BEST PRACTICES TO IMPROVE END˜OF˜LIFE CARE · BEST PRACTICES TO IMPROVE END˜OF˜LIFE CARE by Nidus Personal Planning Resource Centre Association Nidus was founded by the Alzheimer

PRESENTATION & RECOMMENDATIONS

Introduction Background and summary of recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Clarity in EducationNeed for accessible information and forms; need for collaboration on education and training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Recommendation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Confidence in the LegislationNeed for minor amendments to clarify the intent of a Representation Agreement Section 9 to be a fully effective end-of-life planning document . . . . . . . . . . . . . . . . . . . . . . 4Recommendation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Responsiveness using the Personal Planning RegistryNeed for responsiveness in communication—so a patient’s information is connected to the right people at the right time . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Recommendation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

RESOURCES & SERVICES

Information on Representation Agreements and Personal PlanningWhere to find information, forms, and personal help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Using the Personal Planning RegistryHow to create your Registry account and register your completed document(s) . . . . . . 8What authorized third parties—Access Users—can view . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Based on a presentation to Select Standing Committee on Health, Legislative Assembly of BC

BEST PRACTICESTO IMPROVE END-OF-LIFE CAREby Nidus Personal Planning Resource Centre Association

Nidus was founded by the Alzheimer Society of BC, the Council of Seniors Citizens’ Organizations (COSCO), Disability Alliance BC (formerly BC Coalition of People with Disabilities), and Inclusion BC (formerly BC Association for Community Living) .

http://www.alzheimer.ca/en

http://coscobc.ca/

http://www.disabilityalliancebc.org/

http://www.inclusionbc.org/

www.nidus.ca

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mail 1440 West 12th Avenue, Vancouver, BC V6H 1M8 | voicemail 604 .408.7414 or 1. 877. 267. 5552 | fax 604 . 801. 5506 | [email protected] | www.nidus.caNidus is a non-profit, charitable organization with expertise on Representation Agreements.

The Nidus Personal Planning Resource Centre Association is a province wide, non-profit, charitable organization. Nidus is a Latin term for nest: a symbol of support and safety.

Nidus was established in 1995 by seniors and disability groups who were involved in a grass-roots effort to reform adult guardianship legislation, in partnership with government. The foundation of the reform was the creation of the Representation Agreement Act and a new legal tool that all British Columbians may use to authorize personal supporters to assist them with decision making in the event of illness, injury or disability.

This effort and Nidus’ education activities turned the spotlight on planning for incapacity and end-of-life whereas previously the spotlight was solely focused on making a Will and planning for after death.

Nidus has become the go-to-resource for the public, community organizations and professionals on Representation Agreements and other personal planning/advance care planning tools and practices. Nidus provides Representation Agreement forms for the public on its website.

Nidus also operates an online Registry for personal planning information and documents. More details are provided on pages 4-6.

Presentation material versus written submission Our written submission highlighted the Personal Planning Registry service.

We have included additional information and recommendations in this presentation based on recent events and discussions with legal experts, partner organizations, and other groups who have made submissions.

Although we highlight some of the problems, this presentation is about opportunities. There is no need to spend time and energy on developing new legislation; we can strengthen the existing legislation with minor amendments. There is no need to create information and education materials, training programs or workable legal forms from scratch—Nidus has comprehensive and tested resources for the public and professionals that need financial support and institutional commitment to scale up. There is no need to develop a responsive communication system for patients’ end-of-life care wishes—an online Registry is built, it is operating, it is sustainable and it can be implemented within the health system immediately and at no cost.

Nidus Recommendations

To improve end-of-life care in British Columbia, we need:

Clarity in the education and practice of Representation Agreements and other planning tools with collaboration on messaging, materials and legal forms;

Confidence in the legislation through minor amendments; and

Responsiveness in the communication of a patient’s plan—when, where, and to whom it is needed—using the online Personal Planning Registry.

BEST PRACTICES TO IMPROVE END-OF-LIFE CARE Presentation to Select Standing Committee on Health, Legislative Assembly of BC

By Nidus Personal Planning Resource Centre Association

Planning is a way to prepare ourselves and others for end-of-life. It also ensures you are prepared for other situations that may arise before that inevitability. It gives peace of mind.

Planning must be economical, ethical and effective. Representation Agreements embody these principles and makes patient/person-centred care a reality.

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Clarity in EducationBritish Columbia has excellent legislation to enable end-of-life care planning, however, the education and practice is dismal—making it difficult for people to make legally effective documents . The majority of British Columbians receive no information, misinformation, or incomplete information . This also holds true for many professionals .

This is due in part to complexities of the legislative framework when professional interests overtook the public interest during implementation . At the same time, the complexity calls for extra effort—on the part of government, legal professionals and community groups—to ensure education and practice are coordinated and of the highest quality .

Clarity refers to consistency, accuracy and completeness of messaging and education across all sectors and disciplines . Without this, end-of-life care planning is not accessible to those who want to do it, those who need to use their legal authority and those who have to respond to it .

ACCESSIBLE INFORMATION AND FORMSAccessibility is crucial for effective and reliable end-of-life care planning . A properly drafted and understandable Representation Agreement is key to following through on an adult’s wishes . It requires a good understanding of the legislation as well as the practical context .

Unfortunately, much of the education and accompanying legal forms being promoted are not accessible .

This includes the Representation Agreement forms published by the Ministry of Attorney General in 2011, which lack flexibility; the My Voice: Guide to Advance Care Planning produced by the Ministry of Health in 2012, which the public and professionals find confusing; and Representation Agreement precedents provided by Continuing Legal Education in its course materials for lawyers, which are pages long and suggest trigger clauses that are redundant and can delay treatment and may prevent the adult’s wishes from being honoured .

Many community organizations, such as those who provide legal services for low-income seniors, perpetuate the problem by promoting and using the same or similar materials .

COLLABORATION ON EDUCATION AND TRAININGNidus has always been willing to collaborate and over the years we have approached government ministries with the offer to work together on materials, forms and education programs for the public and professionals .

We have been very pleased to establish a relationship with the BC Association of Social Workers . The BCASW is helping to educate its members by promoting Nidus’ free webinars on its website . This allows social workers to learn about and access Nidus’ education materials and Representation Agreement forms for their clients and patients . Social workers also consult Nidus about specific situations to gain further education .

Nidus and current project partners (Courthouse Libraries BC and People’s Law School) are exploring sources of funding to make education on planning more accessible throughout the province and particularly for seniors who want to plan for end-of-life . We are also looking at training for professionals . Health and personal care planning is new to the legal profession . Legal planning documents are new to the health sector .

Recommendation Nidus recommends that the Ministry of Health work with Nidus to ensure clarity in the delivery of education to the public and health professionals on planning for end-of-life care .

MAY 2015

Representation Agreement forms and the accompanying information need to be simple, clear and straightforward so that adults can understand their own documents, those appointed know how to use them and health care providers are able to respond to them quickly and appropriately, even in urgent situations.

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Confidence in the LegislationAmendments to personal planning legislation, passed unanimously in the BC legislature in 2007, finally came into effect on September 1, 2011 with much celebration in the community . The amendments included changes to streamline the making of Representation Agreements under Section 9, as proposed by Nidus and supported by other community groups . These changes were made to enable and encourage more accessible end-of-life planning for British Columbians .

However, the recent court case of Bentley v. Maplewood Seniors Care Society may be eroding the confidence of British Columbians to plan for end-of-life .

This is despite the strong and effective personal planning legislation available in BC—the Representation Agreement Act—which has been supported by all parties in the legislature, on more than one occasion .

Although the BC Supreme Court (2014) and the BC Court of Appeal (2015) only ruled on the issue of whether Mrs . Bentley was consenting to being spoon fed, The Honourable Mr . Justice Greyell of the BC Supreme Court made additional comments, incidental to the ruling, that have created uncertainty .

In particular, the judge suggested that spoon feeding in Mrs . Bentley’s circumstance would not fall under health care consent but rather might be considered personal care . If this were true, the current legislative protections for an adult’s end-of-life care wishes may not be sufficient unless personal care is specified . The judge’s comments cannot be appealed or rebutted and so they remain as unanswered questions .

The intent of the community-government law reform in creating the Representation Agreement Section 9 was that it should be the most secure and reliable legal tool for end-of-life planning . The BC legislature has reinforced this each time this legslation has been presented with community support . Justice Greyell’s comments create uncertainty about the strength of this tool .

Uncertainty and fear may lead people to take their own lives prematurely or to give up on planning; then, in the event of incapacity, they will be subject to substitute decision makers selected by the health care provider, who may not be able or willing to carry out their wishes . Clearly this is an unintended consequence of the Bentley case and only compounds the concerns people have about this case and Mrs . Bentley’s situation .

The judge also suggested that the wording of Mrs . Bentley’s wishes were unclear . Many people thought otherwise . This should be of concern to Health Authorities (and groups mentioned in the previous section) as many of them have emphasized documenting wishes over making a Representation Agreement to authorize a trusted decision maker . It is, of course, important to discuss wishes and values on an ongoing basis with your known and chosen representative(s)/alternate(s) . You need to be careful what you put in writing and who may interpret it .

Nidus’ legal practice group, made up of community and legal experts, has studied the Bentley case . Our analysis is based on 20+ years of experience in the development and practice of the legislation governing Representation Agreements, health care consent and adult guardianship . We believe the uncertainty must be remedied as soon as possible .

Any improvements to end-of-life care practices rely on British Columbians having confidence in the utility and power of the Representation Agreement Section 9—their representative’s ability to carry out their wishes related to health care and personal care .

MAY 2015

Another court case may clarify some of the uncertainty created by the judge’s comments in the Bentley case. But requiring families to pursue such actions and tie up the courts seems a drastic step, if minor amendments to the legislation can clarify the intent and reassure the public.

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Recommendation

Nidus recommends that the government make the following minor amendments at the earliest opportunity .

Adult Guardianship Act Application of this Part

45 (1) This Part applies whether an adult is abused or neglected in a public place, in the adult’s home, a relative’s home, a care facility or any other place except a correctional centre .

(2) This Part does not

(a) override the rights in section 4 of the Health Care (Consent) and Care Facility (Admission) Act, or(b) prevent an adult’s representative or guardian from giving or refusing health or personal care for the adult in accordance with wishes the adult expressed while capable, even if the giving or refusing consent will result in the adult’s death .

Representation Agreement Act

Non-standard representation agreements

9 (1) In a representation agreement made under this section, an adult may, subject to subsections

(2) and

(3), authorize his or her representative to(a) do anything that the representative considers necessary in relation to the personal care or health care of the adult,…

(3) In a representation agreement made under this section, if a representative is provided the power to give or refuse consent to health or personal care for the adult, the representative may give or refuse consent to health or personal care even if the giving or refusing consent will result in the adult’s death .

Responsiveness using the Personal Planning RegistryCommunication is central to providing patient-centred end-of-life care . The Personal Planning Registry is designed to ‘connect important information to the right people at the right time .’

HOW DOES THE REGISTRY WORK?The Personal Planning Registry is an online system for the public to store important information and documents and make them available when needed . It provides:

• Secure storage with 24/7 access .

• Single location to keep track of various kinds of information .

• Ability to grant access to authorized third parties (health care, financial and government institutions); and specific access to individuals such as a representative, family physician, financial advisor .

• Affordable fees at $25 to set up a Registry account and first registration; additional registrations are $10 each . These are one-time fees; no annual fee .

• Easy editing functions to keep contact information up-to-date . You can also select to receive an annual reminder to review plans . There are no fees for these features .

WHAT CAN BE REGISTERED?There are three types of registrations to help consolidate information on the diverse aspects of one’s life .

• Personal planning documents: Representation Agreement, Advance Directive, Power of Attorney, list of wishes, Revocation Notice and more .

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• A Personal Information Record: Inventory of health, financial, and community contacts; emergency to-do-list; contact list of family/friends .

• Other documents: Copy of a Will, memorial arrangements, list of medications and more .

HOW DOES THE REGISTRY IMPROVE END-OF-LIFE CARE?There is no single or central place that people ‘go to die .’ Death can be sudden or long anticipated . It may take place in a variety of settings . This means information about a patient’s plans and wishes needs to be:

• Available to a wide variety of health care professionals, some of whom may not focus on end-of-life care in their role .

• Simple and quick to access when needed .

• Current and comprehensive .

WHAT ARE THE BENEFITS TO THE HEALTH SYSTEM?The Personal Planning Registry offers many benefits to a health system that wants to be responsive to patients’ wishes in an effective and efficient way that is also sustainable .

• Streamlines procedures and saves time and money; adds efficiencies to the system .

• Avoids confusion and controversy when a patient/client’s decision making ability is in question .

• Facilitates compliance with BC’s health care consent legislation .

• Removes the burden that comes from guessing—and possibly giving unwanted treatment or otherwise doing harm against a patient’s wishes .

• Privacy and security are addressed through consent to register, authorization of specific staff who are allowed to search, and use of audit trails/reports . David Flaherty, BC’s first Information and Privacy Commissioner, supports the Registry and volunteered to be our privacy consultant .

• No fees to search; receipts are provided so that authorized staff (Access Users) can verify the date and time of a search .

• Adds value to education activities that engage the public in end-of-life care planning . Can track usage rates by date, geography and other non-individualized data .

• Complements other sources of information such as the patient health record and financial plans—to allow for arranging appropriate and affordable supports at home or in care .

Health care providers, in their regular practice, must make a reasonable effort to find a patient’s planning information and documents . The government can implement policies to include a search of the Registry as part of this regular practice . This can be done immediately, easily and at no cost .

By working together, use of the Personal Planning Registry will become commonplace and will address the interests of the public and the need for efficiency and sustainability in the health care system .

The government can explore ways that the Registry may work with electronic records and possibly link to the BC Services Card .

Recommendation

The Ministry of Health implement policies to use the Nidus Personal Planning Registry when searching for a patient/client’s planning information and documents .

The Registry is growing and has the support of the public, seniors and disability organizations, Ministry of Justice (link on website), the Public Guardian and Trustee, legal professionals, front-line health workers and others.

MAY 2015

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Information on Representation Agreements and Personal PlanningPlanning for end-of-life, for incapacity, and for your future

MAY 2015

FREE PRESENTATIONS Sign up and learn about Representation Agreements and other legal planning documents you can make and how to register them . Go to www .nidus .ca > click on Self-Help > Presentations

FACT SHEETSNidus has fact sheets on a variety of topics, including:

• Enduring Power of Attorney: Planning for Financial and Legal Affairs

• Power of Attorney or Enduring Power of Attorney? Which one do I make?

• Refusing Health Care: What are my Rights?

To view these and more, go to www .nidus .ca > click on Information > select the topic > click on Fact Sheet or Resources

PERSONAL HELPBook an in-person or phone appointment with experienced Nidus staff .

Appointments are for individuals, families and friends to discuss making planning documents and how to use them effectively .

Go to www .nidus .ca > click on BOOK NOW in the right sidebar .

INFORMATION AND LINKS TO REPRESENTATION AGREEMENT FORMSFor adults who are capable and want to plan ahead.Go to www .nidus .ca > click on Planning for the Future

For adults whose mental capability is now in question due to a condition that affects their understanding, such as advanced dementia, serious stroke, or other illness or injury . Go to www .nidus .ca > click on Caring for an Older Adult

For adults with a developmental disability, FASD or brain injury.Go to www .nidus .ca > click on Helping a Relative with a Disability

What if I need help accessing Nidus online services?Nidus recommends you seek help from a friend or relative who has expertise with online services . You can also ask your public library or MLA office . Planning needs to be community-based and some community groups are working with Nidus so they can help their members and clientele with these important issues .

Society is in a technological revolution that is affecting all of us in many ways . Asking for help is not a sign of weakness; people like to help but may not know how . Helping one another prevents social isolation .

Nidus has been ahead of its time in promoting the legislation and developing best practices in education . We have done this through small project grants, donations, and modest Registry fees . Limited funding affects our personnel resources; you can help by raising awareness within your networks!

http://www.nidus.ca/?page_id=220




http://www.nidus.ca/PDFs/Nidus_FactSheet_EPA.pdf

http://www.nidus.ca/PDFs/Nidus_Info_POA-EPA_Differences.pdf

http://www.nidus.ca/PDFs/Nidus_Info_RefusingHealthCare.pdf


http://www.nidus.ca/

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1. Search for an existing account Is there an account? If not, proceed to step 2 . If yes, go to step 3.

2. Create an Account No existing account? Create one and make a registration.

Fees are $25.00 to create your account and the first registration; additional registrations are $10.00 each. These are one-time fees; there are no annual fees.

3. Sign In Once you have created your account, use your Nidus ID and Password to sign in and access current registrations or add new ones.

The Personal Planning Registry is a secure online service.

Go to www.nidus.ca/registry and click ‘Online Registry’ from the right sidebar.

EASY & ECONOMICAL TO REGISTER

My Personal Planning Documents

My Personal Information Record

My Current Registrations

My Other Documents

Power of Attorney

Document #m / d / y m / d / y

Date Signed

Last Reviewed

Representation Agreement

Memorial Wishes

Current Will

2942048-3 02/10/14 05/06/15

View My Record

m / d / y

Last Reviewed

09/23/14

2942048-1 05/30/14 05/06/15

Revocation Power of Attorney 2942048-2 02/10/14 11/18/14

PLANS ARE STORED IN A SINGLE LOCATION & ACCESSIBLE 24/7

The Personal Planning Registry offers flexibility in the variety of information and documents you can register. Details on bottom of page 5.

Personal Planning Documents Register your completed document(s). You can type in details such as when the document was signed and where the original is stored.

You have the option to store a copy of your completed document by scanning it in PDF format and uploading in the Registry.

You can grant permission for others to have read-only access. See an example on page 9.

You can also keep contact information up-to-date.

Choose Registration Options

PERSONAL PLANNING REGISTRY

www.nidus.ca/registry

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See when the document was last updated or reviewed.

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Third parties—Access Users—can look up information and documents stored in the Registry.

Access Users are pre-authorized by the PersonalPlanning Registry. These can include staff of hospitals, financial institutions, and government agencies.

Access Users have a unique log-in to search.

Go to www.nidus.ca/registry and click ‘Online Registry’ from the right sidebar.

ACCESS USERS LOG-IN TO LOCATE PATIENTS’ PLANS

READ-ONLY ACCESS FOR AUTHORIZED THIRD PARTIES

In this example, health and personal care type access users can see information about the Representation Agreement and the names of the representative and alternate so they know who to contact when a patient/client needs help.

Click to view a copy of the legal document and save or print for patient/client records.

www.nidus.ca