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?