Sandra Martin’s new book, A Good Death, looks at right-to-die legislation around the world, and how views and laws on the fraught issue have evolved here in Canada. It’s being published just as the federal government tables legislation to allow physician-assisted death. Martin spoke with Maclean’s about her book and what might be included in the new law.
Q: You make the point that we have not been very good at confronting aging and death in our society. Why is that?
A: There was a time, long before you or I were born, where there was the Victorian deathbed scene. We all gathered around, it was Granny or whoever in the back bedroom, and we were all visiting and sitting around the bedside. So death was really part of living. Death is still part of living, but it’s been isolated, mostly into emergency wards or ICUs or hospitals, or long-term care homes. It’s not part of our home environment, and I think that’s why it’s become so remote to us, and it’s become frightening to us. We need to talk about death as part of life.
What are some of the most persistent or troubling misconceptions about the right to die?
There are some people who believe very firmly that until we have palliative care for everybody in this country, we shouldn’t even consider physician-assisted dying. What do we do about all the suffering people in the meantime? Palliative care is a wonderful thing, and it should be available widely. It’s about caring for the patient and dealing with symptoms—helping with breathing difficulties and so on. It’s not concerned with curing the patient tomorrow; it’s concerned with helping the patient today.
But we know that palliative care can’t work in every single instance. And for those people, you need to have another option. And frankly, I think doctors should be using all the options they have to help their patients.
Related: Maclean’s on the Hill: Parliament confronts doctor-assisted death
What are the particular difficulties around dementia and advance-care directives?
The Supreme Court was silent on the issue of advance directives when it ruled in the Carter challenge in February 2015. What the Carter decision said is you have to be adult, competent and in intractable suffering.
So the parliamentary committee took on one of those areas—dementia—and it said that if you have a diagnosis and you’re still competent and you make out a legally binding advance-care directive, saying at which point you no longer want to live, that that should be enforced. Now, the question of when a person with dementia or any other terrible illness will find it no longer acceptable to carry on living depends on the individual. I might want to say if I can no longer speak, if I no longer can recognize my family, if I can no longer take care of my own bodily functions—then it would be unacceptable for me to carry on living. So, that’s one of the things that the parliamentary committee recommended.
I don’t think that the Liberal government will introduce legislation saying that. I fear that they’re going to be more cautious than that.
What else do you anticipate we may see when they introduce that legislation, and how might it differ from the parliamentary committee recommendations?
I think that it’s going to also be cautious about mental illness. A lot of people have trouble understanding that all pain is not visible, that mental illness can be enduring and can be intractable, and there are some forms of depression that just go on and on, and no treatment seems to work. So for people like that, they may want to find a way out. This is not the same thing as having a fight with your boyfriend and wanting to do something drastic. This is another area where I think it’s very troubling, and I think the government may retreat from what the parliamentary committee recommended.
When you looked at other jurisdictions that already have laws in place, what were some of the best practices that stood out?
There are two main models. One is the European model, and that was the Netherlands. It’s free medicare, and there’s a very strong system of family doctors who go and visit patients in their homes. There’s also a long, long tradition of tolerance in that country—for new ideas, for contrary ideas, just for getting along.
Doctors were helping some patients die, and they were admitting it. Some of them were being prosecuted, but they weren’t being found guilty because they were arguing a defence of necessity: yes, I helped somebody die, but if I hadn’t, that person was going to suffer terribly.
The medical profession didn’t turn its back; it came up with a series of due care criteria. There were 30 years of this before they actually introduced legislation. It involved usually euthanasia, when the doctor actually gives an injection to the patient. The other main method is when a lethal potion is given to the patient, for the patient to consume by himself or herself. In the Netherlands, the doctor is present.
Now the American model—this is based in Oregon—is called physician-assisted suicide. A patient has to be terminally ill, within six months of dying. The doctor gives the prescription to the patient, the doctor then walks away—the doctor doesn’t have to be present at the death. So the patient takes that prescription, gets it filled and either consumes it or doesn’t consume it.
In other jurisdictions, did you come across anything that seemed like a cautionary tale or policies that played out in problematic ways?
The law in Belgium is based on the Netherlands law; there’s no real problem with the law. There is an issue with oversight in Belgium, in my view. Some of the doctors who are performing euthanasia are also the doctors who are on the regulatory panel, and I don’t think that should be the case. It shouldn’t be so many of the same people, because they’re judging themselves.
After your work on this book, what characteristics did you conclude make for “a good death”?
I think you have to accept that you are dying. I mean, there always will be people who will want to fight beyond what most people would consider reasonable. That’s their choice; it wouldn’t be my choice. I don’t intend to die with chemo coursing through my veins—to me, that is not the way to die. But I think people should have the choice. To me, it’s really important to talk about dying with your family, with your doctor, with your lawyer, with your politician, because this is about imagining your own death and imagining the suffering of others, and would you want to suffer?
There was a young woman named Brittany Maynard; she was a Californian, 29, recently married and diagnosed with a brain tumour. There was no access to physician-assisted dying in California, so she and her entire family moved to Oregon, and she then qualified to ask for physician-assisted dying. She went public—she told her story all over the place. She wanted to die peacefully, with her family around her, before she became blind and in terrible pain from this brain tumour. She didn’t want to die, but she was going to die, so this was her rational choice of how to deal with it.
After she died, her family helped in the campaign in California and eventually, the law was passed, but it wasn’t signed by the governor. The bill was sitting on his desk for a couple of weeks, and finally after agonizing [over it], Jerry Brown—who is a Catholic—wrote a letter to the legislators. He said how troubled he was, and he said, “I tried to imagine my own death, and I knew if I were suffering, I would want these options. How could I deny them to others?” And that is what it’s about. It’s about choice, and about not reducing the choices for other people that you might want for yourself.