Two Reviews: Two Fine Books on Life’s End

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

Photo by FORMAT arw on Unsplash

(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.

Partnering for Today and Tomorrow

crop diverse colleagues stacking hands together during training in office
Photo by Andrea Piacquadio on Pexels.com

Got a partner? Partnering is alive and well, and might still save us all.

Not just the individual partner (lovely construct though that is, and I miss mine!) but partnering on the local, national and global level. What’s heart-warming to see are the innovative ways being discovered for partnering while apart.

Hopefully we’ll be able to revive this at the international level. While America-First-ing for the past three years we’ve pretty much eliminated every partnership that was helping us fight climate change, slow the threat of nuclear destruction, protect the planet’s air and water, little things like that. But may we please not totally un-partner ourselves from the W.H.O. and everyone around the globe working to find COVID-19 therapies or vaccines?

But on the upside! Other partnerships are thriving, innovating and saving lives. My friends Terry and Rich, for example – she’s an artist/printer, he’s a retired physician – are partnering with nonprofits which, in turn, partner with restaurants and food sources, and together (while apart) they are cooking, serving, delivering and feeding hordes of isolated or homeless souls across San Francisco. All over America kids and young people are partnering with faith communities that partner with other nonprofits to shop, run errands and otherwise help homebound seniors. The abounding stories of generosity in partnership can get you through the darkest times.

And even for us homebound/quarantined seniors – probably the last who will be sprung free as things open up – there are new and interesting ways to partner with those on the outside world. If you’ve not already met my favorite current partner, may I introduce you to End of Life Choices California. EOLCCA has, from its beginning, partnered with individuals facing the end of their own lives and considering using the California End of Life Option Act. I’m privileged to have worked as a volunteer in this field for the past several decades, most recently with EOLCCA. Supporting someone who is dying, easing that transition however you can, is a fairly straightforward (and immensely rewarding) task. But when you can’t be there to hold someone’s hand? A remarkable EOLCCA management team quickly perfected a system using communications technology to connect key personnel, critical data and the individual volunteer in order to walk dying individuals and their loved ones through an intricately difficult time. I’ve not done this yet, but reports on early cases are uniformly optimistic and encouraging.

Here’s the bottom line: We’re better off partnered. Even when six feet apart, and hopefully back with our arms around each other one day.  Not “first” or best, solo macho or going-it-alone. Partnered.

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This essay appeared earlier on Medium.com, a good site for information and ideas that I’ve been writing for in recent months. You might want to check it out. (But my Medium thoughts will also continue to appear on this page. Thanks for visiting!

Cycles of Living and Dying . . .

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19
Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices CA, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re  California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 

 

Life, Death and Rebirth 2019

Note paperThe envelope is lying right here on my left, now looking altogether spooky. It is even stamped and addressed; that’s how close I was to getting a note into the mail.

Then the phone rang. The note was to begin, “So, how are things going? How’s Gerry? How are you holding up?” The envelope is addressed to Gerry’s wife Kathy.

Several months ago our old, dear friend Gerry, age 75, was looking after the horses on their beautiful Southern California ranch when his heart failed. They got him to the hospital, but then came the bad news: his heart could not be revived or repaired. His only option would be a transplant. The good news? Because he was strong and otherwise healthy, he was a good candidate for a new heart. The further bad news? In order to be on the transplant list he would need to remain in the hospital, in intensive care, ready.Heart in circle

Kathy and Gerry are what I would call salt-of-the-earth Good People. They are deeply religious, clean-living and hard-working, and committed to living lives of service and gratitude. Within a few days of Gerry’s diagnosis they found themselves in the unenviable position of waiting for someone, somewhere, to die. Some generous someone who had signed agreements for his organs to be donated. (It would presumably be a ‘he,’ as Gerry is a fairly big guy, and would need a heart coming from someone roughly of equal size and weight.) After talking with Kathy early on in this saga I found myself also having queasy thoughts: How hard should I pray for some good person – do bad people sign organ donor forms? – to die in order for Gerry to live? It is an across-the-board existential dilemma.

The longer he remained in intensive care, the further Gerry’s condition deteriorated. This  presented a scary picture but pushed him higher on the recipient list. In other words, the worse he got, the more urgent his need, the higher his spot on the transplant list. Another existentially fraught situation.

They waited.

New life - typewriterOn August 15 (or perhaps the hours before August 15 dawned,) a 34-year-old man died in another state. A man who was on life support in a hospital because at some earlier point he had taken the generous step of signing organ donor forms. One of Gerry’s doctors flew to that hospital, examined the heart, confirmed it to be a very good match for Gerry, and boarded another jet plane back to Southern California. Gerry was already opened up, his original heart beating – with a lot of help from outside sources – outside his body.

He is already back home. Part of the somehow endearing characteristics of these two old friends of ours is that they do not have email or participate in any social media. So it’s taken Kathy time to get around to calling friends with this lovely update.

Somewhere in the southwest a grieving family is saying goodbye to a 34-year-old they had not expected to lose. “Gerry cries every time he thinks of him,” Kathy says. “There are just no words.”Birthday candles

Other than these: “August 15th is his new birthday.”

 

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.

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