John McCain & Death with Dignity

McCain, John-012309-18421- 0004

Official portrait (Wikipedia)

John McCain did it right. Not just carefully constructing the last word in his acrimonious exchange with Mr. Trump, or in the countless ways he demonstrated patriotism, dignity & courage and pointed out how democracy is now being threatened. I disagreed with his political positions more than I agreed with them, but in the last few years I’ve sent him more than one thank-you letter. The thumbs-down elicited my most enthusiastic note. But here’s what else he did right:

John McCain kept control of his dying – which is to say, the last piece of his living. In so doing, he left one more gift to America: some suggestions about how to die.

We spend untold energies, and untold billions of dollars, on the national obsession with avoiding death. In exremis we go to the Emergency Room – where tests and procedures are undergone, suffering is often prolonged and increased, and costs skyrocket.

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Talking about dignified death with Kathryn Tucker

Here is some food for thought from a recent Arcadia Healthcare study: Just looking at the costs (forget the pain & suffering) of the final months of care according to where that final month took place – for the 42% who died at home, $4,760. Another 40% died in the hospital: $32,379. Dying in a nursing facility came in second from the top at $21,221.

I have no idea where John McCain was when he died, but I’d be willing to bet he was at home. Home is where 99% of us say we want to die – but we don’t work very hard at making that happen. Instead, we put off making plans, writing advance directives, talking to friends and family about what we want, planning our funerals. Seriously now, do you have anything written down about what you’d like for your memorial service? Senator McCain reportedly spent eight months at the end of his life lining up eulogizers, specifying music, contacting speakers, saving his family that often burdensome task.

Kathryn Tucker 9.20.18

Kathryn Tucker

But it’s the business of dying – living as one chooses right up until the time of death – that McCain seemed to do so well. Not many of us pay such attention. He apparently didn’t need to hasten his dying, but we would all do well to know about hastening, whether we choose it or not. Even in states where medical aid in dying is legal, dying patients put off making their own decisions, or find out too late that their physician will not participate. Fortunately for us all, there are people like Kathryn Tucker, Executive Director of the End of Life Liberty Project, fighting to protect and build the movement toward death with dignity. (I was privileged to host an event for the distinguished Ms. Tucker recently, hence the photos.)

So maybe you’re not as strong-willed as John McCain. Maybe you don’t have access to the Navy Band for your memorial service. But you can acknowledge that dying is something we humans do and write down what you want (or don’t want, like painful, expensive last-minute heroic measures) for yourself as you’re doing it. You can TALK to family and friends. You can send a contribution to ELLP. Or Death with Dignity or any on the other organizations working to make death with dignity possible.

 

Choosing a better death

Could dying be better?

By now most people acknowledge that there are “good” deaths: peaceful, with minimal pain, at home surrounded by loved ones – and “bad”: pain-filled and prolonged, often for months or years and more often than not in a hospital or other institutional setting. The movement toward “good” death – legalized medical aid in dying – has been growing for decades in the U.S., but has been gaining momentum and attention in recent months.

Liner.2Robert Liner MD, a retired obstetrician/gynecologist, gave an informative update on the movement at a recent University of California San Francisco grand rounds. Liner is one of four patient plaintiffs in a California lawsuit which would make that state the sixth to legalize physician aid in dying, and a longtime supporter of leading end-of-life organization Compassion & Choices. The suit is also joined by three physician plaintiffs.

Liner, whose cancer is in remission, said he would personally prefer to avoid death altogether. “But along with birth, dying is a universal experience. It’s what we all do.” And equally universal, he noted, is the wish to make that experience a little more compassionate, a little closer to what most of us would choose.

Liner outlined the current status of California SB-128, the End of Life Options Act, now working its way through the senate. While granting terminally ill, mentally competent adults the right to ask their physicians for life-ending medication, the bill would also establish safeguards such as requiring assessments by multiple physicians and repeat requests for the medication made at least 15 days apart. A similar law in Oregon has proven valuable in many aspects over the 18 years in which it has now been in place, Liner said. Death W Dignity newspaper

He cited a study published in the New England Journal of Medicine at the end of the Oregon law’s first decade which found that since passage of the law Oregon has seen improved training for physicians in end-of-life care, an increase in individuals’ completing advance directives, improved pain management and rates of referral to hospice and an increase in number of people dying at home.

Putting the better-death movement in historical context, Liner referenced a significant case several decades ago that sometimes goes unnoticed. In 1991, he explained, New York physician Timothy Quill published an article in the New England Journal of Medicine describing how he had prescribed barbiturates to a dying patient when her leukemia reached a point at which she no longer wanted to live. A grand jury subsequently declined to prosecute. Quill later became one of the plaintiffs in a case that wound up reaching the U.S. Supreme Court. And in 1997 the Court let stand a New York law prohibiting what was then called physician-assisted suicide, ruling that there is no federal constitutional right to die – effectively turning the issue back to the states.

Five states – Oregon, Washington, Vermont, Montana and New Mexico now allow physician aid in dying, Liner explained. California’s efforts to become the sixth include a campaign launched last year by Compassion & Choices and the lawsuit filed early this year.

Scales of justiceLiner distributed copies of the April edition of San Francisco Medicine, the journal of the San Francisco Medical Society, in which he and two of the other physicians involved in the lawsuit explain their support for legalized aid in dying. “Collectively, we represent almost a century of medical practice, teaching and research…(and) probably most relevant is our extensive experience caring for dying patients,” write lawsuit plaintiffs Liner, Donald Abrams, MD and Marcus Conant, MD in San Francisco Medicine.

The lawsuit is backed by national disability rights advocacy group Disability Rights Legal Center, Liner explained, and cites a number of reasons why aid in dying should now be legalized. While some arguments – such as privacy and liberty interests – are complex, one seems fairly straightforward: California penal code section #401, which makes it a crime to aid or encourage someone to commit suicide (a very different situation from a dying person’s wish to shorten his suffering), was written more than a century ago. Before dying shifted from being commonly a home event overseen by the familiar family physician to hospitals or other institutions where the large majority of Americans now spend their final days and weeks. Before medical technology made it possible to prolong life, often far past any “life” many would choose.

Liner, and millions of other Americans, believe choice in dying should rest with those who are dying themselves.

 

 

A new fight for good death

Kathryn Tucker

Kathryn Tucker

Christie White and Dan Swangard are fighting to live – and also fighting for their right to die: peacefully, at home, surrounded by those they love.

Kathryn Tucker and Nico van Aelstyn are now taking that fight to the Superior Court of the State of California; and it will be a fight worth watching.

Tucker, a distinguished attorney now serving as the executive director of the Disability Rights Legal Center, has already led a number of such battles for peace at life’s end, including defense of the Oregon Death With Dignity Act several times in the early years of that now 18-year-long success story. van Aelstyn has a similarly notable record and an award-winning history of pro bono work on end-of-life issues. Many supporters of end-of-life choice, including this writer, are optimistic about the potential outcome.

But court battles aren’t settled overnight, and White and Swangard know they may not have a lot of time left.

Christie White

Christie White

“My mother will tell you,” White remarked during the press conference announcing the lawsuit, “that from the time I took my first steps I wanted to be in control. I want to be in control. I am adamant about not wanting to die in a hospital, but at home, surrounded by my family. I want to be able to gather my loved ones and meet my death with some dignity and peace of mind.”

Since first diagnosed with non-Hodgkin’s lymphoma and then acute myeloid leukemia or AML Leukemia more than five years ago, White has undergone chemotherapies, radiation therapy and a bone marrow transplant. Because of those prior interventions, her medical options would be severely limited should her leukemia recur.

Dan Swangard, MD was diagnosed with tumor of the pancreas, with metastatic disease to the liver, and had major surgery in 2013. “Not to state the obvious,” he told the press, “but dying is something we all do. It can be loud, quiet, filled with anxiety, pain and suffering, at home or on the road. It can also be peaceful, filled with connections to people we love the most – if planned.”

Swangard has practiced medicine for 22 years. He has also served as a volunteer with Zen Hospice and at Laguna Honda Hospital in San Francisco, experiences that add to his own understanding of what a good death can be.

This lawsuit is about the possibility of a good death for everyone in California. Christie White and Dan Swangard are two good Californians who deserve such an option.

 

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?

 

 

 

Saying Goodbye, and Hello to 2015

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.

Danger Zone in End-of-Life Talk

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.

 

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.