It is right there on the website: 100% of the people in the world are younger than I am; 0% are older. The French Institute for Demographic Studies told me this. I found it more than a little disconcerting. But could I argue with INED, a public research institute specializing in population studies, working in partnership with national and international academic and research communities?
One teeny reassurance was in the minuscule black tip of the still-alive-and-kicking graph of the world’s population. It looked like there had to be a few remaining others this old. That, plus the fact that I do have an actual friend or two still very much alive in their later 90s.
So I clicked myself over to percentages for the U.S. and lo! the numbers looked a little better: 1% of the people in the U.S. are older, even, than I am. Whew. Do we care if 99% are younger? Nahh, we one-percenters are happy to occupy that tip of the iceberg. At least we, and it, are still clinging to the precipice.
All this came about thanks to my fellow WordPress blogger Neil, who grouses more about being old at 77 than I think should be permissible.
“My status as an ancient has been made crystal clear to me,” Neil wrote, referring to INED’s revelation that 97% of the world’s population is younger than he is. He should grouse? He even admits to being “still nicely functional, still pretty much an ace at stumbling gracefully through life.”
Which brings us back to the whole demographic study business. At no point are the trends going to reverse. However more (or fewer) babies appear in any given 24-hour span, except for those who leave the planet for the hereafter, every one of the rest of us is another day older.
Perhaps the only answer is to ignore wherever we are on the percentage scale and focus on the 24 hours. Aim to do the right things, Neil suggests. Seek justice. Do a little good somewhere. Love your neighbor.
Smile when the sun goes down; it’ll come up tomorrow, whether you and i do . . . or not.
I’ve just finished an obituary of sorts for my friend Laurie, who died yesterday afternoon, slipping quietly into an ever-deeper sleep with those she loved best beside her. We should all, eventually, be so lucky.
The way you know you’re dead, in today’s senior living communities, is that your picture goes up on the hall table. Laurie and I laughed about that just last week, when I was saying I’d work hard at writing something elegant to go beside her photo. From somewhere in the ethersphere I am certain she’s getting the last laugh.
Elegance was easy to come by in this case. A decade ago Laurie had shepherded her physician husband through a descent into dementia, managing to keep him at home in their apartment until his own relatively gentle demise. They had raised two daughters and led a full, good life.
One daughter was extremely close to her mother, as was her wife, a particularly beloved daughter-in-law to Laurie.
So the first thing they did, en route to the Good Death, was to talk frankly and in detail about what exactly Laurie wanted. At 91 — precisely the age of this writer — Laurie enjoyed being with friends and family, walking her San Francisco neighborhood, reading and listening to music. She could still do most of these, but recent illnesses were imposing limitations.
We talked, occasionally, of how she felt her quality of life had diminished. Because of my volunteer work with Medical Aid in Dying, which is legal in our state (and 9 others plus DC,) we talked a good bit about that option — which she said she would choose over any painful & debilitating end.
A few weeks ago an intestinal issue sent Laurie to the hospital. Surgery would be required, the doctors said; and it would be a high-risk procedure.
No thanks, said Laurie, I think I’d rather go home to die in peace.
Which was exactly what she did. With a hospice bed positioned so she could look out at the distant mountains, a TV set she mostly kept turned off and flowers on the windowsills, she made herself comfortable. There was morphine for pain, but she had almost none.
There’s a name for this way to die: Voluntary Stopping Eating and Drinking (VSED.) The intestinal issue had spelled the end of her eating; stopping drink hastens the process. A popsicle-like swab was by her side to prevent any discomfort from thirst.
For a week, friends stopped by. We’d tell her how much she had meant to us; she’d return the sentiment — but nothing faux or flowery: “We really didn’t know each other that well,” she said to one visitor. “But I remember a funny thing you said not long ago . . .”
Sometimes, as the days wore on, she would fall asleep mid-sentence. Nobody cared.
Ten days after her return from the hospital Laurie’s sleep simply deepened and her heart and breathing stopped. Her two beloved daughters were holding her hands.
This marks the official end of my 90th birthday celebration. Please help me celebrate #91.
All I want for my birthday is for EVERYONE in the State of California to know of the legal right to Medical Aid in Dying. Easy peasy present for you to give me and everyone you know and love in California! (And/or 10 other states, more on that below.)
SUCH A CRITICAL HUMAN RIGHT, AND WE DON’T KNOW WE HAVE IT?
Before the California End of Life Option Act took effect, on June 9, 2016 (another birthday to celebrate!) I spent a good 5 or 10 years of my life working to make it happen. Pulling on yellow T-shirts, roaming around Sacramento, the whole activist thing. Gov Jerry Brown signed it into law, said he “couldn’t deny (Californians) the right.”
AT LEAST EVERYBODY SHOULD KNOW WE HAVE THIS RIGHT, RIGHT? A mere 25% of the good citizens of California even know such a right exists. Please help change that statistic.
My favorite California nonprofit, End of Life Choices CA, helps people know & understand all of their legal end-of-life options. (Among a LOT of other good works.) Other states, in addition to Washington DC, where MAiD is legal are Maine, New Jersey, Vermont, New Mexico, Montana, Colorado, Oregon, Washington, California, and Hawaii. Maybe you want to help some of them know their rights!
Meanwhile, for my birthday this year, please visit our website, send the link to a friend or two (or 3 or 4,) post a note about the CA End of Life Option Act on Instagram. Facebook. X or whatever it is now. Tik Tok if you’re that savvy. Spread the good word is all I’m asking.. . but you’re welcome to Like our FaceBook Page, Join our Volunteer Team, Invite us to speak to a community group or donate. Donations are always welcome, even when it’s not my birthday.
Several weeks ago I lost the last of my three older sisters. Condolences are still coming in almost every day via calls and notes and emails. In response I’ve often explained that while I’m feeling extraordinarily sorry for myself — much of my lifelong identity has been as the youngest of four: The Moreland Girls — I do not grieve for my sister Helen.
Helen, I am quick to say, was greatly beloved. By her four children and twelve grandchildren, by a host of friends and other relatives, and very particularly by me. I was her Franciscavichy; she was my Helenchen. Though we’ve been geographically separated for most of our adult lives by thousands of miles, we wrote (yes, old-fashioned notes and letters) and emailed often, and spoke on the phone at least every few weeks. A visit to her western New York retirement community home during the pandemic break of 2021 and again in the fall of 2022 were highlights of those years.
I just don’t mourn for Helen.
The Moreland Girls circa 1940s, bookended by Helen and me (Author photo)
Some years ago, not long after the death of her husband, Helen began to talk about how she didn’t want to “linger.” Her husband had lingered.
When he was diagnosed with Parkinson’s in his late 60s they called to say they were going out to celebrate. He had suspected dementia, she’d thought he might have a brain tumor, and they both believed Parkinson’s a far better affliction.
His physician had said my brother-in-law could expect to have “10 good years,” and they said with one voice, “We’ll take it!”
What nobody talked with them about was how many bad years he would have, and how bad they would get. My brilliant, witty, gregarious brother-in-law had spent his life in academia but spent his last years in hell, slowly losing his mobility, his speech and eventually all physical or cognitive function.
I knew exactly what Helen meant when she spoke of not wanting to linger.
More recently she took to saying things like, “This isn’t living.” Life, for her as well as for the two of them during their long and eventful marriage, meant going to dinners and lectures and events with other bright minds, singing in the Boston community chorus they founded, attending concerts and operas and plays.
I often quipped with Helen that she might consider taking up prayer — she was a determined atheist — so she could pray when she went to bed that she wouldn’t wake up. Instead, she simply wished it.
Once, after feeling bad all day, she was so certain of this likely happenstance that she left a long message on my answering machine about what a wonderful little sister I’d always been; she wanted to let me know that in case she didn’t wake up. (A lovely message to have now forever.)
Over decades of working as a volunteer with hospice, an AIDS support group in the 1990s and currently End of Life Choices CA, I’ve seen some tragically bad deaths, and more than a few you’d call Good Deaths: peacefully in one’s own bed, surrounded by loved ones.
Helen finally got the good death she wished for. Her physician daughter came over to rub her back when she went to bed, after a day of feeling generally low. The next day she didn’t wake up.
Helen was 95. We should all sign up for this: resting in peace like my Helenchen.
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FOR SOME EXCELLENT HELP WITH MAKING YOUR OWN END-OF-LIFE WISHES KNOWN, SEE THE RESOURCES TAB AT WWW.END0FLIFECHOICESCA.ORG (EVEN IF YOU DON’T LIVE IN CA!)
(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.)
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.
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!
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.
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. And 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.
“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.
And 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.