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.

Kathryn group1

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.

 

Death, Dying and a Few Questions

Third & final report on a few highlights of the global conference ‘The End of Life Experience: Dying, Death & Culture in the 21st Century’ in Lisbon, March 2018

Question markWhat are the tough end-of-life questions facing the people of Australia? Pretty much the same as those facing the people of the U.S. Or the U.K., or Canada, or Portugal. A few of those discussed at the recent End of Life Experience interdisciplinary conference in Lisbon would include:

How, exactly, do we define death after all? Iona College Professor Vincent Maher, who holds a variety of degrees and whose career has included broad based legal, health care and non-profit sector experiences, presented a paper on the complex case of Jahi McMath. McMath was declared brain dead following surgery to correct a sleep apnea condition at Children’s Hospital, Oakland CA in 2013. She was 13 years old. Her family refused to accept the declaration of death and insisted she be kept on a ventilator. “Court interventions, news and social media exposure ensued,” Maher explains. “Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco.” Eventually the family succeeded in having Jahi flown to New Jersey, one of two states (New York being the other) which follow a family’s definition of death. This policy was designed to accommodate Orthodox Jews, some of whom believe that the presence of breath signifies life. Jahi remains on a ventilator and feeding tube, with 24-hour care covered by Medicaid; her family still hopes to bring her back to California – where the coroner issued her death certificate in 2014.Grim reaper

Set aside the ethical, racial (McMath is African American,) financial and other questions, what is death? When the heart stops? When breathing stops? Or when the brain is dead? Medical technology can now keep a body functioning after brain death – organ donation is benefiting from this – but at some point, death takes over.

Can we keep control of our lives as they are ending? Increasingly, no, says Dr. Peter Saul, Senior Specialist, Intensive Care Unit, Calvary Mater Newcastle, NSW, Australia. “Dying in the 21st century in a wealthy country,” Saul says, “is now dominated by elderly people with significant disability, sometimes cognitively impaired, faced with making complex end of life care choices.” And those choices commonly follow “standard (medical) protocols and (are) in line with family wishes regardless of preferences recorded in advance care directives.” Australians, like the majority of people everywhere, would choose to die at home, Saul says; but “the entire structure and funding model of Western medicine greatly favors tertiary and hospital care over that provided in the community.”

Saul suggests that “the medical system at all levels would need to become proactive in creating genuine opportunities for choices to be available. This means asking more, offering more education, taking choice seriously and pushing back against a legal system that favors defensive medicine and over-treatment even in the same breath as pushing ‘patient autonomy.’”

So, is there anything hopeful on the horizon for the end-of-life experience? Definitely. Ottowa, Canada psychologist Morry Appelle and his wife, therapist Christine Appelle presented a paper on a discussion group they started five years ago “in an attempt to address more consciously and formally our own concerns of death.” They were surprised to find eager participants who became faithful, regular attendees, and who agreed to allow videos of some of their meetings to be shared. It is a remarkably effective way to confront mortality.

Planet earthThis writer left Lisbon urging the Appelles to publish a book about their novel idea, but you don’t really have to wait for the book. A group of friends or strangers willing to meet together for an extended period of time and simply talk through everyone’s fears and concerns offers an invaluable way to face, and embrace, life’s end. Such an experience could well lead to the patient autonomy and personal choice currently under threat in wealthier nations around the globe. It would undoubtedly help to have someone like Morry &/or Christine Appelle as facilitator. “Mostly,” they said about their experimental group, “we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin.”

The Lisbon conference did a lot of veil-lifting. Also lifted up? Questions worth pondering, wherever on this fragile planet we happen to be sharing our fleeting mortality.

Appearances from Beyond the Grave

The End of Life Experience: Lisbon conference #2

Say you have a daughter or granddaughter who flunked out of her expensive school and caused severe friction between you. Now imagine you’ve been dead for a few years – OK, this page is all about imagination just now – and that errant offspring just finished a PhD program, with honors. She creates a hologram of you, calls it into being and holds up the graduation photos. “What do you think!,” she asks? “Oh,” you say, in your formerly mortal voice, “I’m so terribly proud of you. Congratulations!” You smile broadly, and your offspring smiles back.

holographic doveWelcome to the 2030s. Or probably early 2020s. Holograms are here, and the potential for use in after-death encounters is just one element of this technological wonder. That vision of the end-of-life/afterlife was offered by Sierra College professor Kim Bateman, at the recent conference I was privileged to attend, in a fascinating presentation titled “Dialogues with the Digital Dead.” Bateman suggested useful possibilities such as “allowing the dying to finish unfinished business and the bereaved to more vividly imagine their loved ones without a physical body.” But her intent was also to look at “ethical concerns about consent, privacy, and the emotional safety of those participating” in what today seems more science fiction than potentially useful technology. Conference participants had a lot to say.

If you watched the halftime show at this year’s Super Bowl (I did not, so this is hearsay) you saw a performance by the wildly popular artist Prince. Since he has been dead for some time now, it was not really possible to book him – but it was possible to create a hologram, and that was what you saw. Someone at our conference said Prince had actually been opposed to holograms – which raises ethical issues he is no longer able to discuss.

But here we are. These incredibly realistic holograms can be digitally, posthumously, created by, say, your children or grandchildren, Bateman explained. The computer digs through your electronic history: every email, voice mail, text, Facebook post, Instagram picture, etc, etc, etc. What emerges is the pre-death you.Holograph dancer

Should this bring about a posthumous reconciliation between you and your formerly deadbeat offspring, that seems a clear benefit of the technology. But as with most questions surrounding end-of-life issues today, a lot is not so clear. Your surviving friends and relations will continue to grow and change after you die. Not so the holographic you. It has you frozen in time as the pre-death you. What if you had lived a little longer and decided a college education wasn’t all that important? Here’s your hologram being pleasant, but reconfirming the mortal you as a judgmental grandma.

As with other contemporary end-of-life issues covered at the Lisbon conference, this one raised a long list of questions. Would you want to be recreated in a hologram after you die? For how long after you’ve been gone? To whom should you leave instructions pro or con – or should you stay out of it and hope for the best? If a holograph of you is created, with whom would you want it to interact? Or are there those with whom you would specifically not want to interact, holographically speaking? Should you have the right to make these decisions yourself, while you’re still in the flesh?

If these questions seem all too spooky and futuristic, I apologize – but the spooky future is upon us.

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.