End-of-Life Archives - Page 2 of 8

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.)

End-of-Life/General interest

August 7, 2022August 7, 2022

Should the pope open a WordPress blog?

by Fran Johns

I seldom agree with the good Pope Francis, although we do share a name. (It’s spelled with an ‘i’ for the Franks of the world; Frances is for the Frans & Frannies. This is an educational essay.)

Our disagreements include:

The pontiff would have just about every pregnant woman in the world carry that fetus to term, without a nod toward what else is going on with that woman, her life, her health or her concern for a fetus that’s not viable — all things that seem worth considering before we just ban abortion, period. He and I do read the same Bible, which, by the way, does not mention abortion.

The other cause with which I am deeply involved, the right to control one’s final days when one is near death, is opposed at every turn by Pope Francis and his otherwise perfectly respectable church. Happy side note: In California we have the End of Life Option Act, which was signed into law in 2015 by deeply religious Catholic Gov. Jerry Brown. Gov. Brown opined that he didn’t know if he’d want to make such a choice — using legal Medical Aid in Dying — himself, but didn’t think he had the right to deny others such a choice. And bless his Jesuit heart.

So I follow the goings-on of the aging pontiff with a degree of fellow-Christian skepticism. But here he is, in a recent New York Times, urging compassion for the aged. I would definitely be in agreement with the Vatican on this one; surely we can all get on board for compassion.

As the story evolved, though, the pontiff kept throwing in phrases like “spending time with the old forces people to slow down, turn off their phones and follow a deeper clock;” or “there is a gift in being elderly, understood as abandoning oneself to the care of others.” Full disclosure: I am older than the pope. This is admittedly VERY old, but such is life. Seeing photos of Francis in a wheelchair when I’ve just finished a three-mile walk around the hills of San Francisco evokes a degree of compassion from yours truly.

I just resist giving The Old a blanket bad rap of total decrepitude. Some of us (not me) are still running corporations or making scientific discoveries. Some of us (not me) are still running marathons. Some of us are agitating for reproductive justice, end-of-life choice and world peace — all of which are compassionate endeavors.

Maybe the pope should start a WordPress blog?

End-of-Life

July 16, 2022July 16, 2022

Dying in Pain – or Comfort?

by Fran Johns

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.

“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.

End-of-Life/General interest/Health

March 21, 2022March 21, 2022

Dying Badly in the ICU

by Fran Johns

“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?

End-of-Life/General interest/Humor/Optimism Collection/seniors

February 21, 2022February 21, 2022

A Love Letter to Allan Karlsson

by Fran Johns

Even if he’s a little older than I am

How do you thank a storybook character?

I need to send a giant hug to Allan Karlsson. You know, the 100-year-old man.

Yeah, that one, the one who climbed out the window and disappeared. (If you haven’t read it, just go pick up a copy of The 100-year-old man who climbed out the window and disappeared.Skip the movie, read the book.)

Allan, who climbed out the window to escape a sappy birthday party in his Swedish nursing home, is my new BFF. I owe him big time.

I read the book (as have more than five million others around the globe) several years ago, but recently decided to listen to it through my earbuds while walking around San Francisco – something I do most days for three or four miles. So people gave me strange glances, as I burst out laughing in the middle of the crosswalk. It was entirely worth it. My friend Allan lifted me out of the doldrums, obliterated the daily news and generally made life better for weeks.

Hard as it is to choose, here are two favorite messages from my favorite fictional geezer:

Teetotalers (I’m one, thanks to unfortunate conflicts with booze) are generally a threat to world peace. And – this next is a little hard to condense, but until you get hold of the book:

Allan and friends at one point are raking in profits through sales of hundreds of beautifully produced Bibles that they fished out of the trash. Why were they trashed? (Spoiler alert!) Well briefly, the typographer slipped in an extra verse at the end of the book, creating a final sentence (Revelation 22:22) that reads And they lived happily ever after.

Why not?

I do try very hard not to threaten world peace. But thanks to Allan Karlsson, and his Swedish author/creator Jonas Jonasson, I am laughing more happily ever after.

Authors/caregiving/End-of-Life/General interest/Lifestyle

April 9, 2021October 20, 2021

You can’t quite find the right words?

by Fran Johns

RECOMMENDATION

Someone you know has just lost a spouse, a parent, a child? A friend is going through a difficult divorce? Perhaps you know a family member of one of the 550,000+ Americans who have died of Covid-19 since the pandemic upended our lives?

You need this book.

Dana Lacy Amarisa, who spent decades as a marketing writer in the tech world, was long empathetic with fellow humans in all of the above categories. As it happened, in those same years she suffered unimaginable losses herself. It was definitely the hard way to learn, and the long way to edit and rewrite; but Amarisa has just released a book that answers the stumbling- block question encountered by 99% of those listed above: “I just don’t know what to say . . .”

Amarisa’s little book – it measures four by six inches and is less than a half-inch thick – is titled Condolences Pocket Guide: What to Say and Not to Say to Grievers. Most of us have, at some point in time, managed to say the abominably wrong thing, or – worse – stayed silently absent because we didn’t know the right words. Now there is a guide to fixing that problem forever.

In spare language throughout the book Amarisa mentions her own losses. An infant daughter. Amarisa’s father’s death soon afterward. An eight-month-old son later lost. Divorce. Emergency surgery and a broken hand. Those experiences first taught her about the pain that can be inflicted by the wrong words, or by silence, as well as the comfort that the right responses can bring.

But Amarisa puts herself in our shoes and walks along. “Using pat condolences,” she writes, “is like trying to put out a house fire with a squirt gun. And grievers resent us when we do this.” Or – “Grievers need our heart. Unfortunately, most common condolences give grievers our mind instead.” Snippets of very good advice begin the short chapters in these ways. “Don’t push, insist or advise. Let them tell you what they need, and let that be enough.”

Condolences Pocket Guide manages to avoid the pitfalls of many “advice” books (the genre doesn’t quite apply) in never getting preachy or cloying or accusatory, or going in all those other directions that can quickly turn us off. Instead, it sticks closely to specific, recognizable situations and speaks without inflection. To help you avoid missing the point it also features thumbs-up or thumbs-down graphic illustrations throughout.

Amarisa covers the spectrum of grievers and condolers: what to say (and not to say) to kids, to casual acquaintances you run across in public, to someone whose loss is many months past. Ensuring its accuracy, Condolences Pocket Guide was written “In consultation with Dr. Alan Karbelnig, PhD Psychology and Dr. Carlos Bush, MD Psychiatry.”

It may be the collective grief we have all experienced since the pandemic hit. Or it may be having had one president utterly unable to express empathy followed by another president exquisitely adept in reaching into the hearts of his fellow humans. For whatever reason, it seems unlikely that anyone today wouldn’t identify with at least a few of the situations addressed in this compact little guide. But grieving and potential responses have been a dilemma since about the time civilization started trying to be “civil.”

In 2003 this writer published an essay on Beliefnet.com – then in its early days as a nonsectarian spirituality website – titled But I don’t know what to say. I remember being fairly pleased with it (I am easily pleased, especially if it’s something I wrote) although a copy does not seem to have survived. Subsequently I sent my agent a carefully crafted proposal for a 10-chapter, 60,000-word book on interacting with those who’ve suffered losses. The outline and proposal for that tome do remain in my files, along with a brief agent-client correspondence littered with phrases like “marketability” and “limited audience appeal.” I will look back on this as having been ahead of my time (the kindest way I have of looking back.) But I am now happily shredding the whole folder.

Dana Lacy Amarisa has said it all in 74 small pages.

This essay appeared earlier on Medium.com

Death and Dying/End-of-Life/General interest/Health/Lifestyle/Optimism Collection/San Francisco/seniors

March 26, 2021October 20, 2021

Downsizing: The incredible lightness of being

by Fran Johns

On moving from a four-story, century-old Edwardian into a 1600-sq-ft condo eight years ago I wrote a lengthy feature for the local newspaper (The New Fillmore, May 13, 2013) titled “Lessons Learned from Downsizing.” It drew editorial applause and a bunch of affirmative comments. But it seems not to have sunk in all that well.

I am back in the downsizing business. This time around it is partly a matter of trying to get organized, but despite the donating/tossing/selling/shredding activities of 2013 I am once again (or still) overwhelmed with Stuff. You don’t have to be a Marie Kondo drop-out to know how quickly Stuff can overwhelm. (I applaud every KonMari success story out there, but frankly never got past Step One.)

Here is the Big Truth: downsizing is good for the soul. Whether it’s moving from a 4-story Edwardian into a 3-room condo or reducing a tall pile of photo albums into one small box, there is a lightness akin to joy in the afterglow.

Looking back on it, there was some pretty good advice in my 2013 article. But as it ran to something over 5,000 words I’ll spare you the whole thing. (Digital copy on request.) I itemized its wisdom in eight lessons learned, which included: Treasures are your enemy; and The Fast-Disposal Plan: put it on the sidewalk with a large sign taped to it reading FREE. Also, even eight years ago much of what is cluttering up the planet (and our lives) could be digitized and made to disappear.

Downsizing is probably good for the soul at any age. What’s your teenager going to do with that wall of blue ribbons from hockey games or dressage events? Maybe one Little League trophy could be representative of the other 57 after the other 57 go to the Goodwill? Or wherever the trophies of our youth go to die. And that, of course is the other half of the Big Truth: wherever our souls go when we leave planet earth, our Stuff remains.

Award-winning (multiple major awards at that) author Ann Patchett confirmed my theory of the Big Truth – this writer uses any crafty means of mentioning herself and Ann Patchett in the same sentence – in a recent, reflective article in The New Yorker. Letting go of an old manual typewriter was particularly problematic for Patchett, as it was for me. She had several more of these treasures than I, and solved the problem by keeping two that had maximum meaning and giving another to a delighted eight-year-old. I solved mine by giving Pearl the Pert Pink Portable to my daughter, in whose family room it is respectfully, somewhat regally, displayed. Although Pearl will live forever in my heart for getting me through college and launched into my literary career, she is undoubtedly happier on display in a room of constant socialization than on my dark closet shelf. (Patchett noted the tendency to anthropomorphize our treasures.)

Back to the issue of departing souls and remaining Stuff. “I was starting to get rid of my possessions, at least the useless ones, because possessions stood between me and death,” Patchett writes. “They didn’t protect me from death, but they created a barrier in my understanding, like layers of bubble wrap, so that instead of thinking about what was coming and the beauty that was here now I was thinking about the piles of shiny trinkets I’d accumulated.”

Disposing of the shiny trinkets, along with the ancient documents and the favorite jeans from the 1980s and the shelf of folded paper bags – there’s an unwritten law about getting rid of paper bags that came bearing bottles of wine or small gifts? – and even beloved manual typewriters is a liberating act. If the disposer has begun to realize that he or she may, in fact, die some day, it is liberating to the extreme. With every drawer-cleaning comes lightness.

I may die? Worse things have happened. At least no one will have to curse my ghost while clearing out this junky drawer.

When my beloved mother-in-law died I remember flying to Detroit with a sense of dread about dealing with her house and the trappings of 93 years. My husband was her sole survivor. But nobody had had to tell Isabel Johns to downsize. We would find in a drawer one carefully folded, tissue-wrapped sweater. In a closet, perhaps several dresses and two pairs of shoes. In the pantry, the barest minimum of canned goods and a broom clipped to the door. There were no mysterious piles of documents and receipts, no dusty boxes of unidentified photos, no collections of sermons written by her Methodist preacher husband of fifty-plus years – worthy though a few of the hundreds might have been. In lieu of Stuff, Isabel left only the enduring memories of a life well lived. And a lightness in the afterglow.

This essay appeared earlier on Medium.com

End-of-Life/General interest

January 20, 2021October 20, 2021

Staring into the Great Beyond

by Fran Johns

Since this space is often devoted to end-of-life issues, today’s essay is offered as a new and unique perspective. And in case you need a laugh. It was written by my old and definitely unique friend Bob Dodge, a fellow supporter of End of Life Choices California. Asked for identifying bio he replied only that “the author had become delusional and cynical while standing in a local Bed, Bath & Beyond. He grants no interviews and wants to avoid being crushed by requests for TV appearances, magazine articles and the like – BUT – PBS or NPR requests will be considered. Meanwhile – – – ENJOY LIFE.”

I have never thought much about the name of the chain of stores named Bed, Bath & Beyond, thinking as most would, one can find items for furnishing different rooms of one’s home or apartment. Trash cans, wash cloths, hampers, rubber thingamabobs for shower, kitchen or bathroom and now electronic security gadgets for monitoring your goldfish, pets and the creatures, like raccoons and skunks outside near your car and front door. I really don’t mind going to these stores once in a while to browse through the isles searching for an unusual item to ponder on as to why people might want to buy such an item. But, I guess they do buy them else the store would have swept them off the shelves and replaced them with something else also so bizarre that nobody wants or really needs.

Today, Friday, I had a revolutionary experience at a Bed, Bath & Beyond in Redwood City that changed my perspective of this commercial outlet and I may return on my own free will! Let me set the scene: Mary was looking for some new items for our master bathroom, like a new rug with matching hand-towels and face-cloths and a new squeegee for the shower glass. Also on her list were new pillows, none of which interested me given I tend not to notice if the rug and towels match, the shower glass is streaked or that the pillow is sweat-stained since I prefer sleeping with my eyes closed and therefore don’t see what my head is resting on. Just knowing the pillowcase is clean is what matters most to me.

Anyway while Mary is off down one of the aisles, I am standing there, masked as usual these days, gazing at the RING displays of electronic security items, trying to figure out what all the displayed gadgets do. This display is near the check-out counters and as I am standing there a voice calls out asking, “Are you ready to check out, sir?” I look up to see a young, maybe twentyish, masked female staring at me. “No, I am not ready to check out, thank you very much,” I replied. And then it dawned on me… The BEYOND part!! NO! I am not ready to check out. Come on, I am only 83 years and 10 months old and doing pretty well thank you very much! I really didn’t think I looked so bad physically that I would attract attention! I had not realized that End-of-Life issues had advanced this far and into retail establishments no less! Imagine asking potential customers if they are ready to “check out” right there in front of other customers. I would think the process would be kept a little more private. I kind of had the same reaction when I went to buy condoms for the first time in a pharmacy. “I need to buy a package of prophylactics, please”. Pharmacist: WHAT? “Oh, CONDOMS! WHAT BRAND AND WHAT COLOR?” he seemed to shout to the few others in the store. But at B,B & BEYOND it seems to be out in the open and maybe that is good for the movement.

Another thought about choices at the end of one’s life. I think there should be a hotel chain with a name something like SWEET DREAMS or THE LAST GOODBYE or maybe CHECKING IN BUT NEVER OUT Hotel. Senior citizens could pack a simple overnight bag of a few items like a small toothpaste tube, hair brush, old and well used toothbrush and a favorite pair of jammies. Then they tell the hotel clerk, “Checking in to check out”, simple as that. And they check in with confidence knowing that when check out time comes the next day there will be no line to stand in. Fait accompli.

This essay appeared earlier on Medium.com