Category: compassion and choices

compassion and choices/General interest
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Death with Dignity: How to crash a website

by Fran Johns

 

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Though I’m no longer active in this capacity, for many years I served as a Compassion & Choices volunteer — trained C&C volunteers will help those who fit the criteria (terminally ill,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?

 

compassion and choices/Death and Dying/End-of-Life/General interest
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Being At One with Desmond Tutu

by Fran Johns

credit acpinternist.org

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.

caregiving/compassion and choices/Death and Dying/General interest/Health/Medicine
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Wise Words from Doctor Turned Patient

by Fran Johns

Bob-baldric

Not every doctor gets an extended view of what his or her patients experience. But one who did – and has shared both the experience and its message(s) is a recently recovered friend and end-of-life issues colleague of this writer, Robert Liner, MD. Liner spent 20 years as an Ob/Gyn with clinical and teaching positions, principally at Mt. Zion Hospital in San Francisco, followed by 20 years in private practice of prenatal diagnosis and gynecologic ultrasound. Among his exhausting list of interests and endeavors are piano lessons, playwriting, poetry, working to publish an illustrated lullaby — and serving on the Leadership Council of Compassion & Choices of N.CA. (And occasional adventures into designing menswear, such as a reincarnation of the ancient ‘Baldric‘, modeled above, which Liner feels makes a lot more sense than the necktie.)

Not long ago, though, all of these – plus a simultaneous major house move and recent new marriage to longtime lady friend – were severely complicated by a bout with life-threatening illness.

“A year ago, on my sixty-ninth birthday,” Liner wrote in an article that recently ran in San Francisco Medicine, “I checked into Kaiser Hospital for work-up of a chronic cough, back pain, severe anemia and a low-grade fever. Believing that patients often overreact to symptoms and seek medical attention prematurely, I had let things go a bit far. I’d been easily fatigued and a bit short of breath, but when a couple of days prior to my hospital admission my wife saw me leaving food on my plate at a favorite restaurant, she insisted on taking me to the ER. I told her this would be an abuse of ER resources but, once there… watching two units of blood being transfused into me, I brilliantly arrived at (the same) conclusion: I was seriously ill.”

Liner covers the days of his hospitalization with openness and humor: “Generally, when getting medical care, I avoid mentioning that I’m a physician. Even experienced providers sometimes have steadier hands when not aware they’re administering to a physician. Or, for that matter, to a malpractice attorney.” (You can read the entire, illuminating piece in the current issue of San Francisco Medicine. It is a significant message to physicians, and an informative and reassuring message to anyone facing hospitalization.)

Liner emerged from more than six months of chemotherapy, radiation therapy and “a lot of drugs” with his B-cell lymphoma in complete remission and a low percentage chance of recurrence. But in addition to the firsthand lessons for physicians and patients about illness, he offers a powerful lesson for all of us about dying – since all of us, patient and doctor alike, do eventually die. Liner and his wife faced that possibility throughout a 36-hour period in which it seemed likely that his disease would, in fact, be terminal; they faced it with “a profound sadness.” But he explains:

“There was nothing irrational about that sadness. Patients who are genuinely terminally ill and who seek physician aid in controlling the time and circumstances of their deaths should not be thought of as irrational or pathologically depressed. If, unexpectedly, my lymphoma recurs, the prognosis would be ‘dismal.’ If that happens, I believe it should be within the scope of ethical, legal medical practice for my doctor to provide me with a lethal prescription – a key to the exit.

“Physician aid in dying is something distinct from suicide. The disease would be killing me. No compelling state interest here. No slippery slope. Only a decision to be made by me as a patient, along with my family and my doctor. As a physician and as a patient, I see this as a fundamental liberty interest and as sound, compassionate practice of the art of medicine. Of, course, where my death is concerned, I’d rather skip the whole thing.”

Wouldn’t we all.

 

 

Abortion/compassion and choices/courts/Death and Dying/End-of-Life/Health/Healthcare/Reproductive rights/seniors/Women
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Laboratories of the States: The good… and then, the very bad and ugly

by Fran Johns

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.

Abortion/California/compassion and choices/Death and Dying/Dying Unafraid/End-of-Life/General interest/Health/Law/Politics & Causes/Reproductive rights/seniors/Women
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End-of-life compassion slowly winning

by Fran Johns

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.

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