Death and dying dialogues
The Spokesman-Review editorial board recently talked with three individuals who are working for the passage of Initiative 1000, the so-called Washington Death with Dignity Act. Terri Sloyer is a Spokane civil rights attorney. Jan Polek is a longtime Spokane activist who now focuses on issues affecting older citizens. Robb Miller is executive director of Compassion & Choices of Washington.
Q: Explain the wording choice your group prefers.
Miller: We prefer “death with dignity,” but we know it’s a politicized term. The term we think most appropriate is “aid in dying.” We believe the term is value-neutral. It doesn’t use our language or our opponents’ language, which is “assisted suicide,” which we believe is a biased term.
Q: Explain why you decided to get active in this issue.
Sloyer: My civil rights work is about protecting the humanity of people, which includes choices about bodily autonomy and how their life will come to an end.
Polek: Three things converged. A dear friend of mine had hepatitis C and she was in great pain, and she begged me to get her something so she could end her life. She had several weeks of pain and unhappiness, and she was so ready. The second thing: I had a near-death experience. My daughter resuscitated me just as the paramedics arrived. It was a very wonderful experience, like a dream. That started me thinking about my own end. I realized I wanted power. Aging is full of indignities. One thing you can do is say, “This is my decision. This is what I want.” It’s giving elderly people power and dignity. And the third thing is Booth Gardner said, “Would you do this?”
Miller: In 1994, my long-term partner was diagnosed with AIDS. He died after a very painful, undignified dying process. He had hospice care. Hospice is so often presented as the solution for the dying process and for most people, it is. But even the best palliative care cannot always manage a patient’s suffering at the end of life. And I don’t just mean physical suffering. My partner experienced existential suffering – the loss of all quality of life. It seemed very cruel to him, and to me, that he should be deprived of this one last source of comfort.
Q: Why should the state have a role in this?
Miller: Without legalizing aid in dying, it’s practiced covertly. There are many safeguards built into the law.
Polek: I worry about people who might want to do this and help someone. Not only would they be criminally liable, but they might do great damage to the person. So we want it to be in the medical arena.
Q: The people (we talked with) who are opposing the initiative – two of them use wheelchairs and the other has Parkinson’s and cancer. Their concern is the slippery slope.
Miller: In 10 years of the Oregon law, not a single person who was disabled before becoming terminally ill has used the law.
Q: We are all going to run into circumstances in which we endure pain, whether it’s physical or existential pain, and we’re capable of saying, “The picture of my life is not bright. I don’t want to endure that.” Why does one have to be terminally ill to avail themselves of this?
Miller: Here at Compassion & Choices, we have people who call us who have MS or other diseases like Parkinson’s who are not terminally ill. There are limits of what we can do for those people. A terminal diagnosis is a real marker. We use the same criteria for this law that we use at hospice – six months or less. We don’t let everybody access hospice just because they’re tired of living. We can’t just let a teenager who is broken-hearted end his or her life because they are depressed.
Q: But we’re talking about a person who is clear-headed and intelligent and looks at the prospects and exercises their own autonomy. If the arguments used to defend this law are valid, then they would apply to that person.
Miller: You must be terminally ill or the slippery slope argument becomes tenable. When you say we’ll let people with incurable illness use this, where do you draw the line? Terminal illnesses draw the line.
Q: What is working best about the Oregon law?
Miller: Everyone in Oregon has the peace of mind of knowing that if things become unbearable when they were close to death they would have this option of aid in dying. Even though so very few people have used it. But for them, it was a source of comfort. People who are very anxious about dying, when they have that option, have a better quality of life at the end.
Q: What about the person who is physically unable to self-administer. Does this discriminate against them?
Miller: There is no lethal injection. The medication is not provided by an IV. It has to be a prescription the patient can take. If he or she can’t self-administer, they’re not eligible and that’s part of the protection. It’s not euthanasia. It’s aid in dying.
Q: One concern is the family notification. The patient doesn’t have to notify. Does this eliminate the role of the family?
Polek: We make our living-will decisions and power-of-attorney decisions without consulting our children. We may choose to tell them, but it’s still a process the individual does. We don’t want to put the state in the position of saying the family must come together on this. That’s very intrusive. That’s the whole point of the dignity and the power.
Sloyer: That seems very paternalistic to me to require this of a woman, for example, someone like Jan, who is competent and articulate and has been self-actualized her entire life.
Q: If a person who is a candidate for this law says I can tough it out, but I know in the next six months the $300,000 I’ve got tucked away in savings is going to go right down the drain. I’d much rather have that be available to my grandkids and my kids, so I think it would be wiser to say let’s do it now. Is that legitimate?
Sloyer: So long as they meet the requirements, the reasons they decide to do it are up to the individual. You don’t have to articulate your intention so long as you meet the criteria.
Miller: In practice what happens in Oregon the people are using it at the very end of life. By the time they use it, they are not getting extensive treatments. We would never know for sure every component that went into making the decision.
Q: Is there something you would like to add?
Polek: I feel very privileged to be involved in this. I’m glad we have Oregon who has gone before us on this path. It’s a scary path for many people. I could be a candidate for this with the things that are wrong with me. I’m glad I have the opportunity to examine it. I’ve talked to several doctors – none will come forward to support it publicly – but they have said to me, “This happens.” It happens quietly. The morphine drip is increased. People get relief. They get a chance to go out. Is there a need? Yes. Does it work? Oregon says it works.
Miller: This is a good law. It allows patients in the final stages of a terminal illness to end their life with dignity, to end on their own terms. It gives them peace of mind to know they’re in control of their final days.
Sloyer: I respect the opponents’ decision not to want to participate. But that is not a basis for not allowing other people to make a choice. It’s a law that’s optional. If it opposes your moral values, if it isn’t something you want to engage in, you are never forced. I respect the (opponents). I would ask the same respect be extended to this campaign.