Jim Mann wants everyone to know that he’s more than his dementia.
He was diagnosed with Alzheimer’s 12 years ago, but that doesn’t mean he can’t be involved in making decisions about his health.
The distinction is important for Mann — and many others living with dementia. The Surrey resident is thinking a lot about consent these days after being part of an advisory committee on health care consent for people with dementia. Their report, Conversations About Care, was released Feb. 27.
Mann, 70, said professionals in health care still make assumptions about people with dementia.
He recalled an emergency room incident when a nurse yelled his name and added “patient only.”
“My wife and I stood up and walked over. Halfway there, she (the nurse) yelled again ‘patient only.’ I got up to her and said ‘my wife needs to be with me. I have Alzheimer’s.’ She turned around and looked me up and down and said ‘well, you look fine.’ “
Mann said that while the public might not always understand that dementia is a cognitive impairment not a physical one and therefore not visible, he believes that kind of language isn’t acceptable in a health care environment.
“Within the medical system, I’m sorry, you should really know this by now,” he said.
The two-year collaborative research project that Mann was a part of was undertaken by the Canadian Centre for Elder Law and the Alzheimer Society of B.C. Funding included a $40,000 grant from the Law Foundation of B.C.
The goal of the project’s Conversations About Care report is to ensure that the legal framework in B.C. remains strong enough to protect people living with dementia as well as those named as their legal substitutes.
In 2018, about 70,000 people in B.C. were living with dementia. By 2033, that number is estimated to increase to almost 120,000.
Krista James, national director of Canadian Centre for Elder Law at the University of B.C., said the report is intended to start a conversation about the rights of people with dementia.
“I feel that we’re missing that rights-based lens that recognizes the rights of older people to make choices about what happens to them,” she said.
“Although the law is different in each jurisdiction, and this report applies specifically to the experience in B.C., we need to open up that conversation to think about the citizenship rights of older people in a health care context. It’s really urgent.”
The report’s 34 recommendations were developed through a process that included consultation with people living with dementia, family caregivers, health care professionals, and others who deal with consent on a regular basis.
James said the origins of the report came from phone calls she received from family caregivers who felt frustrated that decisions were being made without consultation.
B.C. is ahead of many other provinces because of our comprehensive health care consent statute called the Health Care (Consent) and Care Facility (Admission) Act.
“From our perspective, the health care consent law in B.C. is super robust and I think fairly clear,” James said.
“It says if it’s not an emergency, you need to get that prior informed consent. The care facility regulations that govern long term care don’t seem to be consistent. There is a lot more wiggle room.”
That means some physicians, licensed practical nurses and care aids don’t understand the concept of prior informed consent for non-emergency care.
“I have talked to a few people who think that if the person is in the care facility they have consented to all the care that the people who work there think is the right care for them,” she said.
“Some of the staff don’t understand they have to get consent. They confuse admission to the care facility with consent to all the meds.”
One of the report’s recommendations calls for all licensed long-term care facilities to set out rules on restraints, including chemical restraints (medications such as antipsychotics used to control aggressive behaviour).
Other big concerns include the challenge of sorting out situations where family members making decisions about care for someone with dementia can’t agree on what to do. One way to address that, James said, is to have social workers involved in helping families find a solution.
James said the report recognizes that health care providers are never going to be experts on the law.
“They’re not lawyers,” she said. “We shouldn’t expect them to be experts on the finer details of the law. They need to have support so they can properly interpret the law.”
Recommendations of the report
• Improving health care decision-making laws in B.C. by adding language to recognize that people’s capacity to make health care decisions can vary from day to day and decision to decision, and that they be involved to the greatest degree possible in all case planning and decision-making.
• Address barriers to informed consent experienced by Indigenous people and people who need language interpretation, and create financial incentives to support physicians so they can spend time to talk with patients and families.
• Create a review tribunal to allow people living with dementia to review health care decisions made by substitute decision makers.
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