The Good Death: A Demonstration

SHE MODELED, FOR THE LIVING, HOW TO DIE WELL

Photo by Rafael Hoyos Weht on Unsplash

I’ve just finished an obituary of sorts for my friend Laurie, who died yesterday afternoon, slipping quietly into an ever-deeper sleep with those she loved best beside her. We should all, eventually, be so lucky.

The way you know you’re dead, in today’s senior living communities, is that your picture goes up on the hall table. Laurie and I laughed about that just last week, when I was saying I’d work hard at writing something elegant to go beside her photo. From somewhere in the ethersphere I am certain she’s getting the last laugh.

Elegance was easy to come by in this case. A decade ago Laurie had shepherded her physician husband through a descent into dementia, managing to keep him at home in their apartment until his own relatively gentle demise. They had raised two daughters and led a full, good life.

One daughter was extremely close to her mother, as was her wife, a particularly beloved daughter-in-law to Laurie.

So the first thing they did, en route to the Good Death, was to talk frankly and in detail about what exactly Laurie wanted. At 91 — precisely the age of this writer — Laurie enjoyed being with friends and family, walking her San Francisco neighborhood, reading and listening to music. She could still do most of these, but recent illnesses were imposing limitations. 

We talked, occasionally, of how she felt her quality of life had diminished. Because of my volunteer work with Medical Aid in Dying, which is legal in our state (and 9 others plus DC,) we talked a good bit about that option — which she said she would choose over any painful & debilitating end. 

A few weeks ago an intestinal issue sent Laurie to the hospital. Surgery would be required, the doctors said; and it would be a high-risk procedure.

No thanks, said Laurie, I think I’d rather go home to die in peace.

Which was exactly what she did. With a hospice bed positioned so she could look out at the distant mountains, a TV set she mostly kept turned off and flowers on the windowsills, she made herself comfortable. There was morphine for pain, but she had almost none.

There’s a name for this way to die: Voluntary Stopping Eating and Drinking (VSED.) The intestinal issue had spelled the end of her eating; stopping drink hastens the process. A popsicle-like swab was by her side to prevent any discomfort from thirst.

For a week, friends stopped by. We’d tell her how much she had meant to us; she’d return the sentiment — but nothing faux or flowery: “We really didn’t know each other that well,” she said to one visitor. “But I remember a funny thing you said not long ago . . .” 

Sometimes, as the days wore on, she would fall asleep mid-sentence. Nobody cared. 

Ten days after her return from the hospital Laurie’s sleep simply deepened and her heart and breathing stopped. Her two beloved daughters were holding her hands.

Arguing With the Doctor – A plea for end-of-life choice

Dandelion

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?

Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.

The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.

Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.

And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.

I am less certain. Thus my argument.

In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”

Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”

After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:

Why should you have the right to insist that I linger, when I am dying?

How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?

When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?

Why should your conviction about the efficacy of your medical field trump my autonomy?

Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?

It’s my only precious life, after all. Why should I be denied control of its precious end?

 

 

 

Thanks, Brittany

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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.

Peaceful dying vs Doctor Knows Best

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.