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.

Death with Dignity: How to crash a website

 

IMG_1580Among a long list of emails piling into my Inbox is one that says “Thanks to a particularly successful story on People.com the increased traffic has crashed our site. Please be patient as we yell and shake our fists at our web hosting company. We’ll be back up and running shortly.”

It’s from Compassion & Choices, an organization I’ve worked with for nearly two decades. Compassion & Choices is an excellent nonprofit, leader in the fight to make Death With Dignity — specifically, physician aid-in-dying for terminally ill, mentally competent adults — a right for all Americans.

This particular story is a People.com type of story: beautiful young woman dying of brain cancer, choosing to die with dignity and courage… and sadly having to move to Oregon to accomplish this. But similar stories, some with happy endings and some not, occur every day: men and women of all ages in the U.S. find themselves with terminal diagnoses and seek to control their final days and hours. It shouldn’t be that hard.

Though I’m no longer active in this capacity, for many years I served as a Compassion & Choices volunteer — trained C&C volunteers will help those who fit the criteria (terminally ill, mentally competent adults) understand their options. In California, which does not have a DWD law but hopefully will within the next few years, the best option is often to stop eating and drinking. Or sometimes just to stop taking the medications that are keeping you alive.  To be candid, some people also hoard life-ending medications and when their numbered days get to be very few — or their suffering becomes more intense than they feel worth the struggle — they stir those pills into applesauce and spend their final moments in peace, surrounded by loved ones and in the quiet of their own homes.

How in the world is this not a good idea? Why in the world is prolonging life to the bitter end, more often than not in a cold & sterile hospital room ever a better idea?

Brittany Maynard, the 29-year-old subject of the People.com story, is choosing to die on her own terms. Wouldn’t we all?

 

Being At One with Desmond Tutu

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It’s almost like being on the side of the angels, claiming kinship-by-association with Desmond Tutu. Ever since the retired Anglican bishop, South African social activist, Nobel laureate and all-around pretty saintly gentleman came out in favor of this writer’s cause, Death with Dignity, it’s been a cause for celebration. Bishop Tutu’s eloquent statement, published in The Guardian of July 12, was prompted by a bill currently under consideration by Britain’s House of Lords – which has now gone farther than many had expected and may indeed become the law of the land in the Mother Country.

Death with dignity – physician aid in dying, the legal right for a terminally ill person to hasten the process if she so chooses – has slowly been gaining in the U.S. The Oregon law has proven successful for well over a decade, and DWD is now legal also in New Mexico, Washington, Vermont and Montana (where it’s considered a private issue between patient and doctor.) Bills are currently underway in a handful of other states. And in California, the movement’s leading organization, Compassion and Choices (on whose Northern California leadership council this writer still serves) is mounting a multi-million dollar campaign to legalize death with dignity in that state. Past efforts in California, where polls show a large majority of citizens support DWD, have failed by very small margins. It’s interesting to note that opposition to end-of-life choice comes largely from the same religious and conservative groups that oppose women’s rights to reproductive choices; at least one out of two of this writer’s causes is gaining ground.

Support for Death With Dignity from across the ocean  is encouraging. And when it comes from Desmond Tutu it carries a particularly gratifying weight.

Bishop Tutu, acknowledging that he is himself closer to the end of life than its beginning, said in his statement, “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying.” That means, he explains, allowing death to come as naturally as possible and avoiding any machines that would artificially prolong life.

“Dying is part of life,” Tutu writes, “…And since dying is part of life, talking about it shouldn’t be taboo. People should die a decent death. For me that means having had the conversations with those I have crossed in life and being at peace.” He also advocates completing advance directives, something Compassion and Choices emphatically promotes. Forms are available on the website. Whatever your age or state of health, if you haven’t done these things yet, this very minute is a good time to start.

Bishop Tutu declares the dying days of his friend Nelson Mandela “an affront.” When the widely beloved South African leader was televised with political leaders Tutu points out that Mandela “was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to Madiba’s dignity.”

The good bishop is having none of that.

“I revere the sanctity of life,” he writes, “but not at any cost. I confirm I don’t want my life prolonged… I would probably incline towards the quality of life argument.”

The entire statement is well worth the time of every reader. Check it out – after you’ve completed your own advance directive.

Laboratories of the States: The good… and then, the very bad and ugly

This essay first appeared on Huffington Post

Will a few states rule the United States? Or fundamentally change it? And if so, who are the winners and losers? Depending on your point of view, this “laboratory-of-the-states” business is good news today… or not.

The metaphor dates to the dissenting opinion of Supreme Court Justice Louis Brandeis in a 1932 case, New State Ice Company v. Liebmann and is often used today to assert the success of one social program or another. The best most recent — and decidedly successful — laboratory-of-the-state demonstration is Oregon’s Death with Dignity law. This writer’s extraordinary attorney friend Kathryn Tucker published a paper in the 2008 Michigan Law Review, when she was Director of Legal Affairs for Compassion & Choices, titled “In the Laboratory of the States.” Tucker wrote, “Because Oregon’s Death with Dignity Act has proven both useful and harmless, this Article concludes that it is time for other states to follow Oregon’s lead and enact their own legislation to allow their citizens an alternative to what otherwise could be a prolonged and painful death from terminal illness.”

Tucker deserves much of the credit for expanding the Oregon law into the movement that now seems a clear national trend, along with Compassion & Choices (full disclosure: this writer has long been a C&C supporter, volunteer and local board member). Washington and Vermont have passed similar bills and Montana wisely concluded that it’s none of the state’s business what a doctor and patient decide to do, making physician aid in dying now legal in those states. A handful of other states have pending bills and still others are mounting strong movements. So Oregon’s laboratory of success is likely to be the nation’s overall policy in the foreseeable future, and we’re all better off for that. (Opposition has come from religious and political forces that hold onto a belief that God requires some sort of existential suffering be visited upon Her dying creatures.)

The laboratory-of-the-states pathway is both effective and well trodden, said San Jose State Professor/author Larry Gerston at a recent Commonwealth Club political panel event. The panel was looking at other current trends, but Gerston specifically cited the Oregon Death with Dignity model as an example of how it all works.

Now — what if Texas becomes a laboratory for the denial of reproductive rights?

In Texas, just for a rough overview, recent laws have passed requiring parental notification and now parental consent; requiring abortions to be performed in ambulatory surgical centers with hospital-grade operating rooms; requiring women who seek abortions to submit to ultrasounds and then wait 24 hours for the procedure. The list of harsh, medically unnecessary restrictions and requirements is long, and a clear violation of both ‘best medical practice’ and women’s rights.

It is worth noting who are the winners and losers in these state laboratories. In Oregon, the winners are we the people everywhere. Few of us would turn down the right to a humane and compassionate death, which is made a possible choice by death-with-dignity laws. Losers? No one. No one is compelled to choose a hastened death, anywhere, any time.

In Texas, however, the scorecard is seriously skewed. The winners are archconservatives that have learned that this is a good way to get votes. Winners also include those, men and women alike, whose religion teaches that life begins at conception and thus all abortion is wrong. This writer can appreciate those who hold such views, but it is not possible to uphold the rights of a fetus without denying the right of the woman in whose body it resides. Many of us come down on the side of already-alive women and on the doctrine of church/state separation.

And the losers in Texas: women. All women. Primarily they are women without money or resources, who are frequently disadvantaged and disproportionately women of color. These women are already turning to desperate measures to end unwanted pregnancies; increasingly they are turning up in emergency rooms with failed attempts to self-abort. To a lesser degree, but still worth considering, the losers include those — men, women, boys, girls — who need the other services provided by rapidly closing clinics: birth control, sex education, STD testing, breast cancer screening and many other critically important needs that will now go unmet.

It’s hard to contemplate the win-lose picture of this Texas laboratory. But if it indeed becomes a laboratory-of-the-states argument in upcoming Supreme Court cases, and elsewhere, the losers will be all of us. You and me. We the people.

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.”

Boomers & the high cost of dying

As health reform slogs along, a few critical pieces are already gone for good — or for now, at least. One of the saddest is coverage for end-of-life conversations; one of the saddest elements of our culture in general and healthcare mish-mash in particular is the tendency to treat death as a curable disease. Timothy Egan, in a recent blog for the New York Times, makes an eloquent case for injecting a little reality into all this.

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Kitzhaber, having seen the absurdities of the system — Medicare would pay hundreds of thousands for continuing treatments but not $18 an hour for an in-home caregiver to help her die as she chose — was among the thousands of us who were distressed to see the debate get sidetracked by misinformation and outright lies. He knows the truth: that changing the way we treat dying people is the only way real economies and compassionate reform will happen. He is not only a politician, currently running for a third term as governor of Oregon, the state that has shown us the way, but a physician. And he’s smack in the middle of the Baby Boomer generation. Egan cites the recent Newsweek cover article by Evan Thomas, “The Case for Killing Granny,” and its on-target line about this being the elephant in the room, “Everybody sees it, but nobody wants to talk about it.

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”

The Way We Die Now – Timothy Egan Blog – NYTimes.com.