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Practice Support ProgramEnd of Life
Learning Session 1
Ambiguous dying
2
“There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced
heart failure,
we will have had a 50-50 chance to live for six months on the day before we died”
Joanne Lynn:
Sick to Death and Not Going to Take it Anymore (2004)
<as per your timing> <note: slides with an are optional>
Agenda
3
O
Action-oriented: try what you learn – “What are you going to do next week?”
Test and implement in small populations, then spread to the larger population
Discussion with colleagues
How is a collaborative different than CME?
4
Learning Sessions and Action Periods
5
LS1 LS2 LS3
AP1 AP2
PSP physician payments
6
Module # of Sessions Total Payment
Learning Session 1MOA salary replacement
14 hours @ $20/hr
$ 407.81$ 80.00
Action Period 1 2 $ 815.62
Learning Session 2MOA salary replacement
14 hours @ $20/hr
$ 407.81$ 80.00
Action Period 2 1.5 $ 611.72
Learning Session 3MOA salary replacement
14 hours @ $20/hr
$ 407.81$ 80.00
Total Payment $ 2,890.77
Module aims
Improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Early Identification (Registry Building)
Enhance and Improve physician confidence related to End of Life care (e.g. care planning, forms, communication, resources)
Improve Collaboration (clarity of roles, appropriate resource referrals, network of community resources, etc)
Improve the experience of the patient, family, physician, MOA and healthcare providers in End of Life care.
Module aims
8
Improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Early Identification (Registry Building)
Enhance and Improve physician confidence related to End of Life care (e.g. care planning, forms, communication, resources)
Improve Collaboration (clarity of roles, appropriate resource referrals, network of community resources, etc)
Improve the experience of the patient, family, physician, MOA and healthcare providers in End of Life care.
Module aims
9
Module aims
To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Improving collaboration:o Identifying and referring appropriate patients to specialty
palliative care and others for consultation and services.o Understanding provider needs, clarifying roles, tools and
resources for practice support and collaboration.o Improving collaborative care planning, coordination and
communication with patients/caregivers and physicians and other local health care and community providers.
“Integration
in Action”
10
End of Life Regional PSP Outline
11
PSP End of Life Care Algorithm
12
The patient and family voice
O
End of Life Care: Expanding the scope
We are living longer. By 2025: 30% of the population >65. 33% increase in deaths over
2004. 2/3 will die with 2 or more chronic
diseases after months or years in state of “vulnerable frailty”.
Only 20% of us will die with a recognizable terminal (“palliative”) phase.
Changing the face of dying
15
Cause of deaths in Canada
16
O
17
O
Modified from Lunney JR et al. JAMA 2003: 289: 2387.
End stage organ failure: Approaching End of Life
18
Fun
ctio
n
Death
High
Low
Begin to use hospital more often, self-care more difficult
Time ~ 2-5 years.
Death usually seems “sudden”
Terminal
Phase
Ambiguous dying
19
“There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced
heart failure,
we will have had a 50-50 chance to live for six months on the day before we died”
Joanne Lynn:
Sick to Death and Not Going to Take it Anymore (2004)
20
The Palliative Approach to life-limiting illness
Canadian Hospice Palliative Care Association: Model of care (2002) www.chpca.net
22
Bereavement
Care
Illness trajectory
Diagnosis of life-limiting
illness Death
Disease-modifying therapy
Palliative Approach to Care
Palliative care is an approach that:Improves the quality of life of patients & their families
Through:Prevention and relief of suffering
By:Early identification
Impeccable assessment & treatment http://www.who.int/cancer/palliative/definition/en/
WHO definition of palliative care
23
Guided by person centered goals of care:
1. Pain and symptom management.2. Psychosocial care for person.3. Psychosocial care for family.4. Spiritual care.5. Disease management.6. Preparing for and managing dying.7. Bereavement.
(Canadian Hospice Palliative Care Association: Norms, 2002)
Palliative Approach
24
Palliative Approach: Care through all the
transitions
25
Patient Journey
McGregor and Porterfield 2011
Time of
Diagnosis
Decompensation
experiencing life limiting
illnessDecline and last days
Dependency and
symptoms increase
Death and bereavement
Transition 1 Transition 5Transition 4Transition 3Transition 2
Early
Chronic Disease
Management
Survivorship
Seniors at risk
Disease advancement
Best practice: Collaborative and interdisciplinary
26Palliative Care Australia
Evidence for an expanded scope of the Palliative
Approach to care in family and specialty practice?
151 participants (patients recently diagnosed with metastatic non-small-cell lung cancer) were randomly divided into either an early palliative care cohort or a standard care cohort
Study design/Measures
28
The study examined…
Quality of life
Mood
Survival
Improved quality of life
29
Improved mood
30
O
Improved survival
31
Those who were assigned to early palliative care had improved mood, more frequent documentation of resuscitation preferences and less aggressive end-of-life care.
Study conclusions
32
O
“Good death” in the most appropriate location.
Better pain and symptom management.
Better long term outcomes for bereaved relatives.
Improved experience of care.
Better quality of care.
Lower health care costs.
Zhang et al. Arch Intern Med Vol 169(5) Mar 9 2009:480-488
Expected outcomes of an early palliative care approach
33
Think about your self-audit OR a recent death of a non-cancer patient you were involved with`
Were you satisfied with the experience? › If so, what made it work?› If NOT satisfied, why not?
What were some of the gaps in clinical care? What could have been done differently?
Table discussion
34
Identification of patients who may benefit from a palliative
approach: The first step to improve the
patient and family experience of care
Who would benefit from a palliative approach?
36
37
PSP End of Life Care Algorithm
Three triggers for supportive/palliative care:
1. The surprise question: “Would you be surprised if this patient were to die in the next year?
2. Choice/need: patient makes a choice for comfort care only, or is in special need of supportive/palliative care.
3. Specific indicators: clinical indicators for each of 3 main EOL groups (cancer, organ failure, frail elderly /dementia).
Sentinel Events is another trigger to help identify patients.
Identify patients: Gold Standard Framework triggers
38
WOULD I BE SURPRISED IF
JAMES LEE DIED WITHIN THE
NEXT YEAR?
General: Co-morbidity. Recent, multiple ER visits/hospital visits. Complications of recent hospital stay. Reducing performance status
(ECOG/Karnofsky/PPS). Dependence in most activities of daily living
(ADLs). Impaired nutritional status despite attempts to
improve
› Serum albumin < 25 g/l.
› Weight loss 5-10% of body weight (last 6 months).
Identify: Use prognostic indicators
40
41
Palliative Approach: Care through all the transitions
“Well, that was a close call. What were you thinking about when this happened?”
“What if things don’t go so well the next time?”
“How did your family do during this time?”
Sentinel event questions
42
How will you think differently about identifying patients?
How will you communicate and to whom?
Registry building – what approach will you take?
Consider who should be involved in your community and when would it be appropriate to refer?
Identification: Table discussion (15 minutes)
43
Include patients with advanced disease:
› Cancer › AIDS› COPD and other chronic respiratory conditions› Chronic heart disease› Renal failure› Neurological conditions, including dementia › Frailty or multiple co-morbidities
Consider patients in residential care as a target population
Patient registry and flagging charts
44
Changes in appearance Missing appointments Admissions to Long Term Care or multiple hospital
visits or even frequent doctors visits Family members expressing concern, wanting to
talk to the doctor about them Changes in behaviour Changes in gait Decrease in ability to care for themselves Changes in communication Gut feeling
Identification - what changes do you see?..... Flagging by MOA
45
What have we learned?
1. The whole team can seek to identify potential patients.
2. Tools are available to support identification› Surprise question (intuitive awareness of
transition).› Choice (readiness of patient).› Clinical indicators (Functional/Prognostic
signs).
3. Tools are available to support identification.
Identification: Pearls
46
Break
Communication
Goals of this section:
Review and discuss key pearls pertaining to ACP discussions.
Review videos of ACP conversations and discuss.
Hear about your experiences holding ACP conversations.
Communication cont.
49
Six key components:
1. Talking with patients in an honest and straightforward way.
2. Willing to talk about dying: Not abandoning / avoiding the dying patient.
3. Giving bad news in a sensitive way: Balancing being realistic with maintaining hope.
4. Listening to patients.
5. Encouraging questions.
6. Sensitive to patients readiness to talk about death.
Critical importance of communication
Weinrich et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis. AIM 2001; 161: 868-874; Curtis, J
Gen Intern Med 2000; 16:41
50
Listen for feelings, fears, concerns as well as who this person is and what is important to them
Where are they in disease trajectory? Are they in transition from one stage to another Even if you don’t think you can connect easily, you can
learn to do this
Empathy
51
Iatrogenic suffering – what families remember
Breaking bad news (Buckman) SettingPatient PerceptionInvitationKnowledgeEmpathyStrategy & Summary not YIKES!
Breaking bad news - SPIKES
52
Patients often give you an opening…..
Patient history form / intake assessment.
Annually for all adults: “I talk with all my patients about this and we talked a little about this last year…”
Part of chronic disease management: “Hope for the best but plan for the worst…” "This illness can have a fairly predictable course…here are some things you need to think about ahead of time…"
Following ER / Hospital admission: “I understand you have been in the hospital. What did the doctors say?”
When to hold ACP conversations
53
“My Voice” is a guiding document for ACP conversations. Documents patients wishes concerning…› Medical Interventions
› CPR/No CPR
› Friends and family to assist in decision making on behalf of the patient.
Also describes location of other pertinent planning documents.
Provincial ACP guide available soon Will include documentation re:
› advance directives
› representation agreements
› providing contact information
› for temporary substitute decision makers
!!when available insert image of the MOH pt guide
54
1. What do you think is the cause of your health
condition/symptoms?
2. How much intervention do you want? (i.e., No assisted
ventilation? BIPAP? Better symptom control?)
3. What do you hope for with this current plan of care?
What else do you hope for?
4. What fears or worries do you have about your illness
or medical care?
5. What was your last hospitalization like? What did it
mean to you?
6. Have you talked with your family about your wishes
for future medical care?
7. If you weren’t able to make your own health care
decisions, who would make them for you?
8. How comfortable are you talking with your family/friends
about these wishes?
9. You and I have talked about CPR, and I gave you some
booklets on it. What have you learned about CPR?
10. What do you understand about your health condition?
What does your family understand?
11. What do you know about the possible complications of
_______________ (kidney failure, COPD, CHF, etc.)?
12. Are there any other concerns you have about your
health care wishes?
13. How has your illness interfered with your daily
activities?
14. Tell me what you understand about the options for
treating your illness.
15. What treatments/medications interfere with your quality
of life?
Scripted question (see handout)
Groups of 3
› Each scenario has 3 roles: patient, clinician, and observer.
› Choose role you wish to play.
› Take 1-2 minutes to review your role.
› Clinician initiates the 5 minute conversation.
› Take 2 minutes to review the role play together.
Skills-based practice session
56
What feelings did you experience as you played the role of the patient?
What did you learn as you played the role of the observer?
In the clinician role, what surprised you?
What 1 thing might you change about your ACP conversations in the future?
Review skills-based exercise
57
Your experiences with ACP conversations
Group discussion
58
Collaboration with your local team
Who is on the local Primary Care Team? What does primary care team collaboration
look like? Involvement varies based on Transition Working with
› Home and Community Care
› Specialty palliative care team
› Non-palliative consultants (specialists) Local resources + CHARD reference Discuss when to refer in your community.
Objectives
60
Who is the patient’s care team?
Patient, family and informal network Family physician Community pharmacist Home Health / Community Care –
Nurses/rehab/home support
Nurse practitioners, community RT Disease specific consultants / services Hospice palliative care consult teams
61
Palliative Approach: Care through all the transitions
62
Patient Journey
McGregor and Porterfield 2011
Time of
Diagnosis
Decompensation
experiencing life limiting
illnessDecline and last days
Dependency and
symptoms increase
Death and bereavement
Transition 1 Transition 5Transition 4Transition 3Transition 2
Early
Chronic Disease
Management
Survivorship
Seniors at risk
Disease advancement
Transitions in life-limiting illness
63
Would NOT be surprised if patient died in next year
– Discuss goals, wishes & plans as illness advances. Initiate advanced care planning.
– Identify other involved providers & ensure information exchange.
– Medical assessment of patient symptoms, needs & supports.
– Consider referral - Chronic disease clinics. Home and Community Care if functional status declining and home based supports needed.
Transition 1 Advancing disease
64
Prognosis months vs. more than a year; cancer-PPS 50%Focus on Integrated Care Planning & Coordination with Home and Community Care
Coordination of care conversation: GP and HCN. Enable ready access to achieve co-provision of care vs.
parallel practice. Assess needs and develop plan Tools – BC Palliative Care Benefits application (drugs &
HCN assessment); GP letter from Home Health
Transition 2 Decompensation
65
Working together GP and Home and Community Care?
66
When to refer to HPC specialist: Indicators
Complex patient / family needs or anticipated illness course.
Distress with symptoms or coping remains
› No resolution within 2-3 interventions.
› Distress continuing.
› Complex family dynamics and indications of total pain.
Self reflection - knowledge, skill and ability of involved team in relation to
patient/family needs.
67
• Communicate:
• relevant patient-specific information
• family issues if relevant.• Clarify early in Specialist-GP relationship:
• roles in care of patient through transitions of Chronic Disease Management
• needs, expectations and outcomes from the consultation
• Indicate lines of communication/availability to share care effectively.
Specialist-GP shared care
68
• If palliative approach appropriate:
• reflect in treatment recommendations
• give GP permission/advice about stopping medications.
• Inform patient/family
• All options including palliative care with no active treatment
• realistic outcomes of treatment options • Give patient ACP planning documents:
• follow up with all care providers– include in communications to GP
Specialty practice and EOLO – when SPs
are not
attending
69
Shared care through end of life Include recommendations for disease specific symptom
management as patient approaches end of life. Indicate availability for access to advice throughout
transition to support GP in the care of patient at end of life. (telephone fees available to both to support)
Specialty practice and EOLO – when SPs
are not
attending
70
• Urgent advice needed (< 2 hours)
– Specialist fee G10001
– GP with Specialty training fee G14021
– GP requesting urgent advice fee G14018 (if brief)• Less urgent advice (up to 1 week)
– Specialist fee G10002
– GP with Specialty training fee G14022
– G14077 GP Attachment Conferencing for conferencing with at least 1 other Allied Care Provider (includes physician, Home Care Nurse or other AHP) – per 15 minutes or greater portion – 2 units/day 18 units/calendar year per patient across any setting. This replaces G14015/16/17 for all FPs participating in Attachment (requires annual submission of participation codes G14070/G14071)
Telephone fees to support GP-Specialist shared care at EOL
O – when SPs
are not
attending
71
Think about your practice in relation to the palliative approach + transitions 1 and 2
1. How can you more effectively work as a team with these patients?
2. How can you support one another?3. What could you do differently to maximize the roles
and time of all primary providers?
Collaborative practice: Table discussion
72
Identify one aspect of care that you will do differently in your practice.
Collaborative practice: Table discussion
73
Action period planning
Module aims
To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Improving collaboration:o Identifying and referring appropriate patients to specialty
palliative care and others for consultation and services.o Understanding provider needs, clarifying roles, tools and
resources for practice support and collaboration.o Improving collaborative care planning, coordination and
communication with patients/caregivers and physicians and other local health care and community providers.
“Integration
in Action”
7575
PSP End of Life Key Measures – Measured by practice
# of patients identified and placed on a registry.
% of patients on a registry with a collaborative proactive care plan in place.
% of patients on patient registry that have been given My Voice and had an ACP conversation.
% of patients on the registry that had an ESAS and or PPS (as appropriate).
7676
Key measures – non-practice based % of GPs and healthcare providers that have an
improved experience in caring for patients at End of Life.
% of GPs that are confident when engaging patients and their family in conversations about End of Life (1-10 confidence scale).
% of patients/caregivers who feel comfortable with their End of Life care plan.
% of caregivers who feel supported when caring for patients at End of Life.
7777
Finding changes
End of Life change package. Team ideas. Peer changes.
7878
The Action Period is the time in-between learning sessions
It’s where you do stuff
Friendly reminder
79
Action Period 1 planning <YOUR FORM>
Pt Identification
Communication
Collaboration
80
Payment forms O
