During his guest lecture for the Maguire Center for Ethics and Public Responsibility on February 13, Dr. Timothy E. Quill spoke about his journey as a physician, Supreme Court plaintiff and American. It’s a journey, he said, that ends in the same place for all of us –– with the people we love.
Dr. Timothy E. Quill
Showing a photograph of his family at the start of his talk, “Medical and Legal Challenges to End-of-Life Care,” he said, “If you think about what kind of choices we allow people, it all comes down to this: What kind of care do we want to be able to provide to family members, patients and the people in our community whom we really care about?”
Quill, the director of the Center for Ethics, Humanities and Palliative Care at the University of Rochester, traced the cultural and legal shifts in America on end-of-life medical care, beginning in 1969 with Elisabeth Kubler-Ross’ On Death and Dying. “The book was extraordinary because medical technology was in its ascendancy and no one was really talking about the fact that people were dying,” said Quill, who is also professor of medicine, psychiatry and medical humanities at Rochester. “Kubler-Ross became the mother of the hospice movement.”
He also discussed groundbreaking right-to-die cases, including those of Karen Ann Quinlan, Elizabeth Bouvia and Terri Schiavo, and stressed the importance of advance initiatives to spare families these decisions. In the case of Quinlan, whose parents successfully fought to remove her ventilator, the New Jersey Supreme Court came up with the best definition of “substitute judgment,” he said: “If Karen Ann could wake up for 15 minutes and understand her circumstances, what would she want to do?”
Quill said his own family was forced to practice substitute judgment when his adult brother was struck by a car while bike riding and left severely brain-damaged. “Stopping life-support was hard, but knowing what my brother wanted made it doable,” he said. “I worry most about the people who lose the capacity to speak for themselves; they’re so vulnerable … and trying to keep their voice solidly in our minds at all times is key.”
Why did you become involved in hospice and palliative care?
Being PreparedLearn more about advance directives, living wills and end-of-life care from The National Institutes of Health website.
I knew that this notion of technology until the bitter end didn’t make any sense. Hospice was a real alternative to that. We could enhance the last part of people’s lives. We could try to keep people at home rather than a hospital. A lot of it wasn’t deep, spiritual work, but it was profound: Families would come together, love each other, play cards, have human contact instead of medical contact.
There is a technical part to it – you have to develop an expertise in treating pain and shortness of breath, and you have to take it very seriously. If people are going to die, we ought to learn how to help them do it as well as we can, as well as they can, keeping their values in mind throughout the process.
A case with one of your patients led to a national debate in 1991. What happened?
A longtime patient, Diane, developed acute leukemia, with a 20 percent chance of long-term survival with aggressive treatment. I recommended treatment; she told me, “I don’t think so.” …
I was taken aback; she was a relatively healthy young person … but I eventually accepted it, and we referred her to hospice care.
But Diane said: “I want a choice; I want some medication if it gets hard at the end.” We had a number of family meetings, and she convinced me she’d worry about the end. I prescribed her barbiturates with the promise that she would meet with me before she took them to be sure we turned every stone.
She had a wonderful three months on hospice. …
I got the bright idea I was going to write about this case with Diane. I thought [Jack] Kevorkian was too easy to dismiss, … and I thought this case would be something people would struggle with. I wrote it up in narrative form. sent it to the New England Journal of Medicine and got a call from (the editor), who asked me if I knew what I was getting into. …
I was told I would never be successfully prosecuted, but I went through a serious process on the way to that.
What led to Vacco v. Quill, the Supreme Court case that challenged New York’s ban on physician-assisted suicide in 1997?
In the 1990s, there were initiatives to try to legalize physician-assisted suicide – in Washington state, California and Oregon, where it passed.
At the time, a number of people decided we would try to challenge the laws preventing assisted suicide; we thought patients should have the right to request and doctors the right to respond. We do allow some patients to decide –– patients on ventilators –– but patients suffering more who aren’t on ventilators don’t have the choice.
This went all the way to the Supreme Court, where the vote was 9-0 against the right to assisted suicide. … But there was language in the decision about the right to a dignified death, a death that avoids pain and despair, that encouraged debate at the state level and opened the door to terminal sedation to relieve suffering. …
The middle ground has moved forward. Palliative care and hospice have moved forward. There’s increased acknowledgment of tough cases and a lot more conversation, evaluation and exploration of options.
Learn more about the Maguire Center for Ethics and Public Responsibility and upcoming events at smu.edu/ethics_center/
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