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.

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.

Peaceful dying vs Doctor Knows Best

credit acpinternist.org

Barbara Coombs Lee, the sharp and articulate president of Compassion & Choices, spoke to the issue of death with dignity on PBS NewsHour tonight, with opposing views presented by Ira Byock, noted physician, author and advocate for palliative care. Neither really won; the time was too short and the issue is too complex. The Death With Dignity movement though, is not going away, and we the people will only win when the movement wins.

Lee spent 25 years as a nurse and physician’s assistant before becoming an attorney and devoting her life to personal choice and autonomy at life’s end. She believes a terminally ill, mentally competent adult should have the right to end his or her life when and how he or she chooses. Byock, chief medical officer of the Providence Institute for Human Caring, believes that if doctors were properly trained in pain management and end-of-life care – which he readily admits is far from the case – no one would ever want, or choose, to hasten one’s end. Lee appreciates the grace with which Brittany Maynard is facing her own very premature death; Byock says the active, well-educated 29-year-old is “being exploited” by Compassion and Choices.

A few caveats:

Barbara Coombs Lee is a good friend whom I admire and respect. I have worked with Compassion & Choices for well over a decade as a volunteer, Northern CA member and board chair, and now member of the Leadership Council. I strongly support physician aid-in-dying and individual autonomy.

“Hospice and palliative care,” Lee said on the NewsHour segment, “are the gold standard” for end-of-life care. But no amount of hospice care, or palliative care, can alter “the relentless, dehumanizing, unending” progression of a disease such as Maynard has and many of us will also face. For many of us, as for Maynard, there will be loss of every bodily function, one by one, quite likely accompanied by excruciating pain and possibly things like the seizures Maynard would like to minimize for her own sake as well as the sake of her loved ones who would be forced to watch.Stethoscope

Perhaps doctors will eventually all be adequately trained in pain management and palliative care. But even then – and “then” is a very long way off – must the doctor always know best? Why can’t I, the patient, the person facing my own dying, be the one in control?

Byock is dismissive of the pain involved with watching a loved one suffer agonies of prolonged dying. Maynard’s inevitably increasing seizures, for example, would be helped by palliative care, he suggested, so she wouldn’t suffer terribly. If I chose – as Maynard is choosing – to have my loved ones remember me as a woman at peace while holding their hands rather than a disintegrating person gripped with terrible spasms – why is that not an honorable choice?

Byock – who in this NewsHour fan’s humble opinion got the better time and treatment – slipped in words like “suicide” and “slippery slope” and “euthanasia,” and phrases like “euthanized in the Netherlands” too far along in the program for Lee to answer in the brief time given her. Byock ignores the fact that no one choosing to hasten death under the existing laws (four states now have the law, two others allow aid-in-dying) is committing suicide; they are being killed by their disease. No one has been, or will be, “euthanized.” The United States is not the Netherlands. He also ignores the fact that in the long years of Oregon’s successful law – it was first enacted in 1997 – there has been not one report of abuse. Not one.

There is no slippery slope. There is only compassion. Self-determination. Autonomy. Dignity. Grace. Peace. Why should they not be legal?

I respect the medical and literary achievements of Ira Byock. But I’m sorry: the doctor does not always know best.

On being treated to death – Part II

Is there a fate worse than death? Yes. In the U.S., often it is the fate of dying slowly: aggressively treated, over-treated and worn down by the system until that fate has made death truly a blessed relief.

Deborah Wright, an ordained Presbyterian minister and writer now working in secular fields while simultaneously serving as personal pastor to many, forwarded an article that proves out the fate-worse-than-death highlighted in this and recent other articles (see June 25 post below.) The fact that stands out, she comments, is that “the length of time we use palliative care services is growing shorter — because we start it too late.”

We start palliative care too late, we treat too aggressively and too long. The opening story in AP writer Marilynn Marchione’s thoughtful, poignant article just published in Daily Finance serves as a classic example:

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.

Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.

Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.

“We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Marchione tells other stories of patients who might have had far more peaceful final days — and of patients who chose extensive, aggressive or experimental treatment for a variety of reasons. It should be the individual’s choice. But the reality is that discussion of palliative care or hospice care (there is a difference: hospice involves declining further treatment; with the newer “palliative care” concept some therapies may be continued) simply doesn’t happen until too late. If it happened sooner, many of us — likely including Rosaria Vandenberg — would choose hospice care over aggressive end-of-life treatment.  But physicians are too busy talking treatment, and patients have not considered their other choices. Comfort and peace lose to the system.

An article posted today on the website of the National Hospice and Palliative Care Organization points the finger in the right direction, right at you and me. If we took the time and energy to write our advance directives, and talk them over with family and friends, millions of days of suffering and millions of wasted dollars would be saved.

Recent media coverage on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination.  Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand.   Yet, it’s estimated that 70 percent of Americans have not completed a living will.

  • A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
  • A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
  • Advance directives can be changed as an individual’s situation or wishes change.

Still, you and I put it off. Or you may be putting it off, at least, and if so you are taking an absurdly unnecessary risk. You could, instead, download free forms, fill them out and avoid that risk.

Deborah Wright has shepherded countless friends and family members through their final days, and knows what a blessing hospice and palliative care can be. Problem is, though, “we start it too late.”

Americans are treated, and overtreated, to death – DailyFinance.

Dementia: stories and sources

The post about dementia sufferers and their tendency to wander (May 6) evoked a host of stories about temporarily lost parents, grandparents, friends and relations. Almost everyone, it seems, has such a story — and unfortunately, those who haven’t may collect one or two in the future.  Reader Cathy Jensen sent a poignant tale of a friend who went wandering in his pajamas during the pre-dawn hours, but was found by the garbage collectors and brought home on the back of their truck. And reader Tom McAfee, en route to see his own mom and hopefully jog memories of children and grandchildren with photos, sent a link to a podcast aired on WNYC in March.

An offbeat idea, the WNYC piece explains, turned out to be a good solution for a nursing home in Germany from which residents were wandering off. Administrators created a bus stop in front of the home, complete with bench and a painted sign for a bus that never came. It provided a place where many wanderers could sit and wait until the urge to go back home, or elsewhere, melted away. Might not work everywhere, but it worked in Dusseldorf.

And reader JTMcKay4 sent, in case you missed them in the comments section, links to the Alzheimer’s Association’s “Safe Return” program and to a source for a long list of related documents. State-specific advance directive forms can also be downloaded, free, from the “Caring Connections” site maintained by the National Hospice and Palliative Care Association site, and this space remains committed to the support of the nonprofit Compassion and Choices, from which forms can also be downloaded.

There is no guarantee against winding up in a memory unit. But a little preparation can go a long way toward helping if the time comes.

Patients fight hospitals (& not just Catholic hospitals) for proper care

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.

Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.