Category: End-of-Life

Abortion/compassion and choices/Death and Dying/End-of-Life/friendships/Holidays/Lifestyle/Religion/Reproductive rights/Women
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Saying Goodbye, and Hello to 2015

by Fran Johns

sunrise

My friend M has died, just shy of the old year’s end and significantly decreasing the joy of the new. But her dying was full of life lessons about saying goodbye, being grateful and trying to ring in a better planet for the days ahead. And thus she leaves a gracious greeting for 2015.

M was a believer in good causes, and she put her substantial time and energies to work for them all. We became friends over our mutual love of writing but we bonded over our mutual commitment to end-of-life choice. Once you concede that you won’t live forever, a reality most prefer to ignore, it is possible to live both gently and joyfully even in tough times. Both of us spent long years encouraging anyone who would listen to confront mortality, make choices, and make personal decisions known to all. It’s called living fully, even into dying.

So M, after conceding her own days on the planet were dwindling, sat down over a cup of soup I’d brought her not long ago and we went about the business of saying goodbye. I told her why I thought she was such a wonder, and she told me all the things I’d be happy to have said for my own eulogy. OK, we had an extravagant mutual admiration society. But the life lesson is that telling others about their own gifts and good qualities (however hard it might occasionally be to uncover them) is something anyone can do, any time; the planet would be immeasurably better if more of us did it more often.

M was supportive of my activism for reproductive justice, having done more than a little of that herself in years past, but once she expressed reservations about how much time I was investing in that cause. “It’s time for young people, young women, to take that on,” she said. Well, yes. Another 2015 greeting for that demographic: reproductive rights are disappearing at an alarming rate. Unless more of us of whatever gender or age pitch in, women – particularly women without money or power – will soon be back in the pre-Roe dark ages, with no control over their own bodies. Which could make for a very unhappy new year for uncounted thousands of women.

The daughter of a rabbi, M was aggressively non-religious. We didn’t waste a lot of time on the subject, though she applauded the idea of my Presbyterian church working to break cycles of poverty. But once, after some sort of “What Would Jesus Do?”-type remark I made she said, “Oh, you and Anne Lamott.” I am personally fine with being lumped in with my funny, gifted friend Lamott, but this was not meant as a compliment. It did lead to a brief, lively discussion about faith and practice. And wouldn’t 2015 be a happy new year if fewer wars were fought in the name of Allah (or Whomever) and more focus were put on the peace, justice and love for fellow creatures that is the basic message of every religion around.

Rest in peace Maya Angelou, Robin Williams, James Brady, Pete Seeger – and all those other good souls we lost in 2014. Most especially, M.

And Happy New Year to us all.

Death and Dying/Dying Unafraid/End-of-Life/geriatrics/seniors
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Danger Zone in End-of-Life Talk

by Fran Johns

carved ice dove

A suicide pill for everyone over 85? Not the wisest plan to suggest right now. But it is, in fact, a possibility put forth by Joyce Appleby, Professor Emerita of History at the University of California, Los Angeles.

In a letter published in the New York Times on November 13, Appleby notes a recent anti-longevity article by Ezekiel Emmanuel and a new book on end-of-life care by Atul Gawande (both physicians,) and says,

“Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.”

Appleby goes on to note that organizations such as Compassion & Choices, with which this writer has worked closely for well over a decade, “are campaigning for dignified terminations of life for those with incurable diseases” but writes, “What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.”

Not surprisingly, Appleby’s letter – one of The Times’ regular “Invitations to Dialog” – drew more than 300 responses. Nine were selected to appear either in print or online; this writer’s is among those online and is as follows:

“I strongly support the right of a terminally ill, mentally competent adult to choose aid-in-dying, now legal in five states, but Ms. Appleby does a disservice to the cause by suggesting “a step further” — prophylactic suicide. The latter bears no relation to the former.

“We would be far better served to fight unwanted medical treatment, so often futile and excruciatingly painful at the end of life, and to enforce individual advance directives. My own directives (I’m 81) stipulate that no medication other than pain relief be given should I become unable to speak for myself, and stress that I do not wish to be fed if unable to feed myself. More important, all of my children and close friends understand these wishes because we’ve had the conversation.

“Let’s work toward those sane measures, and leave “suicide” out of it.”

Because the Death With Dignity movement is so important, and informed dialog about it so critical, it is both tragic and dangerous to have misinformation and misperception spread. There’s been enough of both over the decade+ in which the movement has slowly gained strength. To set the record straight:

Death With Dignity – the right of a terminally ill, mentally competent adult to ask a physician for aid in dying – is now legal in five states (Appleby left out New Mexico) and the movement is fast gaining ground in half a dozen others. This is partly because people increasingly understand that Death With Dignity is not suicide – and is certainly no kin to “euthanasia,” as Emmanuel would have us believe. Under Death With Dignity laws, death comes because of a disease. Every death certificate for those who have considered or used DWD laws lists the cause of death as the disease; it is not caused by suicide. Euthanasia would never be allowed under DWD laws.

But the movement is also gaining strength because it has been carefully thought out and tested. Because it is rational and safe. DWD laws are designed to promote individual autonomy, and incorporate safeguards against abuse.

Much of the opposition (as evidenced in several of the letters in The Times) comes from misunderstandings which are advanced by Emmanuel’s and others’ misuse of the word “suicide” and by fears that the elderly will be encouraged to get out of the way as Appleby’s notion suggests. Both writers muddy the waters and undermine an important cause.

Death With Dignity is a safety zone. Irresponsible words throw it into a danger zone.

 

caregiving/compassion and choices/Death and Dying/End-of-Life/Healthcare/Women
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Thanks, Brittany

by Fran Johns

clouds

Brittany Maynard, 1984-2014

No one was surprised by the news of Brittany Maynard’s death on November 1, as she had planned. The news arrived in my Inbox late Sunday night, November 2, in an email from Compassion & Choices, an organization I have supported — as a volunteer, Northern California board chair and in all other ways — for well over 15 years,

What Brittany did for Compassion & Choices, and for you and me, though, far exceeds what any one person might ordinarily have done. Hers was an extraordinary demonstration of how to live, and die.

More of how she lived will continue to be in the news. But it’s how she died, with generosity and grace, that is worth noticing right now. Just to touch on a few things:

Brittany, in making her own choice, showed us how to make our own choices. Demand the right to control your destiny, she was saying. Fight for legalized aid in dying. Complete your own advance directives and make sure EVERYONE in your family and circle of friends knows what your own wishes are. Death with dignity was Brittany’s choice, and she wanted it to be yours — if you choose.

“The freedom is in the choice,” Brittany said.  “If the option of Death With Dignity is unappealing to anyone for any reason, they can simply choose not to avail themselves of it.”

Brittany was irate over insinuations that she had been “manipulated” by anyone. She was a strong, educated, independent, intelligent woman who led a joy-filled life and confronted its abbreviated end with remarkable courage. The reality was simply that she took control of her own final months, weeks, days, by moving to Oregon where aid in dying is legal. The reality is that she wanted her life — and death — to have meaning for all of us. She hoped that by sharing her story all of us might benefit.

It’s about freedom. Brittany, thankfully, is now free of the terrible pain her illness was bringing, a pain that was certain only to increase. Her family will mourn for a long time, but they are free of the pain and anguish that comes from watching someone you love suffer.

You and I are free to choose. We can continue to let those who hold differing views deprive us of our right to control our final weeks and days. Or we can fight to legalize our right to choose a compassionate death. Eventually, that right will prevail.

Thanks, Brittany.

California/compassion and choices/Death and Dying/End-of-Life/Health
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Peaceful dying vs Doctor Knows Best

by Fran Johns

credit acpinternist.org

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.

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.

California/caregiving/End-of-Life/Health/seniors
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The Intriguing Invisible Audience

by Fran Johns

The questions were sharp, incisive. The comments were poignant, sometimes wrenching, sometimes funny. But the really funny thing was that I couldn’t see a soul in the audience.

This was a recent talk and group discussion with the Senior Center Without Walls. I was on the phone in my living room, the moderator was somewhere else, and some 20 to 30 seniors – most of them old, if unseen, friends by now – were sitting comfortably in their San Francisco Bay Area living rooms. Who knew?

This particular discussion dealt with end-of-life issues, although I got in (with advance permission) an introductory plug for Perilous Times: An inside look at abortion before – and after – Roe v Wade, and my current soapbox about preserving reproductive justice. I talked briefly about my longtime involvement with Compassion and Choices, about the work of that excellent organization, and the multiple benefits of considering one’s own mortality before one’s own death is knocking at the door. From the various phones came personal tales – “My husband died exactly as he wished…” “one member of the family wanted to contradict what (the dying person) explicitly wanted…” And questions about what C&C can do (counsel, advocate, support) and even – every nonprofit representative’s favorite: “Where can I send money?”

Audience members come and go at will, during Senior Center Without Walls discussions, and the pretty constant beeping that heralded the comings and goings made the entire event feel like a free-wheeling open house. Which is, in fact, not far from the truth.

Senior Center Without Walls participants play bingo, read plays, join support groups for everything from low vision to LGBT issues, bird-watch (guided help with identifying the birds seen from your window) and share in adventures that range from armchair travel to sing-alongs.

I hope they learned a little from this discussion leader; I learned a LOT from the scattered seniors of Seniors Without Walls.

 

 

 

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/Death and Dying/End-of-Life/Family and Friends/Health/Law/Medicine/Reproductive rights/Women
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On choosing one’s words…

by Fran Johns

I was taken to task, rightly so, by a reader who categorized my saying “no one… has an abortion without anguish” (you can read B’s articulate comment, and my response, in the 2/22 Comments) as “hokum.” She might also have said “hogwash.” Mea culpa. “Anguish” was a poor descriptive choice. “Serious thought” maybe; “self-reflection,” “concern.” Actually, the decision does involve anguish for many women, especially those whose rights are being denied by lack of access or harsh state restrictions.

But one word can wreak havoc.

Take the hyphenated word “pro-life,” which has been appropriated by those who are ferociously anti-woman. As if the issue of abortion — always complex and private, and occasionally anguishing — involved nothing at all beyond the (potential) life of a fetus. I consider myself ferociously pro-life, it’s just that I value the life of a woman. And am pro-woman’s-life enough to honor and trust her ability to make her own decisions about her body.

Or the emotionally charged word “suicide.” Those of us who believe in the individual’s right to a compassionate and dignified death have worked hard to get that word out of the discussion. Suicide is the desperate act of a despairing person; “physician aid-in-dying” is a compassionate choice made by a terminally ill, mentally competent adult.

Word choices took much of the focus in a fascinating panel on “Defining Death” sponsored recently by the University of California San Francisco Medical School. More about that event on HuffingtonPost as soon as I can get to it. Cases under study included the tragic, ongoing story of 13-year-old Jahi McMath, and the equally tragic story of 14-week-pregnant Marlise Munoz, whose brain-dead body was briefly kept on “life” support because the hospital and the State of Texas placed the potential life of that pre-viable fetus above the expressed wishes of her husband, parents and even Munoz herself. The distinguished UCSF panel of experts on medicine, law and ethics spoke repeatedly of how much anguish — the word definitely fits here — might have been prevented if only a few, kind words could have replaced some of the jarring words that unfortunately must eventually be said.

Imagine you’re the patient, or family, or attending healthcare worker (try to leave the lawyers out of this.) When does a moments-ago-healthy person become a “corpse”? A “dead body”? Who decides if a pre-viable fetus is a “person”? How can the average person even understand “brain-dead”? If you bring the lawyers in, you encounter “property.” In more than a dozen states there are laws on the books that say that if a pregnant woman dies her body must be maintained until the fetus can be delivered… no matter what advance directives she may have that specify her wishes to the contrary. One family fought against this outrageous miscarriage of justice by claiming their dead loved one’s body — which was, in the eyes of the law, their “property.”

It’s a scary world we live in. But that word JUSTICE. If we can only hang onto that one.

 

 

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