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.

 

 

Life: a sexually transmitted, fatal condition

Life: a sexually transmitted, fatal condition

sunset

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande

Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

Dying in the Fix-It Society

Buddhist teacher/lecturer Frank Ostaseski spoke recently to the Bay Area Network of End-of-Life Care on the subject of compassion – something Ostaseski preaches, teaches and practices himself. Co-founder, in 1987, of the Zen Hospice Project, the first Buddhist hospice in the U.S., Ostaseski currently heads the Metta Institute, created to provide education and training on spirituality in dying.Buddha

Buddhism, Ostaseski said, holds that life is supported by two wings, compassion and wisdom, and neither is at its best without the other. His audience, made up of physicians, hospice workers and others involved with end-of-life care, was in interested agreement with the renowned speaker as he expanded on the theme. But this writer, also in agreement, found one side remark particularly pertinent to today’s end-of-life issues.

Ostaseski spoke of a severe heart attack he suffered not long ago, and of the wisdom gained from that experience. It was insight on critical illness “from the other side of the sheets.” During his hospitalization most visitors, even longtime friends with credentials in compassion, said the wrong things. “They were always saying, ‘It’ll be better tomorrow, Frank,’ when I wanted to talk about what was going on that very moment.” Additionally, Ostaseski found that nurses and doctors “interacted with monitors far more than with the patient.” What could well have been an end-of-life situation was, in short, lacking in compassion and wisdom both.

“Hospitals are fix-it places,” Ostaseski remarked.

We may have gotten fixated on being a fix-it society. Whatever the problem, a chemical or technological answer, in the fix-it society, is instantly sought. We fix brain injuries, once-fatal diseases, missing limbs, and more. But can we let someone who is terminally ill quietly die? Seldom. More often than not we keep trying to fix her with extended interventions, futile and expensive treatments or hospital stays that make dying a horror.

Ostaseski and others are working hard to help people find meaning in their final days, focusing on palliative care. Some, including this writer, are working hard to make medical aid in dying a legal option available across the U.S. ALL of us want a peaceful and compassionate death.

The_flame_of_wisdom

The flame of wisdom

 

The personal bottom line, yours and mine, is this: eventually we die. If the focus can be shifted away from constantly trying to extend our days, we can fix the final days that lead, one way or another, to the mysterious, inevitable, unpredictable, un-fixable but quite natural end. All it takes is a little compassion, and a lot of wisdom.

Death, Dying & the Grey Zone

clouds

Death-and-dying usually goes with I-don’t-want-to-talk about-it.

Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?

Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.

Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:

“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”

Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.

ER

Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.

Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.

Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.

Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.

It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.

Because looking realistically ahead makes infinitely more sense than zoning out.

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.

Thanks, Brittany

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.