level of intensity of care currently provided in the residential hospice environment (as described in criteria above) will continue to be the norm. Some Residential hospices across Ontario are experiencing pressure to provide more intensive interventions. The general consensus among Residential Hospice providers seems to be that they would like to have funding to cover current staffing costs, but they do not see their care provision level becoming more intensive.

The Manager of one Residential Hospice in Ontario states ―We do not want to be a hospital doing all the interventions and procedures that a hospital does. We want to provide a homelike setting. Many palliative care patients need hospital interventions and those should be done in hospital.‖

It is hoped that the role of Residential Hospices will continue to be recognized and availability will be expanded so that each county in ESC will have access to Residential Hospice beds.

Volumes – How many residential hospice beds are required?

Currently there is no Ontario formula to determine recommended numbers of hospice beds per population. The projections used by Fraser Health (British Columbia) would suggest that ESC should have 45.57 hospice beds

Fraser Health projects the need for 7 hospice beds per 100,000 in addition to acute care beds. 116

Projected need – Table 6 below gives projected needs for residential hospice beds in ESC.

- 42 -

Table 6 - Population based calculation and current status Residential Hospice beds - Erie St Clair

Calculations for ESC 2009 Based on Fraser Health numbers

Current status ESC

Beds/ 100,000 Population 7 No ratio used

Number of Beds Using Chatham/ Kent Population of 109,000

7 x 109,000 100,000 =7.63

0

Number of Beds Using Sarnia/Lambton Population of 132,000

7 x 132,000 100,000

=9.24

10 beds approved –currently under construction

Number of Beds Using Windsor/ Essex Population of 410,000

7 x 410,000 100,000 =28.7

8 beds approved and open

Number of Beds Using Total ESC Population of 651,000

7x 651,000 100,000 =45.57

18

Explanation of Methodology FH estimated the need for 7 beds per 100000 population based on the assumption that one third of patients registered on the HPC program would die in hospice, This assumption has been validated.

Using the currently approved number of beds and the population of each county the following is the number of approved beds per 100,000 population.

Lambton the ratio would be 7.57 beds/ 100,000 population.

Essex the ratio would be 1.95 /100,000.

Kent has no approved beds The residential hospice sector is evolving in Ontario. No defined population based recommendations are yet available.

Issues in Residential Hospice Palliative Care in ESC

The key issue identified is the funding shortfall for Residential hospices in Ontario. Over 50% of costs need to be fundraised. Sustainability of residential hospices under this funding formula is questioned.

There are currently no definitive plans for a Residential Hospice in Chatham Kent. Funding issues appear to be a limiting factor.

Recommendations related to Residential Hospice:

Continue to recommend, at a provincial level, that funding be augmented for Residential hospices,

Encourage and assist any interested community organization in the Chatham/Kent County, to pursue exploration of a Residential Hospice commitment.

Explore innovative models.

Continue to enhance integration of Residential Hospices into the overall system of palliative care.

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Community Care Access Centre (CCAC) and Community Service Provider Agencies (CSPA) – Care in the Home


Throughout Canada and internationally there is recognition of the importance of providing palliative care for patients in their own home.

Frequently cited polls indicate that a high percentage of Canadians state that they would prefer to die at home.117 One of the specific objectives of Ontario‘s End-of-Life Care Strategy is to shift care of the dying from acute settings to alternative appropriate settings of the patient‘s choice.118

In terms of measurement of the system as a whole, an increase in Palliative Care provision in the home is used as a proxy indicator for improvements in the system as a whole.

In 2004, in the 10-Year Plan to Strengthen Health Care, governments recognized the need for hospice palliative care services in the home. In that plan, the federal, provincial and territorial First Ministers made a commitment to ―provide first dollar coverage by 2006 for certain home care services [including] case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life‖.119

Recently the Canadian Hospice Palliative Care Association conducted a cross Canada review of how Hospice Palliative Care in the home measures up against Pan-Canadian Gold Standards. Improvements are evident, but further work is recommended.

Ontario‘s MOHLTC‘s End of Life Care Strategy invested in and supported a number of initiatives to enhance patients‘ ability to stay in the home and identified CCACs as responsible for preparing regional Service Delivery Plans in response to the EOLC Strategy.

There is a significant body of evidence indicating the importance of palliative care in the home. Results from a recent Ontario specific study, (which used administrative data of provincial service use for adult CCAC end-of-life care clients admitted from April 1, 2005 to December 31, 2006 who died before March 31, 2007) show specific positive outcomes. Impacts of CCAC services on outcomes include the following:

CCAC end-of-life care clients who received greater than 3 hours / week of nursing were less likely to be hospitalized or visit the ER in the last 2 weeks of life

Hospitalizations and ER visits were halved for clients receiving more than 7 hours / week of nursing; their likelihood of dying in hospital was also halved

Only those end-of-life care clients with greater than 7 PSW hours / week showed a significant reduction in hospitalization (40%) and ER visits (25%) in the last 2 weeks, and avoided death in hospital (50%)

Clients referred more than a month before their death showed reduced odds of bad outcomes for any of the three outcomes; reductions were bigger the earlier referrals were made.

In summary, to avoid hospitalizations and ER visits in the last 2 weeks of life and to avoid dying in a hospital, the number of hours of home care service used makes a difference as does early referral.120

Models of care

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Many CCACs have specially trained dedicated case mangers for Palliative Care; this model is considered best practice.

Some Community Service Provider Agencies (CPSA) have identified clinical specialists on staff, including specialists in Palliative Care. Several of the CSPAs central offices have dedicated considerable resources to developing Palliative Care standardized practices.

Typically each CSPA has its own unique charting approach and standards. One patient may receive care from several agencies. For example the Registered Nurse (RN) may be from one agency, shift nursing may be from another agency and the Social Worker from a third. Each of these individual agencies typically has its own chart. In the Champlain LHIN region all CSPA have agreed to use one chart. This is a best practice example.

Volume Definition

The volume code used in this report to assess HPC provision in the home is MIS code 95 - End of Life. For patients coded MIS 95, the goal is to alleviate symptoms, reduce pain and provide support for client‘s in the last stages of their illness with high need for medical support. These are individuals whose health condition is not responsive to curative treatment and who are dying. Care is time limited, usually less than 6 months.

MIS code 95 is one of the CCAC client classifications. Two other classifications are: Maintenance and Long Term Supportive. Clients in these last two categories are often living with chronic diseases and frequently it is difficult to determine when a client actually has become End of Life vs. Maintenance or Long Term Supportive. This is especially so for clients living with diagnosis related to cardiac, respiratory and diabetic entities. These clients experience exacerbations of their disease resulting in acute interventions / changes in medical regimes which provide them with more time living with the disease. This exacerbation/remission course of the disease process makes estimation of length of life difficult to determine. Therefore by using only the MIS 95 data we may be missing a number of Palliative Care clients.

Description of CCAC / CSPA Palliative Care in ESC –current

Model of Care and Palliative Care practices

Erie St. Clair CCAC and CSPAs demonstrate best practice in many aspects of their model of care and Palliative Care practices, including:

Dedicated speciality CCAC case managers,

Specific expectations re. service provider agency expertise in Palliative Care,

Leader in province in terms of outcomes and continuity of use of standardized Palliative Care Assessment tools as reported by CCO‘s Cancer Symptom Management Collaborative,

Community Service Provider Agencies and CCAC are all key participants of the ESC EOLCN,

Contract Palliative Care social work support is from Hospice –Windsor Essex

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ESC CCAC and CSPAs have implemented a number of initiatives promoted through the EOLC strategy including:

Symptom Response Kits,

Expected Death in the Home protocols,

CCAC support for the Residential Hospice initiative including:

o Additional financial support (above MOHLTC stipend) for first year operating costs for Residential Hospice in Windsor Essex,

o Continuing as a support in terms of flow through agency for funding, RFP process and pre-screening for admissions in Windsor Essex,

o Building committee membership for Sarnia Lambton.

CCAC ongoing support for the End of Life Care Network and Director.

CCAC leads a number of other Palliative Care initiatives in ESC including:

supporting and housing a physician consultation service at Sarnia/Lambton location (see below under ‗Outpatient Palliative Care Clinics‘),

supporting a joint venture with the Windsor Regional Cancer Centre to fund an oncology community liaison nurse locate at the WRCC. This role has been in place for approximately 15 years. This nurse facilitates communication between the oncologist and the community nurses.

supporting the development of a joint Service Provider collaborative EOL chart for in home palliative care patients.

supporting the development of multidisciplinary, bi-weekly palliative care rounds to discuss challenging and complex pain and symptom management issues for SL CCAC clients

CCAC is applauded for the leadership role it has taken in advancing Palliative Care system development across the region. Currently the CCAC is supporting the development of the expert team in Sarnia Lambton (funding from A@H initiative), the EOLC Education Initiative (funding from A@H) as well as supporting the EOLCN and numerous other initiatives.

Volumes

In 2007 CCAC reported providing care to 1076 End of Life Care clients:

Windsor / Essex- 711 clients;

Chatham/ Kent –145,

Sarnia/Lambton 220 clients.

Comment re. Metrics: CCAC has indicated that this is likely an underestimate as data quality issues exist with categorizing patients as End of Life (MIS 95).

Summary description – Table 7 below gives a summary of In Home Hospice Palliative Care (HPC) in Erie St. Clair.

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Table 7 -Summary of In Home Hospice Palliative Care (HPC) in Erie St. Clair Services Provided by CCAC and their Community Service Provider Agencies (CSPA)


Description

Model of Care a) Clinical model b) Regional leadership

a) Clinical model across three counties

Dedicated speciality CCAC case managers,

Frontline care is provided by CSPA staff

CCAC articulates specific expectations re. service provider agency expertise in HPC b) Regional Leadership

Provides leadership and support for regional Palliative Care and EOLCN.

Resource Level


No upper limitations on number of patients cared for in-home

Dedicated CCAC Case Managers – typically secondary level HPC experts

CSPA have varying levels of secondary level expertise

Leader in province in terms of outcomes and continuity of use of standardized Palliative Care Assessment tools as reported by CCO’s Cancer Symptom Management Collaborative.

Volumes

MIS code 95 (06/07)

220 clients 145 clients,

711 clients;

Staffing

Palliative Care/ Oncology Dedicated Staff: -3.5 FTE Case Managers

-1 FTE Team Assistant

Palliative Care/ Oncology Dedicated Staff: -3 FTE Case Managers -1 FTE Team Assistant

Palliative Care/ Oncology Dedicated Staff:

-8 FTE Case Managers -3 FTE Team Assistant

Costs

MOHLTC funding Approximately $994,601. (06/ 07)

MOHLTC funding Approximately $683, 567. (06/ 07)

MOHLTC funding—Approximately $2,597,734.00 (60/ 07)

Additional supports Supports physician clinic on site at CCAC building.

Jointly funded nurse liaison position (located at WRCC)

Summary of Other HPC Services available for In-Home patients

HPC Physician Support (see description in sections which follow)

Palliative Physician Specialists make house calls

Some support for orphan patients from specific physicians

Consultation service coordinated through Hospice of Windsor Essex

Other HPC supports in home

Volunteer Hospice Program (see description in sections which follow)

May receive service from disease specific associations etc. (e.g. ALS, Lung Association, Cancer Society etc.)

Clinics, Day Programs, Outpatient Services, Regional Cancer Centres

Mobile (or transportable) patients being cared for in their homes will access a number of Services on an outpatient basis. These services which are specific to HPC are described in the sections which follow)

Education

Formalized training for staff available from Palliative Pain & Symptom Management consultation Program (Fundamentals, CAPCE, AHPCE, etc.).

Other education provided on a sector specific basis.

Hospice Windsor Essex receives MOHLTC funding to provide training, support and counselling services – refer to community support service tables (CSS)

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Future System – Role of CCAC and Community Services Provider Agencies in Palliative Care Service Delivery

Volumes

It is expected that HPC volumes in ESC CCAC will increase by at least 2% this next fiscal year.

Role

The expectation is that the scope and intensity of palliative care provision in the community will increase. The initiation of the expert team(s) (funded through A@H initiative) will facilitate this.

It is expected that CCAC will continue to provide an enhanced role as ―sector connector‖.

CCAC will serve as the lead funding agency for the End of Life Care Education Program as described in the Aging at Home initiative. CCAC in conjunction with the North Lambton Community Health Centre will lead the development of the Expert Team for Palliative Care in Sarnia Lambton as described in the Aging at Home initiative.

Issues related to Palliative Care Provision in the Home

Identified issues include:

Poor access to palliative physician and other experts:

o Need for specialized local teams across the region, which are well integrated with CCAC / CSPA system and build on current expertise in each sector/service provider agency and have clear accountabilities to the broad system of Palliative Care providers – For seniors, this need will be addressed through the new funding from the Aging at Home initiative.

Expensive medications for patients in the community.

Inadequate funding for equipment rentals for patients at home (e.g. – bed rentals are time limited etc.).

Inadequate funding for physicians – poor incentives for them to do Palliative Care house calls

Disconnect between increased expectations for care in the home and available resources to provide such care (e.g. increase in service maximum guidelines for Palliative Care was not matched by a commensurate increase in funding),

Coding issues.

24/7 access to expert resources - Human Resource issues –(e.g. - not enough staff to provide shift nursing for patients in the community)

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Recommendations relating to Palliative Care in the Home

Recommendations include:

Implementation of an expert team (refer to discussion below)

Endorse the development of secondary level expertise in Palliative Care in each Community Service Provider agency and insure that this expertise is integrated with the expert team.

Clarify coding practices relating to EOLC (MIS 95),

Further explore and implement as possible a common chart in the home for Palliative Care patients,

Continue process for use of standardized assessment tools and offer to serve as a pilot site for tele-entry of data (in conjunction with the WRCP and CCO),

Evaluate specific EOLC strategy initiatives (e.g. Symptom Response Kit, Expected Death in the Home process etc).

Regional Cancer Centres


Cancer patients comprise between 80% and 85% of any palliative care team workload.121

Cancer Care Ontario (CCO) is the provincial agency that steers and coordinates Ontario‘s Cancer Services and prevention efforts.122 The Regional Cancer programs have defined accountability to CCO as well as to their host hospitals.

Regional Cancer programs have a unique set of integration accountabilities and responsibilities in addition to direct responsibility for care provision. Accountabilities and responsibilities include:

Accountability for oversight and performance outcomes of the regional (LHIN – wide) cancer system, including aspects of palliative care related to cancer service provision.

Accountability and shared responsibility for:

o the Integrated Cancer Program at their host hospital (including inpatient oncology unit),

o Satellite clinics off site

Responsibility for the Ambulatory services at the Cancer Centre site including Radiation and Systemic Oncology, Supportive Care etc.

Clinical referral patterns are not limited by LHIN boundaries therefore the London Regional Cancer Program continues to be a key player in provision of clinical care for residents of Lambton and Kent.

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Regional Cancer programs (RCP) have been instrumental in advancing Palliative Care across Ontario. Cancer Care Ontario has launched a multi-year strategy to improve palliative care. One of the first initiatives of this strategy was the Provincial Palliative Care Integration Project (renamed the Ontario Cancer Symptom Management Collaborative) which articulates aims related to the use of standardized tools and approaches to care. Benchmarked data is available for the outcomes of this Collaborative.

CCO‘s Cancer plan articulates the following goals for PC over the next three years:

Integrated Palliative Care programs in every region (with access to web based symptom screening tools)

Better symptom management, fewer emergency room visits and a higher percent of deaths occurring in the setting chosen by the patient.123

Models of Palliative Care

Clinical Palliative Care services, offered by RCPs across Ontario are evolving. Results of a survey conducted in 2005, showed that several RCPs offered Palliative Care clinics, several helped support consultation services within their host hospital and most indicated that they were developing Palliative Care teams/programs.

Most RCPs have Supportive Care Programs. Supportive Care is a term used by RCPs to encompass the work of professionals such as social workers, dieticians, psychologists, and therapists as they physically and emotionally support patients throughout their journey.

Supportive care shares a philosophy of care with Palliative Care, but has a larger mandate in terms of the full disease trajectory.

Volumes

It is difficult to do benchmarking for Palliative Care services provided specifically by Regional Cancer Centre Programs, because these volumes are included with the host hospital numbers. Even numbers for Palliative Care Clinics are difficult to obtain. For example the Healthcare Indicator Tool (HIT) shows that only three of the 14 host hospitals in Ontario use the Ambulatory Care classification of ―AC day/night care – Palliative – Functional Centre - 7134094‖ despite the fact that most Cancer Centres provide some type of ambulatory care for patients requiring palliative care. One of the reasons that this classification is not used is that the definition is too narrow. (This definition requires that the length of time in the clinic be a minimum of 3 hours, thereby excluding many of the clinics.)

Volumes for the Supportive Care programs are also rolled into the host hospital numbers of the respective disciplines (i.e. Social Work, Dieticians etc). Therefore, although Supportive Care Departments are required to keep data based on MIS guidelines, benchmarking of volumes from across the province is difficult. (WRCC Supportive Care Program record MIS compliant data.)

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The Palliative Care Program at CCO is currently undertaking a survey which will help with benchmarking of services.

Two benchmarked volumes which give insight into potential order of magnitude for Supportive Care/Palliative Care needs are:

the number of individual (unique) patients who completed the Edmonton Symptom Assessment System [ESAS]

the number of individual (unique) patients who completed the Palliative Prognostic Scale [PPS]).

These numbers are electronically submitted to CCO and collated with numbers from across the province as part of the Ontario Cancer Symptom Management Collaborative.

Description of Palliative Care Services at Windsor Regional Cancer Centre (WRCC) in ESC –current

Clinics and Inpatient consultation

The WRCC has employed a half-time Palliative Care Physician (this position was vacated in Dec. 2007). A full-time palliative care nurse also supports patients requiring palliative care. The cancer centre has operated three Palliative Medicine Clinics and three half days of in-patient consultations at Windsor Regional Hospital (WRH) which is the host hospital. This schedule of Palliative care provision no longer exists due to the vacated physician position.

Currently there are no physicians dedicated solely to Palliative Care services at WRCP. This role is being partially assumed by an oncologist with an interest in Palliative Care.

The expert nurse continues with consultation services in conjunction with the patients‘ MRP/oncologist and works with the consulting physician from Hospice Windsor Essex to provide Palliative Care consultation to selected patients in the host hospital. This current provision is considered an interim solution while a new model of care is being designed.

Other clinical PC initiatives

The WRCP has supported several cross sector integrated initiatives for oncology patients (including palliative) in the ESC region including:

A joint venture with CCAC to fund an oncology community liaison nurse located at the WRCC. This role has been in place for approximately 15 years. This nurse facilitates communication between the oncologist and the community nurses and serves patients primarily in the Windsor Essex region.

Support for an interim joint portfolio role to integrate the work of the End of Life Care Network with the Regional Palliative Care initiatives of the Windsor Regional Cancer program, thereby reducing duplications and overlaps. This structural integration is an example of best practice.

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Support for the Palliative Medicine Program physician on call. This program is operated out of the Hospice of Windsor Essex. This program provides on call coverage not only to WRCC patients but to patients throughout the continuum of care including patients in their own home, at the residential hospice, at Malden Park – CCC beds etc.

Grant support for programming at the Hospice of Windsor Essex.

Regional leadership

WRCP is to be applauded for the leadership role it has taken in advancing Palliative Care system development across the region. Currently the WRCP is supporting the development of the expert team in Sarnia Lambton (funding from A@H initiative), advancing physician education (LEAP program) as well as supporting the EOLCN and numerous other initiatives. Stipend support for a Palliative Care Physician regional leader is also provided. (This physician leader position was vacant for over a year and is currently being filled on an interim basis, by a physician located in Sarnia Lambton.)

Volumes

1. Clinic - In 2007 (January to November) the WRCC‘s Palliative Medicine Program provided 220 Palliative Physician consults and 624 follow-up visits.

2. Supportive Care – The Supportive Care department provides a robust program of care. Social work provides an average of over 6000 visits per year and dietician visits are in excess of 2500 per year (for patients throughout their journey – not just palliative). Several best practice initiatives have been identified in the Supportive Care Program at WRCC including a patient orientation program.

3. Ontario Cancer Symptom Management Collaborative (OCSMC) – WRCP has demonstrated significant improvement in outcomes related to the use of Standardized Tools for Palliative Care. Current results are above the 50th percentile and are expected to continue to improve. Recent data submitted between September 15 and October 15 shows 724 unique patients completed the PPS and 1352 unique patients completed the ESAS.

Summary description – Table 8 below gives a summary of Cancer Centre HPC services in ESC.

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Table 8 - Summary of Regional Cancer Centre HPC roles in Erie St. Clair

Description Model of Care a)Windsor Regional Cancer Centre and host hospital site b) Windsor Essex partnerships c) Regional leadership

a)WRCC and host hospital (model currently under review):

HPC clinic on site at RCC

Consultation on oncology unit and other units in host hospital b) Windsor Essex Partnerships Numerous clinical partnerships and joint funding for:

Palliative Medicine Program physician on call (coordinated out of hospice W/E)

Grant support for programming at the Hospice of Windsor Essex,

Joint nurse liaison position with CCAC (located at WRCC) c) Regional leadership Regional leadership provided by Windsor Regional Cancer Program – includes funding for Physician leader and EOLCN (see description which follows)

Resource Level

Secondary and tertiary level experts identified specifically for HPC

The WRCC had employed a half-time Palliative Care Physician (this position was vacated in Dec. 2007) A full-time palliative care nurse currenty supports patients requiring palliative care Currently there are no physicians dedicated solely to Palliative Care services at WRCP Supportive Care Program Staff operate at a Secondary or Tertiary level of expertise as per the scope of their profession.

Volumes HPC clinic 06/07 WRCC

220 Palliative Physician consults and 624 follow-up visits. Note numbers are for 06/07 – currently no PC specific physician

Volumes supportive care 06/07-WRCC

Social work provides an average of over 6000 visits per year and dietitian visits are in excess of 2500 per year (for patients throughout their journey – not just palliative).

Volumes –Number of unique patients completing ESAS and PPS / month

ESAS - 1352 unique patients PPS - 724 unique patients (reporting period was Sept 15 to Oct 15, 2008)

Staffing Currently: one expert palliative care nurse, Supportive Care Department Social Workers and Dieticians provide HPC in addition to care for curative intent patients

Costs -Costs for Palliative Program are part of global budget for WRCP.

Education -Formalized training for staff available from Palliative Pain & Symptom Management consultation Program (Fundamentals, CAPCE, AHPCE, etc.). -Other education provided on a sector specific basis. -Hospice Windsor Essex receives MOHLTC funding to provide training, support and counselling services – refer to community support service tables (CSS)

Clinical Access Patterns to Cancer Programs by County Sarnia-Lambton Chatham/ Kent Windsor Essex Clinical Access patterns

-Typically access London -Systemic therapy clinic at BWH

-Access both London and Windsor -Satellite Systemic Therapy Clinic at CKHA

-Access Windsor RCC -Radiation and Systemic Therapy at WRCP

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Future System – Role of Regional Cancer Program in Palliative Care Service Delivery in ESC

The Palliative Care program at the WRCC has been a key component of the Palliative Care program in Windsor Essex in the past and has a key role to play in the future.

It is expected that both the clinic and inpatient consultation will return to previous levels once staffing issues have been addressed. New innovative models of care are being developed.

The Regional Cancer Program has a key role in developing and implementing best practice Palliative care not only at the Regional Cancer Centre but across the county and region.

Issues in Palliative Care at WRCP

The key issues identified include:

lack of physician coverage for Palliative Care Clinics and inpatient consultation

need to reinvigorate the Palliative Care Program at the RCC and identify and implement a preferred model of Palliative Care service delivery which is integrated with the host hospital‘s vision and connects with other parts of the cancer continuum including services offered at HDGH and LDMH.

There are no functional centre designations within the Ontario Healthcare Reporting System (OHRS) that are defined for palliative care clinics

Recommendations for Windsor Regional Cancer Centre

It is recommended that the WRCC and the Regional Cancer Program:

Move quickly to reinvigorate the Palliative Care Program including a PC clinic and Inpatient consultation by:

o Identifying and implementing a preferred model of Palliative Care service delivery which is integrated with the host hospital’s vision.

o Recruiting Palliative Care physician specialist level expertise.

o Exploring innovative models of care including use of Advanced Practice Nurses and other clinical experts.

Assume a leadership role with CCO in conducting a survey which will provide benchmarking information related to Palliative Care programming at RCCs across the province.

Consult with CCO regarding data information collecting processes related to Palliative Care service delivery in Regional Cancer Centres (e.g. review opportunities to identify clinic work within an ambulatory care functional centre).

In conjunction with the host hospital explore the possibility of an interventions / procedure based clinic which provides medical interventions on an outpatient basis to ambulatory patients – this may prevent admissions.

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Outpatient Palliative Care Clinics/Consultation Services


Clinics are a typical service offered in integrated PC programs and are seen as an efficient means of providing consultation and follow-up care for community patients who are mobile and well enough to travel.

Typical Models of care and volume definitions

Typically these clinics are staffed by a physician and nurse team, with access to a wider interdisciplinary team. Clinics may be consultation only or consultation and follow-up or consultation and ongoing care (MRP). Clinic sites vary. Often these clinics are located at a Cancer Centre (refer to discussion above) or hospital facility with diagnostic testing and other services on site.124 Clinics may also be offered in community based settings.

Support and funding for these clinics is variable.

No provincial volume benchmarking is available.

Description of Palliative Care Clinics in ESC –current

Both Windsor/Essex and Sarnia/Lambton have provided identified PC clinic services.

Windsor/ Essex

two clinic sites-WRCP site (see above description under WRCP) and W/E Hospice location,

part of Palliative Medicine program (see description below),

WRCP volumes – 220 consultations 624 follow-up visits (Jan – Nov. 07) - see above,

Windsor Essex Hospice on site clinic consultations for 2007 – 33 new patients.

Sarnia/ Lambton

Supported by and located at CCAC,

Physician clinic which also provides education to community providers.

2007 volumes -50 new patient consultations, approximately 150 follow-up visits.

Chatham/Kent – no clinic program identified.

Summary description – Table 9 below gives a summary of outpatient HPC clinics in ESC.

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Table 9 - Outpatient Palliative Care Clinics in Erie St. Clair


Description

Model of Care - Consultation - Consultation and follow-up - Consultation and care

CCAC location -Any of the three consultation models as requested

-Clinic operates one half day per week

No P

alli

ative C

are

Clin

ic in C

ha

tha

m K

en

t

Hospice Windsor Essex

Location - Primarily first two consultation models

WRCC location - Primarily first two consultation models

Resource Level


-HPC Expert Physician. - Community nurses attend. - Clinic logistics handled by CCAC staff

- HPC Expert Physician. - Expert nurses - Clinic logistics handled by Hospice staff. - Access to Social Work

- Oncologist with specialty interest in HPC. -HPC Nurse Expert - Clinic run by Supportive Care program - Access to Social work , Dietitian etc.

Volumes

2006/2007 Approx.50 new Patients; 150 follow-up visits

2006/2007 Approx 40 new patients - Physician vacancy during this time.

Jan to Nov. 2007 -220 consultations; 625 follow-up visits Currently – physician vacancy

Staffing No funded dedicated staffing

Staffing part of Hospice budget

Staffing part of Supportive Care Dept

Costs Part of Global for CCAC

Part of Global for Hospice Windsor Essex which includes use of fundraised $

Part of Global for WRCP

Future System – Role of Palliative Care Clinics

Each county should have an outpatient Palliative Care clinic. Location considerations may include: patient accessibility (including parking), proximity to lab testing, supportive care etc. The clinics should be an integral component of a community based expert team with integrated records and communication channels.

Issues related to Palliative Care Clinics

Issues related to Palliative Care Clinics include:

No plans for clinic in Chatham Kent,

Clinic roles in Windsor Essex need revitalization and clarification,

Data collection methodologies which are tied to funder and reported through the Ontario Healthcare Reporting System (OHRS) need to be developed. For example clinic visits supported by Hospice need to have a reporting function through Community Support Services methodology , WRCP clinics through the MIS system within the hospital, CCAC clinics through a designated functional centre.

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Recommendations related to Palliative Care Clinics

It is recommended that:

Palliative Care Providers in Chatham Kent explore opportunities for the establishment of an outpatient PC clinic in Chatham Kent which will be part of the regional Palliative Care Program.

Clinics in Windsor Essex continue and revitalize role and connections with one another and with wider sector,

Clinic in Sarnia Lambton continue and become a key component of the expert team which is being developed as one of the A@H initiatives.

A consistent method of data collection is developed across ESC for tracking of clinic volumes and outcomes.

Volunteer Hospice Program (VHP) – Community Support Service (CSS) Funded Service


The Volunteer Hospice Programs were one of the first initiatives funded by the MOHLTC in 1992 and 1993 (funding code was 08D). This program is a Community Support Service (CSS) in which volunteers are recruited, trained and matched with clients. The volunteers are supervised to provide emotional, social and spiritual support to those who are living with a life-threatening or terminal illness and their families. Volunteers also provide respite and bereavement support.

Description of Volunteer Hospice Programs in ESC -current

Each county receives funding and operates this program according to the unique demands of its locale. Both Windsor and Chatham use their volunteer program across sectors, including community, hospitals, and LTCH. Windsor also uses these volunteers in its residential hospice and in their community day programs in the Hospice building. Sarnia‘s program has been localized to in-home support.

These programs have initiated a regional network to share best practice.

Windsor Volunteer Hospice Program – managed through Hospice of Windsor Essex.

Clients Served: In 2006/07 volunteer services were involved with 1,257 patients or caregivers across several sectors, including 90 patients in patients‘ own homes.

This program has a number of informal agreements with other sectors (hospitals, LTCHs) to provide volunteers on those sites.

MOHLTC funding provides about 60% of costs.

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Chatham/Kent – managed through VON – Chatham/Kent

Clients Served: In 2006/07 volunteer services were involved with 163 patients across several sectors.

This program is currently developing a formal agreement with Chatham Kent Health Alliance to provide volunteers on this site.

Sarnia/Lambton – managed through VON Sarnia

Clients Served: In 2007/08 volunteer services were involved with 36 patients in patients‘ own homes.

MOHLTC funding provides about 80% of costs.

Summary description – Table 10 below provides details of the VHP programs in ESC.

Appendix 6 provides additional details.

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Table 10 - Volunteer Hospice Program (VHP) -(Previous Funding Code 08D) MOHLTC Funding Provided for: Recruitment, Training and Client Matching. No mileage provided for volunteer travel.

Organization Chatham Kent VON

Windsor Essex Hospice of Windsor Essex

Sarnia Lambton VON

Description of Service Supportive Care Respite Bereavement No hands on care Patient‘s seen in their own home,

in hospital & LTC Homes

Supportive care Respite Bereavement Custodial care of building, gardens, etc. Meal preparation at residential hospice Assistance with programming in day hospice Hands on care in residential Hospice Patient‘s seen in all settings Phone Call Support Transportation

Supportive Care Respite Bereavement No hands on care basic comfort

measures Patient‘s seen in their own home,

retirement home or long term care setting

Approximate % of Volunteer Program Funded through MOHLTC

100% MOH portion: Approx. $168,112



Sources of Non Ministry Funding Untied Way Fundraising

Untied Way Fundraising

Number of Client Visits in Clients Home

Home visits made but numbers not subdivided by location

1251 997

Number of Client visits in Day Program

0 742 Not Serviced by VHP

Number of Client Visits in Hospital Acute Care

AC visits made but numbers not subdivided by location

6071 Roster Program

Not Serviced by VHP

Number of Clients in Hospital Complex Continuing Care

CCC visits made but numbers not subdivided by location

Not Serviced by VHP

Number of Client Visits in Residential Hospice

No residential Hospice 15,000 * Residential Hospice in process

Number of Client Visits in LTCH LTCH visits made but numbers not subdivided by location

393 Not Serviced by VHP

TOTAL NUMBER OF CLIENT VISITS 1415 23,457* 997

Number of Client s Seen by Volunteers in Client’s Home

Visits made – numbers not subdivided 90 36

Number of Clients Seen by Volunteers in Day Program

0 533 Not Serviced by VHP

Number of Clients Seen by Volunteers in Hospital— Acute Care

Visits made – numbers not subdivided 412 Roster Program

Not Serviced by VHP

Number of Clients Seen by Volunteers in Hospital—Complex

Continuing Care

Visits made – numbers not subdivided Not Serviced by VHP

Number of Clients Seen by Volunteers in Residential Hospice

No residential Hospice 123 (April 07 – July 08) Residential Hospice in process

Number of Clients Seen by Volunteers in LTCH

Visits made – numbers not subdivided 22 Not Serviced by VHP

TOTAL NUMBER OF CLIENTS SEEN BY VOLUNTEERS

163 1,257* 36

Total Number of Volunteers 90 (All Stats 2006-2007) 742 14

Total Number of Client Visits by Phone Calls

865

Number of Clients Receiving Phone Call Support

182

Total Number of Client Visits through Transportation

2,522

Number of Clients Receiving Transportation

79

Volunteer education Fundamentals offered through PPSMCP, plus site specific orientation

Education program designed by Hospice W/E; includes education for hands on care in Residential. Hospice. Curriculum is linked to PPSMCP to ensure consistent education.

Fundamentals offered through PPSMCP, plus site specific orientation

*Note some clients receive more than one service and are therefore, counted more than once.

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Future System – Role of Volunteer Hospice Program in Palliative Care Service Delivery System

It is expected that coordination of volunteer services using innovative approaches (such as maximizing the potential involvement of the patient‘s own ―circle of caring‖) will continue in order to enhance efficiency of the scarce volunteer resource. Development of educational and programming approaches will be part of the education strategy funding from the A@H EOLC education initiative.

Issues related to the Volunteer Hospice Program


Difficulty recruiting and retaining volunteers.

No funding for volunteers‘ travel – this limits in home visiting.

Poor understanding of program by other health care professionals.

Need for enhanced communication between sectors who that use Palliative care volunteers

Need for common curriculum and service agreements.

Recommendations for Volunteer Hospice Program

It is recommended that Volunteer hospice Programs:

Explore integration / collaboration of palliative care volunteer services (funded and non-funded) within each county. (Refer to the model at Windsor Essex Hospice where volunteers from the VHP funded program are utilized at the Residential Hospice and Day Programs on site at the Hospice building as well as in LTC, Hospitals, in patient’s home etc. ).

Continue to explore and implement innovative models of care delivery such as involving the patient’s own ―circle of caring‖.

Continue to enhance VHP network.

Develop standardized education processes and service agreements for volunteers across the region.

Continue to be an integral part of the EOLCN structure.

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The Palliative Pain and Symptom Management Consultation Program (PPSMCP) – Community Support Service (CSS) Funded Service


The Palliative Pain and Symptom Management Consultation Program (PPSMCP) serving ESC combines three palliative care initiatives which were introduced across Ontario by Ontario‘s MOHLTC in 1992/1993 (previous funding codes were: 22A, 23A and 24A). New guidelines for service provision were released in 2006 as part of the EOLC strategy.

Description of PPSMCP in ESC –current

The program serving ESC complies with the guidelines for service provision and is considered a best practice model in terms of program design. The program operates across all sectors.

The Education component of this program is also viewed as a best practice example.125 These education programs have been adopted by many PPSMC Programs across the province and interest to implement these programs has been expressed on a national level.

The Program developed a series of well-respected educational programs using adult education principles and following the national consensus model for hospice palliative care:

The Fundamentals of Hospice Palliative Care (Fundamentals);

Advanced Hospice Palliative Care Education (AHPCE);and

Comprehensive Advanced Palliative Care Education (CAPCE).

The PPSMCP also facilitates the education of physicians in the delivery of hospice palliative care.

Capacity building clinical consultation with care providers is also part of the defined role for this program.

Two consultants serve the Erie St. Clair region.

The End of Life Care Network serves in an advisory capacity.

This program is a two region initiative, serving both Erie St. Clair and the South West LHIN regions. This inter-LHIN structure facilitates consistency of practice and helps minimize overhead and administrative costs.

The volumes cited for 2006/07 were:

810 health care providers educated,

5533 health care providers received consultation support.

In ESC this program and its advisory committees served as the precursor for the EOLC Network.

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Future System – Role of PPSMCS in Palliative Care service Delivery

It is expected that this program will continue to provide key regional leadership including assuming the leadership role in the education strategy/ blueprint for ESC and in conjunction with WRCP and EOLCN will provide the LEAP program for physician education.

Issues related to PPSMCP and Education

Issues include:

Demand for education which exceeds funded programs (e.g. several sectors have privately purchased the Fundamentals program),

Need for integrated curriculum with University and Colleges,

Need for an Education Strategy aimed at coordinating and integrating Palliative Care education within the region.

Recommendations for PPSMCS

It is recommended that the PPSMCP

As part of the A@H funded initiative assume the leadership role in developing and implementing a region-wide Education Strategy which leverages synergies among current education programs/providers (e.g. Fundamentals/ CAPCE, AHPCE education offered at Hospice of Windsor /Essex etc.) and links initiatives to identified regional priorities. Significant attention will be given to ensuring sensitivity to cultural (including first nations populations), ethical, and spiritual considerations.

(Refer to Appendix 5 for preliminary details of the HPC education strategy/blueprint for ESC)

Hospice Day Programs (Hospices – non-residential component) – Community Support Service (CSS) Funded Service and Non-Funded

Service


In many communities across Ontario, ―grass roots movements‖ have initiated support services for patients requiring palliative care. Frequently these initiatives began as volunteer driven programs determined to fill a much needed gap in care. Typically these initiatives operated as day programs with fundraised and donated dollars. In some cases more permanent funding has been procured – some from MOHLTC, United Way, grants etc. However in many cases fundraising continues to be a key source of operational viability.

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Note re definition – Within this context, the term ―Hospice Day Programs‖ is used to distinguish these programs from Residential Hospice programs. The term does not imply a respite program that lasts a full day – although some programs may in fact serve a respite function. The length of time and objective of each individual day program varies considerably depending on programming capacity and need.

Description of Hospice Day Programs in ESC

Windsor Essex

The Hospice of Windsor Essex

The Hospice of Windsor Essex has served as a hub for Palliative Care services in Windsor/Essex for over twenty five years. Day programs which began in a church basement have grown to encompass a broad continuum of services provided from a ―Hospice Village‖ complex which includes several buildings and covers nearly an acre of land in east Windsor.

In addition to the Hospice Day Programs (offered in the Wellness Centre building), the continuum of services offered at the Hospice of Windsor Essex includes several programs described above (residential hospice, Volunteer Hospice Program, Palliative clinic) as well as the Palliative Medicine Program (described below). The Residential Hospice opened in 2006. Prior to that time all programs were Day Programs.

The Hospice Day Programs offered at the Wellness Centre at the Hospice of Windsor Essex are extensive including:

o Children‘s‘ programs, o Art and Journaling, o Radiant touch or Therapeutic touch, o Bereavement support.

The Hospice of Windsor Essex has creatively and innovatively funded these Hospice Day Program services (and the other services) through a combination of:

o fundraised monies, o direct payment from MOHLTC through Community Support Services:

Volunteer Hospice Program (described above).

Caregiver Support and Counseling Program is for stress management, support, and psychosocial programs for caregivers and families on a one-on-one basis and in a group setting. The following volumes are cited for 2004, 2005, and 2006 respectively: 1989, 2327, and 2779. (Previous funding code 08A).

Caregiver Training, Information and Education program is offered to assist caregivers, family members and service providers in delivering care and emotional support to patients. The following volumes are cited for the past three years respectively: 1248, 1796 and 2009. (Previous funding code was 08B).

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o direct payment from MOHLTC for SMI counselling services. o partnership agreements with various organizations including:

the Windsor Regional Cancer Centre (for on call coverage for Palliative Medicine Program across the continuum and for non-specified support of other program),

Windsor Regional Hospital, CCAC (contract with Social Workers)

o grants, o United Way funding, o Partnership with Wellspring, o Etc.

The Hospice of Windsor Essex has been extremely successful in its fundraising endeavors. However at this point the Hospice states:

“Due to economic trends in our region we are already experiencing a measurable negative impact on community fund raising and we anticipate this will worsen. This trend will affect our ability to offer programs primarily supported by fund raising revenues (For example The Hospice must fundraise for the nurses‟ wages).”

While the opening of the Residential Hospice by the Hospice of Windsor Essex has been an incredible success, the shortfall in MOHLTC funding for this program requires additional fundraising and puts a strain on the Hospice‘s other programs, such as the Day Programs, which operate with fundraised monies.

Sarnia Lambton

Two organizations in Sarnia Lambton provide Hospice Day Programs. Neither receives MOHLTC funding for these specific programs.

St. Joseph’s Hospice of Sarnia

St. Joseph‘s Hospice of Sarnia opened in 2005 as a Hospice Day Program operating out of rented facilities in downtown Sarnia. In 2009 a 10 bed Residential Hospice will be opened on a new site close to the current facility. Hospice Day Programs will then be moved to that site. The Volunteer Hospice Program in Sarnia is not located with these programs but is operated by VON out of its Sarnia office.

The Hospice Day Programs offered by St. Joseph‟s Hospice of Sarnia continue to expand and include:

o Children‘s‘ programs, o Walking Companions – 310 visits, o Therapeutic touch / Massage- 40 visits, o Bereavement support – 202 visits, o Food for thought luncheons – 131 visits o Other – 103 visits

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These programs receive no MOHLTC funding and operate through a combination of:

o fundraised monies, o grants, o private support from the St. Joseph‘s Foundation.

This organization has been very successful at engaging the entire community of Sarnia Lambton in supporting both the capital campaign for the Residential Hospice as well as operating costs of the Hospice Day Programs. If MOHLTC underfunding for the Residential Hospice continues, Sarnia Day Programs may suffer the same strain as was described above for Windsor Essex.

VON Kids Circle Programs

VON in Sarnia provides a program for children who are undergoing loss personally or in their family. This program is supported through the United Way funding and funding from VON foundation.

Chatham/Kent

Two organizations in Chatham Kent provide Hospice Day Programs. Neither receives MOHLTC funding for these specific programs.

Myles Miracle Mission Wellness Centre

This program has been operational for just over 2 years and has recently opened a newly renovated building in a residential area in central Chatham. The current focus of this organization is to provide support to Cancer Patients throughout their journey (not just at end of life).

Activities include:

o hosting a number of educational events for family and the general public o support of patients and families in terms of paid parking at CKHA o peer support for families and patients.

These programs receive no MOHLTC funding and operate through fundraising and donations.

VON Programs – Kids Circle Program and Sponsorship for ―Look better / Feel Better‖ Programs

VON in Chatham provides a program for children who are undergoing loss personally or in their family.

VON Chatham also sponsors the Look Better / Feel Better program for women experiencing the side effects of curative or palliative intent chemotherapy.

These programs are supported through United Way funding and from the VON foundation.

Summary description – Table 11 below provides details of Day Programs for Hospice Palliative Care in ESC.

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Table 11 - Summary Chart - Day Programs for Hospice Palliative Care (HPC) in Erie St. Clair


VON – Sarnia

St. Josephs Hospice of Sarnia

VON – Chatham

Miles Miracle Network


MOHLTC Funded HPC Day Program?

No No No No Partially

Description VON Kids Circle Programs

Children’s’ programs, Walking Companions; Therapeutic touch / Massage; Bereavement support; Food for thought luncheons

VON Programs – Kids Circle Program; Sponsorship for “Look better / Feel Better” Programs

Activities include: educational events; support of patients and families in terms of paid parking at CKHA; peer support for families and patients.

Caregiver Training, Information and Education program: 2009. Caregiver Support and Counseling Program: 2779. Many program elements: including Therapeutic touch / Massage; Bereavement support; Wellspring programs etc.

(Refer to Appendix 6 for additional information about Hospice Day programs and interconnections with Volunteer Hospice Programs in ESC)

Future System – Role of Hospice Day Programs

Day Programs will increasing be needed to help support patients in the community. Expansion of some of these programs into a ―Day Care Hospice model‖, which would provide care for patients up to 9 hours a day, may be worth exploring.

This Day Care Hospice model would allow families to continue working during the day and/or provide a respite opportunity for the family/informal care providers. Additionally efficiencies of scale could be realized by enabling several patient visits to occur without travel between patients‘ homes.

Issues for Hospice Day Programs

Key issues identified for Hospice Day Programs include:

ongoing sustainability in terms of funding sources

need for integration with other services to minimize duplication and reduce client/ patient confusion about where to access help.

Recommendations related to Hospice Day Programs (HDP)

It is recommended that:

The EOLCN and the HDPs continue to ensure that these programs are integrated within the regional program of EOLC to the extent that this is supported by the individual vision of each organization.

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Efforts continue to obtain funding sustainability.

HDPs explore the possibility of expanding their programs into a Day Care Hospice model and seek funding through the next phase of A@H initiatives.

Summary of Funding for CSS HPC Programs by County – Refer to Appendix 7.

Expert Teams


Expert teams/ Consultation teams are a core element of a regional palliative care program and are cited as an essential component of care in every benchmarked regional program (e.g. Fraser Health, Edmonton‘s Capital Health, Australia‘s model etc.). Ideally these teams operate across sectors. Expert teams are the preferred method of providing ―tertiary level / specialist level expertise‖.

ESC EOLCN members have repeatedly identified the need for expert consultation teams in each county. This is consistently a priority issue. During the Aging at Home funding application process, over 50 EOLCN participants identified this as the number one priority issue requiring funding.

Several examples of expert teams are available in Ontario (e.g. Kingston).

Frequently a team is what defines a ―program‖ – i.e. patients referred to the team are considered to be ―in the program‖. There is a significant body of literature to support the development of Expert Palliative Care teams.

CHPCA‘s Pan-Canadian Gold Standard for Palliative Home Care126 lists consultation teams as important for quality palliative care.

Consultation teams typically are multidisciplinary.

Fraser Health lists the following team members:

Palliative care physician,

Clinical Nurse Specialist / Nurse Practitioner,

Social worker/Counselor,

Volunteer Coordinator.

Access to a Hospice Palliative Care Clinical Pharmacist

Minimally a team would have an MD and RN with access to other professions.

Models of care include:

consultation only,

consultation and follow-up,

consultation and follow-up with direct care provision.

Across Ontario three key limiting factors are articulated related to the development of Palliative care teams:

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the shortage of Physicians with expertise in Palliative care.

lack of dedicated sustainable funding,

difficulty providing 24/7 coverage

Shortage of physicians:

The number one concern, expressed in every Palliative Care service provider consultation forum in the past year in Erie St. Clair, is the critical shortage of Palliative Care physicians. This anecdotal concern is validated by CCO Quality indicators (published for 2006/2007) which showed ESC as the third lowest in Ontario (after northeast and northwest) in terms of ―Rates of Physician house calls in last 2 weeks of life for patients who died of cancer‖. This finding is reflective of the significantly lower ratio of all categories of physicians in ESC as compared to Ontario as a whole (refer to numbers in Section 2). Physicians are an essential element of an effective Palliative Care service delivery model. The Palliative Care specialist physician role is well established and recognized across Canada.

Why are physicians reluctant to assume leadership in Palliative Care? Reasons suggested by providers in ESC include:

inadequate funding given the time consuming nature of the care – the Alternative Funding Plan (AFP) for Palliative Care Physicians has not addressed this,

too large a need; fear of personal burnout,

few tertiary experts to consult with or refer to,

no integrated team to support the physician,

the physician may be the only link between sectors,

having to spend time on logistics that could be handled by other professionals.

This local finding is consistent with published reports which cite similar concerns in other regions.127

Many of these issues and concerns can be ameliorated by the implementation of a team. It is anticipated that the experience of a supportive team will be a means of encouraging Physicians to become involved with palliative care.

Increasingly, Nurse Practitioners are seen to have a key role to play with expert palliative care teams across Ontario.

Dedicated sustainable funding:

The funding provided through the Aging at Home initiative will provide sustainable funding for expert teams.

24/7 coverage:

Access to expert resources, pharmaceuticals and equipment on a 24/7 basis is one of the expected standards of care articulated by CHPCA, but is one of the most difficult expectations to fulfill.128 Access to hands-on care may be augmented by use of phone support etc.129 It is expected that ESC‘s regional program team will look at innovative ways to enhance 24/7 access to expertise.

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Description of Expert Teams / Consultation teams in ESC - current

Aging at Home Initiative

As described in Section 1 and reiterated throughout this report the funding from the Aging at Home Initiative for the development of EOLC expert teams is the beginning of a truly integrated system of HPC in ESC. The team will begin in Sarnia-Lambton, and will then expand into the rest of the region in subsequent years. Year one funding for Sarnia Lambton will be annualized with additional funding for the other two counties in year two and three.

Sarnia Lambton – current status

No formalized team has existed in Sarnia Lambton; however the physician core of the team is already in place.

A team of three physicians has stepped forward to take a lead on Palliative Care clinical issues. The full time physician of this group is partly reimbursed by the Alternative Funding Plan (AFP) for Palliative Care Physicians. This same physician has assumed an interim regional administrative role funded through the WRCP.

Based on the current availability of this core group of physicians and given the funding from A@H, it is expected that this team will be operational by January 2009.

Windsor Essex - Palliative Medicine Program

Windsor Essex was ―ahead of its time‖ in establishing a Palliative Care expert team comprised of nurses and physicians. This team operated for many years serving as the key experts in Palliative Care in the county. Training of other PC physicians from across the region took place in Windsor. The team was funded through a combination of sources including: OHIP billing for physicians, on call funding from WRCP, grant funding from WRH and WRCP, fundraised monies from Hospice.

Processes involved having all new referrals for community-based Palliative Medicine triaged through Hospice. Appropriate patients were then transferred to the WRCC Palliative Care Program for consultation and follow-up care, while others were followed at the Hospice clinic. Consultation in the patients home was also provided as was the co-ordination of the on call program in which Palliative Care physicians provide week-end call across several sectors. With changes brought on by the departure of the key Palliative Care physician, turnover in staffing, increased financial commitments of both the Hospice and its partners, and with new partnership roles emerging, processes are being reviewed and evaluated. One multi-partner meeting has taken place to initiate discussion related to future roles.

Despite the changes noted above this program has recruited a new physician and is providing ongoing care. Partnership funding is in place until April 2009. The program is currently staffed by nurses from the Hospice and 1.5 physicians. The part time physician in this group is partly reimbursed through the AFP; the full time physician bills OHIP. The on call stipend is paid by WRCP.

The number of new referrals to the Palliative Medicine Program (PMP) in 2006 and 2007 was 429 and 399 respectively. In 2007, approximately 220 of these new consultations took place at the WRCP palliative clinic (As described under WRCC above 2008 saw changes in that Palliative Care Clinic due to the departure of the PC Physician from the Cancer Centre).

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Numbers of visits in home visits were 265 with an additional 109 occurring in the Residential Hospice.

Chatham/Kent -No local physicians have identified themselves as Palliative care leaders. No AFP proposal was submitted. Several dedicated physicians have assisted CCAC to support orphan patients requiring palliative care in the patient‘s home, but no formal program exists. CCAC case managers have served as the core of the team, bringing palliative expertise to the patient in his/her home.

Future System – Role of Expert teams in the Palliative Care Service Delivery System

A regional expert team, with expertise in each county and coordination regionally, is viewed as a foundational component of an integrated system of Palliative Care within ESC.

The Aging at Home funding will enable this to occur.

The team will serve as a catalyst for integration and enhanced cross sector cooperation.

Fraser Health describes a ―connecting role‖ for such teams. ―The consult teams are a key factor in working towards seamless transitions and care for patients and their families as they move from one sector to another in the healthcare system. They make decisions with patients about the best location of care at a given time in the illness trajectory. Consult team members often act as a bridge to communicate patient and family needs to team members in other settings.‖130

Planning considerations related to Expert teams

Key planning considerations related to Expert Teams include:

Need to clearly define linkages and care processes between consultation team and primary service providers. The expert team must be closely linked to the primary care providers to avoid becoming and being perceived as ―just another layer of bureaucracy‖.

Need to continue to build capacity in Community Service Provider Agencies and other organizations/facilities.

Need for sustainable consistent funding for physicians – Currently funding for Physicians providing palliative care specialist level care is a ―cobbled together‖ effort driven by local history and relative ―generosities‖. The AFP for Palliative Care Physicians has not been widely embraced by palliative care physicians across Ontario, due to a number of restrictions and a perception that fee for service is a better option. ESC has managed to provide some additional incentive funding in both Windsor/Essex and Sarnia/Lambton but no consistent or sustainable contract/understanding has been developed. Clarification is required related to level of expertise and on call supported by each sector (e.g. HOOC funding for hospitals, appropriate role for RCP etc.)

Need for sustainable funding for Nursing and other partners of the team – The Aging at home funding will address this need.

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Recommendations for Expert Team Development

The following recommendations are made related to development of Expert Teams in ESC, (one in each county):

Consider the following key principles in the development of the team:

o Integrate the team with primary care providers, co-locating if possible.

o Continue to build capacity in Service Provider Agencies at the secondary and primary level of palliative care. The expert team cannot provide all Palliative care, therefore service provider agency expertise must be developed and maintained. This model may be able to ―count and compensate‖ work done by ―in situ‖ teams.

o Provide timely, accessible consultation reports and feedback.

o Provide 24/7 access for care providers of patients in community.

A formal evaluation process should accompany the development of the initial team developed in Sarnia Lambton with A@H funding. Outcomes of this evaluation should be utilized in the development of teams in the other two counties.

The EOLCN has been identified as serving in an advisory capacity for this team. Specific parameters around this accountability should be articulated in the development of this team process.

Primary Care Providers


Primary care providers care for most dying patients. It is therefore very important that these providers have an understanding of the principles of Palliative care. In this context the term ‗Primary Care Provider‘ refers to Family Physicians, Community Health Centres, Family Health Teams, Walk in Clinics etc.

Description of Primary Care in Erie St. Clair as it relates to Palliative Care

Many primary care providers deliver excellent Palliative Care services to their patients. It is estimated that in Erie St. Clair approximately 12 Physicians have taken some form of specialized education related to Palliative Care. Typically these physicians provide care to their own roistered patients only.

In ESC currently there is no systematic approach to provision of Palliative Care Education to Primary Care Physicians and teams, nor is there a clear sense of expertise currently available among primary care providers.

Future System – Role of Primary Care Providers in Palliative Care Service Delivery in ESC

As the need for Palliative care increases so will the need for Primary Care Physicians and primary care teams who are trained in Palliative care and can deliver this care in a ―shared care / collaborative care‖ model with the emerging expert teams.

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Issues related to Primary Care Physicians and teams


Lack of a formal systematic approach to provision of education to Primary Care Physicians and teams.

Lack of discussion around the options for care/consultation in terms of a shared care / collaborative care model.

Recommendations related to Primary Care Physicians and teams

Recommendations include:

Adopt the LEAP program (learning essential approaches to palliative care) for ESC and work in conjunction with the PPSMCP, CCO, WRCP and the ESC EOLCN Education Strategy to pursue this inter-professional training on an ongoing basis.

Development of a Shared care model between the expert team and the primary care providers.

Grief and Bereavement and Other Programs and Supports

It is noted that patients/families receiving Palliative Care will need to avail themselves of diagnostic, therapeutic and support services (mental health bereavement etc.). A description of the current availability and coordination of these services for palliative patients is beyond the scope of this current report, but these services are acknowledged as essential partners. ESC EOLCN has the privilege of having many of these partners regularly at the table.

It is expected that the ESC EOLCN will work collaboratively with bereavement networks and other providers to enhance understanding of current services and gaps in grief and bereavement care.

Summary comments

The descriptions above give some insight into the complexity of the Palliative Care ―system‖. Palliative Care is required and provided in many sectors and settings. The next section illustrates how these sector-specific roles compare and contrast.

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SECTION 5

Right Patient in the Right Place at the Right Time

How do the Sectors Fit Togther?

To gain insight into how the sectors fit together and to determine what differentiates care in each of the key patient locations the following is depicted in the section below:

Typical HPC interventions/procedures/services provided on site

Typical eligibility criteria by patient location

Tipping points which contribute to patients‘ move from home to another care setting.

Case studies which describe the patient and familiy experience accessing care from various sectors – case studies are briefly summarized below and are included in full as Appendix 8

Palliative Care is holistic and explicitly considers all domains of issues (as described in Section 2 above). Because of the multifactor nature of patient and family needs and resources, it is rarely one issue alone which triggers a move from one level of care to another. Thus when describing what differentiates care in each patient location, it must be acknowledged that many factors beyond those summarized below contribute to decisions about admission to various levels of care.

Interventions/Procedures/Services

Table 12 below summarizes typical HPC interventions/procedures/services provided on site at various patient care settings in ESC. Locations below are 24/7 care settings. Mobile/transportable patients may travel from this primary location to receive these interventions/procedures/services as outpatients at hospitals and Cancer Centres.

Criteria for Admission

Table 13 below summarizes typical eligibility/service criteria for Hospice Palliative Care in ESC. Locations below are 24/7 care settings. These criteria are based on services that are available in each setting. Day programs/clinics/ambulatory care services may support patients in these locations particularly patients in their own homes.

Tipping points – Factors that influence patients’ ability to remain at home for EOLC

Figure 5 below illustrates a few of the decision points related to end-of-life care in the home. This was drafted by ESC care providers in answer to the question, ―Why don‘t all patients requiring HPC stay in their own home throughout their journey?‖ The answer to this question is very complex and includes factors such as:

patient/family choice,

an acute medical crisis,

uncontrolled symptoms,

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insufficient informal care provider support including poor access to Day Programs and other supports.

service and equipment requirements that exceed what CCAC (and other community providers) can support,

no access to HPC expertise in the home,

Table 12 Typical HPC Interventions/Procedures/Services Provided ON SITE - By Patient Location

Locations below are 24/7 care settings – Mobile/transportable patients may travel from their primary location to receive these interventions/procedures/services as outpatients at hospitals and RCPs

LEGEND: Y= Yes, most facilities provide this N= No, most facilities do not provide this ; S=A significant number of facilities provide this service/intervention/procedure;

In Home- CCAC and CSPA

Residential Hospice

Acute Care Complex Continuing Care


Services which are common to virtually all locations

Management of :tube feedings, pressure ulcers, oxygen therapy, Some degree of support from Pharmacy, Allied health, Volunteers,

Paracentesis/ Thoracentesis

N N Y Y N

Initiation of Intraspinal pain management

N N Y* Y* N

Management of Intraspinal pain management

Y Y Y* Y* N

Initiation of Ventilator/Respirator Care

N N Y N N

Management of Ventilator/Respirator Care

(Bipap)

Y N Y Y* S

Blood transfusions N N Y Y** N IV therapy – fluid replacement Y Y Y Y S – with CCAC

teaching IV therapy – antibiotic therapy Y Y Y Y N

Initiation of Central Line N N Y S N

Management of Central Line Y Y Y Y S – with CCAC

teaching Palliative Chemotherapy Y-oral meds and

monitoring pumps N Y Y N

Diagnostic Imaging N N Y Y** N Diagnostic Lab Lab pick up with

cost Lab pick up with

cost

Y Y** Lab pick up 1x per week

Surgical & Anesthesiology

Intervention N N Y S *** N

Palliative Radiotherapy N N Y – at RCP locations only

N N

PCA Pumps S/L & W/E –Y C/K -N

Y Y Y N

* exception is LDMH **exception is WRH Malden Park CCC Palliative Care unit which is located off site from acute care or other CCC beds *** Some procedures may be done in OR on site and pt. returned to CCC bed on sites where CCC is co-located with Acute Care

Format and content adapted from work done by Windsor/ Essex End of Life Care Committee under the leadership of Sandra Kroh - validated by each county’s EOLCN committee.

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Table 13 Typical Eligibility Criteria for Hospice Palliative Care in ESC

(Locations below are 24/7 care settings – day programs/clinics/ambulatory care services may support patients in these locations particularly patients in home)

Expert teams significantly enhance care and connections at home and across sectors.

In Home CCAC and CSPA

Residential Hospice

Acute Care Complex Continuing Care


Criterion which are common to all locations

Patient: consents to care in this setting; requires professional health care; Typically requires pain and symptom management and psychosocial support; May require lab and other diagnostic testing to identify and control symptoms; has valid OHIP.

General Description

-patient requires in - home coordinated multidisciplinary care, -Is not eligible for other settings or chooses care in home. - Typically significant degree of family / informal care provider support & resources are required particularly in later stages.

- EOL predicted on admission - Would be appropriate for in home care if family / informal care provider support & resources were available

Need for Palliative Care approach may be at time of initial diagnosis/ palliative prognosis or acute exacerbation; -Management of severe symptoms; -May require intensive tertiary level interventions to manage symptoms

-Provide continuing

and specialized services to medically complex patients, who usually have multiple health problems and/ or functional impairments.

-Provide care to individuals who no longer are able to live independently and have fully utilized all available resources and services within the community.

DNR established on admission

DNR may or may not be established

Yes – DNR on admission


-General CCC beds: DNR may or may not be established -Designated HPC units: DNR on admission


Level of Care / Monitoring Required and available

-Varying degrees of monitoring and care levels -24/7 professional support may be offered in last 2 weeks of life

-24/7 registered staff with patients -high degree of supportive care -advanced skill level in EOL care -sub-acute level of care requirement

-24/7 registered staff with patients -high degree of aggressive clinical/ medical interventions

-24/7 registered staff with patients -Care needs exceed that available in community or LTC settings

-24/7 registered staff on site -PSW 24/7 coverage -Care needs exceed that available in community

Prognosis / typical LOS/ coding

Coded MIS 95 when prognosis is approx 3 months

-PPS < 60 - approx 3 months -ALOS Hospice Windsor/Essex is approx 25 days

Coded Z51.5 when a case meets BOTH of the following criteria: -patient has a terminal illness and is receiving palliative care (―comfort care‖,

―supportive care‖, ―compassionate care‖ or ―pain control only‖)

-General CCC beds: no predetermined or typical LOS -Designated HPC beds: terminal dx. with ALOS approx. 4 months -HPC needs are not well captured with CCRS coding.

-Most patients requiring HPC are those who are already residents and enter EOL phase. -longer LOS than other setting typically

Physician Intervention

-Variable levels of Physician involvement required -House calls typically required for EOLC

-Use of diverse pharmacology requires frequent Physician intervention

- May require care from various specialists to identify & control symptoms

-Use of diverse pharmacology requires frequent Physician intervention

Variable levels of Physician involvement required

Format and content adapted from work done by Sarnia Lambton End of Life Care Committee under the facilitation of A. Baker – validated by each county’s EOLCN committee.

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Figure 5 – Tipping points which contribute to patients’ move from home to another care setting.

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Case studies

Two case studies are included in Appendix 8. Both descriptions were completed by ESC EOLCN local members and are composites based on actual cases. All identifying information has been removed.

Angie

The first case study describes the experience of ―Angie‘ a 35 year old mother whose journey is described from the time of delayed diagnosis to her death in hospital on a medical unit. This case study highlights how availability of palliative care experts and services would have changed the experience and outcome for the patient and family. This case study includes a chart detailing the many services and sectors of care relevant to Angie‘s journey (Service access in this chart is correlated by PPS stage and is coded based on: availability of service, service accepted,or service refused)

Dennis

The second case study highlights the experience of ―Dennis‖ a senior, whose occupationally acquired mesothelioma has required care from many care sectors and services, over the course of several years. Dennis‘ care required a multidisciplinary approach. Dennis was able to access additional financial assistance for equipment and home care staffing through WSIB.

This case study ends with three different scenarios in terms of location of death and by this means illustrates some of the factors which impact decisions related to location of end-of-life care and death. This case study includes a diagram called ―Navigating the Journey‖ which has been coloured to help illustrate the various sectors and locations of care encountered throughout the patient‘s journey.

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SECTION 6

What Will the System Look Like in the Future?

Planning considerations for Future System

The following planning considerations were confirmed during the EOLCN consultation process in 2007 and 2008. (Refer to Appendix 9 for Planning Framework Diagram)

Vision Statement:

―A comprehensive, integrated, coordinated continuum of high quality end-of-life care services is available in a timely manner, irrespective of diagnosis or care setting for individuals residing in the Erie St. Clair local Health Integration Network catchment area.‖ (From ESC EOLCN Strategic Plan)

Key Functions of an integrated Hospice Palliative Care (HPC) system

Key functions of an integrated palliative care system include the following:

Connecting sectors

Insuring use of common language, tools and processes.

Coordinating education across sectors and among disciplines

Providing an accountability/reporting structure which links sectors/providers etc.

Encouraging each sector to be part of a system of care.

General Goals of an integrated HPC system:

System Integration:

Planned, integrated system,

Equity across counties, service sectors and within sectors,

Transparent accountability structure.

Service integration:

Services offered throughout the entire health continuum – The patient is supported wherever ―home‖ is,

Coordinated access and care,

Timely access to specialized, interdisciplinary consultation and care,

Family practitioners integrated with other primary and community care providers,

Consistent care according to quality standards,

Regional consistency with local sensitivity.

Palliative Client and Caregiver Experience:

The ‗right mix‘ of workers,

The right balance of formal and informal care,

Appropriate support for informal caregivers,

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Options available, for setting for care provision, with death occurring in the most appropriate setting in terms of patient choice and need,

Good bereavement and psychosocial support, pain and symptom management,

Focus on the provision of culturally sensitive services.

Other

―Protected designated‖ funding, with cross sector accountability.

Clear expectations and timeframes relating to system-wide outcome reporting.

Efficiency of service delivery – patient is being cared for in the right place at the right time in the right way.

(Adapted from Cancer Care Ontario depiction of Ontario‘s Palliative Care System – Today and Tomorrow131)

Objectives/Outcomes of an integrated system

To improve access to effective palliative care for patients at the end of life in ESC, including expert pain and symptom management.

To improve integration across sectors through common regional processes, structures, education and personnel that connect the sectors, thereby reducing duplication of services (enhancing efficiency).

To improve primary care providers‘ knowledge, skills and confidence in reducing the severity and distress associated with end-of-life symptoms

To improve patient/family and provider satisfaction with the end-of-life care and quality of dying.

To improve the overall standard and quality of care delivered to patient/families at the end of life through the integration of standardized clinical assessment, service provision guidelines, and quality monitoring tools.

To build an innovative model of care that synergistically leverages current provider systems and strengths and is robust and versatile enough to be maintained in the event of changes in personnel.

To enhance concordance between patients‘ preference and place of death.

(Adapted from Niagara region consultation team project132)

Proposed System level indicators

Health System Outcomes:

Increase in number of deaths in the home (i.e. expected deaths with EDITH protocols in place):

Total number of expected home deaths per period (quarter/year) – by county and by overall region.

Percent increase in home deaths per period compared to previous year – by county and by overall region.

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Increase in EOLC service in the community:

Percent increase number of nursing visits, shift nursing hours and personal support worker hours for EOLC.

Percent increase in number of EOLC clients served in the home.

Percent increase in number of visits to OP clinics.

Decrease dependence on acute hospital for EOLC clients:

Decrease in % of deaths in hospital (this data is gained from government data bases and is therefore very retrospective in nature. Use of a proxy measure (e.g. place of death of patients within a designated program) will be explored.

Patient / Family Outcomes:

Concordance between preference and place of death.

Enhanced Patient and family perception of care quality (access, coordination, communication, informed decision-making, timeliness/right services, prepared for death).

Provider Outcomes:

Satisfaction with care integration, communication, coordination, care planning (via survey and interviews)

Sector specific indicators:

A dashboard of data elements and indicators from each sector will also be developed.

(Adapted from Niagara region consultation team project133)

Principles and values

The future service delivery model for Palliative Care in ESC will be based upon the principles and values articulated by the Canadian Hospice Palliative Care Association (CHPCA).134 These principles and values are foundational for provincial frameworks such as that developed by the Ministry of Health in British Columbia.135

Ontario‘s End-of-Life Care strategy endorsed the use of the CHPCA model.136

Planning Assumptions related to Erie St. Clair Regional Palliative Care

Planning assumptions developed by care providers in ESC include the following:

Palliative care needs will increase in ESC (at a level higher than in the province as a whole),

Status quo is not an option. There is a willingness to look at new models,

Model of care will be regional with local iterations,

HR shortages (especially physicians) will continue into the foreseeable future, therefore planning will:

o be very creative with a goal to maximize efficiency/effectiveness of current available manpower (while recruiting),

o leverage the significant expertise and strengths currently available.

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ESC unique solutions are required – create local evidence based best practice and standards of practice

Palliative Care will continue to be required and provided in all care settings,

All sectors commit to work collaboratively (address metrics, define models etc.).

Increase in volume (as well as intensity) will happen in community / non acute care settings and will be resourced appropriately,

Increase in intensity will occur in Hospital settings (e.g. assume role usually filled by a Tertiary Palliative Care Unit),

CCAC and the Expert Team will play key roles in connecting the sectors,

Planning projections will use a Population Based Approach (see definition below),

Education must be ongoing to accommodate a fluid workforce and continue to build capacity

Target Population

Population Based Planning (PBP) Defined

Population Based Planning (PBP):

Plans for the specific needs of a population as a whole whether services are accessed or not,

Includes outcome measurement and accountability,

Requires collaboration within all service providers and partnerships that build community capacity in individual, community and organizations.137

Description of patients who may require specialized HPC

A recent Palliative care consultation team project138 used the following two question inclusion criteria:

Would you be surprised if this patient died in the next 12 months?

Does the patient have symptoms and/or support needs?

This practical criterion has been used in ESC using 6 months as the inclusion target.

Quantifying the target population for specialized program

Several predictive methodologies have been applied using ESC numbers.

Outcomes from these calculations illustrate a significant current and future need for specialized HPC services in ESC:

> 3,000 patients require referrals for assessment,

> 2,000 patients require ongoing consultation,

> 550 patients require direct ongoing care.

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Tables 14 and 15 demonstrate how the projected program volumes are calculated.

Table 14 –Target Volumes – ESC HPC Program Volumes by Program Category Referrals for assessment / Ongoing consultation/ Direct Care

Based on Methodology from Australia Planning Guide (pg 21), used by Fraser Health: Cancer patients:

Assessment for, 90% of patients within the region that die of cancer

Ongoing consultation for 70% of cancer patients

Direct care for 20% of cancer patients Non Cancer Patients:

Assessment of 50% of patients expected to die from non-malignant diseases

Ongoing consultation for 30%

Direct care for 10%

Current Needs Projected Need (2011)

Diagnosis Group

Actual deaths (2005)

Referrals for Assessment

Ongoing Consultation

Direct Care

Projected deaths

Referrals for Assessment

Ongoing Consultation

Direct Care

Cancer 1,411 1,270

(90%) 988

(70%) 282

(20%) 1508 1357 (90%) 1056 (70%)

301 (20%)

Non-cancer 3,700 1850

(50%) 1110

(30%) 370

(10%) 3830 1915 (50%) 1149 (30%)

383 (10%)

Total 5,111 3,120 2,098 552 5338 3272 2205 684

Table 15 – Target volumes ESC HPC Needs – Current & Projected

Application of Predictive Methodologies

Methodology Current Needs Projected 2012 Romanow Report:

#of deaths due to cancer per year plus 20% to include other diagnoses requiring palliative care (PC)

It was assumed that only 67% of those requiring PC would actually utilize services. Some discussion of these numbers being for home care services only

(# of cancer deaths 2007 + 20%) x 67% (1,411* + 282) x 67%

= 1,134 patients requiring palliative home care

Note – ESC CCAC cited a caseload for PC of 1,076 clients in 2007

#of projected cancer deaths 2012 + 20% x 67%

(1,508* + 302) x 67% = 1,213 patients

requiring palliative home care

Kirby Report: Total # of deaths per year multiplied by 73%

Total # of deaths 2005 x 73% 5,111** x 73%

=3,731

Projected # of deaths 5,338 x 73%

=3,897

Palliative Care Australia: - Planning Guide (pg21) Methodology adapted by Fraser Health (in British Columbia)

90% of cancer deaths

50% of other deaths

1,411 x 90% + 3700 x 50% = 1,270 + 1850

= 3,120

1,508 x 90% + 3830x 50% = 1,357 +1915 =3272

* Data Source: Ontario Mortality database; Ontario Population Projections, Ontario Ministry of Finance, Deaths from Cancer by LHIN

** Data source – LHIN staff – from Vital Stats for 2005 *** Projected # of deaths based on 2005 death rate/population (5111/646,360 + 790.7/100,000 population) and projected for 2011 population of

675,070 (Population # from Health System Monitoring Report.)

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Quantifying the Entire HPC Target Population

The calculations above are for a specialized program of Palliative care. Much of palliative Care is delivered at a primary and secondary level (refer to section 2) As a regional program is developed integration is required among all levels and so all levels are part of the target population. (Figure 6 depicts the various layers of the target population).

A three ―layered‖ understanding of target population is described:

1) Potential target population

The total number of natural deaths in any region represents the population who could potentially require some form of Palliative Care Services.139 Much of this care would be delivered by primary care practitioners.

ESC volumes are in excess of 5000 – i.e. all deaths

2) Regional Program Target Population

The target population for the proposed regional program is ―any patient in any sector who is deemed to be receiving palliative care or is defined as ―a palliative care patient‘‘. The volumes cited, by sector, in section 4 above give an ‗order of magnitude‘ sense of potential target population. A regional program will begin the process of tracking patients across sectors and enable development of more fulsome identification of program target population.

ESC current volumes are cited in section 4 and include almost 800 discharges from Acute care, approximately 500 deaths in CCC,, more than 1300 deaths in LTCHs, over 100 in Residential Hospice, over 1000 patients cared for in their home setting etc.

3) Projected needs for Specialized Hospice Palliative Care (HPC) Services –

ESC projected need is over 3000 patients (refer to Tables 14 and 15)

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Figure 6

Key Elements of an Integrated System of

Hospice Palliative Care (HPC)

Sections 4 and 5 above provide information and recommendations related to each sector. A true system of Palliative Care service delivery examines not only patterns of care within each sector but also looks at:

transitions between sectors140,

structures and mechanisms which connect the sectors and

system level accountability.

Twenty–one (21) key elements of an integrated system of hospice palliative care have been identified and confirmed by ESC EOLCN members. These elements are shown in Table 16 below and the current availability of these elements is identified for each county in ESC.

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Table 16 Key Elements of an Integrated System of Hospice Palliative Care (HPC) and

Summary of Current Status by County in Erie St. Clair LEGEND: Y= Yes, Currently Available; N= Not Currently Available P – Partially in place currently ; A@H + = Aging at Home funding for 08/09 will

positively impact this element

Elements of an integrated system of HPC

Current status by County

Chatham Kent Windsor Essex Sarnia Lambton

Structure:

1)Full Continuum Including Residential Hospice N Y P –Res. Hospice In Building Process

2)Each agency has secondary level expertise P P P

3)Clear criteria differentiating roles of the various sectors is

delineated, updated & communicated

P P P

4)Expert Team with cross sector role – funded N P Palliative Medicine Program (PMP)

coordinated by Hospice Windsor Essex provides several components of expert team / on call/single point of access.

Currently not funded.

P & A@H +

5)24/ 7 Access/ On Call to HPC experts N N &A@H +

6)Single Point of Access N N &A@H +

7) Standardized Interprofessional Training and Practice

Based Education (including physicians, volunteers, nursing,

allied health etc.)

P &A@H+ PPSMCP provides standardized education: Fundamentals, CAPCE, APCE; LEAP program will be implemented; A@H funding will provide for Education Strategy development and implementation.

8)Integration with Family Physicians (and other Primary

Care Providers)

N & A@H+ No systematic approach to integration. A@H funding will help address.

9)Systematic adequate system for Physician Compensation N P PMP on call currently paid by WRCP. Ongoing consultation paid via fee for

service, .5 APP, fundraised $

P fee for service and APP

10) Integrated Information System N P Hospice has access to WRCP

pt. records

N & A@H + A@H team will use CHRIS platform

(CCAC documentation)

Process of Care:

11) Standardized Clinical Assessment Tools Y Y Y

12) Standardized Processes to access HPC expertise across

sectors and common “hand off” process between sectors

N P N &A@H +

13) Team Meetings N N N &A@H +

14) Common Patient Records N N N &A@H+

System Level Outcome Measures

15) Use of quality of Life Measures including family

perspectives

N N N & A@H+

16) Clinical System Level Indicators N N N & A@H+

17) Documented System Level CQI Activities N N N & A@H+

System Level Regional Accountabilities

18) Regular reporting to LHIN on system level indicators

and performance of HPC system

N N N & A@H+

19) Regional accountability Structures in place P P P & A@H+

20) Ongoing structure to support cross sector Educational

Strategy across region

P & A@H+

21)Formalized connection with provincial, federal and

international HPC experts/associations

P & A@H+ -Connections are ad hoc and member specific. No systematic framework/structure for incorporating best practice expertise into system-wide improvements.

Elements were identified / validated by ESC EOLCN members. A relevant article is: Building Primary Care Capacity in Palliative Care: Proceeding of an Inter-professional workshop; K. Brazil, D. Howell, D. Marshall, P. Crinchley, P. VanDentlzen, C. Thompson in Journal of Palliative Care; Summer 2007; 23.2, page 113to 116.

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Identified System Level Issues and Gaps HPC ESC

The issues and gaps cited below are followed by related recommendations. (An explanation of each recommendation and how it is tied to the issues and key elements of an integrated system is included with recommendations).

The recent funding received through A@H initiatives will have a huge impact on addressing the identified issues/gaps.

1) Full Continuum of services:

The following key sectors are missing:

Residential hospice in Chatham Kent

Funded HPC day programs in Chatham Kent and Sarnia Lambton

HPC Clinic in Chatham Kent.

Identified Acute Care HPC Tertiary Care Beds anywhere in ESC.

2) Secondary Level expertise in each provider agency and defined access processes:

Long Term Care Homes describe varying levels of expertise and training in HPC. Currently there is no standardized HPC care planning process. (A@H funding will include LTCH education in its mandate)

The following agencies are currently revising HPC provider models and do not have clearly defined models of care or defined expertise available at this point:

o Windsor Regional Hospital – acute care o Windsor Regional Cancer Centre

Community Service Provider Agencies describe varying levels of expertise; access processes to identified experts are not always clear.

3) Expert Team

Poor access to palliative physician and other experts has been the number one issue identified at each HPC consultation forum in ESC in the past two years. Sarnia Lambton and Chatham Kent have no HPC expert team; Windsor Essex has provided a consultation service – however this has not been formally funded (See description in Section 4 above). Aging at Home funding will address this significant gap. First year funding is to Sarnia Lambton with funding to other counties in subsequent years. (Although the A@H funding will not help fund physician care, it will establish structures and mechanisms which will maximize the limited time available from expert physicians and will innovatively and creatively mobilize other experts including forging formal connections with other physicians, advanced practice nurses etc.).

4) Cross sector clinical structure and processes including common system navigation approaches:

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Currently there is a need to improve cross sector clinical communication and continuity of care. For example there is a need to build into the new system structures and processes for:

o 24/ 7 Access/ On Call to HPC expertise o Single Point of Access o Standardized Processes to access HPC expertise and common ―hand off‖

process between sectors (i.e. common navigation system) o Team Meetings

(Work on these processes will be built into the A@H initiatives)

5) Education:

Further standardization, coordination and regional accountability for HPC education is required. The A@H funding will address this.

6) System evaluation

Currently there is no HPC system evaluation in place nor is there a systematic way to conduct CQI activities at a system level. There is no common use of quality of life measures. Additionally there are issues with sector specific data collection throughout system.

7) Regional accountability

Further refinement of the regional accountability structures is required.

8) Human Resource Issues

Human Resource issues include:

o not enough staff to provide shift nursing for patients in the community (providers at consultation forums state that this is linked to lack of pay equity and job security for community nursing vs. other sectors which results in staff shortages/turnover etc.)

o general under servicing of almost all health care professionals in ESC relative to the province as a whole; this shortage is reflected in the poor availability of HPC providers.

o need for ongoing HPC education for all professions.

9) Policy Level Issues

Identified Policy Level Issues include:

o Inadequate funding for Residential Hospice operational costs, o Service maximums – CCAC – need to define new guidelines within limited

budgets, o Expensive medications for patients in the community, o Inadequate funding for equipment rentals for patients at home (e.g. – bed

rentals are time limited etc.) o Inadequate funding for physicians – poor incentives for them to do Palliative

care

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Recommendations for Future System of HPC in ESC

What is required to move Hospice Palliative Care in ESC to an integrated system of care? The recommendations below are a summary distillation of all the sector specific recommendations cited in Section 4 above. These recommendations reflect priorities identified in the listing of Key Elements of an Integrated System of Hospice Palliative Care (HPC) and start to address the identified key issues and gaps. These recommendations are overarching priority elements which will drive the implementation of the other key elements.

To move from our current system of sector specific service provision to a true system of palliative care service provisions requires:

A. Commitment within each agency/organization



D. Full continuum of Care across the system.

E. Human Resource levels which are adequate

Accordingly recommendations are made within this framework.

Recommendations for the system

A. Commitment within each agency/organization:

Recommendation # 1 Encourage each organization / provider to clarify and update its own internal Hospice Palliative Care Program elements and identify linkages to the system.

It is recommended that each agency / organization in each sector:

Clearly define its model of hospice palliative care delivery

Identify secondary level expertise within the agency/facility

Examine (and improve if necessary) practices for coding of Hospice Palliative Care to insure consistency and measurability (e.g. Z51.5 in acute care, MIS95 in CCAC sector etc.).

Continue to advance the use of consistent approaches to HPC across the region. This includes the enhanced use of the ESAS and PPS (as articulated in the aims of the Ontario Cancer Symptom Management Collaborative).

As the system changes, continue to participate in the development and updating of cross sector processes including ―criteria for admission‖ for each county as well as for the region as a whole.

o Include clear descriptions of the ―tipping points‖ which necessitate movement from one sector level to another.

o Disseminate these criteria to all care providers insuring agreement and understanding of different levels of care available.

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o ―Translate‖ the criteria into language and format which is consumer friendly.

Review and respond to sector specific recommendations (in Section 4 above).

Name key organizational contact for HPC programming. Larger multi-sector organizations may wish to identify an Administrative/Management Program leader for HPC in addition to the clinical experts identified. This administrative leader would insure integration within the organization as well as serving as a key contact person for the broader sector. (It is anticipated that this leader would be identified from within the current leadership structure and would not be an additional position.)

Leadership for implementation of recommendation #1:

Responsibility for communicating the above recommendation:

LHIN ESC

EOLCN ESC

Implementation of this recommendation will be the responsibility of each organization/agency.

Assistance with implementation will be offered by:

LHIN ESC

EOLCN ESC

Discussion related to recommendation # 1

An integrated system of HPC starts with every sector being able to:

Identify patients, within their facility/service, who require palliative care,

Provide these patients with adequate palliative care services within the facility/service.

Understand enough about the broader system to know when and to what location the patient may be discharged.

This requires that:

Secondary level of expertise is identified and offered in each organization / service provider agency

Each sector is committed to a cross sector integrated system of HPC service delivery.

A dashboard of HPC data elements (which can evolve into indicators) is reported by each sector.

The degree to which this currently occurs for each sector is described in Section 4 above.

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All sectors/settings described above are part of the Palliative Care continuum. All sectors are represented at the EOLCN and are key partners in the development and implementation of a regional system of Palliative Care.


Recommendation # 2 Establish and Implement Education Strategy:

As part of the A@H initiative related to EOLC in ESC the following recommendations are being implemented:

Conduct a needs assessment relative to Palliative care education.

Develop and implement an Education Strategy/ Blueprint for Palliative care Service Delivery in ESC

Insure that the Education Strategy advances key integrative elements including:

o Standardized Clinical Assessment Tools o Standardized Processes to access HPC expertise o Common Patient Records with common intake process across sectors and

common ―hand off‖ process between sectors

Develop an ongoing structure to support cross sector Educational Strategy across region

Leadership for implementation of recommendation # 2:

Responsibility for the initial development of the regional education strategy is shared among:

Palliative Pain and Symptom Management Consultation Program – key lead

CCAC

EOLCN – ESC

Regional Cancer Program

ESC LHIN


Any clinical speciality requires ongoing education to insure competency and effective care. Because Palliative care expertise is required in virtually all care settings, the educational approach for Palliative care education is very complex and diverse. Two palliative care educational initiatives were introduced across Ontario by Ontario‘s MOHLTC in 1992/1993. Numerous other palliative care educational initiatives are available across Canada.141

In ESC the Palliative Pain and Symptom Management Consultation Program (described in Section 4 above) provides best practice education for nurses, allied health professionals and volunteers. This education is coordinated and well organized within its funded mandate.

Physician education is provided on an ad hoc basis.

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Various sectors provide education to their own staff and may open such sessions to staff from other sectors. The Hospice in Windsor Essex has a funded mandate for provision of education.

No formal linkages exist between formal educational curriculums at colleges and universities and the educational initiatives cited above. Some guest lecture opportunities do occur.

Funding through the Aging at Home initiative has provided opportunity for a needs assessment and development of a formalized education strategy for palliative care education throughout the region. Implementation of this strategy will enhance coordination among all the providers of education thereby decreasing duplication of effort and insuring that consistent, best practice approaches are provided. This funding will also address identified significant gaps in education.

This education strategy will serve as a key vehicle to advance implementation of many of the other key elements of an integrated system..

Development of the education strategy and education structure will be intimately linked with the other strategies cite below.

(Refer to Appendix 5 for outcomes of the needs assessment and description of the EOLC Education Strategy/ Blueprint.)

Recommendation #3 Establish Expert teams:

As part of the A@H initiative related to EOLC in ESC the following recommendations are being implemented:

Develop and implement funded expert consultation teams for HPC in each of the three counties;

Connect these teams regionally

Vest teams with responsibility for clinical leadership related to development/enhancement of key integrative processes such as:

o Standardized Clinical Assessment Tools o Standardized Processes to access HPC expertise o Team Meetings o Common Patient Records with common intake process across sectors and

common ―hand off‖ process between sectors o 24/ 7 Access/ On Call to expert HPC resources o Single Point of Access o Integration with Family Physicians (and other Primary Care Providers) o Integrated Information System o Documented System Level CQI Activities o Clinical System Level Indicators o Use of Quality of Life Measures including family perspectives


Responsibility for the initial team development in Sarnia Lambton is shared among:

CCAC - key lead

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North Lambton Community Health Centre

EOLCN – ESC

Regional Cancer Program

ESC LHIN

Responsibility for ―readiness work‖ for future team development in other two counties:

EOLCN – ESC – all members


Expert teams/ Consultation teams are a core element of a regional palliative care program and have consistently been identified as the number one priority in ESC. Frequently a team is what defines a ―program‖ – i.e. patients referred to the team are considered to be ―in the program‖. There is a significant body of literature to support the development of Expert Palliative Care teams. (Section 4 above provides additional details related to the current status of expert teams in ESC and also provides specific recommendations related to team development.)

The ESC EOLCN applauds the ESC LHIN support of team development through the A@H initiative. These teams will serve as a key catalyst which will advance implementation of many of the other key elements of an integrated system.

The team development will be intimately linked with the other strategies cite below.

(Refer to Appendix 10 for pictorial representation of Community Consultation role across sectors)


Recommendation # 4 Strengthen Regional Accountabilities and Regional Enabling Structures:

Continue to enhance the EOLCN structure including the following key action steps:

Confirm representative membership locally, on the steering committee and Executive Council,

Complete review of ―missing partners‖ and recruit (e.g. University/college reps etc),

Revise terms of reference particularly as it relates to the advisory capacity of the EOLCN relative to A@H initiatives and recommendations from this report.

Enhance communication strategy (e.g. develop newsletter, electronic communication, website, logo etc.),

Continue to advance the role of the EOLCN as an advisory/ enabling structure related to the Erie St. Clair implementation of the Ontario Cancer Symptom Management Collaborative.

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Articulate key accountabilities and reporting structures including reporting to the LHIN about system level outcomes and performance of the HPC system,

Strengthen explicit linkages with provincial associations and include regular reporting (e.g. Ontario Palliative Care Association, Hospice Association of Ontario, Cancer Care Ontario and Provincial End of Life Care Network etc.)


EOLCN –ESC - key lead

With advice from ESC LHIN


Several organizations have been vested with regional accountability for the Hospice Palliative Care System. In ESC these organizations have meshed these mandates with that of the End-of-Life Care Network (EOLCN) and have provided support and endorsement to the work of the EOLCN. This partnership has significantly reduced duplication of effort and has facilitated the development of shared, system wide, regional: vision, goals, objectives and key outcome indicators. Additionally this leadership has provided impetus to prepare submissions for funding for palliative care service in particular the Aging at Home initiatives and will serve in an advisory capacity as these initiatives are implemented and reviewed. As the role of the EOLCN evolves it is necessary to further clarify its mandate and role within ESC. A core principle guiding this partnership model is strategic alignment; strategic alignment not only with the goals of one organization, but with the goals of many.

(Refer to Appendix 1 for further information related to the EOLCN of ESC)

Background on regional accountability roles:

Regional Cancer Program: The Regional Cancer Programs are accountable for oversight and performance outcomes of the regional cancer system, including aspects of palliative care related to cancer service provision. This accountability is based on LHIN boundaries, thus Windsor Region Cancer Program and its Vice President have designated accountably for cancer care outcomes throughout the ESC LHIN region including: Windsor/ Essex, Chatham/ Kent and Sarnia/ Lambton. An interim Physician leader for Regional Palliative Care has been appointed by the RVP at the WRCP. This role is not direct care but provides one day per week administrative leadership for HPC across the region. The Ontario Cancer Symptom Management Collaborative (OCSMC) articulates specific aims (and monitors outcomes) related to regional service delivery of Palliative Care for Cancer patients.

CCAC: The CCAC has region-wide accountability across all three counties. CCAC was identified as responsible for preparing regional Service Delivery plans in response to the EOLC Strategy. CCAC roles not only impact the community but link sectors.

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Palliative Pain and Symptom Management Consultation Program: The advisory documentation for this program describes a system wide consultation role for education and also articulates a symbiotic/advisory relationship with the EOLCN.

End of Life Care Network (EOLCN): Creation of End of Life Care Networks in each LHIN region was one of the initiatives of the provincial End-of-Life Care Strategy, announced in October 2005. These Networks function as strategic alliances of community agencies, hospitals, long-term care homes, and other stakeholders who are all working together to improve end-of-life care services in their area of the province.

(Refer to Appendix 1 for details of EOLC Networks and the End-of-Life Strategy of Ontario‘s Ministry of Health and Long term Care [MOHLTC]).

D. Full continuum of Care across the system.

Recommendation # 5 Continue to advocate and facilitate creative planning for a full continuum of funded HPC services (including Residential Hospice, Day Programs and Bereavement Services) in each community in ESC.


EOLCN – ESC – all members


Gaps in the continuum include:

No residential hospice in Chatham Kent,

Unfunded Day programs in Chatham Kent and Sarnia Lambton and underfunded Day Programs in Windsor Essex,

No funded expert teams – A@H funding will address this.

Inadequate funding exists for Residential hospices. (Refer to fuller discussion in Section 4 above

Recommendation # 6 Embrace members of the broader community as explicit members of the HPC team – particularly Spiritual Care Leaders


EOLCN – ESC


One of the key determinants of a patients‘ ability to stay at home is the presence of adequate informal care giver support. Often this support is not available due to a number of very legitimate reasons. Families may be unable to take time off work, may live in another region, etc. However there may be communities of caring which

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could be mobilized if the expertise to do so was available. Spiritual leaders in each community already do this to some extent. Additional education, related to a ―Share the Care‘ type of program as well as education related to the HPC system as a whole needs to be provided to key community members starting with spiritual leaders in each community.

E. Adequate Human Resource Levels

Recommendation #7

Define baseline levels of Palliative Care expertise required in ESC. Continue to recruit and train. Develop creative models to maximize expertise.

Leadership for implementation of recommendation #7

EOLCN ESC

All member organizations

Consider creating an HR task force as a subcommittee of the EOLCN Steering Council


ESC region demonstrate greater shortages of healthcare professionals as compared to the province as a whole (refer to details in section 3 page13 above).It is expected that this will continue. One of the planning assumptions (see page 79 above) articulated by the members of the ESC EOLCN is:

HR shortages (especially physicians) will continue into the foreseeable future. Therefore planning will:

o be very creative with a goal to maximize efficiency/effectiveness of current available manpower (while recruiting),

o leverage the significant expertise and strengths currently available.

An understanding of the baseline of need is required. Population based guidelines have been articulated in various regions and need to be applied to ESC population. Remuneration strategies for physicians need to be further explored as do innovative models which would maximize the expertise of non-physician roles and primary care roles in order to ―reserve‖ the specialist physician role for the patients most in need of specialized HPC Medical care.

Summary Table – Table 17 below summarizes system level recommendations and provides high level outcome steps, key responsibilities and timeframes. For each of these recommendations detailed work plans are being developed.

- 95 -

Table 17 Summary of System Level Recommendations Hospice Palliative Care – Erie St. Clair Region

Recommendation Initial Milestones Leadership Role Time Frame

A - Commitment within each agency/organization Recommendation # 1 Encourage each organization / provider to clarify and update its own internal Hospice Palliative Care Program elements and identify and implement integration linkages to the system. These programs should be based on current evidence based best practice and the CHPCA model.

*Clearly defined:

model of HPC delivery

secondary level expertise within the agency/facility

key organizational contact

coding/metrics *Use of consistent integrated approaches to HPC across the region:

enhanced use of the ESAS and PPS etc.

cross sector structures and processes and navigation approaches

*Dialogue/action related to sector specific recommendations (Section 4)

*Responsibility for communicating recommendations:

LHIN ESC

EOLCN ESC *Implementation will be the responsibility of each organization / agency. *Assistance with implementation will be offered by:

LHIN ESC

EOLCN ESC

Report circulated Dec. 2008 Discussion with agencies Jan 2009 Discussion with LHIN Feb. 2009 Individual action plans developed-April/May 2009.

B Cross sector education and shared clinical practices which connect sectors Recommendation #2 Establish and Implement an Education Strategy as part of the A@H initiative related to EOLC in ESC

*Education Strategy developed and implemented including:

Needs assessment

Work plan

Implementation *Education Strategy advances key integrative elements. *Ongoing structure to support cross sector educational is established *Evaluation documentation contains specifics related to outcomes.

Initial development shared among:

PPSMCP – key lead

CCAC

EOLCN

WRCP

ESC LHIN

Start Sept.2008 All targets met for year as detailed in plan

Recommendation #3 Establish Expert teams as part of the A@H initiative related to EOLC in ESC

*Expert consultation teams for HPC implemented in each of the three counties. * First team in Sarnia Lambton

Work plan confirmed Nov. 2008

Coordinator hired – Nov. 2008

All targets met *Evaluation framework developed and implemented Evaluation documentation contains specifics related to outcomes.

Responsibility for the initial team development in Sarnia Lambton is shared among:

CCAC

NLCHC

EOLCN

WRCP

LHIN *―Readiness work‖ for team development in other two counties:EOLCN all members

Full implementation in each county completed by May 2010 Sarnia Lambton first patient seen: Feb. 2009 Formal Evaluation submitted June 2009

Recommendation Initial Milestones Leadership Role Time Frame

C-System level accountability Recommendation #4 *Confirm representative membership EOLCN –ESC - key *TOR and key

- 96 -

Continue to enhance the EOLCN structure including articulating clear accountabilities relating to the advisory capacity of the EOLCN relative to A@H initiatives and reporting to the LHIN about system level outcomes and performance of the HPC system.

locally, on the steering committee and Executive Council, *Complete review of ―missing partners‖ and recruit (e.g. University/college reps etc), *Revise terms of reference particularly as it relates to the advisory capacity of the EOLCN relative to A@H initiatives and recommendations from this report. *Continue to advance the role of the EOLCN as an advisory/ enabling structure related to the Erie St. Clair implementation of the Ontario Cancer Symptom Management Collaborative. *Enhance communication strategy *Articulate key accountabilities and reporting structures including reporting to the LHIN about system level outcomes and performance of the HPC system,

*Strengthen explicit linkages with provincial associations and include regular reporting

lead. With advice from ESC LHIN

membership changes-completed March 2009 *Seek clarity from LHIN re advisory role etc. –Dec./Jan.2008 *Communication Strategy - key steps April 2009 *Formalize linkages – starting Nov.2008

D -Full Continuum of Palliative Care Services Recommendation # 5 Continue to advocate and facilitate creative planning for a full continuum of funded HPC services in each community in ESC.

Initial advocacy will be with EOLCN members as it relates to own county sector. Initial advocacy via dialogue around this report and rationale for full continuum.

All members EOLCN Report released Dec. 2008 See timelines relative to recommendation #1

Recommendation #6 Embrace specific members of the broader community as explicit partners with the HPC team – particularly Spiritual Care Leaders.

Plan and conduct workshop with key clergy/spiritual leaders.

EOLCN May 2009

E -Adequate Human Resource Levels Recommendation #7 Define baseline levels of Palliative Care expertise required in ESC. Continue to recruit and train. Develop creative models to maximize expertise.

Discuss with SC creation of a ―system design‖ taskforce / subcommittee to develop baseline calculations and creative solutions to HR issues.

-EOLCN - All agencies

Initiate in April 2009

- 97 -

Conclusions

The ESC region is well positioned to take the next step of palliative care service delivery – development of a truly integrated cross sector model of care across the region. Many of the essential building blocks are already in place:

A critical mass of direct care providers exists that understands and can apply the essential elements of Palliative Care (PC) service provision including standardized assessment and management tools.

Structures for ongoing education are in place.

A palpable passion exists to provide good care.

A regional leadership structure has been established, with key leaders at the table.

While many of the basic building blocks are in place, further development is required to put in place the ―mortar that holds the blocks together‖. This then is the ‗next step‘ challenge.

Within this report, specific next step planning recommendations are included for each sector and for the development of the system as a whole.

The funding awarded through the Aging at Home initiative, coupled with the excellent leadership provided by the LHIN of ESC, are key catalysts which will transform these next steps into reality.

References The GlaxoSmithKline Foundation and the Canadian Hospice Palliative Care Association. (2001). Living Lessons® . 2 Adapted from quote by Dame Cecily Saunders as cited in presentation by B. Smith EOLCN Sept.06

3 British Columbia, Ministry of Health (May 2006). A Provincial Framework for End-of-Life Care. p.1

4 End – of – Life Care Strategy Project. Presentation by Vida Vaitonis, Director Community Care access Centre Branch, Ontario

Ministry of Health, Nov 5, 2004 , referenced in: Ontario Association of Community Care Access Centres (2005)Reference document To support the Development of Interdisciplinary and Integrated End-of- Life Care Service Delivery Models in Ontario. ( Prepared by David Paquette, Summit Consulting). p.6. 5Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and

Norms of Practice, pg. 15 6Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and

Norms of Practice, pg. 18 7Cancer Care Ontario (2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario,

8Steinhauser K et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers.

Journal of the American Medical Association, 284:2476-2482. 9Teno JM et al. (2004). Family perspectives on end-of-life care at the last place of care. Journal of the American Medical

Association, 291:88-93 10

Christakis NA & Iwashyna TJ (2003). The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Social Science & Medicine, 57: 465-475. 11

Miller S; Mor V; Teno J. (2003). Hospice enrollment and pain assessment and management in nursing homes. Journal of Pain and Symptom Management, 26: 791-799. 12

Jordhoy MS et al. (2000). A palliative care intervention and death at home: a cluster randomized trial. Lancet, 356, pp. 888-893. 13

Higginson I. et al. (2003). Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? Journal of Pain and Symptom Management, 25: 150-168. 14

Higginson I. et al. (2002). Do hospital-based palliative teams improve care for patients or families at the end of life? Journal of Pain and Symptom Management, 25: 96-106. 15

Dowdy, MD et al. (1998). A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine. 26: 2. 16

Lilly C et al. (2000). An intensive communication intervention for the critically ill. The American Journal of Medicine, 109: 469-475 17

Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice, as referenced in: Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p.5 18

Senate of Canada. (2007) [online] cited Jan.2008, from: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/agei-e/rep-e/repintfeb07-e.htm#1._The_Challenge_of_Population_Aging 19

Canadian Institute for Health Information. (Sept.2007). Health Care use at the End of Life in Western Canada, press release Appendix A p.1 20

Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice, 21

Cancer Care Ontario (2007). Ontario Cancer Plan: 2006-07 Annual Progress Report. p. 22,47 22

OACCAC,2003 available at http://www.oaccac.on.ca/media/Palliative Issues Paper REV.doc Referenced in: Cancer Care Ontario(October 2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario. p.5. 23

Special Senate Committee on euthanasia and Assisted suicide, Of Life and Death. Final Report (Ottawa;The Senate of Canada,1995). 24

Subcommittee of the Standing Senate Committee on Social Affairs, Science and Technology, Quality End-of-Life Care :The Right of Every Canadian (Ottawa: The Senate of Canada, 2000).

http://www.oaccac.on.ca/media/Palliative%20Issues%20Paper%20REV.doc

25

Senator Carstairs, Still Not There:Quality End-of-Life Care, A progress Report (Ottawa: The Senate of Canada, 2005) 26

Senate of Canada. (2007) [online] cited Jan.2008, from: <http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/agei-e/rep-e/repintfeb07-e.htm#1._The_Challenge_of_Population_Aging 27

Canadian Institute for Health Information (Sept.2007). Health Care Use at the End of Life in Western Canada, p.3. 28

Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach. (online at www.pallcare.org.au) 29

Ministry of Health and Long Term Care.2005, October 4. McGuinty Government Improving End-of-Life Care. Strategy Will Enhance Services in Homes and Hospices [News release]. Toronto: Author 30

End – of – Life Care Strategy Project. Presentation by Vida Vaitonis, Director Community Care access Centre Branch, Ontario Ministry of Health, Nov 5, 2004 , referenced in: Ontario Association of Community Care Access Centres (2005)Reference document To support the Development of Interdisciplinary and Integrated End-of- Life Care Service Delivery Models in Ontario. ( Prepared by David Paquette, Summit Consulting). p.6. 31

Canadian Hospice Palliative Care Association Policy Alert : Health Care Use at End of Life in Western Canada– Sept. 7,2007. p. 1. 32

Schockett E, Teno J, Miller S, Stuart B. (2005). Late referral to hospice and bereaved family member perception of quality of end-of-life care. Journal of Pain and Symptom Management, 30: 400-407. 33

Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p 82 34

H.M. Chochinov. (August 2001), Depression in Cancer Patients, The Lancet Oncology 2. pp499-505 35

Canadian Institute for Health Information. Ottawa: CIHI (2007). HSMR:A new Approach for measuring Hospital Mortality Trends in Canada .p. 18. 36

Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p. 82. 37

Cancer Care Ontario (2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario, p5. 38


Subcommittee to update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology. (2000). Quality End-of-Life Care: The Right of Every Canadian, , FINAL REPORT. 40

CIHI –press release – Sept. 6, 2007 41

Ipsos-Reid. (2004). Hospice palliative care study: Final report. Ottawa, ON: Canadian Hospice Palliative Care Association and the GlaxoSmithKline Foundation. 42

von Gunten CF, Ferris FD, Portenoy RK, Glajchen M. Consultation Services, in CAPC Manual: How to Establish a Palliative Care Program. New York, NY: Center to Advance palliative Care, 2001 as referenced in: Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on

National Principles and Norms of Practice, p56

43

Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles

and Norms of Practice, pg 56

44


and Norms of Practice, pg. 56

45

Palliative Pain and Symptom Management Consultation Program (Feb 2008). 2008-9 CAPCE Program Information and Application Process, pg 3 46


and Norms of Practice, pg. 56

47

Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach. Pg.29 (online at

www.pallcare.org.au)

48

Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach.pg.32 (online at


49

Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach.pg.16 (online at


50

Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach.pg.16,17 (online

at www.pallcare.org.au)

51

Ibid pg17 52

Fraser Health Acute Care Capacity Initiative (March 2006) , ACCI Service Plan for Acute Palliative Care, pg 15 53

Erie St. Clair. Local Health Integration Network (October 2006): Integrated Health Services Plan –Appendix B -Health System Monitoring Report available online at www.lhins.on.ca 54

Health System Intelligence Project-Produced for the Local Health Integration Networks: Population Health Profile: Erie St. Clair LHIN available online at www.lhins.on.ca 55

Lambton County 2007 Health Status Report (Nov. 21,2007) 56

Erie St. Clair. Local Health Integration Network (October 2006): Integrated Health Services Plan –Appendix B -Health System Monitoring Report available online at www.lhins.on.ca 57

Ibid 58

Ibid 59

Ibid 60

Ibid 61

Chatham/Kent and Sarnia – Lambton Community Care Access Centres (June 2005). Palliative End-of-Life Initiative, Strategic Planning Report. pg 3 62

Palliative Care Service Delivery Plan Sarnia/ Lambton and Chatham/Kent - June 2005 63

Palliative Care Service Delivery Plan – Windsor / Essex – 2005 64


Cancer Care Ontario. (2007) Cancer System quality Index Patterns of End-of-Life Care (online)

http;//www.cancercare.on.ca/qualityindex2007/access/eol/index.html

66

Cancer Care Ontario (2008) Cancer system quality Index accessed on line at http://www.cancer.on.ca accessed on 21/08/2008 67

Ibid 68

Vital stats data provided by ESC LHIN staff in communication of Nov. 2007 . 69

Vital stats data provided by ESC LHIN staff in communication of Nov. 2007 . 70

Statistics Canada (date modified 2008-01-16) Table 2-2 Deaths by geography – In hospital and elsewhere accesses on line at: http://www.statcaac.ca accessed on 21/08/2008 71

Cancer Care Ontario. (2007) Cancer System quality Index Patterns of End-of-Life Care (online) http;//www.cancercare.on.ca/qualityindex2007/access/eol/index.html

http://www.cancer.on.ca/

http://www.statcaac.ca/

72

Cancer Care Ontario (2008) Cancer system quality Index accessed on line at http://www.cancer.on.ca accessed on 21/08/2008 73

Ibid 74

Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p 25 75

Meier, D.E. and Beresford, L. (2006). Palliative Care in Inpatient Units. Journal of Palliative Medicine. Vol 9:6 p1244-1248. 76

Ibid 77

Essex Kent Lambton District Health Council (Feb.3,2005) Models of Services and Inventory Development for End of Life Care. Presented at ESC End of Life Care Network initial meeting. 78



http://www.capc.org/impact_calculator_basic/ http://www.capc.org/impact_calculator_detailed/index.php 81

Centre to Advance palliative Care and National Palliative. Archives of Internal Medicine Sept 8,2008 82

Canadian Institute for Health Information. Ottawa: CIHI (Oct.2007).Bulletin: Revised coding guideline for Palliative Care cases Submitted to the DAD in fiscal year 2007-08. (online) 83


Canadian Institute for Health Information. Ottawa: CIHI (Oct.2007).Bulletin: Revised coding guideline for Palliative Care cases Submitted to the DAD in fiscal year 2007-08. (online) 85



Canadian Institute for Health Information. Ottawa: CIHI (2007). HSMR:A new Approach for measuring Hospital Mortality Trends in Canada .p. 22 88

Williamson, Doug (Nov.19, 2007) : Mortality rate „high‟ at Windsor regional Hospital- But officials say there are mitigating factors. Windsor Star 89

Cancer Care Ontario. (2007) Cancer System quality Index Patterns of End-of-Life Care .(online) http;//www.cancercare.on.ca/qualityindex2007/access/eol/index.html 90

Community Health Services Department – County of Lambton. (2007) Lambton County 2007 Health Status Report. p.1 91

Submission from Sarnia Lambton Occupational Health Clinic for Ontario Workers (OHCOW) to Erie St. Clair Local Health Integration Network Request for Planning Information. (Jan 2008). 92


Palliative Care Australia (2005). A guide to Palliative Care Service Development –A population based approach. (online at

www.pallcare.org.au) pg 18

94

Ibid 95

Smith, K. for Ministry of Health and Long Term Care (July 10, 2007), Report of the Investigation of Bluewater Health, accessed on line at www.mohtlc.ca Aug. 2007 pg.23. 96

Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p 25

http://www.cancer.on.ca/

http://www.mohtlc.ca/

97Taylor, C. Director Hospice Palliative and End of Life Care Surrey, BC – Fraser Health, Personal communication with B. Lambie –

email March 18, 2008 98


and Norms of Practice, as referenced in: Canadian Institute for Health Information (Sept.2007). Health Care use at the End of Life in Western Canada, p.68

99

Ibid p.56 100

Hospital Report Research Collaborative (2007). Hospital Report Complex Continuing Care 2007. (online) www.hospitalreport.ca. p.II 101

Hospital Report Research Collaborative (2007). Hospital Report Complex Continuing Care 2007. (online) www.hospitalreport.ca. 102

Hospital Report Research Collaborative (2007). Hospital Report Complex Continuing Care 2007. (online) www.hospitalreport.ca. p.3 103

Canadian Institute for Health Information. Ottawa: CIHI – CHECK 104


Ontario Ministry of Health and Long-Term Care. (online) www.health.gov.on.ca 106

Brazil K., Krueger P., Bedard m., Kelley ML, McAiney C., Justice C., Taniguchi A., (2006) Quality of Care for residents dying in Ontario‟s long-term care facilities: findings from a survey of directors of care. J Palliative Care 22 (1): 18 – 25 107

Fisher R., Ross MM, MacLean M. (2000). Guide to End-of-life Care for Seniors. Health Canada. Tri Co Printing Inc. 108

Kirkpatrick W. Interview with Wendy Kirkpatrick, Administrator, Grandview Home for the aged, Thunder Bay, Ontario. (2007) as referenced in: Kortes-Miller K., Habjan s., Kelley ML., Fortier M., (2007).Development of a Palliative Care Education Program in rural Long Term Care Facilities. Journal of Palliative Care ; 23:2; 154- 162. 109


Fraser Health Hospice Palliative Care (Fall 2002) Creating A Hospice Residence online at: http://www.fraserhealth.ca/Services/HomeandCommunityCare/HospicePalliativeCare.

111A Provincial framework for End-of-Life Care – British Columbia – May 2006 –pg 9.

112

Capital Health Community Care Services, Regional Palliative Care Program –Annual Report April1, 2004- March 31, 2005 and April 1, 2005- March 31, 2006.pg 14. 113

Fraser Health Hospice Palliative Care (Fall 2002) Creating A Hospice Residence pg.15 online at: http://www.fraserhealth.ca/Services/HomeandCommunityCare/HospicePalliativeCare.

114

Capital Health Community Care Services, Regional Palliative Care Program –Annual Report April1, 2004- March 31, 2005 and April 1, 2005- March 31, 2006.pg 14. 115

Bodel, K., Taylor, C., (2007) Fraser Health Hospice Residences, Creating a healing and caring environment at the end of life pg 2-2 116

Bodel, K., Taylor, C., (2007) Fraser Health Hospice Residences, Creating a healing and caring environment at the end of life pg 2-4 117

Ipsos-Reid. (2004). Hospice palliative care study: Final report. Ottawa, ON: Canadian Hospice Palliative Care Association and the GlaxoSmithKline Foundation. 118


10-Year Plan to Strengthen Health Care, Government of Canada, 2004, http://www.hc-sc.gc.ca/hcs-sss/delivery-presentation/fptcollab/2004-fmm-rpm/index_ehtml, as referenced in CHPCA and CHCA (2006) The Pan-Canadian gold Standard for Palliative Home Care pg.2

http://www.hospitalreport.ca/

http://www.fraserhealth.ca/Services/HomeandCommunityCare/HospicePalliativeCare

http://www.hc-sc.gc.ca/hcs-sss/delivery-presentation/fptcollab/2004-fmm-rpm/index_ehtml


120Seow, Hsien ―Use of end-of-life home care services in Ontario,‖ presented to a meeting of the

Provincial End-of-Life Care Networks on October 2, 2008 . (wording for summary of results is as per email sent by P. Cavanagh – Oct. 2008) 121

Ontario Association of Community Care Access Centres (2003). Issues facing CCACs in the delivery of effective palliative home care services: discussion paper. Scarborough,ON:OACCAC. 122

Cancer Care Ontario , Ontario Cancer Plan :2006-07 Annual Progress Report. 123

Cancer Care Ontario. Ontario Cancer Plan 2008 – 2011 available on line at www.ontariocancerplan.on.ca 124

Capital Health Community Care Services, Regional Palliative Care Program –Annual Report April1, 2004- March 31, 2005 and April 1, 2005- March 31, 2006.pg 21 125

Cancer Care Ontario (2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario, p10 . 126

Canadian Hospice Palliaitve Care Association Pan Canadian Gold Standards pg.3 127

Brenneis, C., Bruera, E.(1998) The Interaction Between Family Physicians and Palliative Care consultants in the Delivery of Palliative Care: Clinical and Educational Issues. Journal of Palliative Care 14:3 p 58-61. 128

10-Year Plan to Strengthen Health Care, Government of Canada, 2004, http://www.hc-sc.gc.ca/hcs-sss/delivery-presentation/fptcollab/2004-fmm-rpm/index_ehtml, as referenced in CHPCA and CHCA (2006) The Pan-Canadian gold Standard for Palliative Home Care pg.2 Ibid 129

Canadian Hospice Palliaitve Care Association Pan Canadian Gold Standards pg.8 130

Bodel, K., Taylor, C., (2007) Fraser Health Hospice Residences, Creating a healing and caring environment at the end of life pg 1-6. 131

Cancer Care Ontario (2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario, p10. 132

Howell, D., Marshall, D. Niagara West End-of-Life Care Model – A rural Integrated Interdisciplinary Care Model: Impact on Symptom Severity, distress and Place of Death Concordance presented at CHPCA conference Toronto, Nov. 2007 133

Howell, D., Marshall, D. Niagara West End-of-Life Care Model – A rural Integrated Interdisciplinary Care Model: Impact on Symptom Severity, distress and Place of Death Concordance presented at CHPCA conference Toronto, Nov. 2007 134

Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice, p.19-20 135

A Provincial framework for End-of-Life Care – British Columbia – May 2006 136

Cancer Care Ontario (2006) Improving the quality of Palliative Care Services for Cancer Patients in Ontario 137

A Guide to PC Services Development- Palliative Care Australia 2005 accessed online 138

Howell, D., Marshall, D. Niagara West End-of-Life Care Model – A rural Integrated Interdisciplinary Care Model: Impact on Symptom Severity, distress and Place of Death Concordance presented at CHPCA conference Toronto, Nov. 2007. 139


Hirdes, J.P. Balancing Evidence, Needs and Resources, - Presented at Aging at Home Workshop – Nov., 26, 2007. Toronto, Ont. 141


and Norms of Practice,



APPENDIX 1

End of Life Care Strategy and Networks

Information about Provincial and Erie St. Clair Networks including: History, Funding and Accomplishments

Provincial

History of the End-of-Life Care Strategy and the Networks

The provincial End-of-Life Care Strategy, announced in October 2005, has three objectives:

1. Shift care of the dying from the acute setting to appropriate alternate settings of individual preference

2. Enhance client-centred and interdisciplinary end-of-life care service delivery capacity in the community

3. Improve access, coordination and consistency of services and supports across the province

$115.5 million was announced to: o provide more and improved end-of-life home care (to alleviate pressures

on the acute sector) o support nursing and personal support services in existing and proposed

residential hospices o strengthen the role of volunteer hospice programs, and o support the planning and integration of local hospice palliative care

services through the establishment of End-of-Life Care Networks across the province

Funding

Each of the 14 Community Care Access Centres (CCACs) in the province receives funding on an annualized basis to support the planning and integration of local hospice palliative care services and, thus, fund the Networks in their areas.

Network Roles and Interface with Local Health Integration Networks

The roles of End-of-Life Care Networks include: o broad system design for end-of-life care o coordination and integration of services at a system level o monitoring and assessment of community needs o promotion of service innovations

These Networks function as strategic alliances of community agencies, hospitals, long-term care homes, and other stakeholders who are all working together to improve end-of-life care services in their area of the province.

Because of these roles and functions, End-of-Life Care Networks liaise with their Local Health Integration Networks (LHINs).

Provincial End-of-Life Care Network

In order to coordinate their efforts, the End-Of-Life Care Networks have formed a Provincial End-of-Life Care Network which meets on a monthly basis. The purpose of this group is to:

o identify and recommend areas for shared provincial project planning and implementation, including joint funding requests and grant applications

o provide a common voice that will interface with the Ministry of Health and Long-Term Care and other stakeholders on key issues

The Chair of the Provincial End-of-Life Care Network has also begun to establish close working relationship with the Hospice Association of Ontario and the Ontario Palliative Care Association.

The Ministry of Health and Long-Term Care provides funding through the Ontario Association of Community Care Access Centres to cover the cost of two face-to-face meetings of the Provincial End-of-Life Care Network each year.

Priorities for 2008/09 – Provincial EOLCN

End-of-Life Care Networks have collectively identified an opportunity to collaborate with one another in 2008/09 on the following issues:

o Sharing information on emerging national best practices and standards in advance care planning and identifying opportunities for improving advance care planning practices in the province

o Creating an evidence-based framework for end-of-life care system design efforts across the province

o Further developing the End-of-Life Care Community of Practice developed through the Seniors Research Transfer Network

In addition, each separate End-of-Life Network has identified priorities for 2008/09 that reflect their own local realities.

(The Summary above is an excerpt from a document prepared by Paul Cavanagh –EOLCN Director for Southwest. The document was prepared for the PEOLCN annual report.)

Erie St. Clair End of Life Care Network Summary Listing of Accomplishments and Next Steps

(Complied May 2008 with verbatim additions from service provider agencies.)

A: Listing of Accomplishments related to EOLC Strategy

PATIENT/ FAMILY CARE

1) Residential Hospices: a) Opening of Residential Hospice – Windsor Essex:

May 1 - December 31, 2007

Admissions - 64

83% city

17% county

Average Length of stay 21 days

Waitlist time 4.5 days

Deaths – 56

January 1 – May 31 2008

Admissions - 40

Deaths 36

Average Length of Stay - 22 days

84 % occupancy

In progress of developing a Patient Family Resource Manual for the HRH Partnership with CCAC re wait list, able to get patients in on an average of 4 days of applying. Partnership with Bayshore in providing staff – very successful.

Increase in palliative care service in the home

In 2007 The Hospice of Windsor and Essex County had a total of 842 Referrals for support and Services

City Referrals - 524 (62%)

County Referrals - 318 (38%)

In 2007 The Hospice of Windsor supported 546 Deaths

City Deaths - 369 (68%)

County Deaths – 177 (32%)

Home Deaths 192

The Palliative Physician Program supported 287 Deaths

Hospice Volunteers

Over 13,000 contacts by volunteers with patients/family members/caregivers

Provided over 2,000 rides for patients/caregivers to medical appointments and wellness programs

Over 100 volunteers are part of the team caring for patients & family members in the residential home

b) Planning and preparation for Residential Hospice in Sarnia/Lambton:

Construction is underway and much operational planning/preparation has been done.

2) Implementation of Symptom Management Kits: a) Community Implementation: Implemented in all three counties.

b) Residential Hospice Implementation:

The Symptom Response Kits have also been implemented in the Hospice Residential Home, in order to ensure that the residents of the home have the medications required to treat any symptom that may occur after hours. We have used the same process that the community uses.

Windsor Essex County did a revision of the Symptom Response Kits in 2006, to reflect current best practice EOL Care.

3) Implementation of protocols EDITH (expected death in the home): a) Community Implementation: Implemented in all three counties.

b) Residential Hospice Implementation:

This process has also been implemented in the Hospice Residential Home, utilizing the same policies and procedure as the community.

4) Enhanced use of standardized assessment processes:

Palliative Care Integration Project – excellent uptake in community and WRCC

Ongoing work

5) Formalization of Palliative Medicine Team – Sarnia/ Lambton:

Triage tool

Community rounds

6) Long Term Care Homes Palliative Care Pilot Project – 2 homes in Essex 7) Recruitment of Palliative Medicine Physician – Windsor/ Essex:

Initial steps toward redefining service delivery model in Windsor/ Essex.

We have recruited one full time Palliative Physician , supported by Windsor Essex County and 0.5 FTE Palliative Physician supported from the Alternative Funding Proposal (AFP).

One part time position still vacant – actively recruiting.

The Hospice of Windsor and Essex County developed a Family Physician Resource Binder that provides the family physician with best practice palliative care management tools. The Family Physician and the Hospice Nurse Consultant utilizes this manual to support the patient at EOL in their own home.

EDUCATION / QUALITY / RESEARCH

8) Significant educational activities including the following: Increase in numbers of care providers who received standardized education:

o Fundamentals o CAPCE o APCE

Regional Education on newly mandated DNR process form.

Regional Education on ESC Palliative Care Management Tools.

Regional Education on Standardized Assessment Process (ESAS/ PPS).

Hospice Volunteer Education.

Delivered 2 Volunteer Patient Care Training Programs to 72 new volunteers that reflected a multicultural cross section of our community. Each Training Program is 36 hours and contains the required modules for Hospice Association of Ontario Level 2 Accreditation.

Recruited and trained the ‗Volunteer Component‘ to support the patients, families and caregivers in the Residential Home – a total of 167 volunteers have been orientated, trained, and supported in these new roles.

Continuing education and support have been identified as motivators in retaining and

supporting volunteers in their roles.

ADVOCACY / MARKETING / COMMUNICATION / INTEGRATION

9) Enhanced awareness of HPC issues and enhanced EOLCN structure: EOLCN Director guest speaker at 38 forums.

Significant successful sector specific marketing/ fundraising (e.g. Hospice of Windsor/ Essex and St. Joseph‘s Hospice of Sarnia/ Lambton).

Enhancement of EOLCN structure (see diagram attached).

Submission of 2 regional proposals for the Aging at Home initiative.

Participation in the Aging at Home Innovations Collaborative.

Working with partners within Erie St Clair to enhance awareness of palliative care.

Development of a document to patients and families re. the available services for EOLC in S/L – St. Joseph‘s Hospice initiative.

Integration of Hospice Services within the Hospice Residential Home in W/E: o Wellness Centre Programs o Massage o Social Work o Therapeutic Touch/ Radiance

Partnership with Wellspring Programs in W/E.

The Hospice of Windsor and Essex County hosted visits from six Hospices and provided them with information on the development of a Residential Home. The agencies were:

o Detroit Area Agency in Aging – July, 2007 o Bayshore CCAC London - August 2007 o VON Canada - September 2007 o Carpenter Hospice - October 2007 o Hospice Simcoe - November 2007 o Hospice Peel – November 2007

Hospice W/E hosted a one day workshop on ―Lessons Learned‖ on opening a Residential Home, with over 50 in attendance.

Many sector specific/facility specific public awareness initiatives for example, Hospice W/E produced 3 Volunteer Newsletters to keep in touch with our volunteers.

Erie-St. Clair Hospice Volunteer Partnership Committee initiated.

Ongoing development of Hospice‘s Social Work mandate and service delivery.

In the areas of Chronic Disabled and Illness Management Clients to:

Numerous new and ongoing wellness centre activities at Hospice Windsor Essex and at St. Joseph‘s Hospice in Sarnia.

B: Next Steps EOLCN – ESC – Consensus – May and June 2008

Priority one is to implement A@H initiatives if approved. The following will proceed with or without funding:

PATIENT/FAMILY CARE

1. System Design:

Complete report for HPC services in ESC.

Criteria for admission: o Different criteria between levels o ―translate‖ for client use o Services available by Care Setting

Define services in each care setting: o Improve coding for acute care palliative care and community services

Continue to explore how to implement a Specialized Palliative Care Program-(Aging at home funding will support this if received):

o Define priority needs o Define key components of a regional program, agree upon who provides the components

o Physician role and ‗recruitment‘ 2. LTC Guidelines – Implement in at least 2 more LTCH.

3. Regional implementation of ―Plan of Treatment for CPR and Completion of the DNR

Confirmation Form‖ processes. 4. Standardized assessment tools – increase spread of use and utility of ESAS and

PPS. 5. Collaborative Care Plans (CCP) – merge ESC Palliative Care Management Tools

with Provincial CCPs. EDUCATION / QUALITY / RESEARCH

6. Develop and implement a regional education plan/ strategy including physician education/engagement.

ADVOCACY / MARKETING / COMMUNICATION/ INTEGRATION 7. Continue to enhance EOLCN structure. 8. Develop and implement communication strategy.

END OF LIFE CARE NETWORK (EOLCN) – ERIE ST. CLAIR STRUCTURE

COMMITTEE/COUNCIL Membership Roles

Key decision makers / Senior leaders: - Sponsors –WRCP& CCAC

- Supporters - Chair SC

Strategic Direction

Set Priorities

Meet 2-4 X/year

Endorse integrated planning/actions

OCSMC advancement

Experts in the field

Endorsed by own agency

Chairs of local committees/ Commissioned by local committee

Cross sector regional representation

Integrate across counties/sectors

Recommend priorities for action

Regional Implementation and Integration

Report progress to Executive Council

OCSMC –Steering Committee role

Meet 4-6 X/year

Representatives from as many relevant sectors and professions as possible within local regions

Implement strategic priorities at local level including OCSMC

Recommend priorities for action

Report progress to Steering Council

Local Integration

Meet 4-6 X/year

STEERING COUNCIL

EOLCN Executive Council

Director

Sarnia-Lambton

EOLC Committee

Chatham/Kent

EOLC Committee

Windsor-Essex

EOLC Committee

APPENDIX 2

Community Consultation Results

Below is a summary of themes which have emerged from community feedback. Included are verbatim narrative comments from the on-line survey posted on the LHIN web site. Verbatim comments from other community consultation sources are included to clarify specific themes.

1) Community Forums and Feedback Sources

Community feedback opportunities included the following: End Of Life Care Network Strategy meetings –November 2004, February 2005.

Focus groups and one-on-one contact with 124 individuals as part of preparing the Service Delivery Plans submitted by CCAC to the MOHLTC in 2005.

Review of local newspaper articles/ letters etc. related to End of Life/Palliative Care.

End of Life Care Network Regional forums on Nov. 30th 2006 and Feb. 9th 2007.

Palliative Care Provider Forum on October 23rd ,2007 with over 100 attendees.

One-on-one survey completion facilitated by Chatham Kent Alzheimer‘s Society.

LHIN hosted on line survey and community consultation forums.

Review of Patient Satisfaction results from various care settings.

Results of calls and messages received by Director of the End of Life Care Network.

Validation of needs/key issues/ gaps/ next steps with EOLCN members – 8 sessions in winter / spring/fall 2008.

Results of needs assessment for education initiative – Fall 2008-11-05.

2) Themes

Service provision:

a) High Level of satisfaction, with care providers, from patients/families who have received care:

Regardless of care setting, those patients and families who receive Palliative Care are very satisfied with their care. Comments are often full of emotion and gratitude.

―The nurses and all the other staff were wonderful. It was such a stressful time for the whole family, but the people caring for mom were like angels to the rescue.‖

―We had no idea that professionals could be so kind at the same time as being so capable. We can‘t say enough good things about the care these people provided.‖

b) High level of commitment from care providers:

Care providers in every sector want to do a ―good job‖ at Palliative Care Service provision.

c) Concern that not enough care is available in the home setting:

There seems to be a general recognition across the region, that there is now an option to obtain significant help from CCAC, community Service provider Agencies and others in order to enhance care in the home. However burnout of family members caring for their loved one at home continues to be a theme as is the need for more respite care.

d) Fear that appropriate services will not be available when patients/

families need it:

There is much concern expressed that in-hospital palliative care will not be available even for those who require it. There seems to be a perception that it must be ―either inpatient care or in home care‖ in terms of Palliative Care. There seems to be little awareness of a system that includes all sectors in the provision of End of Life care.

e) Gaps in service

There is considerable feedback about various gaps in service. Of particular note is lack of funding for services such as bereavement as well as concern about care for patients who are geographically isolated from their families and have little informal care provider support in the home.

There is considerable fear and anxiety that hospital Palliative care services will no longer be available (particularly in the Sarnia Lambton area).

Concern over no plans for Residential Hospice Care in Chatham Kent is a recurrent theme.

Human Resources:

a) Physician shortage

In addition to the general concern about too few family physicians, there is a growing concern about a serious shortage of physicians who have training in Palliative Care. The retirement of the Palliative Care physician lead in Essex County has left a major gap.

―My father died three years ago and the care was wonderful. Dr. Jones came to our home and the whole team worked together so well. This year my mother died. The only place we could get a physician to see her was in the emergency room. We had to go there three times.‖

b) Too few trained professionals

Many, many comments were received from providers relating to the need for increased education.

Patients reiterated this concern: ―Staff did their best but several of them admitted that they did not really have any special training to look after my dad. One of them said she was as scared as me about him dying when she was there.‖

Accessing and Navigating the System and Making Transitions across the Continuum:

a) Confusion over how to get service

People‘s first contact with the need for Palliative Care can happen anywhere within the health care system. There is overwhelming feedback that entering the ―palliative care system‖ is not easy.

―First the cancer doctor would not tell me that I was terminal. I had to insist that he tell me that. Then I wanted to stop my treatment and he didn‘t want me to. I said,‘ I‘m dying anyway, why do I want to live a few days longer taking chemo. and feeling sick all the time.‘ Then I asked them about getting palliative care because my aunt in XXX had a palliative care team come to see her. Nobody seemed to even know what I was talking about let alone knowing how to get me care. So I got your name off the internet and I‘m asking you ‗how do I get palliative care? I don‘t want to die in pain‘.‖ (Email to EOLCN Director)

b) Confusion over what Palliative Care really means

―So do we only get palliative care when we are on death‘s door?‖ ―Is Palliative Care something that I need to be in Hospital to get?‖ (Comments from community group consulting with EOLCN Director)

c) Extreme frustration with the poor communication between the

sectors

Many comments related to this issue.

3) Verbatim comments from Survey on LHIN Website

In response to a request for general comments, the following verbatim narrative was received:

With our current shortage of palliative physicians, it is impossible to feel secure that services will be available when needed.

The community needs to recognize this need and support all efforts for End of life care in the home including the medical community.

Many people would say they would wish to die at home. Unfortunately hopes don't always come to fruition due to complexity of case, burn out of family, change in plan, lack of physician support. It is imperative that in Sarnia Lambton the in house palliative care unit is not fragmented which impacts skill set of nurses and quality of care of clients. Would prefer to see 6-8 bed palliative unit maintained as well as 6 bed oncology unit.

Physician availability or RN EC is a priority in this area. Physician shortage makes this only an ideal.

In the past physician was not available to order needed services, drugs and when primary doctor away covering doctors very reluctant to order what‘s needed

No program exists without the support of all team members, the coming together to share knowledge and experiences and to receive support as well.

The definition above did not include Social Work or Dieticians.

We need hospital beds but also need community and hospice. We need to have a choice available.

I feel that family is very important in the process of palliative care. I have experienced it first hand.

For me, and for my family, Hospice would be my choice for many reasons. I know I would be cared for in a home like setting--and my family would receive the support they need as well.

I think until it happens to you - you really don't know what you need. If I or my loved one was well enough to say home - great - if not then you need either an accessible hospice or a palliative care unit like the one in Sarnia.

My mother was cared for both in hospital and in our home. The nurses and others were very kind but it was hard to get things started. When her pain go out of control our doctor had her admitted to the Palliative Care unit where more test and a CAT scan were done that showed that the disease had spread even more. She got special treatment that allowed her to come home for awhile, but then things got out of control near the end and she went back in to the hospital. It was a good thing that she was there when she died, because she bled out at the end and it would have been a bad thing to happen at home. It makes me worried when I hear the controversy about closing the Palliative Unit because even when you want to stay at home, you need to know that there is a place to go when things get out of control. If we did not know that there was that place to go, we would have taken my mom to the emergency department on several occasions when we didn't.

Current home care funding system does not provide sufficient nursing care hours and rates compensate nurses same for giving palliative care as they do for changing a simple dressing - does not recognize the complexity, difficulty.

Need to make referral process prompt and simple for all-sometimes families can become very frustrated with the "system"-there could easily be the need for a person or team to facilitate this once a patient need has been identified.

It is not easy to get palliative care when you need it.

There is a tremendous amt of savings by having someone care for at home. Keeping this in mind the amt of hrs available for extra help in looking after the individual should be increased to more than a few hrs over a wk.

Seamless access to medical information such as a traveling record is necessary in situations where multiple providers are involved. Need to make the best use all the settings of palliative care.( Home, LTCF, cc Palliative, Palliative care unit, Hospice. Client‘s choice is of foremost importance. We must never go to the scattered approach at the hospital.

All the money and expertise put into the palliative unit should not be lost for any other venue for palliative care.

As much as I know some people prefer to die at home, I don't think the community supports are robust enough to support this. It leaves the families feeling that they did not do enough to ease their loved ones suffering. I would prefer that end of life care to be administered by a team of professionals in a hospice setting.

It is important to provide Palliative care in all settings----Hospital, Hospice, community, and long term care facilities.

My Mother recently passed away at her home, and as difficult as it was at the time, I am content that I was able to help her with her request.

Hospice provides wonderful services to those in need of palliative care. Please continue to push for more funding for palliative care in this community.

There must be a range of services available for our community from acute palliative symptom stabilization, home support, hospice support, LTC and complex continuing care. All of these services provide unique and diverse levels of care for illness in our community.

We have already got a unit at Bluewater health that is excellent...why the constant push to dismantle what works and works well? It makes no sense. I have had use of the Palliative care unit with deaths of loved ones in recent years, and also very bad experiences with loved ones dying in the hospital non-palliative floor. Palliative and hospice care is vitally needed and there is no need to reinvent the wheel.

It is my belief that the general public believes that Palliative Care is to be provided in a hospital environment. We need to change that mind-set to help the public understand that it can be provided effectively in the community and in the home. Thanks.

Having been through this experience myself 3 years ago with my mother I found that the hours allotted to have support staff come in and care for the patient was not enough. It was a constant worry that we would run out of the hours allotted. I had 2 other siblings helping and we were still physically exhausted with the amount of care we needed to provide.

Not sure how realistic it is to be in a home setting - it likely depends on the level of care required? Not sure what support is available to have home care at end of life.

Would also like to have other supports in the system such as hospice or inpatient palliative care if my care needs warrant them.

If hospice was available.

We tried to keep our father at home to die. It did not work because he did not have cancer. He had emphysema and was bed ridden for a long time. At the end it took three people to move him and we did not have family who could keep doing that so he went to hospital for rehabilitation to try and make him stronger and he died there. It did not work out like we would like it to.

Home would always be the first choice but is not always possible. Hospice and hospital palliative care are options I would like to have available. Which one I would choose would of course depend on the circumstances and where my needs would best be met.

I think we are lucky to have a residential hospice coming to our community. It will be a welcome addition for our citizens.

No.

If there is no hospice available at the time, I would hospital here in Sarnia. I understand that the palliative care floor at Bluewater Health is now outstanding since the Hospice was closed. Hopefully the new hospice will be ready by the time I need it.

My preference would be Hospice, unless acute palliative care were required in hospital. Home care is so very, very difficult for patient and support group.

When my father was dying of multiple myeloma, he needed the care of both a free-standing hospice and a palliative hospital unit. His pain and symptoms were very difficult to manage and for the most part, his illness trajectory was not well suited to home care. He died on the palliative care unit six and half months after his diagnosis. Our experience would suggest that a cohesive, fully integrated, multi-faceted, system of care options would have been tremendously helpful in terms of meeting the needs of my father and the needs of my family. We found it in credibly difficult to navigate the system due to a lack of information, miscommunication, and unintegrated care. We were overwhelmed by what was happening with my father while at the same time also coping with my grandmother's gradual decline following a massive stroke that occurred one month after my father's diagnosis w terminal prognosis. She died one month before he did. I firmly believe that well delivered end of life care has the ability to alleviate some of the suffering experienced by people living with life threatening illness and that it can provide tremendous support to the dying person and his/her family and friends- it is possible to have a 'good death' in terms of one's perception of being well looked after. Open communication, continuity of care, true multi-disciplinary care for the *entire* unit of care, and accountability are all hallmarks of good hospice/palliative care. In our experience, it didn't quite meet this mark. There were many times when we felt abandoned by care providers, but this is tempered by our deep appreciation for the palliative care unit at the hospital. Without them, our experience would have been far worse. Thank you.

As a retired health care professional, I would be very interested in volunteering for your proposed hospice. My name is xxxxxx and I can be reached at xxxxx until Dec. 29th. If it would be convenient to contact me shortly, that would be great, otherwise, I will be available sometime around the middle of March. Thank you for an opportunity to discuss the skills that I have and to see if I might be suitable to volunteer in your organization.

THERAPY COULD BE INVOLVED SUCH AS REIKI.

SO MY VIEW POINT IS IF FAMILY IS TAKING CARE OF LOVED ONES AT HOME THEY SHOULD BE COVERED FOR THE SUPPLIES FOR MORE THAN 28 DAYS. IT IS MUCH CHEAPER FOR THE PATIENT TO BE TAKEN CARE OF AT HOME THEN IN HOSPITAL.

I am an RPN in the process of becoming a hospice palliative care pain and symptom management resource professional. However, at Windsor Regional Hospital, I am unable to actually provide some pain and symptom management for my patients as I am not allowed to give subcutaneous injections (except for insulin), nor am I allowed to give inhalation treatments to may patients suffering dyspnea. I am skilled with my assessments, am a great advocate, but I must rely on another nurse to seek pharmacological intervention from a physician because I\'m not allowed to call the physician myself. I am in a position of feeling helpless, and in some cases (too many cases) my patients are not receiving adequate pain and symptom management.

My Father had emphysema and COPD and despite the fact he wanted to remain (and die) at home -- and we did our best to make him comfortable, there was so much more

that, in retrospect, we could have done. Unfortunately, we weren't aware of how to access the services we needed.

Even if pt wishes to die at home arrangements need to be in place for donation of organs etc. if that is applicable.

Helping clients die at home needs to be embraced by our system. Health care needs to focus on the whole person not just the clinical aspects of their health. Health care is delivered in many ways in many disciplines.

As described above it is very important to support clients for as long as possible within their own home. Many individuals become frail and require care in LTC, hospital, etc. These individuals should be supported so that they have the choice to have someone with them when they are dying. Evening and night time residents are often alone and die alone. Nurses try to be with the resident but have many other demands.

I would also want there to be a dedicated acute care Palliative care unit with dedicated expert staff if I got into a pain or symptom crisis. I would want the choice of a residential hospice if I didn't have family available to support me at home I would want the extra support needed in addition to available family through the dying process and not just the last week of life. I would want consistent evaluation of the home situation by an expert PC case manager who bases her care decisions on best practice. I would want the same expert level of care in LTC if that was were I was living.

Home is only an option if person is not in need of constant medical attention that can only be provided at hospital.

As long as a hospice can provide the same excellent care provided by the people at the Dr. Linda Bowring Palliative Care hospital unit, I would want a hospice. If not, the Palliative Care until should remain as is.

In response to the question ―If you selected "Home" (as your choice of place to receive palliative care), what supports/help would need to be in place for that to happen?‖ the following verbatim narrative was received:

Physician who visits in the home and knowledgeable in Palliative Symptom management. Community nursing support that is knowledgeable in palliative symptom management, CCAC supports OT, PT, SW,PSW and shift if needed. Volunteer support for respite, supportive care for caregivers including energy work and sw. Equipment and suppliers to support patient in the home.

Home nursing, equipment rentals, System response kit, family support, social workers.

Physician who makes home visits. On call back up for physician Nursing expertise in palliative care available in home and telephone Respite hours from either nurse or PSW depending on level of need. These need to be significant to allow for adequate rest and time to participate in essential and non essential activities.

Nursing care, physician accessible at all times, family support.

Nursing, Social Work, OT/PT, Support Worker, Care Giver Relief.

Personal support worker to assist with care, some respite relief.

Nursing care, support, physician able to do home visits, planning and education.

Palliative Care MD with after hour coverage, and coverage available when away, skilled nurses with a solid knowledge about EOL care including pain and symptom management and including all 8 domains. Nurse must have compassion. Family respite with educated, caring and knowledgeable caregivers or volunteers.

Family members that are supportive, CCAC personal and a plan when time was close to the end.

RN's. PSW, appropriate therapy programs, psychosocial,

Access to medical direction, nursing, medical equipment, emotional support for family members.

Nursing care and respite care.

We need teams of experts who can follow the patient in any place where care is given.

Potentially 24 hour \"care\" Nursing at least a few times per week to daily. Health care aide for personal care. O.T. Depends on specific circumstances.

Strong circle of family, friends and professionals to help with not only the care of the dying, but also the care of the living.

Specialized Nursing care not limited by prescribed # of hours. Assistance with housekeeping activities so I could provide personal care to my loved one or so they could provide to me. Required medical equipment without expense e.g. bed, mattress, pain pump, etc.

Nursing personal support physician home visits psychosocial support- patient and family respite care hospice network.

Relief at night at least. If family were unable to spell me out in the day to pay bills or run errands etc then a few hours in the day each week would be helpful. So much depends on the length of time and the severity of the person's sickness.

Physical equipment, volunteers, assistance with daily running household, physician and nursing supervision.

Have someone sit down with the individual and family to answer all/ any questions. all the necessary supplies and equipment that would be required for care delivered to the home. Have a Nurse Practitioner visit weekly to see if there are any changes in the persons condition, which might require further assist at the home setting. Rest for the care giver. Assist with the physical care if required. Home maker if this would assist the care giver.

Family available 24/7 access 24/7 to physician & expert nurses hospital based care/palliative care unit bed for specialized care possibly overnight or shift nursing possibly respite care.

24 hour physician support.

Hospice respite, nursing and physician support, CCAC support.

CCAC, Hospice, Palliative care Doctor, PSW.

Physician and nursing care for pain control, I would need to have the right equipment i.e. proper bed, I would need good spiritual support and friends that I could speak openly with.

Nursing, pain management specialist, counselling for pt and family, financial support for any appliances, medications etc not covered by OHIP, knowledge about how to have a death at home and not have coroner called, relief so that loved ones could leave the home for a break once and awhile. A plan in place in case the family decides they cannot handle situation at home.

Although home would be a strong choice for me I would need well trained and understanding nursing care, appropriate equipment, meal and housekeeping support.

CCAC.

Nursing.

Nursing assistance at home, hospital bed, nursing supplies, access to medications for pain and symptom management.

Nursing care, respite care, education and spiritual support.

You would need medical help to adjust medications as needed. You would need equipment to help adapt to the patients changing needs. You would need support staff to come in and sit with the patient so the family members could get a break.

Periodic home visits by a health care provider (e.g. 1/week). If I could not care for the loved one, then I would defer to a community or hospital setting.

This would depend on the care requirements of the patient. Nursing support. special equipment (hospital bed) would doctor make house calls? Unsure.

Nurses, physician support, PSW\'s, pain management specialist.

Nursing, Personal Support, Equipment, Palliative physician.

Nursing care, housekeeping support, personal care, support for my caregivers.

Doctor who knows how to help people breathe better and deal with other problems and let us know how sick a person really is. Nurse who is trained to take care of very heavy and sick people. More time for nurses to spend in the home and two nurses at a time.

Physical, practical tools/aids--e.g., bed nursing, medical, spiritual, social work etc pain and symptom management.

I would feel better with nursing care in a hospice setting. I am not sure if it would be available at my home. I am not equipped to handle someone who is dying. I think most people do not know how to deal with a relative who is dying. Not having a nursing background I'm not sure I would know what or how to manage on my own.

A good physician, family, nursing care which maybe 24 hour care at the end -good bereavement support for my family because they still have to live in that home!

This would first depend on the individual and what his/ her supports he/she already have - Family and friends. But definitely Nursing, Home Support Workers, Social Work (if required), Pain Management and any other service available to keep the individual as independent as possible. Allowing the dying individual to choose his/ her care paths even if their wishes change along the way.

Nursing, pain control, housekeeping assistance, possibly social work for necessary equipment to be set up.

Nursing support.

At this point in my life I am not aware of what I would need.

Care team.

Home care would include professional supports such as physician, nurses, spiritual, family and friends. It would be very difficult to care for a loved one without these - that is why I chose Hospice.

If there was a terminal family member, or myself, in the home, I would like the support of all of the above mentioned services as listed in the first question. However, even in the most ideal situation I would still like the option of admission to a hospice if everything became too difficult to manage. It is one thing to think that would be what you would like to have happen, but, never having been through the experience, it could be overwhelming and the need of constant professionals present may become very important. Having said that, it is also necessary as a community to understand what a hospice is and what it offers the families that need their services. Community education to this new concept of patient supportive care, either through seminars, health fairs or other means would be of benefit. My perception is that not many people are aware of the function of a Hospice or what it offers the public.

Nursing, medical dr., social work, and spiritual.

MINIMAL......NURSING CARE WITH FAMILY INVOLVEMENT AND SOME SPIRITUAL VISITS.

PROPER EQUIPMENT WHEN GOING HOME IS AVALIBLE WHICH IS GREAT BUT ONLY FOR A MONTH IF CLIENT LIVES LONGER PATIENTS FAMILY ARE TO PAY EX. THE RENTAL FEE OR BUY THE EQUIPMENT.

Nursing care respite care pain control.

Depending on illness, nursing care for part of the day to allow for regular activities or for relief if sleep is needed by the caregiver.

PHYSICAL, EMOTIONAL SPIRITUAL EQUIPMENT FAMILY FRIENDS.

Ongoing available nursing assessment, monitoring, support and care if needed,

Health care providers such as Doctors, nurses, etc. As well, assistive devices and all medications that would normally be provided in a hospital setting. As well, the ability to rent equipment such as hospital-style (lift) beds, walkers, etc.

Access to Dr. for orders nurse for respite 8hrs. at night counsellor for support someone to teach family to be involved in care.

Nursing care for pt Psychological care for family members‘ medical equipment if needed Access to physicians for medical care needs e.g. pain etc. Help to set up after death plans for family and have pt\'s wishes carried out.

General care help.

Equipment, hospital bed, wheelchair, personal care, nursing care, respite for loved one. Counselling for patient, children, and caregiver. Community support services, volunteer services.

Expert PC physician home visits expert PC nursing visits OT for evaluation of needed equipment Pastoral Care for spiritual support Social work for family/team coping and

planning with end of life issues Personal support worker for personal care, night shift for family relief, meal prep and light housekeeping CCAC for medication and equipment coverage transportation to appointments Volunteer for family respite and companionship.

Nursing care family support.

Pain management, appropriate appliances such as hospital bed (or similar), oxygen, disposable linen, nursing care or training for family members regarding positioning, bathing etc. , pastoral care support.

DEPENDS ON THE ILLNESS BUT WOULD INCLUDE SUPPORTS FOR MY CHILDREN, PHYSICAL, PRACTICAL & PYSCHOLOGICAL. ACCESS TO EQUIPMENT TO ADAPT THE HOME SETTING,

Psychological for self and family, medical support, home care volunteers.

APPENDIX 3

Domains of Issues Associated with Illness and Bereavement

From CHPCA = a model to Guide Hospice Palliative Care – Figure 7

APPENDIX 4

Excerpts from Fraser Health Planning Reports

1) Operational Models – Residential Hospices

2) Description of patient needs in Residential Hospices 1Bodel, K., Taylor, C., (2007) Fraser Health Hospice Residences, Creating a healing and caring

environment at the end of life

APPENDIX 5

APPENDIX 6

Palliative Care – Volunteer Supports by Key Location Service Provided by Volunteer Hospice Program (VHP) and In-house Programs

APPENDIX 7

Summary of Community Support Services (CSS) Funding for Palliative Care in ESC

The table below summarizes CSS HPC funded programs by county.

Funded Community Support Services Specific to Palliative Care

- Available —Unavailable

Chatham Kent

Sarnia Lambton

Windsor Essex

Volunteer Hospice Program FC7258265 (Previous Code 08D)

VON Chatham Kent

VON Sarnia Lambton


Support and Counseling Community Support

FC7258410 (Previous Code 08A)

Hospice Windsor Essex -part of Day Programs

Training Information & Education

FC7258410 (Previous Code 08B)

Hospice Windsor Essex -part of Day Programs

Palliative Education & Pain & Symptom Management

Consultation FC725509410 FC725509490 FC725509491

Managed through Palliative Pain & Symptom management Consultation

Program for ESC & SW

Managed through PPSMCP for ESC & SW

Managed through PPSMCP for ESC & SW

APPENDIX 8

Angie’s Case Study

Notes in italics highlight how palliative care experts and services may have changed the outcome for the patient and family

Disease Journey early 2005 - June 2006 Demographics: Angie is a 35 year old moderately obese woman who lives with her common law spouse, Fred. She has three children, a 12 year old son; 8 year old and 4 year old daughters. Fred is the father of the two youngest children. Angie is the primary financial provider employed as a waitress and has no extra health benefits. Angie‘s medical history includes asthma, and diagnosis of Stage II Carcinoma of the Cervix (2005). Treatment included chemotherapy and primary radiation. Angie smokes a pack of cigarettes a day. She has tried to quit in the past and now feels – ―Why not smoke?‖

Diagnosis: Angie visited her family physician three times in 2004, specifically for complaints of lower back pain and Angie reports that she was told to lose weight. Proactive health screening regarding Pap Smears were not done.

presented in Chatham Kent Health Alliance (CKHA) Emergency department (ER) early 2005 with pelvic pain radiating down left leg (leg very edematous), admitted to Medical bed.

Doppler and blood work completed followed by CT scan and MRI.

Diagnosed with Deep Vein Thrombosis (DVT), extensive abdominal tumor (cervical primary) invading muscles, vascular system and there is widespread metastatic disease throughout her skeleton.

Treated for DVT, pain medication given.

Referred to London Regional Cancer Program (LRCP) for Oncology consultation and treatment options, palliative chemotherapy & radiation were offered.

Angie opted for ―trial study‖ palliative chemo however her intention as she stated was to ―Beat It‖ (prognosis not understood at this time).

Fred took time off work to drive Angie to London and provide support in the home.

Financial problems caused stress and relationship challenges.

Angie is angry at the medical system due to her perception that her diagnosis was missed because she was not believed and dismissed because of her obesity.

Stable Stage: PPS-100% - 70 %

Pain control was an issue as Angie was hesitant to take pain medication even after she received education regarding how the medication works and the benefits of taking it as ordered. Her rationale was to maintain her independence and activity with her children.

She stated that the pain medication made her head ―fuzzy‖. Primary care providers (expert palliative care team consisting of Palliative care physician(s), advanced practice palliative care nurse(s), social worker and pastoral care worker) who are knowledgeable in pain & symptom management can often manage the pain while leaving the patient with minimal side effects.

Goal of chemo was not clearly explained or not understood by Angie and Fred. A system navigator/advocate could have reviewed the information given by the Oncologist and the treatment goals so that Angie could have made an informed choice and begun End of Life (EOL) care planning.

Community Care Access Centre (CCAC) Case Manager (CM) involved and scheduled service provider support: nursing for pain management; social work to assist with financial concerns, psychosocial support for Angie and to initiate discussion about disease process and support available for Fred and the children. (Appointments were scheduled and then cancelled by client). An expert team would have already developed a relationship with Angie and she may have been more receptive to their support.

Seen at London Regional Cancer Centre (LRCP) every 2 weeks for chemotherapy for a total of 5 treatments over 10 weeks and discharged back to her family physician who did not make house calls and did not have hospital privileges. Liaison between the LRCP team and an expert team in the community would have provided a smooth transition of Angie‟s care.

Unable to void, she was seen in the emergency department (ER) for catheterization due to extensive disease involvement of the genital/urinary system and Angie panicked and insisted on ―going to the hospital‖. Angie was admitted to a surgical bed where her pain medications were not managed well and she was labeled as a ―drug seeker‖. Discharged home saying‖ I will never go to hospital again!‖ The nurse in the home, although very experienced, did not have physician or team support. A specialized palliative care unit with dedicated expert palliative nurses and palliative care physician in the hospital could have managed not only her physical pain but also helped her work through many of the other issues that she was dealing with- fear, anger, grief, anxiety, loss of hope.

Second ER visit for exacerbation of pain due to tumor progression, no bed available, returned home with prescription to increase pain medication, no intervention for her present constipation or follow-up note to her physician done.

When her script from the emergency department ran out her physician would not renew it since he hadn‘t prescribed it and she once again had to go to the ER, third visit because she was in a pain crisis. This is a common situation that could be averted by having a palliative care expert team in the community

Angie‘s physician did not have anyone on call for him. An expert team would be available 24/7 and care would be managed with a team approach to avoid ER visits.

Admitted to LRCP due to a pain crisis when attending for pelvic radiation.

Seen again in ER for exacerbation of pain in pelvis, lower back and down left leg. An expert team would keep ahead of the disease process and avoid ER visits.

Transitional Stage PPS-60 % - 30% (summer 2005-winter 2005) Fred returned to work due to financial strain, sister and mother visited daily to assist with children.

Angie has increased pain and because her physician will not make home visits she spends much of her time suffering and making the difficult journey to his office. On most office visits she can only discuss one symptom and needs to make another appointment

for a different symptom. Patients at EOL often have a many symptoms that need to be dealt with at the same time. Suffering can be minimized with a palliative care physician, expert team or palliative care pain outpatient clinic.

Referred to pain specialist at LRCP and was admitted.

Chemo not effective and stopped.

Angie refused palliative radiation for bone pain management.

Angie experienced decreased activity.

Angie does not want to be admitted to hospital now or at the end of her life.

Palliative Performance Scale (PPS) score (50%) the visiting nurse introduced the End of Life Care Plan. Angie wants all interventions so she can live as long as possible for her children. She is closed to discussing death or dying. Angie requires support from a specialized PC team to help her deal with her fears and continue to grow through this illness journey so her children and Fred can experience healthy grief after she dies. A hospice resource centre (geranium House or Myles Miracle Mission) could supply this kind of support.

Does not have a Will and has not appointed a Power of Attorney for Financial or Personal Care. Social Worker was consulted again and Angie would not make decisions due to their very strained financial situation, suffering physical and emotional distress, and the determination to ―Beat it‖.

Angie sits in recliner 24 hours a day and does not wish an electric bed in her home although she is experiencing increased weakness. Patient choices are often driven by lack of information.

Angie is agreeable to Occupational Therapy to assess equipment needs for safety and transfers. Grab bars, bath seat, and commode chair are brought into the home.

Agreeable to daily nursing visits for symptom and health teaching in each domain (refer to the Domains of Issues Associated with Illness and Bereavement source: A Model to Guide hospice Palliative care; Based on National Principles and Norms of Practice) as needed. Many nursing visits last 11/2 – 2 hours. Most nursing visits are not funded for more than one hour. This results in the nurse working on her own time or the agency picking up the extra cost through private donations.

She declines assistance with activities of daily living (ADL‘s) from Personal Support Worker. Patients often strive for independence far past their families‟ ability to cope. This results with a hospital admission or admission to a residential hospice depending on the complexity of the symptoms.

She continues to smoke even though drowsy at times and requires two inhalers/puffers to control asthma symptoms. Danger of fire present as she drops her cigarettes. Actually requires someone present 24/7 to monitor her activities and assist. Residential hospice would provide this at no cost to the family.

Complains of extreme shortness of breath due to asthma, anxiety and increased abdominal distension due to ascities, a paracentisis is preformed to drain the fluid and relieve the pressure on her diaphragm. A palliative care unit in hospital is needed for this type of intervention (short stay), initially.

Continues to have difficulty voiding, indwelling catheter is inserted.

Decreased self esteem/intimacy, relationship with spouse is affected

Tumor invasion of ureters causes an increase of pain and decrease urine output, this is stabilized by a hospital admission (7 days) to insert a Stent into the left Ureter. All the above symptoms are difficult to manage in the home setting or residential hospice. Hospital palliative care beds (for a short stay to stabilize things) are required for this type of intervention.

Angie presents again at the ER, is admitted (10 days) and this time a hospital internist continues to follow her when she is discharged home. An expert team would already be in place to handle this in the community.

Angie begins to talk about ―life losses‖.

Edmonton System Assessment Scale (ESAS) scores indicate that Angie is experiencing anxiety, shortness of breath, depression, pain, drowsiness, poor bowel function, fatigue and hopelessness as ESAS scores for these symptoms are all above 5/10. Multiple symptoms in crisis is not unusual for a patient with Angie‟s prognosis.

Fred continues support at home along with Angie‘s mother and sister. Volunteer help has been refused by Angie.

Angie has no formal church affiliation and requests ―someone to talk to‖. A pastoral care volunteer from Geranium house makes a home visit.

End of Life Stage: PPS-20 % - 0% (Winter 2005 – June 2006) Fred remained at work. Angie was nearing death. Compassionate Benefits Plan was discussed however Fred found the paper work too difficult and did not follow through. They are borrowing money from family and visiting the local food bank to make ends meet. Mother and sister remain involved when Fred is not at home however Fred does not get along with Angie‘s mother and sister.

EOL care plan has been completed by Angie and the CM. She has made a Will and designated Fred as her Substitute Decision Maker (SDM).

Angie would like to remain home as long as possible but she still refuses assistance with activities of daily living (ADL‘s) from Personal Support Workers or volunteer support for family respite. All family members are exhausted and the children are having difficulty at school. Residential hospice could supply a family friendly place for Angie to get the 24/7 care she requires and a place to get support for the children and Fred.

Angie goes to the ED for uncontrolled pain and other symptoms and is admitted to a medical bed (6 days) in hospital and the local internist collaborated with LRCP Pain Specialist, Fentanyl drip and Methadone is initiated in the hospital (this Physician‘s Methadone Prescribing License only allows Methadone to be initiated in the hospital). An expert team could initiate this in a residential hospice or in the patient‟s home.

Social Worker at hospital became involved for EOL support and planning for patient and family. Family was in crisis.

Angie would like to be discharged home to spend time with her children.

Fred is unable to provide the support she needs 24/7 even with CCAC shift nursing. Angie remains in hospital until she dies even though she wants to be at home and with her children. A residential hospice could provide a family friendly place for Angie and her family to be cared for in.

Angie‘s mother and sister have been told to stop visiting at the hospital by Fred, Angie is distraught and she is actively dying, but cannot be managed at home.

Fred is concerned about Angie dying at home with the children present and then living in the house afterwards. A residential hospice could provide this level of care

Children continued to have problems at school and at home. Received support from VON Kid‟s circle program.

CCAC collaborates with hospital staff to arrange weekend visits at home.

Equipment such as hospital bed, commode, oxygen, etc. has been arranged.

IV Medication prepared in hospital as Angie requires a continuous drip.

Home care nurse meets Angie at home to assist with medication management, to provide education/teaching to Fred regarding care needs.

Myles Miracle Mission covers the cost of Angie‘s transportation home via Trans-Care.

Arrangements made by CCAC Case Manager, community support agencies and hospital staff to enable Angie to go home for weekend visits. This includes but is not limited to the following: pharmacy at the hospital, pharmacy in the community, transportation by ambulance transport (cost from hospital to home covered by MMM, from home back to hospital by CCAC), communication with hospital staff nurses, communication with community nurse at home, CCAC Case Manager, oxygen set up, hospital bed, commode, supplies (catheter, IV, incontinence produces, wound management. This planning required hours of the CMs time and all who were a part of the planning.

Angie was able to return home for three weekend visits. Angie died in the hospital in a semi private room on a Medical Unit. Fred stayed seven nights and slept in a recliner chair in the semi private room. The children visited daily. Angie‘s mother and sister were allowed to visit. Angie‘s first husband requested a visit with Angie and his son and when he was refused had to be barred from the hospital after causing a disturbance. Fred was present at the time of Angie‘s death. Angie‘s room mate was very upset. Angie‘s children and mother and sister were distraught that they had not had an opportunity to ―say goodbye‖.

Case Study completed by C/K EOLC committee under the leadership of Cindy Stokes and Ann Brignell

APPENDIX 8 (continued)

APPENDIX 8 (continued)

Case Study 2 – Dennis Dennis, a 66 year old, retired factory worker was entered into a WSIB ―watch‖ study 12 months ago for suspected mesothelioma. Dennis‘ WSIB claim is initiated. Dennis‘ wife has osteoporosis and mild angina. One son lives in a city three hours away. Last week, Dennis awoke at 2 am with shortness of breath. His wife brought him to the local community hospital, 40 km from their home, where he described feeling like he was ―suffocating‖. Dennis was admitted to hospital and treated with oxygen, anti-anxiety medication and mild pain relief. Dennis underwent chest x-ray, CT chest and thorax: both indicating plaques across both lung fields – predominantly left. Biopsy of pleural fluid confirmed a diagnosis of mesothelioma. Dennis was transferred four days later to the specialized centre and underwent left lower lobectomy. He had a normal recovery post-op and was discharged 4 days later with home oxygen and analgesia. He agreed to begin a course of chemotherapy in 2-3 weeks. On discharge, the CCAC Case Manager met with Dennis and his wife in his hospital room. Dennis‘ WSIB claim is approved. CCAC Case Manager (CM) discussed various service available through CCAC program available to Dennis on discharge from hospital. Services offered were:

nursing to monitor the health status of Dennis and assist with symptom management,

Physio Therapy to assist with post op exercises, ROM upper as well as lower extremeties,

Occupational Therapy to assist with promoting independence and safety at home, as well as energy conservation techniques and relaxation techniques.

Dietitian -Dennis stated his appetite was starting to return, so further discussion of dietician services was deferred until home visit by CCAC Oncology CM once Dennis was home.

Nursing visits were initiated when Dennis was discharge home, beginning daily until his symptoms became controlled. Once symptoms controlled, and Dennis and his family were feeling more at ease at being at home, nursing visits were gradually reduced to weekly. When chemo treatment began, nursing visits were again increased to daily post chemo treatment for 1 wk and then reduced to weekly as symptoms were being managed. Initially Dennis did very well post chemo treatment, but gradually he started to experience:

confusion,

increased pain,

weakness,

loss of appetite causing loss of weight,

increased shortness of breath and with that, increase in anxiety.

An occupational therapist visited to identify equipment needs and any safety concerns and also addressed energy conservation techniques. Nursing visits were increased to daily ongoing to address symptoms. The nurse followed up with the Palliative Physician involved with Dennis. Symptoms increased with extreme shortness of breath (SOB) and pain with increasing anxiety and fear. Nursing contacted physician and it was determined that further evaluation was required related to possible need for thoracenetesis. .It was felt that Dennis probably did not require admission to hospital so he was sent to the Emergency room for evaluation and possible thoracentesis. Dennis went to the ER, and the following interventions were provided:

thoracentesis completed,

CT of head completed,

Medications were adjusted for symptom management. Dennis returned home post thoracentesis. SOB subsided, pain was better controlled, appetite remained poor. Nursing visits continued once daily and then were increase to twice daily for symptom management. CCAC Case Manager made a home visit to Dennis and his family to discuss increasing care needs. including the need for a hospital bed Dennis and family were agreeable to hospital bed.(CCAC would normally cover rental for 1 month, for hospital bed, but WSIB will cover cost for as long as Dennis needs as he has an approved WSIB claim.) Need for a hospital bed ended up to be 5 months. The Case Manager also discussed providing assistance with personal care and respite as Dennis was now unable to be left alone and needed assistance with all care and transferring. The Case Manager further discussed that as his condition deteriorates, 24 hr care would be authorized to assist family. ( after conversations with WSIB Case Manager received approval that WSIB will cover costs of 24 hr care, since this extensive coverage is not within the CCAC budget/mandate) Dennis/family state that they want Dennis to die at home. End of Life Care plan initiated, DNR completed. As Dennis‘ physical condition continued to deteriorate, nursing visits and Personal Support Worker (PSW) assistance was increased. Dennis began to receive PSW shift care at night as he was experiencing increased restlessness during night, keeping his family awake. (WSIB was covering cost of care ). Nurse continued to follow-up with Palliative Physician re symptoms of restlessness/anxiety and pain Scenario 1 HOSPICE Family decides they are unable to cope any longer, and are finding it difficult to have PSW workers and nurses visiting every day and staying in their home. Dennis‘ wife is

also very distressed watching Dennis experiencing the various symptoms he is having and she is experiencing an increasing number of angina attacks. Dennis‘son visits on weekends, but cannot leave his job to provide more assistance. Social Work referral was initiated to assist Dennis and his family with end of life issues, providing interventions for depression, relaxation and pain management. Dennis and his family manage for awhile longer, but eventually Dennis requested to be admitted to hospital. Dennis is in bed all the time, needs assist with all his care needs and all transfers and repositioning. CCAC CM discusses with Dennis and his family admission to Residential Hospice rather then hospital. Dennis and his family are agreeable and Dennis is admitted to Hospice where he dies 14 days later. Scenario 2 -HOME DEATH Dennis‘ condition continues to deteriorate. He and his family are agreeable to 24 hr care and shift nurses are available for the night shift to give SQ injections and manage pain/symptoms without waking the family (WSIB covers the costs). Dennis is also starting to cough up increased amounts of bloody sputum. Family make telephone call to nurse who makes nursing visit and does teaching re symptoms of lung cancer. Nurse /Dr are able to keep symptoms controlled; family have built trust with nurse re symptom management and follow through with care suggestions. Dr is making home visits as needed. Dennis dies at home. Nurse makes follow-up bereavement visit with spouse. Scenario 3 HOSPICE RESPITE then HOME DEATH Dennis and his family want Dennis to die at home but need increasing levels of assistance with his care. Service Providers were only able to provide Personal Support Worker (PSW) assistance during the day from 0700 – 2300. Service Providers do not have enough staff to provide night shift care (prefer Nursing staff due to SQ injections needing to be administered, but family would accept PSW and then have family member get up to give injection when Dennis needs it. However no PSW staff are available either.). Family tries to manage Dennis‘ care for as long as possible; son takes vacation days to help mother with care of his dad. Dennis is sent to hospice due to lack of service providers in the community and then returns to own home when service can be reinitiated. Dennis dies at home. Scenario 4 HOSPITAL DEATH Dennis starts to experience increased confusion, trying to get out of bed without assist and becoming angry when caregivers attempt to provide his care. Dennis is coughing up copious amount of blood Dennis needs assist with all transfers, repositioning in bed as well as personal care. Family are expressing to nurse their fear of what is happening with Dennis. A Social Worker is also making home visits to counsel Dennis and his family about death and dying and to provider anticipatory grief counselling. Late one

night, family call nurse to say they have called an ambulance to have Dennis transferred to hospital because he has just had a seizure. Dennis is admitted to hospital with uncontrolled seizure activity and increased confusion for symptom management. The goal is to stabilize and control symptoms, however Dennis continues to experience very frequent seizures, with increasing agitation/confusion. Dennis remains in hosp until he dies. Case study completed by S/L EOLC committee under the leadership of Georgie Houston, Karen Dally, and Sue Roger.

APPENDIX 9

PLANNING FRAMEWORK April 2008

APPENDIX 10

Community Based Services Support Patients Wherever ―Home‖ Is (Adapted from Fraser Health Model)

Documents

Hospice Palliative Care In Erie St. Clair/media/sites/esc/Goals and Achievements... · Hospice Palliative Care In Erie St. Clair Report on Current Services and Recommendations for