Two Reviews: Two Fine Books on Life’s End

Anita Hannig’s “The Day I Die” and Amy Bloom’s “In Love”

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(The following appeared first as a blog for End of Life Choices California, an excellent nonprofit on whose board I’m proud to serve. It’s reprinted with pleasure, especially after Hannig told me that our blog resulted in more visits to her website than did her interview with Diane Rehm; I love being mentioned in the same sentence with Diane Rehm.)

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on Medical Aid in Dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices CA.

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

*****

Amy Bloom’s In Love is a book for anyone facing Alzheimer’s, anyone who knows someone with Alzheimer’s – or  anyone who’s ever been in love.

It is, despite the somber underlying theme, a love story.

Bloom writes unblinkingly of her husband’s decision to end his life before Alzheimer’s can pull him into years of oblivion, and her own decision to support him in this quest. 

In just the first few pages it’s easy for the reader also to fall in love with Brian Ameche. Bloom writes with warmth and honesty about their love affair, begun while each was committed to someone else and eventually legitimized into a more or less conventional marriage. The handsome Italian architect/ex-Yale football player from a sprawling Catholic family and the celebrated Jewish writer/ teacher/ psychotherapist who share, at least, a dedicated atheism, create a life together bursting with joy. Until his diagnosis.

Brian, who has probably had Alzheimer’s for a few years, finally exhibits enough symptoms – confusion, forgetfulness, erratic behavior – that it can’t be ignored. And he is immediately, defiantly certain that he wants to end his life while he has the wits to do so.

In the U.S., there’s no legal, nonviolent way to accomplish this goal. Even in the 11 states or jurisdictions where Medical Aid in Dying is legal, one has to have a terminal diagnosis and be mentally competent; Alzheimer’s is a disqualifier. 

Ameche and Bloom finally settle on Dignitas, a Swiss nonprofit that helps people with terminal illness – including Alzheimer’s – end their lives peacefully. But Dignitas, in addition to the costs of getting to Zurich, has its own strict regulations: certifications of Ameche’s diagnosis, medical information and proof that he’s not just depressed, time-consuming hoops that must be jumped through. The couple set about making it happen, while keeping their plans from all but a necessary few. Toward the end they accomplish the final details – notes to friends and relatives that will be delivered after Ameche’s death, discussions about his wishes, plans for a few celebratory days in Zurich – which do include a celebratory moment or two – and for a friend to be there to fly home afterward with Bloom.

Bloom skillfully weaves glimpses of their romance and marriage, the good and the bad, into the story of their struggle to meet Dignitas qualifications and complete the journey. It’s a remarkable journey, remarkably well told.

(For anyone addicted to audio books, as this writer increasingly is, this one is a special treat: Bloom reads her own words. It’s as if she were telling the reader the tale.) 

Dying in Pain – or Comfort?

Photo by Sharon McCutcheon on Unsplash

This essay appears on the blog page of End of Life Choices CA, a nonprofit which I am proud to serve as a volunteer and board member. Perhaps you’ll visit the site, or at least find a little food for thought here.

When is being comfortable and pain-free not a good idea? Most of us would say never. As we humans approach life’s end, though, that question can get trickier. Or at least more complex.

 A recent court case stirred renewed discussion of end-of-life care, specifically comfort care and pain control.

Dr. William Husel, a physician with Columbus, Ohio-based Mount Carmel Health System, was accused of killing 14 patients between 2014 and 2018 by administering excessive doses of fentanyl, a powerful opioid which has become a common, and very dangerous, street drug. Prosecutors argued that he had committed murder; the defense argued that he was providing comfort and the patients – all were in intensive care units – died of their underlying disease. Dr. Husel was found not guilty on all counts in April, 2022. 

The controversy spread throughout the Mount Carmel Health System, eventually leading to the resignation of the chief executive and the firing of more than 20 employees. Dr. Husel, though acquitted of all charges, later voluntarily surrendered his medical license. But renewed discussion of end-of-life care can only be seen as a plus. All of us will face life’s end; not all of us will have given thought to what we want that end to look like. Or what choices, including pain management, we might make.

Photo by Stefan Kunze on Unsplash

“It sometimes happens that families and even caregivers are not familiar with comfort care,” says End Of Life Choices CA Board Vice President Robert V. Brody MD. This can include end-of-life care, “where the direction switches from curing disease to keeping the patient comfortable (and) can be misinterpreted as hastening death when in fact the medical literature says that keeping people at peace actually prolongs their life.” A primary care, hospice and palliative care, and pain management physician, Dr. Brody is Clinical Professor of Medicine and Family & Community Medicine at the University of CA San Francisco. He is also a leading spokesman on matters of medical ethics in the U.S. and abroad. “Dying people often need high doses of opioids to manage pain,” he observes. “This is done in an entirely beneficent way, and in no way is it meant to cause harm. Those not directly involved may misinterpret these efforts.”

As the currently popular meme goes, “It’s complicated.” This was shown in the Husel/Mount Carmel case, and countless other instances since the meme appeared years ago. While opioids are highly addictive, and one of the leading causes of death among Americans under 55, they are widely used in treating dying patients. Most of us would welcome them, if appropriate, as we are dying.

Comfort is a happy state at any age.

Dying Badly in the ICU

Richard Catabay on Unsplash

“A performance,” the physician called it. She was referring to futile treatments of a dying patient in the Intensive Care Unit performed to make the family feel that “everything had been done.”

Well, thanks but no thanks.

Does the poor dying person get a voice here? Whose body is being bashed by chest compressions, invaded with wires and tubes, unceremoniously “treated” – just because we can? If it’s ever mine (though I’ve got every possible deed & document designed to keep me out of ICUs) I will come back to haunt everyone in that room.

What brought this up again – I’ve written about futile treatments of the dying before, and probably, sadly, will again – was an opinion piece published recently in the New York Times by Daniela J. Lamas. Lamas is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston. The sentence that sent my blood pressure skyward was this: “Even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that is just that: a performance.”

I submit there is also a cost to the patient. Who really knows what “beyond pain” means to a human being?

It is gauche and unacceptable to mention the financial cost here, but I can’t help that either. We could pay off the national debt in a year or two by simply facing up to this issue. If physicians like Dr. Lamas don’t enjoy “performance treating” in ICUs, and (prospective) patients like yours truly Do Not Want all that heroic resurrection stuff done – why can’t we talk about it?

Granted, the job of EMTs and ICUs is to preserve life at all costs. But what if we, the reasonably healthy public, were to demand limitation of those costs? What if we were to demand – write it into advance directives, tell every friend and family member, maybe tattoo it onto our chests – that heroic life-preservation efforts be made only when reasonable life may be made possible?

Lamas was telling the story of a family unready to face the death of their loved one, despite the fact that “It was clear that there was nothing more that we could do. Except keep (the patient) alive until Monday.” That meant two full days of sedation, intubation and every conceivable medical procedure – including, hopefully, enough pain medication to avoid terrible suffering, but who knows, really? And for what? Or, more to the point, for whom? The essay was aptly titled “Who Are We Caring for in the I.C.U?”

If you Google “futile medical treatment” the list of articles and studies is impressive – plenty of medical professionals are as concerned as this lay writer – and one conclusion is stark: the waste of time, skills and money on futile treatment at life’s end is enormous. And for what?

Obviously there’s no one simple answer. Often as not, there’s one family member (or more) arguing for a loved one’s life to be extended even when everyone knows that death would be the kinder choice. To that not-dying person I would say, Get over it. Well, I wouldn’t say it like that; I’d say it very, very kindly because the not-dying person clearly has issues.

But we, as a society, need to get over thinking of death as the ultimate enemy and “life” as something that must be preserved even when it’s no longer living in any sense. Most of us would far prefer a peaceful death – at whatever age – to a vegetative state that is unpleasant at best and painful at worst. But only by writing those (and other!) preferences down, and talking about them out loud, will we ever diminish the sad, wasteful “performance” care of the ICU.

One healthy person at a time. Want to join this movement?

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.

 

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.

 

 

A new fight for good death

Kathryn Tucker
Kathryn Tucker

Christie White and Dan Swangard are fighting to live – and also fighting for their right to die: peacefully, at home, surrounded by those they love.

Kathryn Tucker and Nico van Aelstyn are now taking that fight to the Superior Court of the State of California; and it will be a fight worth watching.

Tucker, a distinguished attorney now serving as the executive director of the Disability Rights Legal Center, has already led a number of such battles for peace at life’s end, including defense of the Oregon Death With Dignity Act several times in the early years of that now 18-year-long success story. van Aelstyn has a similarly notable record and an award-winning history of pro bono work on end-of-life issues. Many supporters of end-of-life choice, including this writer, are optimistic about the potential outcome.

But court battles aren’t settled overnight, and White and Swangard know they may not have a lot of time left.

Christie White
Christie White

“My mother will tell you,” White remarked during the press conference announcing the lawsuit, “that from the time I took my first steps I wanted to be in control. I want to be in control. I am adamant about not wanting to die in a hospital, but at home, surrounded by my family. I want to be able to gather my loved ones and meet my death with some dignity and peace of mind.”

Since first diagnosed with non-Hodgkin’s lymphoma and then acute myeloid leukemia or AML Leukemia more than five years ago, White has undergone chemotherapies, radiation therapy and a bone marrow transplant. Because of those prior interventions, her medical options would be severely limited should her leukemia recur.

Dan Swangard, MD was diagnosed with tumor of the pancreas, with metastatic disease to the liver, and had major surgery in 2013. “Not to state the obvious,” he told the press, “but dying is something we all do. It can be loud, quiet, filled with anxiety, pain and suffering, at home or on the road. It can also be peaceful, filled with connections to people we love the most – if planned.”

Swangard has practiced medicine for 22 years. He has also served as a volunteer with Zen Hospice and at Laguna Honda Hospital in San Francisco, experiences that add to his own understanding of what a good death can be.

This lawsuit is about the possibility of a good death for everyone in California. Christie White and Dan Swangard are two good Californians who deserve such an option.

 

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

Dandelion

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?

Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.

The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.

Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.

And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.

I am less certain. Thus my argument.

In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”

Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”

After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:

Why should you have the right to insist that I linger, when I am dying?

How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?

When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?

Why should your conviction about the efficacy of your medical field trump my autonomy?

Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?

It’s my only precious life, after all. Why should I be denied control of its precious end?

 

 

 

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.

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