MAID town hall: What the government, experts say about proposed changes to medical assistance in dying law
The National's Andrew Chang and members of public put questions and concerns to experts, justice minister
Whether you support it or are against it, one thing is for certain — medical assistance in dying, or MAID, is a complex, multilayered and deeply personal issue.
Canada's Parliament passed Bill C-14 in 2016, legalizing assisted dying. Since then, more than 13,000 people have chosen to end their lives that way.
However, a Quebec Superior Court decision struck down the "reasonably foreseeable death" clause in Bill C-14 as unconstitutional, forcing the government to amend the law earlier this year.
The amended law, known as Bill C-7, was tabled on Feb. 24. The proposed changes address, among other things, concerns around who is eligible for MAID, the role of palliative care, and the role of consent.
A full review was scheduled to begin this summer, but has been delayed due to COVID-19. The pandemic has also had an impact on the delivery of MAID across Canada as some hospitals temporarily restricted services, and personal protective gear (PPE) and physical distancing requirements added a layer of complexity to the procedures.
Canadians across the country still have many questions about who can access medical assistance in dying, and when. After the government tabled Bill C-7 in February, The National co-host Andrew Chang and members of the public put some of those questions and concerns to experts in a CBC town hall as part of an important yet difficult conversation. The expert panellists included:
- David Lametti, Minister of Justice and the government's lead on the MAID file
- Madeline Li, former head of MAID at University Health Network
- Trudo Lemmens, professor and Scholl Chair in Health Law and Policy in the Faculty of Law, the Dalla Lana School of Public Health, and the Joint Centre for Bioethics at the University of Toronto
- Susan Desjardins, Dying With Dignity Canada
The National Conversation on MAID was recorded on March 5, 2020, but due to the pandemic it was delayed and aired on The National on July 16 and on CBC News Network on July 19. These are some highlights from the town hall.
Phyllis Fehr is 60 years old, and a former intensive care nurse. She was diagnosed with Alzheimer's seven years ago. While the diagnosis was difficult for her to accept initially, she does not let it stop her from living and ending her life her way.
Fehr asks: "How will the medical system ensure that there are enough safety checks in place that I will indeed receive MAID when I am near death, and not too soon before I am ready?"
Madeline Li believes that advanced directives discussed and drawn up with family members, along with guidance from clinicians, can help ensure that patients' wishes as to the timing of MAID is clear:
Minister Lametti added that in addition to current safeguards already in Bill C-14, other safeguards are also under consideration.
"There will have to be safeguards that we look at when we do deal with dementia and Alzheimer's more specifically … we're always trying to find the right balance between safeguards and a person's ability to choose."
Ron Posno has dementia and is a strong advocate of allowing advance directives for MAID. At present, the law requires a final consent just before MAID is administered — which is a worry for people with dementia, since they lose the ability to do that as their illness worsens.
Posno asks: "Those of us with dementia have so far been left out of the conversation around MAID. Will people with dementia be included in the new amended MAID legislation?"
Minister Lametti says he believes that MAID and dementia is an issue of such complexity that comprehensive further review is needed before a decision of any kind can be made:
Trudo Lemmens adds that advanced directives for MAID by dementia patients is globally a hot-button issue. He points out that it is so complicated that, "there is no country in the world except the Netherlands that allows an advanced request for medical aid in dying in the context of severe dementia."
Power of attorney
Judy Kirby watched her mother die a slow, painful death. She had power of attorney over her mother's treatment, and although she could have stopped her being given water and oxygen, she says she did not have the legal ability to ask for MAID for her mother.
Kirby asks: "Will or when will MAID be available to a power of attorney to make those decisions?"
Minister Lametti told Kirby that allowing a power of attorney to make decisions around MAID is an "ethically charged issue," and that the government is going to look at it at a later stage:
Susan Desjardins, from Dying With Dignity, shared with Kirby that she had personally gone through a similar experience. She suggests the patient, "identify not necessarily a power of attorney, but an advocate who could speak for them if they can't speak for themselves at a time at which they would meet certain conditions they had defined, [and] that at which time they would have wanted to have an assisted death."
Jason LeBlanc posed a question to the panelists on behalf of his girlfriend, Justine Noel, who was too sick to attend the town hall.
Justine is 29 years old and has fibromyalgia. She has submitted three MAID requests and has been denied twice. She's awaiting official assessment on her third request. LeBlanc says Noel is worried she will be denied access to MAID once again, due to a lack of medical expertise available to assess her specific condition.
Leblanc asks: "Justine's question is, what do you intend to do when there is no available MAID assessor with expertise in the applicant's condition?"
According to Minister Lametti, the expert assessment for MAID no longer requires a specialist, but rather a practitioner with "some level of expertise in the condition." He adds:
Ernest Frederiksen is a 27-year-old who has lived in constant pain for more than 11 years, due to fibromyalgia and arthritis.
He applied for access to MAID in 2016 and was denied, as his death was not considered "reasonably foreseeable." He plans to apply again in a few months.
Frederiksen asks: " Why should I, or those like me whose deaths are not reasonably foreseeable, have to continue enduring physical or psychological suffering that is intolerable and that cannot be relieved, through a 90-day waiting period instead of a waiting period of 30 days?"
Susan Desjardins from Dying with Dignity, also questions the rationale behind a 90-day waiting period before MAID can be given. "Do we really need a 90 day period, or is some of your length of period [not] reasonable to achieve the goals that we're trying to here in terms of balancing things?"
Minister Lametti pointed out that there were waiting periods under the old act. However, in Bill C-7, waiting periods have been eliminated "because we found that they don't work." He adds that the 90 days is a "period of assessment":
MAID and the marginalized
Sarah Jama is the founder of the Disability Justice Network of Ontario. She's worried that once the requirement for "foreseeable death" is removed, MAID will be accessed by a disproportionate number of disabled and racialized people, as a result of a failure of the system to help them live full, sustained lives.
Jama asks: "How are we going to make sure that marginalized communities like the Indigenous, racialized people, and those with disabilities, don't feel pressured to access MAID because they feel like a burden on the state?"
Trudo Lemmens shares Jama's concerns. "People with disabilities are now confronted with the choice when they enter the hospital. You can have MAID in 90 days, or you can go through administrative difficulties of applying for a new system of disability support ... that's actually not available."
Minister Lametti admitted that the government needs to do more for marginalized people and communities. He stressed that the decision for MAID should never be one of compulsion, but rather always be an informed choice:
Bob Davies is a pastor at Kanata Baptist Church. As a person of faith, his biggest concern is the impact of MAID on those caregivers, organizations and people whose moral code does not permit it.
Davies asks: "What is being done to protect organizations, health care workers, caregivers and others from facing the emotional and psychological consequences of participating in or being near a medically assisted death that is against their conscience?"
Minister Lametti assured Davies that no clause in Bill C-14 will compel anyone to participate in MAID if they choose not too:
MAID and mental health
Glenn Johnson has been living with PTSD and chronic depression for many years. He also suffers chronic pain from degenerative disc disease. He knows that he will want MAID when conditions for him worsen, and he wants MAID extended to those with mental health issues.
Johnson asks: "Pain is pain. Suffering is suffering. And there is no foreseeable end to either my chronic pain or my mental health issues. I want to know why people like myself, with mental illness, are not able to access MAID?"
Trudo Lemmens admits that MAID and mental health illness is one of the most complex issues to tackle. Determining who will and will not get better is close to impossible, he says:
Minister Lametti added that, "it is an ongoing challenge to better understand the various kinds of mental health issues that might become the basis for a MAID request down the road. We just kept hearing again and again that we weren't ready to make it part of the MAID package."
Palliative care vs. MAID
Dr. Naheed Dosani is a Toronto palliative care physician who works at hospitals and within the community to care for people with life-limiting disease at a variety of stages of illness.
In his view, priority needs to be given to better access and options around palliative care, rather than MAID.
Dr. Dosani asks: "How are we working to build up our health care and social care systems, not just in hospitals but in the community too, so that all Canadians from all walks of life have equitable access to quality of life-based palliative care?"
Minister Lametti agreed that access to quality palliative care is crucial. "As a government we have identified palliative care as critically important, and we're developing an action plan. We'll obviously work with our provincial partners and territorial partners to try to make sure that it happens."
Susan Desjardins adds that she believes that both MAID and palliative care focus on the same thing — the quality of dying:
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