June 5, 2024June 5, 2024

Birthdays, in the 90s, Come & Go

YOU’RE INVITED TO MY CELEBRATION

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.

General interest/Optimism Collection

December 8, 2023December 8, 2023

A Poem to Calm the Soul

by Fran Johns

WHEN WORRIES OVER TROUBLED TIMES WAKE YOU UP AT 3 AM

Photo by Dan Stark on Unsplash

“You can stop worrying now; everything happened just as it had to. You did what was assigned to you . .”

We wish.

Czeslaw Milosz’ “Awakened” is a poem about death, but it speaks also to life. Especially today, when there are enough things to worry about — globally, locally and in between — to make calming poetry a necessity at 3 AM and a respite tool any other time of day.

So I keep “Awakened” handy, whether awake or asleep or in between. If peace on earth seems an elusive possibility, maybe doing what’s assigned is enough for today.

Photo by Greg Rosenke on Unsplash

In advanced age, my health worsening,

I woke up in the middle of the night

and experienced a feeling of happiness

so intense and perfect that in all my life

I had only felt its premonition.

And there was no reason for it.

It didn’t obliterate consciousness;

the past which I carried was there,

together with my grief.

And it was suddenly included,

was a necessary part of the whole.

As if a voice were repeating:

“You can stop worrying now;

everything happened just as it had to.

You did what was assigned to you,

and you are not required anymore

to think of what happened long ago.”

The peace I felt was a closing of accounts

and was connected with the thought of death.

The happiness on this side was

like an announcement of the other side.

I realized that this was an undeserved gift

and I could not grasp by what grace

it was bestowed on me.

— Czeslaw Milosz

End-of-Life/General interest

February 2, 2023February 4, 2023

Losing – But Not Mourning For – My Sister

by Fran Johns

Photo by Tim Mossholder on Unsplash

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.

Photo by Sunguk Kim on Unsplash

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.

# # #

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!)

End-of-Life/General interest

December 3, 2022December 6, 2022

Here’s to Hospice – But Not For-Profit Please

by Fran Johns

Photo by Dominik Lange on Unsplash

Hospice care: comfort, support, peace. And part of the Medicare benefit.

For years I have preached – to anyone listening, and not many people listen to my preaching – that hospice care is the best and most under-utilized piece of the entire American healthcare system. And I have urged every terminally ill person ever encountered to go on hospice sooner rather than later. The benefits include not just access to nurses and other medical professionals but equipment like hospital beds that make life (and death) easier on everyone.

Hospice got very personal to me when my husband was dying of congestive heart failure. We missed my #1 lecture about invoking the service early because it took him only a few days to go from living fairly comfortably with the disease – as he did for many years – to end stage and a quick death. We should all sign up for this. Still, the hospice bed was a godsend, as was the liquid morphine that I was dispensing as if it were root beer float.

Hospice and I go way back. In the early 1980s, having always volunteered with arts or educational organizations, I wanted to try something new. Hanging out with really sick people? Being around someone who’s dying? That seemed utterly impossible to me. So I decided to give it a try, and signed up to train as a hospice volunteer. It was, of course, the most rewarding thing I’d ever done. Since then I have worked with (and written about) AIDS support groups (in the 1990s) and assorted end-of-life nonprofits up to and including today serving as a volunteer and board member for End of Life Choices CA.

Two things I have learned and absolutely swear: hospice care is the best, and IT SHOULD NOT BE FOR PROFIT. If you’re a for-profit business in the hospice business where is your profit coming from? Duh. People. Sick and dying people, vulnerable people, the people least likely to stand up for themselves against your money-making.

OK, there are for-profit hospices that are just fine. I put that in quickly, since I have many, many friends who work with for-profits and they will have my head if they read this and think I’m implying every for-profit hospice is intrinsically evil. Not so. But the fact remains: a for-profit business is about profit, and the hospice business is about sick and dying people.

Most recently the for-profit hospice business has been indicted by ProPublica reporter Ava Kofmanin a carefully researched article that appears on the ProPublica site and in the December 5 New Yorker. Endgame: How the visionary hospice movement became a for-profit hustle details one major lawsuit over one egregious case but covers the broader topic as it relates to these abuses. Its final line quotes two men discussing the opening of a potential new hospice. Says one to the other: “We can turn a profit and split it.” And that line says it all.

The National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care & Hospice (NAHC) were quick to respond to Kofman’s article, saying it focuses on a few bad actors (which is true) and lamenting that it might discourage people from using hospice care (which would be unfortunate but hopefully is not true.)

“The hospice benefit is popular, well-regarded, and saves taxpayer dollars compared to keeping terminally ill patients in hospitals or other institutional centers of care,” the responding article reads. “NAHC, NHPCO, and our members look forward to working with federal and state policymakers to implement solutions to address the isolated problems highlighted by the article without jeopardizing access to the Medicare hospice benefit.”

One can hope.

But when I need hospice care – hopefully not any time soon, but hey, dying happens to all of us – I’m still calling a nonprofit organization.

America Collection/General interest

October 19, 2022October 19, 2022

Last Flight Home

by Fran Johns

by Fran Moreland Johns | Oct 18, 2022 | Movie Review | 0 comments

(This is reprinted from an End of Life Choices California blog just up. A wonderful story I was delighted to be able to tell; and a great movie. See it when you can!)

“It was like light from a lighthouse,” says David Timoner of the call he got from End of Life Choices California (EOLCCA) when he and his family were facing the toughest time of their lives.

“The wisdom we got from those final days we will carry with us forever.”

David’s 92-year-old father Eli was in the hospital. He had reached a point at which advanced COPD, CHF, and other health issues had become intractable and meant he would have to transfer to a care facility. But Eli knew he wanted to die at home surrounded by those he loved, and he asked about medical aid in dying. His family understood and supported his decision but didn’t know where to turn for help. Vaguely aware of a California law, they still had no idea what to do next.

“The day is a blur,” David says. “I think I googled something like ‘How to end your life legally . . .’ and EOLCCA popped up right on top. I called the number, left a message, and had a call back within the hour.” Lynne, the volunteer at the other end of the phone, was everything David needed at that moment: “Calm, empathetic, and with the answers to all of our questions. Lynne explained how the California law works and reviewed the eligibility requirements.” These, in brief, include the requirement that the patient must be diagnosed as terminally ill, with a six month or less prognosis by two doctors, must make the request himself, be able to self-ingest the medications, and be of sound mind. “Lynne also recommended that my father consider enrolling in hospice care,” David says. She was able to recommend two hospices in our area that she knew had doctors who participate in medical aid in dying. We chose one and brought Dad home.”

Ondi Timoner, an award winning documentary filmmaker, decided to record those days during the then 15-day waiting period mandated after Eli first requested aid in dying medication from the hospice doctor, until he could receive the prescription. She initially intended just to have a family remembrance. After all was over, however, she realized she had the makings of something important.

Ondi’s remarkable film, Last Flight Home, tells the full story. In the ensuing weeks, the Timoner family – Eli and his wife Lisa, their children David, Ondi and Rachel, their grandchildren and friends–would spend invaluable time at home together celebrating Eli’s unique life’s journey. The profound, intimate, loving farewell afforded Eli and his family by California’s medical aid in dying law, is the outcome we at EOLCCA wish for anyone who reaches out to us for similar help and information. That this Southern California family’s experience would be recorded by daughter Ondi and edited into a powerful documentary now being released to widespread acclaim, is a visual testament to the value of medical aid in dying.

At a screening in New York, daughter Rachel told a New York Times interviewer, “And then there is the idea that this film could change laws.” Many of us with EOLCCA worked hard to get the California law passed, and we continue to support expanding the law throughout the U.S. To have had a part in helping Eli Timoner and his family gain peace at his life’s end, and to know that they now join the fight for everyone to be able to make such a choice, is doubly gratifying for EOLCCA.

California is one of a small number of states fortunate to have a law which enables its residents to access this compassionate end-of-life option for the terminally ill. But, from call after call we receive every day, it’s clear that few terminally-ill Californians are even aware of the law, or know enough about it to even begin the process of requesting medical aid in dying from their physician.

Last Flight Home is a film we hope will receive all the top accolades in the film industry for its many-layered and beautiful story. The story behind the film has been well documented in the New York Times. It is one we urge our readers to see as soon as possible and then recommend to friends and family everywhere.

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?

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