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Udo Schuklenk, PhD, Professor of Philosphy and Ontario Chair Research Chair in Bioethics, Queen's University, spoke with the Editorial Board at The Globe and Mail on August 22, 2011. Photo By Deborah Baic/The Globe and MailDeborah Baic/The Globe and Mail

Professor Udo Schuklenk, a philosopher from Queen's University, talked to Marina Jimenez of the Globe and Mail editorial board. He is chair of the Royal Society's committee on end-of-life decision-making in Canada. The committee, which will release a lengthy report this fall, spent two years studying this issue, and the experience of other countries which have decriminalized assisted suicide.

What is the impact of Canada's aging population on end-of-life care?

This has severe consequences. In Canada, seniors, who make up 12.7 per cent of the population, gobble up 30 per cent of health care expenditure. The number of seniors will double in 20 years. So pensioners will make up 24 per cent of population and will gobble up 60 per cent of the health care budget, and up to 100 per cent in some areas, for example heart disease and hypertension.And yet, there is no planning in place to deal with this deluge of elderly people. We are not prepared in terms of infrastructure.

How do Canadians want to die?

Most Canadians would like to die at home. And yet, 70 per cent die in hospital, many in special care units. This is very expensive. Ninety-five per cent of Canadians would benefit from palliative care but 70 per cent lack access. Those without palliative care would be more likely to ask for assisted dying or consider suicide because they cannot bear any longer the quality of the life they're experiencing.

What about advance directives?

Another big problem is the large increase in the number of elderly who will suffer from dementia. In an ideal world, you'd like to have competent people deciding their treatment. But if you have a large percentage of people with dementia, that is more difficult. The ethical question becomes, you may decide one thing when you're competent and detail how you want to be treated. But then, if you become mentally incompetent, you may change your mind. So what you're doing is making an advanced directive for the same body but not for the same mind. That makes it difficult ethically. It's unclear for whom the choice is made. The values are different when you're incompetent or demented.

Can you give an example?

Someone could say they don't want treatment, but once they become demented they may fight this prior advance directive.

What about different cultural perspectives on dying?

There is quite a significant number of ethnic minorities who really believe that truth-telling is bad for their health. They don't want to know they're dying. How do you deal with that? This affects indigenous Canadians, as well as some Asian communities. It's very problematic. Should they just adjust to rational, western, autonomy-based rule? Or should you respect their values?

Do most Canadians have advance directives?

Seventy per cent of Canadians have no advance directives. Once you start thinking through these issues, it is very difficult because so many different things can happen to you. Nearly half of all Canadians have not appointed someone who will make decisions on their behalf. And, your legal guardian might not share your values, so you might want to choose someone else who shares your values and will execute your decisions. As well, some health care professionals ignore advanced directives, they think that, in their opinion, a course of treatment should be followed [even if you don't]

How do Canadians feel about euthanasia?

In 2009, 70 per cent of Canadians supported legalization of euthanasia. Quebec has always been above the rest of the country, at 87 per cent, and in the West, the number drops to 66 per cent. This is significant. Consistently over 20 years people have said they want to make these choices.

What does the medical community say?

General Practitioners are consistently against decriminalization [of assisted suicide] But in 1998, 77 per cent of nurses in Canada were in favour of assisted suicide. Also, a 2009 survey of Quebec specialists, who are closer to dying patients, found 75 per cent were in favour of decriminalizing assisted dying. Another survey, done in 2007, found 62 per cent of terminally ill patients were in favour of assisted dying.

Why do people want to die?

Often when people talk about end-of-life decision making, the assumption is it's about pain. But it's not. The concern is more about losing control over their lives, the quality of their lives. People need to keep this in mind. For example, there are depressed people with jobs and lives who have undergone treatment but still don't want to live. Yet people are completely opposed to assisted dying in those circumstances.

What happens when there are conflicts between doctors and the relatives of a patient about their care?

In these circumstances, where there is a conflict between the attending doctor and parents or legal guardians of the patient, and the patient is incompetent, the conflict is settled by the health care consent board. This is a brilliant solution.

What about people in persistent vegetative states?

Should health care professionals be permitted to withdraw care from people in persistent vegetative states? During the first two years, they have a fair shot of coming out of a coma, but then the likelihood goes down really rapidly. They are lying in hospital beds and you can keep them alive forever. To the best of what we know, they do not suffer. This is why in some places when you say treatment is withdrawn, it really means they are no longer fed. Doctors believe that after 10 years, there is no way they will come back. It becomes a resource issues and it is very stressful for the family.

What about terminal sedation?

This has become a big topic; lawyers are looking at it, and so are ethicists. When someone sedates a patient, they cannot request food. So you can give an advanced directive saying "don't provide me with nutrition and sedate me for pain." This is an end-of-life choice. You refuse intake of nutrition and you're sedated so you don't suffer. The law in this country isn't clear on this.

What about other examples where the law is unclear?

It is legal in Canada to provide a patient with symptom relief or palliative care that is life-shortening. They have split a hair here, which is bizarre. The logic here is that the intention matters. Your intention as a doctor is you want to prevent the patient from suffering but you don't want to shorten their life. An example of this would be giving someone a lot of morphine or painkillers [which could hasten their death]

What about the slippery slope argument?

This is crucial to this debate, but it turns out not to be true with assisted dying. This argument was used in the Sue Rodriguez case [who lost her case to have the right to assisted suicide when the Supreme Court ruled against her] They were concerned at the time because the evidence was far from established, that you would you end up with involuntary euthanasia, especially with resource constraints.

I was concerned about this. But it turns out not to be true. Today, we know what has happened in all those places where assisted dying is legal: Montana, Oregon, Washington, Belgium, Switzerland, the Netherlands, Luxembourg. You can see, after decriminalization, you have a spike in people requesting and using assisted dying. But then year after year the numbers go down. The reason I believe is that people once they know that if all else fails this is an option, most people won't make that call. The stress is gone so they die of natural causes.

What about the issue of abuse?

Look at the Netherlands, there is evidence abuse is taking place. People are getting killed who haven't requested it. However that doesn't establish a slippery slope. There were 550 cases where people haven't asked to die in a year but they did. But it turns out that the people didn't sign the forms but made their views known to doctors. As well, in countries where assisted dying has not been decriminalized, involuntary euthanasia does also take place. So you need to show more that that there is involuntary euthanasia taking place to build an argument against decriminalization of assisted dying.

Any other concerns about assisted suicide?

I have trouble with the issue of incompetent people being denied access to assisted dying even though their quality of life may no longer be acceptable. I have no answer to the dilemma. People don't feel comfortable with incompetent people with a poor quality of life having the right to euthanasia. As well, what do you do with the increasing number of dementia patients? They might suffer a poor quality of life and in those circumstances if they were competent, they could request euthanasia. This is an issue Canadians will have to face.

What impact does the aging of the boomers have?

It goes in waves. In Quebec they have a big consultation under way on this issue because more than 80 per cent of the population supports assisted dying. They are ahead. You cannot escape the fact that the population is aging, resources are dwindling, and also there are a much larger number of people who no longer say, "Doctor knows best". Baby boomers are always rebelling. Now they are going towards the end of their lives and they're used to getting their way. They will put pressure. They have the sophistication, money and education to make a lot more hay of this.

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