On the need to restart the debate on assisted suicide - Macleans.ca

On the need to restart the debate on assisted suicide

Lee Carter and Hollis Johnson discuss death and chocolate in a Swiss clinic

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On death and chocolate in a Swiss clinic, and the need to restart the debate on assisted suicide

Photographs by Simon Hayter

On Jab. 15, 2010, Kathleen (Kay) Carter of North Vancouver had a date with death, an event she’d been seeking for months. She was 89 years old and nearly paralyzed by spinal stenosis. She made a last journey to Dignitas, a Swiss clinic devoted to assisted dying, accompanied by her daughter Lee Carter, Lee’s husband, Hollis Johnson, and other family. There, she drank a lethal drug, nibbled on a Swiss chocolate and drifted off to death. Her legacy is a renewed debate on the right to die. Carter and Johnson are now part of a challenge to the law prohibiting assisted suicide. It will be heard in the B.C. Supreme Court in November.

Q: Lee, tell me about Kay Carter, your mother.

LC: She was a fiercely independent person. She was well-read. She was interested in politics, social issues. She went to university and spent one year teaching elementary school in White Rock, B.C. And then she started having children, and had seven. There was no room for a job. She was married to my dad, Ron Carter, until he died in his mid-60s.

Q: In 2008, she was diagnosed with spinal stenosis. What did it mean to her quality of life?

LC: Basically, it’s to do with the [degenerating] spinal cord. You begin to lose your extremities, the ability to use your hands, your feet and eventually your legs. When she was diagnosed, it was hard to use her arms. She knew something was wrong. She would have been around 86 or 87.
HJ: I think the prognosis was particularly horrifying for her. The doctor said at some point, “You’ll be completely paralyzed, and just be on a gurney, and all of your needs will have to be attended to by others.” For her to lose that mobility was really terrifying.

Q: At what point did she decide she wanted to end her life?

LC: She woke up in the middle of the night [in July 2009] and said, “I’ve got it. I know what I want to do. I want to go overseas. Over there they can allow me to die with dignity.”

Q: So she had researched this?

LC: She’d been a member of the Hemlock Society when we were young. She approached me after she got this idea. I wasn’t surprised. She asked if I would help her do it, because she was totally unable. By the end she couldn’t even hold a telephone. Of course I said yes.
HJ: Her words were, “I don’t want to die inch by inch.”

Q: Was she aware that assisting suicide is illegal, and of the risk for those who helped her?

LC: You don’t really know what you’re getting into at the beginning. As things started to unfold, someone said to us,“Do you realize the implications of this, that you’re aiding and abetting?”
HJ: She was cognizant of the law. The night before we went to the clinic in Zurich for her good death, she actually wrote a letter to friends, it was a form letter and basically said, “I did this of my own volition and free will,” so we wouldn’t be implicated in this.

Q: Was there unanimous agreement amongst the seven children?

LC: She told everybody herself in that first week to 10 days after she had made the decision. Then we met over at my sister’s house. One brother came over from Vancouver Island and the other brother, who’s down east, was on the telephone. I told them what I had learned, that we could go through Dignitas. It would be fairly costly. [Dignitas’s fee was about $12,000, and total expenses were $33,000.] One of the things I needed [for Dignitas] was a letter of support from whomever was willing to sign it. All seven of us signed the letter of support. Having said that, not everybody agreed with what she was doing, for different reasons. Two of them offered suggestions: “What if we got you a spot overlooking the ocean?” She loved the ocean. “What if we got you 24-hour care? Would you be happy with that?” She said, “Give me time to think about it.” She got back and said, “No, I don’t want to live like this anymore.”

Q: Were you worried about the law against aiding suicide?

HJ: Everyone in our family knew about the law, and about the possibility that we could be arrested. But I don’t think we were afraid. It just seemed so right for us. It was fulfilling her wish. But now you’ve got a dirty secret, and you’ve got a number of tasks to accomplish and you can’t be forthright with people. For Kay not to be able to say goodbye to the residents [of her care home] when we were [supposedly] “taking her to Ontario to visit her sister”—that was really hard for her.

Q: Describe what Dignitas is like.

HJ: It’s just like a really comfortable apartment. The [Dignitas] people there, it was Horst and Erika for us, they were just incredible.

Q: Take me through the process.

HJ: There were two meetings with a physician. It’s always the same questions, always to make sure that this is a decision that you want, that you’re not going to equivocate. There was never a moment of equivocation on Kay’s part. Right up to the moment of getting to the clinic in the cab, she was still talking about local politics and asking the cab driver questions about Swiss culture.
LC: We signed all the forms and Erika asked [Kay] again, “Are you ready? Here’s a sedative, to settle your stomach.” We talked about things, we had a conversation around this table. After 30 minutes, we moved over to the couch and we all sat with our arms around her. Erika knelt down and said, “Kay, when I give you this medicine you will die. Do you realize you will die?” Mom said, “Yes, I do.” She drank the drink [sodium pentobarbital] with a straw. I passed out a really nice chocolate that I bought in Zurich and then she started to fall asleep. She started to snore and we stopped talking. Erika said, “She can still hear you.” So we talked about mom and dad and our lives together for another 10 minutes. Horst came over and felt her pulse and said, “She’s gone.” We sat for another five minutes. The medical people came in and took her. We went over to the table and they said, “Would you like a cognac?”

Q: No weeping or lamentation?

LC: No. It was such a positive experience. Supportive. When we got in the taxi cab to go back to Zurich, we were up here [euphoric]. I thought I’d be devastated. I thought I’d be weeping. I just couldn’t imagine it would be anything else but.

Q: Why did you decide to go public?

LC: Mom went public with this, with the letter she had sent to 120 of her friends [after her death].
HJ: In keeping with Kay and her life, she would have wanted it that way. That’s why we’re here today, to carry on her legacy.

Q: Has it drawn public comment and curiosity as people contemplate their own final days?

LC: A lot of stories came out. People had horrific deaths. Both patients and their loved ones had wanted to do it differently but didn’t have that choice.

Q: You’ve joined a B.C. Civil Liberties Association lawsuit that will contest the law prohibiting assisted suicide later this year. Why?

LC: We’re just carrying on her wish to die with dignity. Both of us believe we should be allowed to do this in our own country.

Q: Can it be done in Canada without it being abused by people preying on the ill and elderly?

LC: There are so many safeguards that can be put up. I don’t think it should be a concern, if Switzerland was any indication of the hoops that needed to be jumped through.
HJ: We’ve been asked this a number of times, the idea of a slippery slope, and what measures we can use to prevent this. If I understand the legal team’s position on this, they’re talking about somebody who is mentally competent, has a terminal illness and this is done in consultation with a physician. I think those parameters are fairly vigorous.

Q: What has changed since the Supreme Court of Canada rejected Sue Rodriguez’s quest for doctor-assisted suicide when she was dying of ALS 18 years ago?

HJ: There is survey data out there to suggest that public attitudes have shifted. I also believe that this is really a seminal time in Canadian history to talk about this because of a shift in social demographics. We’re becoming an aging society. And maybe even the composition of the Supreme Court. [Beverley] McLachlin wrote the dissent [in the court’s 5-4 ruling denying Rodriguez’s bid for assisted suicide]. She’s now the chief justice; that may be something to consider.
I expect that politicians wouldn’t touch this issue with a barge pole. In that sense, I’m thankful for the courts. And thankful for this opportunity. Otherwise, I don’t think it would be part of public discourse, and that would be tragic.

Q: Lee, looking back on your mother’s death, do you have any doubts you did the right thing?

LC: It was definitely the right thing to do. There was never any doubt. No.