Category: Dying Unafraid

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Dust to Dust — to save the planet

by Fran Johns

Tree

Why is this not a good idea? Wherever you stand on the “ashes to ashes, dust to dust” business, doesn’t it make sense to quit burying tons of toxic materials in the ground along with our dust and ashes?

Recently an idea for better handling of our dust evolved into the Urban Death Project, a nonprofit that caught this writer’s eye with a Kickstarter campaign some months ago. The campaign having surpassed its designated goal, my “Future Tree” tee shirt is now on its way; and the good idea seems worth sharing.

Urban Death Project founder Katrina Spade is not the first to come up with an alternative to the seriously harmful burial practices of recent centuries – practices that dump unimaginable amounts of contaminating formaldehyde, non-biodegradable metal and concrete into the ground, as if the planet had limitless ground to contaminate.

Natural burial, or “green burial” has been around for at least as long as civilization. The writers of Genesis saw fit to include that “unto dust you shall return” line, and most people found ways to make that happen fairly effectively, with exceptions made for the pharaohs. But somehow, embalming and vaults and caskets crept in, and staving off decay became both profitable and popular. Jessica Mitford’s 1963 The American Way of Death exposed abuses of the funeral home industry – Mitford herself had an inexpensive but memorable ceremony in San Francisco this writer recalls with fondness, and her ashes were scattered at sea. Her wildly popular book, though targeting funeral homes, may also have helped kickstart the search for better alternatives to what had become traditional burial practices in the U.S.

CemeteryJerrigrace Lyons was among the natural burial movement’s pioneers, with the founding of Final Passages in 1995. Lyons sought to “reawaken a choice that our ancestors once held sacred.” Final Passages is “dedicated to the reclaiming of traditional funeral and burial practices,” including green burial. One 65-year-old whose will specifies a green burial puts the issue in plainer terms, declaring he wants “to be part of a tree, part of a flower, go back to being part of the earth.”

Urban Death Project takes green burial to a new level. A three-story cone will form the space into which bodies are gently laid to rest, following a cycles-of-nature ceremony for loved ones. Also within the cone are high-carbon materials which – with the help of “aerobic decomposition and microbial activity” – decompose everything fully into a rich compost

All of which makes perfectly good sense.

It is not easy, however, to give up long-held ideas about dealing with one’s remains after one has presumably gone on to a better place. Family burial plots, oak-shaded cemeteries, columbaria and the scattering of ashes in special places all have great attraction. This writer has long cherished the notion of her children and grandchildren having a couple of lovely parties while they toss her ashes into the Chesapeake and San Francisco bays. This despite knowing that cremation takes high amounts of energy and sends carbon dioxide, mercury vapors and other pollutants into the atmosphere.

EarthBut here is the irrefutable bottom line: the total land surface area of planet earth is 57,308,738 square miles, including 33% desert and 24% mountains to divvy up among more than 7 billion people – all of whom will eventually die.

Turning us into trees to shade the next 7 billion? The Urban Death Project could be onto something.

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Choosing a better death

by Fran Johns

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.

 

 

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Life: a sexually transmitted, fatal condition

by Fran Johns

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.

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

by Fran Johns

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?

 

 

 

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.

 

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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.

Death and Dying/Dying Unafraid/geriatrics/Health/Lifestyle/seniors
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Do We REALLY Want to Live Forever?

by Fran Johns

Is immortality just around the corner?

Say you could live, maybe not forever, but to 150 or so; would you exercise that option? The immortalists, notably including British biomedical gerontologist Aubrey de Grey, unquestionably would. Immortalist thinking is that we should be “conquering death” (by rearranging genomes and other scientific maneuvers) so we can set about living into infinity. De Grey’s goal is to develop a “cure” for human aging.

Immortalism — OK, it’s not in the dictionary, but may be there any day now — the notion that humans should be able to live forever, has been around for a while itself. In the late 1920s, after an “otherworldly experience in the Utah desert,” aviation pioneer Charles Lindbergh enlisted Nobel laureate scientist Alexis Carrel in an immortality project that never went much of anywhere. And that was fortunate, since it had more than a smattering of facism and anti-semitism. Several years ago, David Freidman wrote about that project in The Immortalists: Charles Lindbergh, Dr. Alexis Carrel and Their Daring Quest to Live Forever.

And now comes another daring quest. It’s led by super-scientist de Grey and is detailed in another, new book by Jonathan Weiner, Long for This World: The Strange Science of Immortality. No offense to Jonathan Weiner, who is a remarkably gifted writer with one Pulitzer Prize and a great deal more literary honors more than this writer, but I think I’ll pass on Long for This World. I did read a fine review of it by Abraham Verghese in the New York Times Book Review of August 1 (and was pleased to have my letter about it published a couple of weeks later.) Verghese pointed out that the Immortalists miss the point: “that simply living a full life span is a laudable goal,” and that we could end up “simply extend(ing) the years of infirmity and suffering.”

There’s also a finite amount of space on the planet, and just now we’re not doing a great job of sharing that space. This small piece of cyberspace believes the quest for better life — say, health and wellbeing — might make more sense than the attempt to “conquer death.”

Death and Dying/Dying Unafraid
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Modeling how to die

by Fran Johns

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic, just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and alternative interventions to see if she might wrangle some extra quality time on the planet she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and “administered magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, “to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front. And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

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