A Global Look at Death & Dying

Three things you and I have in common with the rest of the world: We are born, we live, we die.

Lisbon - Conference brochure

Conference brochure

Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive ConnexionsInterdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.

As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.

Lisbon - Castelo view

Lisbon at dusk

In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:

Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.  Pain

“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”

In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.

Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?

Lisbon presentation

Doing my presentation

My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?

After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.

All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.

Lisbon conference group

The 2018 EOL Experience Conference Group

 

Next week: The Lisbon Conference: Appearances from beyond the grave

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.

Dying On Your Own Terms

Mileva Lewis with the author

Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

Dust to Dust — to save the planet

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.

When Cure Is Not An Option

“Has anybody asked the patient?”

Jessica Nutik Zitter raised her hand to pose that question some years ago, at a “Morbidity and Mortality” conference wherein a room full of physicians were discussing treatment options for a dying patient. The doctors continued to talk about surgery A or drastic measure B. Zitter raised her hand again to say, “Has anybody asked the patient?”

Zitter is now a highly regarded critical care/palliative care physician who speaks and writes often on end-of-life issues. A solitary voice at that “M&M” conference, today she is one of the leading voices for medical care that asks the patient first. It is the care most of us would choose.

Zitter spoke recently at San Francisco’s Commonwealth Club, an event titled “Avoiding the End-of-Life Medical Conveyor Belt.” Her horror stories explain the conveyor belt metaphor, and confirm the immensity of the end-of-life care problem facing us all. The problem is not just with our cultural inclination to ignore death altogether, as has often been written about in this space, or with physicians’ inclination to continue treatment as if death were not an option. It’s both.

Fran & Jessica Zitter 6.9.15

Jessica Nutik Zitter with Fran Johns

Jessica Nutik Zitter’s stories (a book is forthcoming from Penguin Random House) starkly highlight the death-is-not-an-option attitude unfortunately still common in the medical profession – and the pain and anguish endured by patients who wind up on the conveyor belt as a result.

People will often say, “Take a chance! Maybe God will work a miracle…” Zitter comments, but “the odds are high for (that person’s) being committed to a great deal of suffering and a grisly death.”

Thus the conveyor belt: a patient who is dying and could use a little peace instead winds up undergoing a cruel series of events – resuscitations that mean broken ribs, restored breathing that means a tube thrust down the throat, futile interventions that add to – and prolong – pain and suffering.

Zitter tells of a patient who was essentially “a body,” shrunken and yellowed, being given emergency resuscitation that one nurse likened to torture; and of a man repeatedly taken from the nursing home to the ICU, because he had hand-written a note saying he wanted his life prolonged ‘at all costs.’ “We don’t give people graphic visuals of what those costs may be,” she says.

Asked why doctors don’t practice patient-centered care, Zitter cites two factors – in addition to the imbedded tradition of always providing treatment, and more treatment. One is the need for physicians to get paid for time spent on end-of-life discussion, something that seems perfectly rational but tends to get shouted down in the politicized healthcare arena. The second is equally simple: “If you don’t offer care, someone else will.”medical symbol

Asked by an audience member about what constitutes good care when cure is not an option, Zitter recommended that decision making in such cases should be made early on. “The possibility to cure gets me up in the morning,” she said, “but helping a dying person achieve a good death is equally satisfying.” While advance directives are useful, she points out, they are not enough. It’s important to talk extensively with friends and loved ones, and to create documents with the help of legal and/or healthcare professionals if possible. (A growing number of individuals and organizations are offering such services.) “But decisions have to start with the patient,” Zitter says. “The patient saying ‘do this’ or ‘don’t do that.'”

Otherwise, it’s onto the conveyor belt.

 

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.

 

 

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.

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.