Dementia and Representation Agreements: Understanding the Lived Experience of Representatives During Health Care and Personal Care Decision-Making
24 November 2020
By Alexis Haig
Alexis Haig is a Master in Gerontology Candidate at Simon Fraser University. Her thesis is entitled “Exploring Health Care and Personal Care Decision-Making under Representation Agreements: The Lived Experiences of ‘Representatives’ of Older Adults with Dementia.” Alexis holds a B.A. and B.S.W. from the University of British Columbia.
Covid-19 has changed the way we live and the way we think about our health. Through advance (care) planning, however, we can all be proactive and have a say in our affairs. Advance planning involves appointing a decision-maker and discussing your goals, values and wishes with your appointed decision-maker, support system, and doctor in case of a time where you may not have the capacity to make decisions on your own. For example, should you contract Covid-19, planning helps prevent unwanted hospital admissions and ensures your wishes are honored. Yet, little is known about Representation Agreements – the legal advance planning tool for health care and personal care decision-making in BC – and how it is used in practice.
Representation Agreements and Dementia
Under the Representation Agreement Act, an adult appoints a ‘representative’ who helps the adult make decisions or makes decisions on the adult’s behalf around their personal care and health care. An adult can either make an agreement under section 7 (RA7) or section 9 (RA9) of the Act. RA9s include high-risk health care decisions such as refusing life sustaining treatment. Due to the potentially invasive nature of these interventions, an adult must be capable of understanding the nature and consequences of the agreement in order to make one. An RA7, on the other hand, allows an adult to make an agreement even if the adult does not meet the capability threshold to make a contract. The Act also contains a legal framework for supported decision-making, whereby the adult makes their own decisions with assistance of a person that they trust.
The Representation Agreement Act has been lauded as a unique legal tool that supports adults’ legal capacity to manage their own affairs. Yet, little is known about how representation agreements are used in practice with older adults living with dementia. The Canadian Centre for Elder Law has begun research into representation agreements in supported decision-making and law and practice of health care consent for people living with dementia. My thesis adds to this research by exploring how the agreement is being used in health care and personal care matters for an older adult living with dementia through the lived experiences of their appointed representatives.
From August 2019 to March 2020, I interviewed 10 current and past representatives appointed under a representation agreement for an older adult with dementia. Through in-depth interviews, individuals shared their personal stories of – their lived experiences – decision-making with this legal document.
The following are key findings from my research highlighting what factors influence decision-making:
1) Representation Agreements were typically made following the older adult’s diagnosis of dementia and while participants were already providing informal support to the older adult loved one’s care
- Community services, like the Alzheimer Society of BC, and health care professionals were crucial in introducing representation agreements to the older adult and the participant
2) During decision-making, representatives consulted across multiple bodies and considered several factors to make decisions. Representatives consulted with the older adult, considered their own personal views and the perspectives of family, friends, and others appointed in the agreement, and sought guidance from professionals and care providers, all while simultaneously considering what decisions were actually possible given the limits of the health care system.
- Representatives consulted the older adult’s wishes. Representatives incorporated a mixture of the older adult’s current wishes, previous wishes, life history and what was perceived to be in the older adult’s best interest.
- Representatives contemplated personal factors, including their intuition regarding the decision and the potential consequences of the decision, to evaluate outcomes
- Representatives also sought guidance from professionals who were considered experts in health care system navigation and health care and dementia-related knowledge that was important for decision-making
3) Participants faced numerous barriers to decision-making, including a lack of recognition of the representation agreement and the representative’s role, limited access to health care providers and information regarding the older adult’s health status, exclusion from decision-making, and broader health care system-related issues.
- There were also hurdles to decision-making due to representatives not knowing the older adult’s wishes, and resistance from older adults during decision-making which was attributed to the dementia symptoms they were experiencing
4) With the progression of the dementia and older adults experiencing increased cognitive decline, representatives transitioned from initially assisting the older adult to make their own decisions, to eventually them making decisions on the older adult’s behalf
5) Representatives experienced mental, physical, and emotional strain from being a representative:
- Decision-making was a challenging, emotional roller coaster given the knowledge and skills required to make decisions for their loved one
- Representatives entered the role with limited knowledge about navigating the health care system, dementia, and decision-making
6) Representatives considered roles of health care coordinator, decision facilitator, and advocate as being part of their decision-making duties.
- Representatives quickly learned that they needed to stay vigilant to ensure representatives needs were being met and health care providers were practicing informed consent
Representatives identified a persistent medical gaze over the older adults’ decisions and care delivery, both in acute care and home and community care. The medical gaze refers to the regulation of a person’s illness experience and care needs strictly through a biomedical lens. From representatives’ accounts, there were several instances where older adults were given treatment, such as anti-psychotic medication, without informed consent.
Representatives saw their work as promoting the older adult’s quality of life needs. They took on an advocacy role to ensure the older adult’s care needs were being met. Nevertheless, representatives are also susceptible to falling into the medical gaze over people living with dementia. Representatives described a delicate process of balancing a decision-making approach that did not overtake the adult’s decision-making wishes.
Most interviewees had not even heard about representation agreements until informed by health care or other service providers. Greater public awareness and education are needed to support advance planning conversations and the making of legal planning documents. Successful planning must go beyond simply making a document and discussing health care wishes. Conversations need to include not only health care wishes but equally address quality of life goals and values. These conversations should occur on an ongoing basis to ensure the most current wishes will be honored, as wishes or circumstances may change.
Health care providers play a critical role in helping to facilitate advance planning conversations. Yet representatives discovered that many health care professionals lacked knowledge of advance planning and representation agreements. Greater professional education is needed in these areas.
Covid-19 has reinforced the need for all of us to engage in advance planning. We have learned that a health crisis can happen any time, but there are ways to have a say in your health in case. I encourage everyone to start these conversations with your support circle and find out more about representation agreements and what legal planning tool works best for you.
There are resources available from the Alzheimer Society of BC, Nidus Personal Planning Resource Centre and Registry, and BC Centre for Palliative Care. These resources contain British Columbia-specific information on planning tools as well as information on starting these conversations with friends and family. Also, the Canadian Centre for Elder Law (in collaboration with the Alzheimer Society of BC) published a series of plain language resources on health care decision-making for people living with dementia and their families.
“You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.” ― Atul Gawande, Being Mortal: Medicine and What Matters in the End