(This article is used with permission. Fran Moreland Johns is a freelance writer for local, national and online publications whose focus is often on end-of-life issues. She is the author of “Dying Unafraid“ (Synergistic Press, 1999) and of related stories published in a number of magazines and anthologies. She holds a BA in Art from Randolph-Macon Woman’s College and an MFA in Short Fiction from the University of San Francisco. She is a board member of End of Life Choices California, https://endoflifechoicesca.org/)
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.
Okay, 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 Kofman in a carefully researched article that appears on the ProPublica site and in the December 5 , 2022, New Yorker. Endgame: How the visionary hospice movement became a for-profit hustle details one major lawsuit over one egregious case, but it 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.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
Thank you for your article. I agree that the use of hospice is underutilized. Statistics support that, with the average length of service being 24 days, many die within a week of enrollment. Jimmy Carter is a notable exception. Good luck finding a non-profit when your time comes. I’ve been a hospice volunteer for nearly 20 years, and while I prefer a non-profit for all the reasons you stated, the vast majority are for-profit, and their numbers are growing. However, they are not all defined by their lust to make money. I volunteer for two for-profits because that’s what’s available. The two could not be more different. One cuts corners, and I suspect they skirt the rules bordering on fraud with the enrollment of unqualified dementia patients. (I’ll stay until my patient passes.) The other one offers volunteer in-service meetings, strict adherence to rules and regs, only enrolls qualified patients and has a caring and available staff. In short, they are wonderful and what hospice is supposed to be about. The key is doing your homework in making the selection. I offer end-of-life counseling and give clients a tip sheet of 18 questions to ask to weed out the excellent from the barely adequate. We are stuck with for-profits, but there is no reason we can’t hire a great one for our family member.
I agree with you, Althea. This challenge is one of many that face people at end-of-life. It’s another case of “Let the buyer beware.” and another reason to have a good health care representative.
I became a hospice advocate during the AIDS epidemic when I saw the enormous difference between dying with hospice versus without it. Patients died at home surrounded by loved ones and not in an ICU, in pain or sedated and alone. Hospices were all not- for-profit in those days.
I look forward to a time when hospice is not used as a last resort but as a last reward.
Yes, for-profit hospice care usually (not always, of course) inferior to non-profit care. This is however, true for our entire medical care system. Why limit the statement to hospice care?
I appreciate the sentiment of this article. In my (rather large, metropolitan) community there are several for-profit hospices and only one non-profit hospice. Unfortunately, it is difficult to tell the difference to the point that I’m not so sure the nonprofit model is doing our community any favors. Definitely agree with the comment above – do your homework. But, I am inspired by this article to help my community do better to make quality end-of-life preparation and care accessible to all. Thank you for your insight!