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

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 YorkerEndgame: 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.


Last Flight Home

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.”

Ondi Timoner with her father

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.

Dying in Pain – or Comfort?

Photo by Sharon McCutcheon on Unsplash

This essay appears on the blog page of End of Life Choices CA, a nonprofit which I am proud to serve as a volunteer and board member. Perhaps you’ll visit the site, or at least find a little food for thought here.

When is being comfortable and pain-free not a good idea? Most of us would say never. As we humans approach life’s end, though, that question can get trickier. Or at least more complex.

 A recent court case stirred renewed discussion of end-of-life care, specifically comfort care and pain control.

Dr. William Husel, a physician with Columbus, Ohio-based Mount Carmel Health System, was accused of killing 14 patients between 2014 and 2018 by administering excessive doses of fentanyl, a powerful opioid which has become a common, and very dangerous, street drug. Prosecutors argued that he had committed murder; the defense argued that he was providing comfort and the patients – all were in intensive care units – died of their underlying disease. Dr. Husel was found not guilty on all counts in April, 2022. 

The controversy spread throughout the Mount Carmel Health System, eventually leading to the resignation of the chief executive and the firing of more than 20 employees. Dr. Husel, though acquitted of all charges, later voluntarily surrendered his medical license. But renewed discussion of end-of-life care can only be seen as a plus. All of us will face life’s end; not all of us will have given thought to what we want that end to look like. Or what choices, including pain management, we might make.

Photo by Stefan Kunze on Unsplash

“It sometimes happens that families and even caregivers are not familiar with comfort care,” says End Of Life Choices CA Board Vice President Robert V. Brody MD. This can include end-of-life care, “where the direction switches from curing disease to keeping the patient comfortable (and) can be misinterpreted as hastening death when in fact the medical literature says that keeping people at peace actually prolongs their life.” A primary care, hospice and palliative care, and pain management physician, Dr. Brody is Clinical Professor of Medicine and Family & Community Medicine at the University of CA San Francisco. He is also a leading spokesman on matters of medical ethics in the U.S. and abroad. “Dying people often need high doses of opioids to manage pain,” he observes. “This is done in an entirely beneficent way, and in no way is it meant to cause harm. Those not directly involved may misinterpret these efforts.”

As the currently popular meme goes, “It’s complicated.” This was shown in the Husel/Mount Carmel case, and countless other instances since the meme appeared years ago. While opioids are highly addictive, and one of the leading causes of death among Americans under 55, they are widely used in treating dying patients. Most of us would welcome them, if appropriate, as we are dying.

Comfort is a happy state at any age.

Dying Badly in the ICU

Richard Catabay on Unsplash

“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?

You can’t quite find the right words?

Photo by Aamir Suhail on Unsplash

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

Staring into the Great Beyond

Greg Rakozy on Unsplash

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

Partnering for Today and Tomorrow

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

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

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

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

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

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

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

# # #

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

Cycles of Living and Dying . . .

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

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

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

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

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

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

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

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

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

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

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

 

 

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