Medical Aid in Dying Archives - Fran Moreland Johns

September 16, 2022September 16, 2022

Two Reviews: Two Fine Books on Life’s End

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

(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.)

Covid Collection/Death and Dying/General interest/Health/Healthcare/Medicine/Politics & Causes/USA

April 3, 2020October 7, 2021

Could We Use a Little Logic in Virus-Fighting?

by Fran Johns

This space tries hard to avoid overt political issues. But today, with the novel coronavirus sitting in front of our eyeballs on waking and hanging out in our brains throughout the day – whether we happen to be infected or not – it’s almost impossible to avoid how politics impacts the reality of the pandemic. The following is offered just because it seems such a ridiculously obvious way to address the problem.

Recently, this letter of mine appeared in the New York Times:

“At 86, I am absolutely fine with dying — although I’m healthy and active and would not turn down another five or 10 years. So if I wind up with Covid-19, give the ventilator to someone else.

“What bothers me is that if our national leadership had just a fraction of Gov. Andrew Cuomo’s brain, they would follow his very rational advice to send all available ventilators to New York until the curve begins to bend, and then ship them to the next crisis area. Under that system, San Francisco would get an adequate supply in time for my neighbor and me both to survive.”

About that “give the ventilator to someone else” line. I should say up front that this is not some lofty altruistic declaration. Ventilators are not a lot of fun, and many older patients (one physician friend suggested a scarily high percentage) wind up dead on them anyway. Even for just a few days, lying still with perhaps a hole in my windpipe and for sure a tube down my nose for nutrition approaches torture, in my considered opinion. Lying still would additionally involve being unable to write, communicate or do anything else that makes life meaningful. Thus, compromised with a dangerous virus and probably soon dying alone without loved ones of any sort nearby – no thanks. Shoot me with all the morphine on hand and let me go.

I am a grateful and enthusiastic board member of End of Life Choices California. As such I’m a firm believer in Medical Aid in Dying: the right of terminally ill, mentally competent adults to ask their physicians for life-ending medications. Now legal in nine states and the District of Columbia, MAID will, I hope, eventually be “best practice” for the medical professions. Refusal of a ventilator falls in the category of mechanical aid in dying, of sorts, and why not?

The second, less esoteric issue addressed in my brief letter is simply a plea for national response to the next pandemic – which Dr. Anthony Fauci, may he long survive and prosper, tells us is likely to come with a reappearance of the novel coronavirus in the fall. Assuming it doesn’t start somewhere they’re still convinced it’s a hoax – hello, Mississippi? – maybe we as a nation could adopt a fast and sensible strategy: throw everything we’ve got at the first peep-through, and try to snuff out subsequent peeps-through as fast as supplies can be diverted from the first. My degrees are in Art and Short Fiction, not medicine or policy, and I admit to having only a rudimentary left brain. But how does this not make sense?

I’m just saying.

For more about MAID, and a lot of other good information you can use, I encourage you to visit https://endoflifechoicesca.org/.

Death and Dying/End-of-Life/General interest/Politicians

September 25, 2018October 7, 2021

John McCain & Death with Dignity

by Fran Johns

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.

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.