Thank you to the joint committee for allowing me to speak.
I'm a retired physician with over 25 years of experience in providing palliative care in all locations of care. I've been an attending physician and palliative care consultant to people with dementia, as well as physician director of long-term care and a physician leader in academic palliative care.
I cared for my elderly neighbour who wanted to stay in in her house where she lived alone, despite her dementia. She had no children or spouse, so we were her family. I was her power of attorney for the last four years of her life. She died at 96, having lived in the same house since she was eight years old.
With respect to advance requests for MAID, despite the compelling evidence of wanting to be able to make some choice, medical and social science literature reminds us that people are poor at anticipating what life would be like with a life-changing illness or disability. People adapt to illness and disability and adjust their needs for a decent quality of life. Many medical conditions have long and unpredictable courses. Suicidality caused by these conditions can last for protracted periods of time.
In jurisdictions where advanced requests are permitted, physicians have difficulty following advanced directives for hastened death because they cannot reaffirm consent and they cannot establish current suffering. Family members have the same conflicts and find it a burden.
I want to focus on the suffering of people with dementia.
People with dementia can self-rate their quality of life. We know that they consistently rate it higher than caregivers do. Cognitive abilities have little impact on their quality of life, but good relationships, social engagement and spiritual and religious beliefs help maintain quality of life. We do know, though, that losing functional ability, pain and depression can reduce quality of life.
A 2018 study of the lived experience of over 600 individuals with dementia revealed the importance of their physical environment and the people they interact with. A positive environment allows people with dementia to continue to participate in life, and it includes caregivers who facilitate retaining control and a sense of purpose. Through adapted physical environments like dementia villages, people with dementia can continue to walk outside and express their emotional, relational, spiritual and creative selves.
Technology can also aid in reminding them of their identity and memories. The fear of losing capacity and losing control over their lives may not be realized because they are still recognized and treated as a person.
Dr. Tom Kitwood was a researcher in maintaining personhood in dementia. He concluded that personhood is “a standing or status bestowed upon one human being by others.... It implies recognition, respect and trust.“ He described how our actions undermine the personhood of a person with dementia. These are actions such as conversing with others as if the person with dementia were not present, infantilizing, disempowering by not letting someone walk unsupervised, treating people like objects, and taking away control of every decision. It is our society's behaviour that contributes to the suffering of people with dementia and fuels the stigma supporting the idea that with dementia, a person dies inside a living body.
Those with money can buy adapted environments with supportive care. If we allow advance requests, those who can't afford adapted environments will have only an illusion of choice. They will choose between depersonalizing care or MAID.
Providing a palliative approach to care that focuses on maintaining quality of life and providing care that meets preferences of people is essential, yet a CIHI study in 2017 showed that only one in 20 people with dementia actually receives palliative care.
I wrote a brief to this committee that argues that those suffering without access to quality palliative care or who receive it only after they've requested MAID is a medical error. The error is not in receiving MAID, as the person may meet all the requirements. The error of omission occurs in the months before, when the pain, shortness of breath, anxiety and feeling of a burden to others began but was not recognized and addressed. This is an error, because we know that palliative care can help with this and improve quality of life.
Every chronic disease organization recommends timely access to palliative care. I want one of you to ask me how the federal government could achieve greater access to palliative care.