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.

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

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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?

 

 

 

On choosing one’s words…

I was taken to task, rightly so, by a reader who categorized my saying “no one… has an abortion without anguish” (you can read B’s articulate comment, and my response, in the 2/22 Comments) as “hokum.” She might also have said “hogwash.” Mea culpa. “Anguish” was a poor descriptive choice. “Serious thought” maybe; “self-reflection,” “concern.” Actually, the decision does involve anguish for many women, especially those whose rights are being denied by lack of access or harsh state restrictions.

But one word can wreak havoc.

Take the hyphenated word “pro-life,” which has been appropriated by those who are ferociously anti-woman. As if the issue of abortion — always complex and private, and occasionally anguishing — involved nothing at all beyond the (potential) life of a fetus. I consider myself ferociously pro-life, it’s just that I value the life of a woman. And am pro-woman’s-life enough to honor and trust her ability to make her own decisions about her body.

Or the emotionally charged word “suicide.” Those of us who believe in the individual’s right to a compassionate and dignified death have worked hard to get that word out of the discussion. Suicide is the desperate act of a despairing person; “physician aid-in-dying” is a compassionate choice made by a terminally ill, mentally competent adult.

Word choices took much of the focus in a fascinating panel on “Defining Death” sponsored recently by the University of California San Francisco Medical School. More about that event on HuffingtonPost as soon as I can get to it. Cases under study included the tragic, ongoing story of 13-year-old Jahi McMath, and the equally tragic story of 14-week-pregnant Marlise Munoz, whose brain-dead body was briefly kept on “life” support because the hospital and the State of Texas placed the potential life of that pre-viable fetus above the expressed wishes of her husband, parents and even Munoz herself. The distinguished UCSF panel of experts on medicine, law and ethics spoke repeatedly of how much anguish — the word definitely fits here — might have been prevented if only a few, kind words could have replaced some of the jarring words that unfortunately must eventually be said.

Imagine you’re the patient, or family, or attending healthcare worker (try to leave the lawyers out of this.) When does a moments-ago-healthy person become a “corpse”? A “dead body”? Who decides if a pre-viable fetus is a “person”? How can the average person even understand “brain-dead”? If you bring the lawyers in, you encounter “property.” In more than a dozen states there are laws on the books that say that if a pregnant woman dies her body must be maintained until the fetus can be delivered… no matter what advance directives she may have that specify her wishes to the contrary. One family fought against this outrageous miscarriage of justice by claiming their dead loved one’s body — which was, in the eyes of the law, their “property.”

It’s a scary world we live in. But that word JUSTICE. If we can only hang onto that one.