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).