MAID law on the right to die should respect individual choice: ethicist

Ideas53:59How philosophy plays a vital role in Canada's biggest ethical debates

Arthur Schafer has thought a lot about life and death.

As a leading bioethicist, he has written and lectured extensively on medically assisted death in Canada, also known as MAID, and has helped shape national policy on it.

Earlier this year, the federal government wavered on implementing ground-breaking, but controversial new rules allowing for the possibility of MAID for patients suffering solely from severe mental illness the second delay that has now pushed its implementation until 2027. It is only the latest chapter in what remains an evolving policy.

"Your values may not be the same as mine. The way you live your life will likely be quite different from the way I live my life, and I will want the way I die to reflect the values by which I lived, as you will," Schafer told IDEAS host Nahlah Ayed.

The values by which we all live and die have changed greatly over Schafer's 50-year career as an ethicist. He started by teaching ethics to medical students in 1972 at the University of Manitoba and later became the founder of the Centre for Professional and Applied Ethics at the University of Manitoba.

The applied ethicist says he has an obligation to work toward a kinder gentler society.

Schafer joined Ayed in a wide-ranging discussion about Canada's biggest ethical debates.

Here is an excerpt from their conversation that focuses on MAID.

What does an ideal MAID law look like?

I think the ideal MAID law would be maximally respectful of individual choice. It would give individuals a range of options. It would make palliative care available to people, and good housing, and economic security. And when we're dying, when we're suffering intolerably and in an enduring way with a grievous medical condition which is incurable, and when we're competent, when we have decisional capacity, when we're able to make the decision for ourselves, I think we should, respect the wishes of each individual. Maybe it won't be the decision you would have made. Your decision might not be the one that I would make. But we have to protect the vulnerable. We have to protect individuals from being abused or exploited. And at the same time, we have to respect their wish to make the basic decisions with respect to their own living, and their own dying.

How far are we from that version currently?

Well, I think there's still room for adjustments in our end-of-life legislation. Somewhere over 80 per cent of Canadians think that the law that says you've got to be competent, when MAID is administered, that that's too restrictive. That if I'm suffering from dementia, I'm still competent, I'm still clear-minded. And I know that when I can no longer recognize where I am, who I am, my spouse, my children, that I don't want my life to be sustained, that I want MAID. Overwhelmingly Canadians think I should be able to put in my advance directive. No CPR, no resuscitation, no breathing machine, no antibiotics, only palliative care. But I should be able to opt for medical assistance in death. If I've got brain cancer, if I got dementia, if I've got some kind of disease that's going to rob me of competence. So that's one area.

Mature minors is another area where the law may well be reformed. At the moment, you have to be 18. So if a mature 17-year-old is suffering intolerably and incurably from cancer that spread throughout her body, the fact that she's not 18 is going to prevent her from opting for an assisted death. I think we should allow children under the age of 18 who are competent, perhaps in the case of younger children, with the agreement of their parents to participate in the end of life decisions. So that's a second area.

There are more. MAID for psychiatric patients is going to be, I think, the most controversial issue, when it's going to be legalized. As soon as you say the words 'mercy killing' or 'medical assistance in death for mentally ill patients,' people have a nightmare vision of vulnerable, mentally sick patients being bumped off. I think it's because it needs to be made clear that mentally disordered patients get MAID at the moment. If you've got cancer, and you meet the criteria, you're mentally ill but you're sufficiently clear-minded that you can say, 'I want life support discontinued.' Or even if your disease is grievous and incurable and your suffering is great, the fact that you're mentally ill won't preclude you from getting access to MAID.

But what if the mental illness is the sole underlying mental condition? So you've not got cancer, you've not got congestive heart failure, you've not got a neurological condition that's going to rob you of all your capacities. What you've got is a major depression or perhaps schizophrenia, and you're suffering intensely. And it's prolonged, perhaps for 10 or 15 years. You've had every treatment for your major depression. You've had drug and pharmacological therapy, and you've had talk therapy, and you've had shock therapy. And after 15 or 20 years, you're still suffering. Should you be eligible for MAID? Well, I think there's a strong argument if you're competent, if you can understand the choices before you, if you understand your options notwithstanding your depression, if your disease really is incurable.

So how do we know it's incurable? Well, 15 years of trying every treatment... The Netherlands and Belgium are two countries in which this applies only to a handful of people. But mentally ill people should not be automatically excluded from making end-of-life decisions. They can already say, I don't want life support. And if they're competent, the life support is withdrawn and they die. I think extending MAID, with careful regulations if they're not dying imminently, the regulations will say 90 days of careful assessment, 90 days at least.

There are psychiatrists who say we can make these assessments. We can distinguish who's competent amongst those who are mentally suffering from a mental disorder, from who's not competent. So unless the federal government changes its mind again, mental illness as the sole underlying medical condition will not be excluded automatically. It doesn't mean you'll get MAID, but it means that if you can persuade the doctors, the psychiatrist that you meet all the criteria, that you will be eligible.

So given how controversial that idea is, what's your best argument? What's the ethical argument for this to proceed as planned?

The best ethical argument is that patient autonomy is a fundamental value, even for those with mental illness, and that relief of suffering is a fundamental value. There are patients who have suffered terribly, are suffering terribly from mental disorders, who end up killing themselves. They starve themselves to death. They throw themselves off bridges. They drive their car on the highway into a lorry. There are horrible consequences when people try to kill themselves. Sometimes they fail and their suffering is intensified. Sometimes they succeed and others have to clean up the mess. I think in general, we have to find a way of balancing our legitimate desire to protect the vulnerable, on the one hand, and then on the other hand to respect the competent wishes of patients, including those who have mental illness.

Every year, the government of Canada produces statistics on the number of MAID cases. It's about 3 per cent of all deaths in Canada slightly over 3.3 per cent.

Who are those people?

Well, critics said that MAID would be a cheap way of bumping off the poor, racialized minorities, women, the disadvantaged, the powerless. But if you look at the Canadian figures, you find that the people who are receiving MAID in Canada overwhelmingly are wealthy. They're the economically privileged. They're university educated. They are people who have had palliative care or at least have had full access to palliative care.

It turns out that people who are good at gaining access, gaming the healthcare system, gaining access to healthcare resources are also good at gaining access to MAID. They know about it. They know the language in which to present their request. And they seem to succeed much more often. I'm not saying we don't need to be concerned about poor and vulnerable people who could be exploited or abused, but all the evidence points in Canada, also in Oregon and Washington state and those American states that have legalized physician-assisted suicide, the evidence does not point to a slippery slope, and it doesn't point to red flags.

Listen to the full interview by downloadingthe IDEAS podcast from your favourite app.

*Q&A edited for clarity and length. This episode was produced by Nahlah Ayed.It is part of an occasional series in which we highlight the careers and work of eminent and enduring thinkers. If you know of someone who should be featured in our series, please contact us at ideas(at)cbc.ca.