June 6, 2016 – What is the status of physician assisted dying legislation?

 

A personal note from Joanne: “I am compelled to say — having been involved for over 25 years, along with many members of our Board of Directors and other non-profit organizations, citizens and professionals — I can only wish (beg?) that BC’s existing legislation on health care consent and planning tools, particularly Representation Agreements, will receive the same kind of attention from the media, regulatory bodies and government as the MAiD issue is getting. Why? — because these affect a lot more people!

Respecting choice and informed consent can’t just be talk, they have to be the walk— and that is what the community-initiated, consensus-based law reform of adult guardianship in BC was all about! Every day, Nidus hears from the public that the laws in place in BC since February 2000 are not known or honoured by the professionals and institutions who are legally bound to do so. Our webinars include MAiD and much more. They are free..and we are more than willing to collaborate.*“

 

Medical Assistance in Dying is now law in Canada – as of June 17, 2016. Read the latest news at the Ask Joanne post. (Good information below on this page too.)

 

Physician Assisted Death (PAD) has been legal in Canada since February 6, 2016. Individuals requesting physician assistance with dying could apply for a court order approving that such assistance is exempt from prohibitions in the Criminal Code of Canada. The BC Supreme Court awarded two exemptions between February 25, 2016 and June 3, 2016 (see details below under Resources).

 

As of June 6, 2016 an exemption by court order is no longer required. The prohibitions in the Criminal Code against physician assistance in dying will no longer be in effect, for specific situations, as ruled by the Supreme Court of Canada in the Carter v. Canada decision released February 6, 2015.

The federal government has been working on legislation for Medical Assistance in Dying (MAiD), intended to come into effect by June 6, 2016.

The proposed legislation, Bill C-14, was passed (third reading) by the House of Commons (Canadian Parliament) on May 31^st but it has not yet been passed by the Senate.

On June 1^st, the Honourable Jody Wilson-Raybould, P.C., M.P., Minister of Justice and Attorney General of Canada and the Honourable Jane Philpott, P.C., M.P., Minister of Health addressed the Senate on Bill C-14 and responded to questions. You can read this exchange.

On Friday, June 3^rd, the Senate approved Bill C-14 in principle and referred it to the Standing Senate Committee on Legal and Constitutional Affairs.

After the Senate Committee discussion, which may include proposing amendments, the Bill comes back to the full Senate for third reading (voting). The Senate vote will take place after June 6, 2016. The Senate must pass the Bill at third reading in order for it to become law. If the Senate makes amendments, the Bill goes back to the House of Commons for debate and voting. Then it goes back to the Senate. A Bill must be passed by both the House of Commons and the Senate before it can become law.

 

As of June 6, 2016, individuals in British Columbia who request medical assistance in dying, will be subject to the standard developed by the BC College of Physicians and Surgeons and the declaration of the Supreme Court of Canada from the Carter ruling. The BC Government has updated the regulations governing the Health Professions Act to support the College’s standard.

If an individual’s request for medical assistance in dying is denied and they believe the denial goes against the Supreme Court of Canada declaration as provided in the Carter v. Canada ruling, they may decide to apply to the BC Supreme Court to enforce their request.

Nidus made up a chart to identify eligibility and other requirements for medical assistance in dying as described in the Carter decision and in the new legislation as proposed by Bill C-14 and with guidelines/standard in place. The chart is provided for information; it is not legal advice.

Chart to Compare Carter ruling and Bill C-14 unproclaimed as of June 6, 2016

We will revise the chart based on developments and feedback and will provide current information in other Ask Joanne posts. We will also produce education materials when we know the outcome of Bill C-14.

Thank you to Geoffrey White, a lawyer in Kelowna with Geoffrey W. White Law Corporation, and a member of the Nidus Practice Advisory Group for his assistance in reviewing this issue with me. Any errors cannot be attributed to Mr. White.

 

“* In reference to my introductory comments, I want to acknowledge the support we receive from lawyers in private practice including their participation in webinars offered by Nidus through Courthouse Libraries BC. I also want to recognize the efforts of the BC Association of Social Workers and the BC College of Social Workers who encourage their members to become educated about the law and resources available for their patients and clients.“

 

RESOURCES

Presentation to learn more

Free webinar on Wed. June 8 at 11:30 am, click to sign-up Planning for Health and Personal Care

Nidus offers free webinars each month – View list and links to sign up and notice of special presentations

 

Registering your plans and wishes

The Personal Planning Registry provides secure storage and 24/7 access for your important information and documents and lets you make these available to others who need to know.

Coming soon – you will be able to upload audio and video files! This feature will appeal to those who want to express their intent and wishes verbally – a personal message for family/friends and/or third parties.

 

Requesting MAiD in BC

The BC Government’s press release issued June 6, 2016 states that each health authority has been directed to appoint a co-ordinator for medical assistance in dying.

The Hemlock Aid Society in Vancouver has provided medical assistance in dying since February 6, 2016 and continues to do so. You can contact them at www.hemlockaid.ca to find out more.

Also see BC College of Physician and Surgeons FAQs on MAiD

 

Information

FEDERAL GOVERNMENT WEBSITE INFORMATION ON MAID

http://www.justice.gc.ca/eng/cj-jp/ad-am/index.html

 

EXEMPTIONS THAT WERE GRANTED BY THE BC SUPREME COURT – FEB. 25, 2016 TO JUNE 6, 2016

On February, 25, 2016 Chief Justice Hinkson of the BC Supreme Court issued a Notice Regarding Applications for Exemption from the Criminal Code Prohibition Against Physician Assisted Death

The Notice provided guidance for applications requesting physician assisted death and an exemption to the prohibitions in the Criminal Code. One aspect that Nidus took note of was the direction for the person making the request (the petitioner) to provide any materials related to their application to any attorney named in a power of attorney in effect at the time (this would include an enduring power of attorney and also refers to an institution or corporation who is named as attorney as well as an individual). However, the Notice did not mention a Representation Agreement Section 7 that includes authority for legal affairs.

Two exemptions were given:

April 1, 2016 — Re: A.A.

May 28, 2016 — Re: H.H.

 

INFORMATION ON HOW FEDERAL BILLS ARE PASSED

http://www.lop.parl.gc.ca/About/Parliament/GuideToHoC/making-e.htm

http://www.lop.parl.gc.ca/About/Parliament/Education/ourcountryourparliament/html_booklet/process-passing-bill-e.html

 

Background and Other Information

LOBBY GROUPS AND POSITIONS

Dying with Dignity and BC Civil Liberties Association

Vulnerable Persons Standard

 

REPORT BY SPECIAL JOINT COMMITTEE ON PHYSICIAN-ASSISTED DYING

On February 25, 2016, the federal Special Joint Committee on Physician-Assisted Dying submitted their report and recommendations to the Canadian Parliament. The term ‘Medical Assistance in Dying’  instead of ‘Physician Assisted Death/Dying’ was one of the suggestions, to reflect the reality that other health care providers, such as pharmacists and nurses, will be involved in the process – not only physicians.

How do we best care for each other?

 

“Everyone who acts as a representative under a Representation Agreement, an attorney under an Enduring Power of Attorney or a committee under court-ordered Committeeship (adult guardianship) is a caregiver. Since 1995, Nidus has communicated with lots of caregivers!“

 

 REFLECTIONS on Bring Your Boomers event:
Who Cares? Re-Imagine a Culture of Care for an Aging Society

 

I attended the public Bring Your Boomers event produced by Gen Why Media in Vancouver on Tuesday,    May 10/16. Presenters told stories through narrative, comedy and short film.

The facilitator from Centre for Hip Health and Mobility at UBC posed some questions to audience members. I found myself reflecting on them and some of the answers on my walk home.

 

What is unique about caregiving for those 40 years old and younger?

For the first time in history, there are more adults in Canada over the age of 65 than under the age of 15! (Statistics Canada, 2015)

• Younger adults will potentially be caregivers across more generations than ever before, given the aging of the population and the increase in incidence of chronic diseases such as dementia.

Caregiving has always been inter-generational but today’s younger adults can find themselves in a caregiver role for minor children and/or an adult child with a disability, as well as a parent(s) and grandparent(s) and perhaps even a great-grandparent. (Not to mention other extended family who do not have children or grandchildren or they are not able.)

 

• Society is in the midst of a major transition and transformation – largely due to advancing technology. I, for one, am counting on the young adults of today to play a key role in this transition as they have experience of growing up with various technologies and social media in a way that older generations did not.

Some commented on how new technologies offer the opportunity to bring people closer together (for example, by facilitating communication over long distances) or to prevent meaningful interactions (for example, due to taking up a lot of attention/time). I am impressed to hear how my friends who are new grandparents and live in a city 8 hours from the new grandson are creating a bond because stay-at-home dad arranges ‘face time’ on the phone. Baby (not even a year old) has discovered how to push the buttons!

Nidus established the Personal Planning Registry as a way to use the best of technology to facilitate communication rather than hindering it. The Registry supports self-determination by allowing people to grant viewing access to those who care and need to know about important information and documents during a health crisis (or even a disaster like the fire at Fort McMurray — people can retrieve key documents they need to help re-build their lives).

 

“The aging of the population also means that we have more elderly spouses as caregivers. It is not uncommon for an 86 year old to be a full-time caregiver for an 85 year old spouse.“

 

What support do caregivers need?

There is no doubt that a caregiver needs lots of support – from their spouse, other family members, friends and the community.

• As one woman at the event said, sometimes caregivers need permission not to be perfect or ‘to do it all.’ We put these expectations on ourselves and we need support from siblings and others that we are only human and we will – on occasion – make mistakes, be too tired or express impatience. I know I sure needed this!

We might also need others to take some ‘heat’ for us when the person we are supporting or outsiders do not understand our need for a break.

 

• Another person mentioned that getting your legal documents in place is a big support to caregivers. Of course Nidus could not agree more!

The key legal document that a caregiver will need if they have to carry out your wishes for health and personal care is a Representation Agreement. Some people will also make an Enduring Power of Attorney. To make arrangements for after death, you need to make a Will.

Legal documents help when navigating bureaucratic institutions and complex systems – particularly if there is a lack of communication and coordination among departments or personnel as seems to be a more common experience.

 

How do we create caring communities?

The bottom line is: If we want to live in a caring community, then we have to do our part to make it happen.

• Ask for help & offer help.
• Don’t hide – SAY HI to your neighbours, at the coffee shop, at the grocery store…
• Intentionally create support networks – great examples shared by two participants who spoke from experiences in the queer / gay community explaining that individuals are often separated from their biological families but realized that you can deliberately create support/family with people of your choosing.

Representation Agreements are a great tool for creating personal support networks as well as for strengthening existing networks. We also like to stress the ‘team’ aspect – the representative, alternate and monitor are all part of the team, with the adult in the centre (or in the’ driver’s seat’ as one daughter said of her mother)!

Although housing and living arrangements were not discussed as a separate issue, the stories described various situations from living with extended family, to living alone with the help of community support, to facility care. I hear a lot of single women who are 50 to 70 talking about the idea of living together and taking care of one another. Whether this will happen in large numbers – who knows. But there is resistance to the idea of institutional living particularly because it is not connected to the larger (or real) community and therefore gives a sense of ‘warehousing.’

A key problem is the medical model being applied to residential care and end-of-life care. For many chronic conditions – including dementia -the dominant need is for social support (and other personal care matters), not health care where the medical approach dictates one’s routine and interactions. We heard about a great local program called Paul’s Club.

“Among the things that makes caregiving difficult is having to deal with the barriers and complicated procedures imposed by systems and bureaucracies in our effort to represent and carry out the wishes and needs of the person we support. Caregivers report being treated with suspicion and distrust and their knowledge and experience devalued. How do we reconcile this with the evidence that caregivers are indispensable and evermore necessary?

At the same time that we talk about building caring communities – we need to look at ways to make financial institutions and the health and social service systems more accessible and responsive to supporters.“

 

Want to learn more about Representation Agreements?
Free Presentations

Getting Started

Who can witness a living will?

Q – Can anyone witness a Living Will or should it be a notary?

 

Since a living will is not a legal document in BC, there are no legal requirements to follow.

You do not need anyone to witness a living will, although many people ask a friend or neighbour to witness their signature and the date signed.

A living will does not have more effect if witnessed by a notary or a lawyer – their signature does not make it legal.

A living will is an expression of your wishes and preferences, but it does not give anyone authority to make decisions for you or to carry out your wishes.

A Representation Agreement is a legal document under BC legislation. It is the way to give someone – your representative – the authority to assist you with decisions and to carry out your verbal or written wishes.

If you already have a living will, give a copy to your representative and alternate so they can refer to it if they need to make a decision on your behalf.

To make a Representation Agreement you first need to determine what planning path applies to you and where to find the legal form for that path – go to Making Documents.

If you are looking for ideas about topics to discuss with your representative, use the Values and Beliefs Discussion Guide. This excellent resource was developed by a national seniors group through workshops held in local communities across Canada.

Note: Living wills are also not a legal document in other provinces.

 

How to restrict an EPA for dealing with real estate?

Q – I went to one of your information sessions. My friend has asked me to be his attorney for his Enduring POA. He (we) do not want to be included in Real Estate transactions.

How may I exclude myself from this on the form? He will be having it signed by a lawyer. He does, however, want me to be able to sell his personal vehicle and rent his property. Can I add an addendum to the Enduring POA?

 

Your friend needs to tell the lawyer that the people he is appointing (called his attorneys) in the Enduring Power of Attorney (EPA) do not want to deal with real estate matters.

The lawyer can prepare the EPA document with that restriction. It would be important for your friend to do this at the time when he is capable of making an EPA. The EPA belongs to him – you cannot add an addendum to it later.

Let’s say the EPA was drafted without any restrictions. If a real estate matter came up, you could likely resign as an attorney. However, it would be best to have it spelled out ahead of time so it is clear that you do not have a duty for dealing with real estate or land title issues.

If the EPA includes the restriction for real estate matters, you can deal with other financial and legal affairs. If a real estate matter needed to be dealt with, then someone would have to apply to the court for Committeeship (guardianship) or the Public Guardian and Trustee (PGT) would likely take over as the property guardian. In either case, someone appointed as committee of estate or the PGT would not only take over the real estate matters but all of your friend’s financial and legal affairs. Your authority under the EPA would be ended.

 

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Nidus recommends contacting a legal professional for making an Enduring Power of Attorney. Read our EPA Guide to prepare for meeting with a legal professional.

 

TO FIND A LEGAL PROFESSIONAL:

Society of Notaries Public of BC

Phone 604.681.4516 or 1.800.663.0343
Search Find a Notary at www.notaries.bc.ca

Review Discipline Hearing Reports 

 

Lawyer Referral Service

Phone 604.687.3221 or 1.800.663.1919

Read about the service at www.cbabc.org/For-the-Public/Lawyer-Referral-Service

Review current practicing status at Lawyer Lookup 

Check discipline history

Check current citations and hearings 

List of unauthorized practitioners 

Update on the Margot Bentley case

Thank you to the Law Foundation of BC for the small project grant to provide information on consent rights and planning tools for health and personal care.

 

Nidus has prepared a detailed version of this update, including references to the Reasons for Judgement by Judge Greyell of the BC Supreme Court. Click to read the detailed version. Click to read the snapshot version.

Many people, particularly in British Columbia, have heard about and followed the story of Margot Bentley. Margot Bentley has advanced dementia and her family says she is being spoon fed without her consent, according to wishes she expressed when capable in a 1991 “Statement of Wishes.”

A recent documentary by Karin Wells which aired on CBC radio Sunday Edition on June 14, 2015, brought the story to national attention—‘In the presence of a spoon.’

Margot Bentley’s family asked the staff at the facility where she resides to honour Mrs. Bentley’s wishes and to stop giving her food and liquids. The facility refused. The family (petitioners) challenged the facility, Maplewood Seniors Care Society, as well as Fraser Health Authority (respondents) in BC Supreme Court.

Nidus followed the case and you can read about the process, the parties involved and the materials presented by each side at Margot Bentley Case #1, #2 and #3.

 

Things to note

• This case was about Margot Bentley’s capability to consent to being spoon fed and honouring her “Statement of Wishes” if she is found incapable of consent.
• The case was not a test of the current legislation for personal planning such as Representation Agreements, although comments were made about the current laws and their relationship to Mrs. Bentley’s “statement.”
• The Representation Agreement Act was initiated and is promoted by citizens and community groups to provide a way for BC adults to authorize someone—a representative—to make health and personal care decisions during incapacity and at end-of-life.
• Nidus (a non-profit, charitable organization) was set up by seniors and disability groups to be a resource on Representation Agreements. Our legal practice group has studied the Bentley case and is concerned about the uncertainty that may have been created by the judge’s comments in this case. See our recommendations below.

Court finds Margot Bentley is consenting to be spoon fed

On December 17, 2013, the hearing of Bentley v. Maplewood Seniors Care Society began in the Supreme Court of BC with the Honourable Mr. Justice Greyell presiding.

Judge Greyell found that Margot Bentley is capable of giving consent to spoon feeding and he orders that the staff at Maplewood, where Mrs. Bentley resides, must continue to provide assistance with eating and drinking. See 2014 BCSC 165—Reasons for Judgement.

The family appealed this ruling to the BC Court of Appeal. The appeal was dismissed. See 2015 BCCA 91 at paragraphs 14 and 17.

Judge Greyell’s order that assistance with feeding must continue is binding on the parties.

 

Non-binding comments by the judge

Judge Greyell made some other comments, which are not binding or precedent, rather they are his opinions.

The judge stated that even if he had found Mrs. Bentley not capable of consenting, the outcome—continuation of spoon feeding—would have been the same. Why?

 

SPOON FEEDING AS HEALTH CARE

The judge considered that if spoon feeding is covered under the definition of health care, then the Health Care Consent and Care Facility Admission Act would determine what authority can consent on Mrs. Bentley’s behalf. Consent would be obtained as follows from:

1. A committee of person (personal guardian) appointed by court order – No one is appointed committee of person over Mrs. Bentley. (This is someone who makes an application in BC Supreme Court to be appointed by a judge to take over an adult’s health and personal care decisions. It is rare due to cost and time.)
2. A representative authorized in a Representation Agreement – the judge says that Mrs. Bentley’s “statement of wishes” does not qualify as a as valid Representation Agreement (under Section 9) which would have given her husband and daughter the legal authority as representatives to refuse health care necessary to preserve her life.
3. An Advance Directive – the judge says that Mrs. Bentley’s “statement of wishes” is not a valid Advance Directive. It does not have an adequate instruction that clearly outlines refusal for spoon feeding in the specific circumstance.
4. A temporary substitute decision maker (TSDM) selected by a health care provider – although Mrs. Bentley’s spouse and adult children would be selected as her TSDM if none of the above authorities exists, a TSDM can only refuse health care necessary to preserve life if a majority of the medical team agrees.

In this case, as there was an absence of other, higher authorities, Mrs. Bentley’s situation would rely on the TSDM scheme. Under this default scheme, the medical team’s majority opinion would override or veto the family’s decision to refuse spoon feeding.

 

SPOON FEEDING AS PERSONAL CARE

The judge considered that if spoon feeding is considered personal care, what authority decides?

1. A committee of person, appointed by the Court can give or refuse consent for personal care as well as health care.
2. A representative, authorized in a Representation Agreement made by an adult, can give or refuse consent for personal care as well as health care.
3. An Advance Directive can only give instructions about health care, not personal care.
4. A temporary substitute decision maker (TSDM) can only make decisions about health care, not personal care.

Although a committee of person appointed by court-order or a representative authorized in a Representation Agreement can refuse personal care, the judge notes that the Adult Guardianship Act, which deals with abuse and neglect, may not allow this if it means the adult might die. Section 45 of the Adult Guardianship Act includes a specific statement allowing refusal of health care, according to the adult’s wishes, even if the adult might die. It does not include a similar statement for personal care.

Without a similar statement or exemption in the legislation for personal care, refusing spoon feeding could be seen as neglect and therefore measures can be taken by a Health Authority (referred to in the legislation as a designated agency to respond to abuse, neglect and self-neglect) to protect the adult. (In Mrs. Bentley’s case, Fraser Health’s Clinical Specialist in Adult Abuse and Neglect, Leanne Lange, issued a ‘Notice of Emergency Intervention’ to Maplewood Care Facility, which said the Abbotsford Police are to be called if Margot Bentley’s spouse or daughter attempt to remove her from the facility until a support and assistance plan is in place. See 2014 BCSC 1321)

Why would the judge classify spoon feeding as personal care? The judge could not find specific reference to eating or drinking in the definition of health care in the Health Care Consent and Care Facility Admission Act. He did find the term diet in the definition of personal care in the Representation Agreement Act and noted that nutrition, assistance with eating and meal planning is addressed in the legislation governing community care, assisted living and residential care as part of daily living. Together, these observations led him to conclude spoon feeding falls under personal care.

If spoon feeding, in a circumstance like Mrs. Bentley’s, is considered personal care, not health care, and there is no exemption in the Adult Guardianship Act Section 45 about refusing personal care even if an adult might die, it is possible that we have an unintended gap in the law. It could be that even if Mrs. Bentley had a committee of person or a representative authorized in a Representation Agreement Section 9, these authorities could not refuse spoon feeding on her behalf.

 

What does this mean?

The additional comments by Judge Greyell are NOT a ruling or binding decision from the Court. However, these remain ‘on the record.’ The comments cannot be appealed by the parties in this case. These could be debated in future cases but it would depend on the facts of those cases and the knowledge and experience of the lawyers involved.

Analysis by Nidus’ legal practice group

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 are surprised that this situation ended up in court action.
• We believe the judge did not have the full arguments in front of him when commenting on issues related to BC’s current legislation. This is an emerging area of law and BC’s legislation has undergone a lengthy and convoluted implementation. The legal experts in this field and those involved in the development and implementation of the current legislation were not party to this court case or involved as a resource.
• We believe that this case has caused some concern and uncertainty for British Columbians who want to plan for the future. Particularly worrisome are the comments that eating and drinking may be considered personal care, not health care as the law may not specifically allow decisions on the adult’s behalf regarding personal care if it means the adult might die.
• A representative authorized in an RA9 is able to refuse health care necessary to preserve life according to the adult’s wishes even if it means the adult’s death. According to this judge’s opinion, spoon feeding is not health care but personal care and refusing personal care necessary to preserve life could be considered neglect and subject to actions under the Adult Guardianship Act. Although just an opinion, it raises questions and concerns.

Recommendations

We believe any uncertainty must be remedied as soon as possible and we have put forward recommendations for minor amendments to reflect the intent of the Representation Agreement Section 9. Here is a brief summary.

Nidus recommends that the government make minor amendments at the earliest opportunity to include reference to ‘personal care’ in Section 45 (2)(b) of the Adult Guardianship Act and Section 9 (3) of the Representation Agreement Act.

You can read more details and see the legislative references in our presentation to the Standing Committee on Health, BC Legislative Assembly—Nidus Recommendations to Improve Best Practices in End-of-Life Care.

 

Lessons and steps for personal action

The Bentley case brings home some important lessons for those who are mentally capable now and want to plan for the future.

1. Wishes alone are not enough.

• If you only have written wishes then the health care provider must select someone to be your Temporary Substitute Decision Maker (TSDM).
• Under the TSDM scheme, the medical team has a veto over decisions involving the refusal of health care necessary to preserve your life.

2. Make a Representation Agreement Section 9 (RA9) for health care and personal care—give your representative as much authority as possible under the law.

• As the judge noted in his reasons, the Representation Agreement is the primary planning document in BC and covers health care and personal care matters. As he also pointed out, an Advance Directive has limitations that make it difficult to give clear instructions about the future and it does not cover personal care.
• Your spouse and other family members have more legal authority as a representative than under the TSDM scheme. And you can choose anyone as your representative. It does not have to be family.
• Don’t wait for a crisis to make an RA9 as it may be too late. You can make a new one if something changes. If capable, you can always revoke (cancel) your document and make a new one.
• Register your completed document with the Personal Planning Registry so it is available when needed.

3. Talk with your representative about your wishes, values and beliefs.

• If you want to write your wishes down, do it on a separate piece of paper and give to your representative (and alternate) to use when they believe it is appropriate for the circumstance.
• As the judge noted, there are different ways of interpreting wishes and instructions. The representative is someone who knows you and you have chosen. They will be the continuity and certainty in your life and over time.

4. Subscribe to the Nidus newsletter to keep informed and up-to-date about the law, educational resources and the Registry.

• Sign up for our newsletter

 

This post was informed by Hugh McLellan’s webinar presented with Nidus to lawyers in private practice through Courthouse Libraries BC on May 12, 2015. Mr. McLellan is a partner in the law firm McLellan Herbert and recognized as an expert in the areas of personal planning, adult guardianship, and wills and estate litigation. He has been involved in the reform of adult guardianship legislation since the late 1980’s.

Thank you also to Audrey Jun for consultation and review of this post.

Avoid abuse with safeguards for personal planning

June 15 is elder abuse awareness day. It seems like a good time to consider safeguards for personal planning.

We are all going to die and many of us will need some assistance with our affairs prior to death—due to illness, injury, aging or disability.

 

How can we protect ourselves, when arranging for others to help us?

1. Learn about the legal documents available for personal planning and which one fits your situation.
2. Appoint more than one person and talk with them about working together as a team. Go over their roles—see below for links. Discuss your wishes and values with them—use the Values & Discussion Guide developed through a national senior’s project.
3. Identify others who could be a support and guide to those you appointed. Introduce them to those you appointed, provide contact lists for each.
4. Know how to revoke (cancel) your document if you need to. Nidus has revocation forms you can use. See below for links.
5. Keep in contact with those you appointed about your health and life events so they will be informed if they have to act. You can ask them to accompany you to meetings with your financial advisor, bank manager, doctor and others or call them with an update after your meeting. Maintaining contact is a way to develop your relationship—it can also expose misunderstandings that you can address while capable.

 

What can third parties do to encourage and support best practices?

We need to be able to count on financial institutions to do their part. This includes knowing the legislation within the jurisdiction they operate.

“CIBC told me (the representative) that a Representation Agreement Section 7 for financial and legal affairs is not a valid document and they offered to shred it. Is this true? We followed the instructions for making it…” [Email June 11, 2015]

 

This quote is the most recent example and the most common complaint we receive about third parties. Banks and credit unions promote financial planning but they make it difficult. We need them to help promote safe and effective practices.

Caregivers/representatives are already stretched to the limit trying to maintain the quality-of-life for a spouse, family or friend. This means making sure bills are paid, funds are available for health and personal care needs, entitlements are applied for, insurance is paid up and more.

• Why are banks and credit unions refusing to honour Representation Agreements for financial and legal affairs?
• Why do financial institutions continue to encourage single seniors to set up joint accounts with family members even though joint accounts have no safeguards?
• Why do financial institutions continue to insist customers/members use their in-house Power of Attorney forms? These internal documents offer no benefit outside the institution and therefore are of no help to customers/members with planning.

Representation Agreements have many more safeguards than Powers of Attorney. The RA7 is a standardized document unlike the Enduring Power of Attorney, which can be highly variable given the numerous options available since amendments came into effect on September 1, 2011.

 

–> Sign up for our free webinar, Planning for Financial and Legal Matters

–> Read our fact sheet Safeguards for the Representation Agreement Section 7 and become better informed.

 

RESOURCES (Also find under Information tab blue menu bar)

Role of Representative and Role of Monitor in a Representation Agreement

Role of Attorney in an Enduring Power of Attorney

Revoke a Representation Agreement

Revoke an Enduring Power of Attorney

EPA vs RA7 chart

 

RESOURCES FOR PROFESSIONALS & INSTITUTIONS

Definition of Routine Management of Financial Affairs

Detailed Comparison: RA7 or EPA for Financial and Legal Affairs

The Representation Agreement Act and health care consent legislation – 15 years later!

It is over 15 years since the Representation Agreement Act came into effect—its purpose was to reform the adult guardianship system.

This means reforming the health and social service systems from the ‘we know best’ approach to a person/patient-centered approach based on self-determination. It seems that changes in culture and practice are difficult for systems.

 

We are still waiting.

Nidus was invited to make a presentation to the Standing Committee on Health of the BC Legislative Assembly on May 15, 2015. Click to read document. Our recommendations focused on ways to improve best practices in end-of-life care. But the recommendations apply to all life areas: health care, personal care, financial and legal affairs—and all stages of life—from becoming an adult (age 19 in BC and when parental rights end) through to death.

Our focus is on ‘quality-of-life to the end-of-life.’

Nidus recommends:

CLARITY IN EDUCATION

British Columbia has excellent legislation to enable planning, including for end-of-life care, however, the education and practice is dismal—making it difficult for people to make legally effective documents.

Clarity refers to consistency, accuracy and completeness of messaging and education across all sectors and disciplines. Without this, planning is not accessible.

“CIBC told me (the representative) that a Representation Agreement Section 7 for financial and legal affairs is not a valid document and they offered to shred their copy. Is this true? We followed the instructions for making it…” [Email June 11, 2015]

“The doctor insisted my husband fill out the M.O.S.T. form. Does it supersede a Representation Agreement?” [Parkinson Regional Conference June 11, 2015]

 

Caregivers/representatives are already stretched to the limit trying to carry out the wishes of a spouse, family or friend.

Why are banks and credit unions refusing to honour Representation Agreements for financial and legal affairs?

Why are health authorities and the Ministry of Health (Health Link) promoting the Medical Orders for Scope of Treatment (M.O.S.T.) form instead of Representation Agreements?

• The M.O.S.T. form, like the No-CPR form, is not a way to give consent in advance of incapability. A Representation Agreement is a legally enforceable document in BC and can do this.
• It is critical that any discussions of an adult’s wishes include the representative otherwise it risks undermining the process. This can also avoid conflict of interest for health professionals.

Accessibility is crucial for effective and reliable planning. A properly drafted and understandable Representation Agreement is key to following through on an adult’s wishes.

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

• The Representation Agreement forms published by the Ministry of Attorney General in 2011 lack flexibility. The government forms are helpful as an example that the form can be simple, but the wording only allows an alternate to act if a representative is permanently unable to act. It does not allow for a representative to be temporarily unavailable due to sickness, vacation or out-of-cell range. This wording is not required by the law and is not practical for health care and caregiving situations;
• The My Voice: Guide to Advance Care Planning produced by the Ministry of Health in 2012 is confusing to the public and professionals (although an improvement over the previous version produced by Fraser Health end-of-life program and legal inconsistencies); and
• Representation Agreement precedents provided by Continuing Legal Education in its course materials for lawyers are pages too long and include redundant trigger clauses that can delay treatment and may prevent the adult’s wishes from being honoured.

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

 

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.

Nidus has repeatedly offered free education and training to financial institutions in BC. The Representation Agreement Section 7 (RA7) offers many more safeguards than a Power of Attorney and has a standardized format. Nidus recommends that the Canadian Bankers Association and Central One (credit unions) collaborate with Nidus on strategies to promote education and best practices with its member institutions on personal planning in BC.

 

CONFIDENCE IN THE LEGISLATION

Amendments to personal planning legislation, passed unanimously in the BC legislature in 2007, finally came into effect on September 1, 2011.

The amendments included changes to streamline the making of Representation Agreements under Section 9, 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.

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.

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.

British Columbian’s need to have confidence that their legal plans will be honoured and representatives (caregivers) should not live in fear of being charged with abuse or neglect for carrying out the wishes of their spouse, family member or friend.

 

Recommendation

Nidus recommends that the government make minor amendments at the earliest opportunity to include reference to ‘personal care’ in Section 45 (2)(b) of the Adult Guardianship Act and Section 9 (3) of the Representation Agreement Act.

 

RESPONSIVENESS IN COMMUNICATING PEOPLE’S WISHES

Communication is central to providing patient-centred care and safeguarding finances. The Personal Planning Registry is designed to ‘connect important information to the right people at the right time.’

The Personal Planning Registry provides secure storage with 24/7 access. It registers a variety of information and documents that direct and guide others about your wishes and legal plans if you are incapacitated or cannot communicate.

Planning is taking place in a number of settings—at home, in community, financial and retirement planning programs, legal professionals, health care settings, and more. The Registry is a way to coordinate these efforts, while making them available to an equally broad number of different parties.

A Registry for personal planning documents would seem even more relevant than a Wills Registry, which is used for after death.

The online Personal Planning Registry, operated by Nidus, is sustainable. The registration fees are modest, there is no fee to update information or for searches.

From the perspective of the Emergency room physician to the Branch Manager of the local bank— information is key. “The more the better” we hear them say. That is the role and benefit of the Personal Planning Registry. It adds efficiencies to the system by streamlining procedures; it saves time and money.

Nidus first established the Registry in 2002 due to public demand and because the government declined to implement the registry provided in the 1993 version of the Representation Agreement Act. Nidus launched a new online system in June 2014.

In 2012, Nidus met with Dr. Doris Barwich, BC Centre for Palliative Care and speaker at the recent BCHPA Conference and the Executive Director of General Practitioners, Doctors of BC, to demonstrate the Personal Planning Registry and get their input as we finalized the new online system.

“BC Hospice Palliative Care Association will develop resources with its partners for British Columbians to discuss, document, and register their advance care plans.” [from its strategic goals 2015]

• Does BCHPA intend to contact Nidus about working together?
• Does BCHPA intend to create its own registry or lobby government to do this? This would be duplication.
• Do health care providers and the Ministry of Health only trust something they have done themselves? Even if it is duplication or a parallel system? This will create confusion instead of coordination and waste instead of efficiencies. We already have these problems in education.

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

 

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.

Financial institutions add searching the Personal Planning Registry to its review procedures when presented with an Enduring Power of Attorney or Representation Agreement Section 7 with financial authorities by or on behalf of a customer/member.

Government and the private sector explore opportunities for a partnership with Nidus in the Registry service (public, private and non-profit).

What is Parkinson disease?

Personal planning is important for people with Parkinson and Nidus will be presenting at the Parkinson Society of BC regional conferences in Kelowna on May 23, 2015 and in Vancouver on June 11, 2015. For details on these and other Parkinson events click here.

The following information is provided by the Parkinson Society of BC.

What is Parkinson’s?

Parkinson’s disease (PD), a chronic, progressive neurological disorder that affects 1.0% of the population over 65 years of age.

Who gets Parkinson?

The average age of diagnosis is 60 but up to 20% of people with Parkinson’s are diagnosed under the age of 50. Parkinson’s disease does not discriminate with respect to race, gender or region of the world, although slightly more men than women have Parkinson’s.

What causes Parkinson?

PD is thought to be  caused by the slow deterioration of the nerve cells in the brain that  create dopamine, the chemical that  helps control muscle movement throughout the body. Thus, it is characterized by what are described as motor symptoms, that is, difficulties in movement.

What are the symptoms of Parkinson?

Early symptoms, often appearing gradually, may be a resting tremor (for example, a slight shaking of the hand when the arm is still) on one side of the body, or “facial masking” when it appears to others that someone has a blank stare. Other symptoms include muscle stiffness and rigidity, bradykinesia (slowness of movement), and gait and balance impairment. As the disease progresses, symptoms such as voice and swallowing difficulties and freezing of gait may occur. Non-motor symptoms, such as depression, sleep difficulties, hallucinations, constipation, and cognitive changes (dementia) can also occur.

How is it treated?

Although people may live a normal life span with Parkinson’s, there is no cure. Treatment focuses on managing symptoms.  Some people with Parkinson’s may benefit from Deep Brain Stimulation, in which a surgically implanted device delivers electrical stimulation to the areas in the brain responsible for controlling movement. This interrupts the abnormal nerve signals that cause tremors and other symptoms. Help with symptoms can also come from physiotherapy, occupational therapy, speech therapy, and exercise.

Do people with Parkinson get dementia?

As Parkinson’s progresses, it will cause dementia in approximately 50-80% of sufferers.  The dementia experienced by people with PD is associated with abnormalities that start in the mid-brain. These include difficulties with attention, organizing, multi-tasking, shifting attention, task completion, decision-making, problem solving, memory retrieval and word-finding.

This can be compared to Alzheimer’s dementia, which typically starts in the entorhinal cortex, and often next spreads to the hippocampus, the area where memories are formed. The result is that Alzheimer’s disease tends to present first as short term memory loss.

When cognitive decline and/or dementia appears less than a year before, or at the same time, as the onset of motor symptoms the diagnosis of Lewy Body Dementia (LBD), may be made.  When the motor symptoms appear more than a year before the dementia, it is generally diagnosed as Parkinson’s disease. The two can appear very similar. People with PD or LBD both have abnormal clumps of proteins, called lewy bodies, in the brain stem. One of these proteins, alpha-synuclein, cannot be broken down by cells. Lewy bodies surround cells in the brain, causing the problems with motor coordination, and eventually leading to brain degeneration.

It is crucial that someone with PD takes their medication as prescribed and on time. If they do not, delirium may occur, the symptoms of which are similar to dementia. Thus, it is important to monitor how medications are taken. If you are concerned that dementia is developing, bring an accurate list of symptoms you are seeing or experiencing when you see your neurologist. If possible, your representative, a caregiver, friend or family member should be present during your appointment.

Where can we get more information?

While primary help must come from a trusted medical team, people with Parkinson’s and their family members and caregivers should also seek out support and information from an organization such as the Parkinson Society British Columbia. They will give you tips, literature, and tools for managing the emotional and practical symptoms of the disease. Counselling and support groups are also available through the Society.

Contact Parkinson Society of British Columbia by phone 604.662.3240 or toll free 1.800.668.3330 or by email info@parkinson.bc.ca

 

TIPS ON TALKING WHEN SOMEONE HAS DEMETNIA

• Speak Slowly, Clearly and Carefully: Speak to them as an adult but use simple words that will not be misinterpreted
• Ask Questions that can be answered with yes or no
• Be Aware of Non-Verbal Communication: Verbalize how you think and feel clearly as body language is often not picked up easily.
• Show and Talk: Use gestures while you speak (for example: motion to the door when asking if they want to go for a walk)
• Repeat Important Information: If you are uncertain whether your message is clear repeat using different words
• Encourage Exchange: Listen for their response and encourage them to speak
• Choose the Best Time to Communicate: Avoid times when the individual is sleepy or feeling anxious or overwhelmed

Common Myths When Planning for Your Future

Are you prepared for end-of-life, incapacity and your future?

Read some common myths and make sure you are on the right track with your plans.

MYTH #1
I have a Will and everything in joint names—I’m covered.

A Will only has effect after your death—it cannot authorize someone to act on your behalf for health care or financial affairs while you are alive. There are other legal documents you need to make in case you require assistance while you are alive—due to an illness, injury or disability.

It is common for spouses to own things jointly such as bank accounts, vehicles and real estate property. However, this is not enough!  For example, if you become incapacitated, joint ownership does not give your spouse authority to sell the car you both own. It also does not let your spouse renew the car insurance.

Read our Let’s Plan Handout to find out what you need to be covered.

 

MYTH #2
A Power of Attorney covers health and personal care decisions, as well as financial and legal affairs.

Under BC legislation, a Power of Attorney/Enduring Power of Attorney is a legally enforceable document but only for financial and legal affairs.

A Representation Agreement is the legally enforceable document in BC that gives someone authority to make health care and personal care decisions on your behalf. (Some people might also make a Representation Agreement to cover their routine finances—instead of an Enduring Power of Attorney.)

More Info:

Enduring Power of Attorney Fact sheet

Representation Agreement Overview

 

MYTH #3
It’s only about end-of-life and all about refusing life support.

While we are all going to die, most of us will need help with our financial affairs and decisions about health and personal care before we reach ‘end-of-life.’

• We might need temporary assistance if we are injured in a car accident or sports accident or have a serious illness or suffer a stroke.
• People with developmental disabilities or permanent brain injury or fetal alcohol spectrum disorder need assistance on an ongoing basis.
  
• Chronic and degenerative conditions such as Parkinson’s disease and dementia may require an increasing amount of assistance over time.

Even at end-of-life, there are a variety of health and personal care decisions related to providing comfort and supporting quality of life rather than refusing treatment. For example, giving consent to medication for pain management or arranging for a special mattress to prevent pressure sores or contacting a leader in the faith community to visit.

To learn more read Mary’s story.

 

MYTH #4
All I have to do is discuss or write down my wishes about care I do and do not want.

It is great to have conversations about your wishes but only by making a Representation Agreement in BC can you have certainty. A Representation Agreement is about giving the person or people of your choosing the necessary legal authority to carry out your wishes, if you cannot speak for yourself.

You do not have to include wishes in your Agreement and Nidus recommends you do not. This gives you the freedom to have ongoing discussions with your representative or update written wishes without re-doing your legal document.

To learn more read Heather’s Story.

 

MYTH #5
A living will is a legal document for end-of-life care.

This is a common misconception. The term living will was coined a number of years ago in the United States to raise awareness about a patient’s right to refuse medical treatments that can prolong life but have a negative effect on quality of life.

A living will is NOT a legal document—there is NO Living Will Act in BC.

The good news is that BC has strong legislation about health care consent, thanks to the initiative of citizens and community groups, including the Alzheimer Society of BC. For example, patients have the right to refuse health care, even if it means their death. In addition, you can authorize someone to do this on your behalf if you are incapable, using a Representation Agreement.

Even though a living will is not a legal document, people can use it to write down their wishes, preferences and values about care they do or do not want and give it to their representative in case they become incapable. A representative named in a Representation Agreement, must make decisions according to your wishes and values—that you expressed verbally or wrote down in a living will or advance care plan.

Click here to learn more about your rights to refuse health care.

 

The health system promotes advance care planning to encourage people to plan for health care. Nidus prefers the term personal planning because it is important to include all life areas—financial, legal, personal care as well as health care—and to recognize that the financial and social service systems have a role along with the care system.  

 

Thank you to The Law Foundation of BC for the funding to provide education on consent rights for health and personal care and tools for planning.

We did our Wills and assumed a copy was filed with BC. Were they?

Q. We did our Wills in 1998 and they were filed/registered with BC. We assumed that meant our actual wills were filed. Were they?Do you recommend lawyers who do Wills?

 

The Wills Registry allows you to file a ‘notice’ that contains information such as the date of the Will and where you are keeping the original. When you die, if probate is required, your executor must search the Wills Registry. However, the Wills Registry does NOT store a copy of your Will.

You can STORE A COPY of your Will with the Nidus Personal Planning Registry—use the ‘Other Documents’ type of registration. Storing a copy of your Will may be more important than ever as a result of recent changes to the legislation governing Wills (see below).

Nidus does not publish a list of lawyers or notaries public who make Wills, however you can read about various legal professionals who support Nidus education activities and who are featured as guest experts—see Volunteer Contributions. Below are tips and contact information for locating a notary public or lawyer in your area.

It is a good idea to review your Will every few years. It may be timely since the law governing Wills and Estates changed as of March 31, 2014.

 

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RESOURCES

April 6-12, 2015 is Make-a-Will Week in BC!

Clicklaw Resources

Canadian Bar Association Resources

Courthouse Libraries – Wills Event list

Previous Ask Joanne: Will you recommend a Will Kit?

 

TO STORE A COPY OF YOUR WILL:

Personal Planning Registry

Registering “Other Documents” Fact Sheet – for registering a Will, Memorial Arrangements and other documents.

Registry Security Fact Sheet

List of Registration Agents – lawyers and notaries public who register on behalf of clients.

 

TO FIND A LEGAL PROFESSIONAL:

Nidus recommends that you do your research—see the information below to assist you. You should also contact the legal professional and talk with their staff about your needs so they can explain their procedures and what to expect. They may have suggestions on what to bring to your appointment to save time and costs. Fees depend on many things and you cannot assume all lawyers charge the same amount or that a lawyer always charges more than a notary public.

Society of Notaries Public of BC
Phone 604.681.4516 or 1.800.663.0343
Search Find a Notary at www.notaries.bc.ca

Review Discipline Hearing Reports 

Lawyer Referral Service
Phone 604.687.3221 or 1.800.663.1919
Read about the service at www.cbabc.org/For-the-Public/Lawyer-Referral-Service

Review current practicing status at Lawyer Lookup 

Check discipline history

Check current citations and hearings 

List of unauthorized practitioners 

 

Nidus partnered with BC Courthouse Libraries to raise awareness about BC’s essential legal planning documents and the Nidus Registry. The kick off event was held on September 15th at the Vancouver Public Library Central Branch with a panel of experts in the field. Questions that were submitted will be answered in a series of posts by Nidus and various panel members. To see photos from the event click Gallery; and click Registry Sing-a-long for the fun of it!

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