Peaceful dying vs Doctor Knows Best

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Barbara Coombs Lee, the sharp and articulate president of Compassion & Choices, spoke to the issue of death with dignity on PBS NewsHour tonight, with opposing views presented by Ira Byock, noted physician, author and advocate for palliative care. Neither really won; the time was too short and the issue is too complex. The Death With Dignity movement though, is not going away, and we the people will only win when the movement wins.

Lee spent 25 years as a nurse and physician’s assistant before becoming an attorney and devoting her life to personal choice and autonomy at life’s end. She believes a terminally ill, mentally competent adult should have the right to end his or her life when and how he or she chooses. Byock, chief medical officer of the Providence Institute for Human Caring, believes that if doctors were properly trained in pain management and end-of-life care – which he readily admits is far from the case – no one would ever want, or choose, to hasten one’s end. Lee appreciates the grace with which Brittany Maynard is facing her own very premature death; Byock says the active, well-educated 29-year-old is “being exploited” by Compassion and Choices.

A few caveats:

Barbara Coombs Lee is a good friend whom I admire and respect. I have worked with Compassion & Choices for well over a decade as a volunteer, Northern CA member and board chair, and now member of the Leadership Council. I strongly support physician aid-in-dying and individual autonomy.

“Hospice and palliative care,” Lee said on the NewsHour segment, “are the gold standard” for end-of-life care. But no amount of hospice care, or palliative care, can alter “the relentless, dehumanizing, unending” progression of a disease such as Maynard has and many of us will also face. For many of us, as for Maynard, there will be loss of every bodily function, one by one, quite likely accompanied by excruciating pain and possibly things like the seizures Maynard would like to minimize for her own sake as well as the sake of her loved ones who would be forced to watch.Stethoscope

Perhaps doctors will eventually all be adequately trained in pain management and palliative care. But even then – and “then” is a very long way off – must the doctor always know best? Why can’t I, the patient, the person facing my own dying, be the one in control?

Byock is dismissive of the pain involved with watching a loved one suffer agonies of prolonged dying. Maynard’s inevitably increasing seizures, for example, would be helped by palliative care, he suggested, so she wouldn’t suffer terribly. If I chose – as Maynard is choosing – to have my loved ones remember me as a woman at peace while holding their hands rather than a disintegrating person gripped with terrible spasms – why is that not an honorable choice?

Byock – who in this NewsHour fan’s humble opinion got the better time and treatment – slipped in words like “suicide” and “slippery slope” and “euthanasia,” and phrases like “euthanized in the Netherlands” too far along in the program for Lee to answer in the brief time given her. Byock ignores the fact that no one choosing to hasten death under the existing laws (four states now have the law, two others allow aid-in-dying) is committing suicide; they are being killed by their disease. No one has been, or will be, “euthanized.” The United States is not the Netherlands. He also ignores the fact that in the long years of Oregon’s successful law – it was first enacted in 1997 – there has been not one report of abuse. Not one.

There is no slippery slope. There is only compassion. Self-determination. Autonomy. Dignity. Grace. Peace. Why should they not be legal?

I respect the medical and literary achievements of Ira Byock. But I’m sorry: the doctor does not always know best.

End-of-life compassion slowly winning

If you think you might die some day, and you’d like to do it with as much dignity and as little pain as possible, things are looking up. Which is encouraging to me, a believer in end-of-life and reproductive rights both — and progress in one out of two causes is something to cheer about.

credit acpinternist.org
Credit acpinternist.org

The outlook for a compassionate end to this life in the U.S. continues to brighten. In a recent New York Times article summing up advances that are being made in multiple states,reporter Erik Eckholm quotes my good friend Barbara Coombs Lee, President of Compassion and Choices: “There is a quiet, constant demand all over the country for a right to die on one’s own terms, and that demand is likely to grow as the baby boomers age.”

Lee, a baby boomer herself, is in a position to know. She has been at the forefront of the death with dignity movement since it was in its infancy. We first met when I was researching Dying Unafraid (Synergistic Press, 1999) and she was head of Compassion In Dying, headquartered in Seattle. That group had formed, I learned during a weekend spent with leaders and volunteers in the late 1990s, “because we got tired of reading headlines about people with AIDS jumping off of highway overpasses. And we thought there had to be a better way to die.” Compassion In Dying later merged with End-of-Life Choices, which had itself grown out of the somewhat more in-your-face Hemlock Society, to become Compassion and Choices. (And I am proud to have been a part of C&C since its inception as a volunteer, former local board chair, current leadership council member and general cheerleader.)

In those early days, all was not optimism. While Oregon was proving that a physician-aid-in-dying law could work, efforts elsewhere were failing with heartbreaking irregularity. The one most painful to me culminated in the defeat, in 2006, of a bill which would have legalized compassionate dying — in other words, with the aid of one’s physician if one so chose — in California. Assembly members Patty Berg and Lloyd Levine introduced the legislation, and polls showed overwhelming support among Californians, including a majority of California physicians. Victory seemed all but certain, despite a vigorous and expensive campaign against the bill by the Catholic Church (not most Catholics, just Catholic officialdom) and the California Medical Association (of which a small percentage of CA doctors are members.) At the judiciary committee hearing chaired by then CA Senator Joe Dunn  — who had loudly proclaimed his support —  Dunn suddenly had a change of heart. Something about a conversation with his priest, he said in a rambling commentary. Dunn then cast the deciding vote against the bill and it died an unnatural death in committee. A few weeks later Dunn was termed out of the California legislature and took a job — surprise, surprise — as CEO of the California Medical Association. It was not my personal most encouraging experience with the democratic process.

Now, however, sanity is prevailing. The option of choosing a compassionate death is legal in Washington, Vermont, Montana and New Mexico and the cause is gaining in other states. As Steve Heilig, another highly esteemed friend who is co-editor of the Cambridge Quarterly of Healthcare Ethics, points out in a current letter to the New York Times, “Progress is possible if carefully and ethically pursued.”

If only there could be a careful, ethical pursuit of progress — instead of the ongoing, reckless, politically and religiously-driven backward march we’re seeing — for reproductive rights.

Montana court affirms aid in dying

Montana has become the third U.S. state to give terminally ill adults the right to choose aid in dying. The decision, which came from the State Supreme Court on New Year’s Eve, 2009, was handed down by the highest body for state issues and thus cannot be appealed. The other two states honoring a patient’s wish to choose aid in dying are Oregon, which has successfully maintained its Death with Dignity legislation for more than a decade, and Washington, which passed a similar law last year.

The Montana ruling came too late for one plaintiff.

Roberta King, of Missoula, the daughter of plaintiff Bob Baxter, said, “My father died without the peace and dignity he so dearly wanted for himself and others. He feared when he filed this lawsuit that he would not live long enough to benefit from it. I’m sure he would be deeply gratified that other terminally ill Montanans will have the choice and comfort that aid in dying affords them.”

The Montana case was backed by Compassion and Choices, with C&C Legal Director Kathryn Tucker serving as co-counsel to the plaintiffs/respondents. (Full disclosure: I serve on the board of Compassion and Choices’ Northern California chapter.) The decision gave Tucker a major boost for her New Year’s celebrations. She was quoted on New Year’s Day as saying,

Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice. This is the first state high court to find protection of this choice, and makes clear that in Montana, patients are able to make this choice and physicians can provide this care without risking sanction.”

Others, including medical professionals and critically ill patients who invested long hours in seeking the new ruling, were equally gratified.

Dr. Stephen Speckart, a Missoula cancer specialist and a plaintiff in the lawsuit, said, “This decision affirms that a terminal patient’s fundamental right to self-determination will guide end-of-life health decisions. I regularly treat patients dying from cancer, and many of these deaths are slow and painful. Terminal patients will no longer be forced to choose between unrelenting pain and an alert mental state as they approach the end of their lives from terminal diseases. The comfort this brings to their last days can have an immeasurable benefit.”

Missoula attorney Mark Connell, who argued the case to the Supreme Court on behalf of the plaintiff physicians and patients, described the decision as “a victory for individual rights over government control.” Connell added: “The Montana Supreme Court has now recognized that, where intensely personal and private choices regarding end-of-life care are involved, Montana law entrusts those decisions to the individuals whose lives are at stake, not the government. I know Bob Baxter would be very pleased that the court has now reaffirmed that these choices should be left to the terminally ill people in our state.”

Steve Johnson, 71, of Helena, who is terminally ill with brain cancer, hailed the decision and asked the Montana medical profession to provide patients like himself with aid in dying. “I approach the end of my life with a clear mind, and I would like to work with my doctor to minimize the pain and maximize the peacefulness in my dying. I would like my physician to be able to respect and honor my choice to die with dignity. Adults like myself should have the option, if terminally ill, to request physician aid in dying. It’s only compassionate to minimize unnecessary suffering at the end of life, and to let me make the choice about how much suffering to endure, based on my own values and beliefs,” said Johnson.

The movement had widespread support across the state.

Montana State Sen. Christine Kaufmann, Rep. Dick Barrett and twenty-nine other state legislators; the American Medical Women’s Association, the American Medical Students Association, and a coalition of Montana clinicians; the American College of Legal Medicine; the American Civil Liberties Union of Montana; the Montana Human Rights Network; the Northwest Women’s Law Center; terminal patients’ surviving family members; Montana religious leaders; and Montana’s leading constitutional law experts had urged the Court to find in favor of the terminal patient’s right to receive aid in dying from their physicians.

According to Compassion and Choices president Barbara Coombs Lee, the battle for “the right to choose a humane and compassionate death will continue. (We) encourage terminally ill patients to call 800 247-7421 if they would like information about aid in dying, or suggestions on how to open a dialogue with their physician and loved ones.”