A friend has been kind enough to transcribe a portion of the video of the March 28 South Burlington community education event sponsored by the Madison-Deane Initiative of the Visiting Nurse Association of Chittenden and Grand Isle Counties. The entire video is available at http://stream.cctv.org/cctv/jwp5/vna/madison-deane.html. The speaker was Dr. Diane Meier MD, winner of a McArthur (genius) Fellowship and Director of the Center to Advance Palliative Care (CAPC), Director of the Lilian and Benjamin Hertzberg Palliative Care Institute; Professor of Geriatrics and Internal Medicine in the Brookdale Department of Geriatrics and Palliative Medicine; and Catherine Gaisman Professor of Medical Ethics in the Department of Medicine at Mount Sinai School of Medicine in New York City. In italics below are a question about assisted suicide and Dr. Meier’s answer to it. The emphasis (boldface) is ours.
Questioner: If we had a fully implemented palliative care model in this country, working as we think it should be working. . .Is there a need for policies . . . such as “Death with Dignity”? Is there a correlation or relationship between those two, – some people would say, you don’t need Death with Dignity if you have a good palliative care model. I was curious as to your thoughts on that.
Dr. Diane Meier: I, as a young person, was strongly in favor of legalization of assisted suicide. I think I was somewhat naïve at the time, you know, kind of doctrinaire about my commitment to patient self-determination and patient autonomy. And as I got a bit older and had more experience taking care of patients and families, and realizing that autonomy was not really relevant to the human condition – We are all parts of families and parts of communities and critically dependent on one another in ways that notions of self-determination and autonomy pretend don’t exist –
Bob Butler, whose photo I showed you, said to me when I was writing stuff in favor of assisted suicide that there’s an old Chinese proverb that: “Suicide reverberates for seven generations.” The harm to families when someone decides to leave, rather than having to leave, is substantial and has been understudied.
What’s also very interesting is that the movement to legalize assisted suicide is overwhelmingly driven by the ‘worried well’ – by people who are so terrified of the loss of control that illness and death, dying and death bring – that there’s a sort of reaction formation: “Damn it, I’m gonna take control back” over something that’s so terrifying. But, for millions of years, humans have lived and died in their families. And it’s not that scary. It’s pretty natural, like birth.
And when you look at – “What do sick people want?” – Sick people almost always want to continue to live. And it took my experience with sick people who, if it were me, I’d say, “I want assisted suicide,” and they still want to live. Overwhelmingly, people want to live, in spite of conditions that the “worried well” would think are intolerable.
I don’t know how many of you saw the Bill Moyer’s series “On Our Own Terms: Dying in America”? I don’t know if you remember that patient with Lou Gehrig’s disease whose wife was taking care of him and Moyers went back repeatedly, and the first time he said, “Well, if I’m in a wheelchair all the time, that’s it, I’m outta here.” So, Moyers goes back six months later, he’s fulltime in a wheelchair, he can’t do anything for himself, and, “It’s okay.” Then he says, “Well, if I have to get to a point where my wife has to change me and bathe me and I can’t take care of my own business, I’m outta here.” He goes back six months later, that’s exactly what he needs and life is still worth living. Because people adjust, people are remarkably resilient. And life is precious, and your vision of what’s worth tolerating changes.
And legalization of physician assisted suicide in a society like ours, which is entirely driven by overwhelmed, overextended doctors chasing the dollar, is pretty scary – because the patients who might opt for this are the ones who really need thoughtful, extended conversations about what is motivating you to want to die at this point, and the differential diagnosis is long. And I can promise you that the overwhelming majority of doctors have neither the training nor the time to engage in that kind of careful discussion with seriously ill patients.
And I do believe that real access to palliative care that is timely, that is high quality, would essentially eliminate the need for that and the fear that drives people to vote for these ballot measures.