death & dying Archives - Fran Moreland Johns

December 3, 2022December 6, 2022

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

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.

Authors/Death and Dying/End-of-Life/General interest/Health/Healthcare/Medicine/physicians/San Francisco/USA

December 15, 2016October 7, 2021

Talking Your Way into a Better Death

by Fran Johns

“If you do something to my body that I do not want,” says physician/author Angelo Volandes, “it is assault and battery. But if I do the same thing to you in (a medical situation,) it is standard of care.”

Volandes thinks this last is a bad idea. He is on a campaign to change the way American doctors and patients, and indeed the country at large, understand what is done to American bodies at life’s end. He spoke of this campaign, and his new book The Conversation that outlines it, at a recent Commonwealth Club event in San Francisco. When he’s not taking time out to promote the book and the campaign, Volandes practices internal medicine at Massachusetts General Hospital in Boston and is on the faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning Decisions, a non-profit foundation dedicated to improving patients’ quality of care.

“Ninety percent of people want to die at home,” Volandes says; “most die in hospitals. There is a misalignment between the type of medical care they want and what they get.” About this unwanted care? “If you’re in the hospital and get unwanted care you never bargained for, I still get paid for it.”

After watching too many patients endure end-of-life treatments he was sure they would not have chosen, Volandes started an unusual practice: taking every one of his patients to visit the intensive care unit, and some to visit the dialysis unit. Once they gained a better understanding of what some of the aggressive treatments – CPR, breathing machines, etc – actually looked like, the patients almost always moved away from “Do everything” to comfort care as their choice.

The basic change Volandes believes is needed begins with a conversation between physician and patient. Those conversations do happen, and there is now Medicare reimbursement, but few physicians find them easy, and few patients know how to inaugurate them or what to say. “Never did a senior physician have to certify that I could talk to a patient,” Volandes says. “The patient needs to know ‘What are the questions I need to ask? What are my options?’ Life’s final chapter needs to be written – but the problem is, I’m writing it (instead of the patient.)”

This writer has been advocating for individuals to write their own final chapters for over two decades. With others writing those chapters instead, the costs are monumental and unnecessary – and millions of Americans die after undergoing painful indignities they would never have chosen. Physician aid-in-dying – approved by a majority of doctors and 7 in 10 Americans and now legal in five states – is one key piece of the puzzle. But the elephant-size puzzle piece is how to get every one of us to make known, well before those “end-of-life” days arrive, what medical care we do or do not want.

Volandes’ conversations could put that piece in place. Every person alive who takes time for the conversation (and for writing it all down) will likely die a better death.

Authors/compassion and choices/Death and Dying/Dying Unafraid/End-of-Life/General interest/Health/Medicine/physicians/seniors

April 18, 2015October 7, 2021

Life: a sexually transmitted, fatal condition

by Fran Johns

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

General interest

November 12, 2013

Life & death decisions: who chooses?

by Fran Johns

Scale of justice (Photo credit: Wikipedia)

I was pleased to be included in a panel on Advance Directives recently for the Bar Association of San Francisco, surrounded by three very smart women. Organized & moderated by SF Bar’s John O’Grady, the panel included Harriette Grooh of HGA Personal Care Consultants, Sara Stephens of Good Medicine Consult & Advocacy, and Attorney Elizabeth Krivatsy. The audience — in post-event evaluations — gave us mostly all fives out of possible one to five ratings, which would be a nice touch to my resume if I had a resume. I was there as writer on end-of-life issues, and acknowledged as the wearer of two hats. My death & dying hat alternates with the abortion hat, which I explained was how never to be invited to cocktail parties.

But this panel’s focus was on end-of-life decision making: how, if we consider it, would we prefer to die? Most of us say: At home, at peace. Physician aid in dying — now legal in four states and a movement that is finally gaining ground around the U.S. — is key to peaceful death for many of us, and significant to my work in the area. But opposition to this rational, humane way to die comes from two powerful directions: The Catholic Church (NOT most Catholics, certainly not the excellent folks at Catholics for Choice) and the far right — mostly religious fundamentalists who somehow believe that pain and suffering at the end of life should never be shortened.

The issue becomes one of who chooses: the dying individual, or religious and political powers.

My hats are interchangeable. Comprehensive, justice-rooted women’s health cannot put the fetus in control and cannot take the potential decision to choose an abortion away from the individual. But opposition to this rational, humane way to live comes from two powerful directions. You guessed it: Catholic officialdom and the religious/political right.

Happily, there’s progress, slow but sure, in end-of-life justice and my hat is off to all — Compassion & Choices in particular — who are leading this battle. Unhappily, my other hat might need to be a helmet to protect against the slings and arrows of those opposed to reproductive rights.

General interest/Health/Money/Politics & Causes/USA

August 28, 2009

More on Health Care: Where the Costs Are

by Fran Johns

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.

Health/Money/Politics & Causes/USA

August 19, 2009

Counseling Improves Life's End. Surprise!

by Fran Johns

Knowledge, care and compassion really do bring peace. Why should this be a surprise? And why should a few strident opponents prevent those approaching life’s end from having this benefit?

A study appearing in today’s Journal of the American Medical Association points out the benefits of end-of-life counseling, although the widespread misinformation loose in the land may have doomed what should be a significant piece of health reform.

As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.

The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital.

The Senate bill provision axed by Finance Committee chair Charles Grassley would have allowed coverage for conversations with physicians about things like hospice care, advance directives and treatment options. But to opponents of reform, it was a handy attack mechanism. They enlisted a few standard bearers like former Alaska Gov. Sarah Palin and media darling Rush Limbaugh to twist the issue into menacing “death panels,” and in no time at all Sen. Grassley had his excuse to excise.

Losers in this are all of us. Eventually, 100% of us will die. Aggressive treatment and expensive, futile procedures are common today to that experience; compassion and peace are harder to come by.

In the new study, trained nurses did the counseling with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.

Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

Could someone please get this information to Sarah Palin?

Study: End-of-life advice aids terminally ill.

General interest

August 17, 2009

Insuring the Uninsured: A No-Brainer

by Fran Johns

I’ll call her Joan. She is 61 years old, working in real estate and living comfortably in an upscale rental apartment thanks partly to rent control. She has a small 401k and a small, steady income from shared family ownership in a stable investment property. But the real estate business, you may have heard, hasn’t been wonderful lately. Joan lives frugally, gives of her time and resources to community nonprofits and is highly respected in business and social groups. She has no health insurance.

“I would if I could,” she told me some time ago. “But it’s either buy insurance or buy dinner. I’m fond of eating.” Twice in the past year Joan has had to have medical treatment; once for a nasty wound in a bike accident, once for an infection that required an overnight hospital stay. She went to the only place available, the understaffed emergency room of a crowded public hospital. Who picked up the tab? You and I. I am happy to do so, for Joan and everyone else who winds up in these predicaments. But come on, it’s not exactly cost-effective.

Expanding coverage to those currently uninsured is only one segment of this moving-target health reform; I hope it doesn’t get lost the way other key elements seem to be straying from the scene. People like Joan would be the first to purchase insurance through any reasonably-priced plan. Unfortunately, I don’t see many insurance companies eager to offer such a thing, and I don’t know where many of the currently uninsured will go if the public option comes off the table. There were some 47 million uninsured at the latest count. Add to those the swiftly-rising numbers of independent contractors and freelancers of all sorts.

Getting non-emergency care out of the nation’s emergency rooms seems an enlightened thing to do… if we could just have a little more light and less heat in the discussion.