(Theresa Brown, PhD, BSN, RN, is a nurse and writer. Her third book – Healing: When a Nurse Becomes a Patient – explores her diagnosis of and treatment for breast cancer in the context of her own nursing work. Her book, The Shift: One Nurse, Twelve Hours, Four Patients’ Lives, was a New York Times bestseller.
Theresa has been a frequent contributor to the Times, and her writing has appeared on CNN and in The American Journal of Nursing, The Journal of the American Medical Association, and the Pittsburgh Post-Gazette. She has been a guest on MSNBC and NPR. Her first book, Critical Care: A New Nurse Faces Death, Life, and Everything in Between, chronicles her initial year of nursing and is a textbook in nursing schools across the country. This article, used with permission, appeared online at https://theresabrown.substack.com/p/for-profit-hospice-when-money-becomes.)
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Several years ago, my husband and three children and I were driving through rural Pennsylvania on a family trip and saw a billboard that asked, somewhat ominously: “Is Your Hospice Letting You Down?” It struck me as crass and opportunistic, but also revealing of how commercialized many hospices had become.
Ava Kofman’s recent exposé for Pro-Publica/The New Yorker, titled “Endgame: How the Visionary Hospice Movement Became a For-Profit Hustle” explores the contours of that commercialization and the large-scale fraud that has resulted. The article was painful reading for me since I worked as a hospice nurse, for a not-for-profit and a for-profit company. As readers of my book Healing already know, the for-profit hospice significantly contributed to my feeling of clinical burnout and moral distress.
Some history of the hospice movement will be helpful before diving into Kofman’s article. First, note the word “movement.” Profiteering by for-profit hospices resulted from hospice’s transition into a Medicare-funded business, away from a true movement that arose in large part from work done by Dame Cicely Saunders and Dr. Elisabeth Kubler-Ross. The first hospice in America was founded in 1974 in Branford, Connecticut, and is still open today, still not-for profit. In 1978, a U.S. Department of Health, Education, and Welfare task force validated hospice as a needed option for dying patients and said that it deserved federal funding. At that time, hospices were mission-driven and staffed by at least some volunteers.
In 1979 The Health Care Financing Administration (HCFA) studied 26 hospices to formalize what hospice care should consist of and to evaluate hospices’ cost-effectiveness. Ronald Reagan signed the Medicare Hospice Benefit into law in 1983, and in 1993 hospice was included in the Clinton healthcare reform plan, establishing it as part of US healthcare.
Thus, in a few decades, hospice grew from a grassroots, volunteer-dependent approach to end-of-life care to a mandated benefit with essentially guaranteed funding from Medicare. The decision to federally fund hospice care, while supported by the best of intentions, inadvertently offered an open door to entrepreneurs who saw hospice as a means to maximize profits from that secure Medicare funding stream.
For me, the phrase “grow referrals” reads like a distortion of the hospice mission.
Indeed, the growth of for-profit hospices has been unrelenting over the past few years, as the graph below (from the National Hospice and Palliative Care Association 2020 report) shows. In 2018, 69.7% of hospice providers had for-profit tax status while just 26.9% had not-for-profit status, a for-profit increase of 24.7% since 2014.
Kofman’s article further clarifies that some of the worst hospice actors are owned by private Equity companies that have no interest in healthcare beyond money-making. The for-profit hospice I worked for became much more penny-pinching and exploitative of staff after it was bought by a holding company with a diverse portfolio, which is to say, commitment to and concern for patients were subordinated to cost-cutting and profiteering.
The federal hospice benefit created a public-private dyad ripe for exploitation in a way typical of American healthcare. In the article, Kofman quotes James Barger – a lawyer for two hospice whistleblowers – describing the lack of real controls on hospice spending as “a ludicrous amount of optimism in a system with a capitalist payee and a socialist payer.”
So much of healthcare in America has this same problem: combining capitalist healthcare delivery systems – whether clinics, hospitals, the pharmaceutical industry, or insurance companies – with guaranteed federal money to support those systems. Too many people have learned how easy and profitable it is to game the system, and so they do, but systemically throughout US healthcare, not just in hospice.
Kofman’s article is well-researched and important, but it’s also open to critique because it didn’t give any counter-examples, running the risk of turning patients in need away from effective, compassionate hospice care. A good friend who is a hospice executive and a nurse shared her dismay with the article, saying she worried it would make patients and family members already struggling with a life-ending diagnosis resist hospice, denying themselves helpful and needed EOL care. Katie Smith Sloan, president and CEO of Leading Edge, the association of nonprofit providers of aging services (including hospice) published a good response to Kofman’s article where she acknowledges the proliferation of for-profit hospices and accompanying fraud. You can read the entire letter here, but below I quote her excellent summary of the real problem – lack of quality care for all the frail elderly:
“Good hospice care, because of its holistic, patient- and family-centered compassionate approach to the dying, is a godsend. Bad care and true fraud in this valuable benefit are intolerable. Change is needed. Reform must promote high quality care, including the right services in the right quantity, and eliminate opportunity for misdeeds. Most importantly, our country is in desperate need of a system of long-term services and supports that is responsive to how older adults live and die now.”
Aye, there’s the rub: Here in the US, we do not support elderly patients with chronic illnesses who need constant care, which also means we do not support their families. Instead, we rely on billions of dollars of free care primarily provided by female relatives. We have created a system of elder care ripe for gaming by the greedy and unscrupulous that leaves many struggling patients without the healthcare they need – a true moral failure.
In the meantime, though, good hospices exist. For anyone in need of hospice care, begin your search for it by looking for a not-for-profit company. That is not a guarantee of quality, but it’s a good stand-in for commitment to the hospice mission. Also, remember that you can switch hospices at any time – settling for care that is deficient is not required.
If you can’t find a quality hospice in your area, see if you can work with your primary-care provider or a palliative-care physician or nurse practitioner to prescribe the medications your dying loved-one needs. That advice will be hard for anyone without health insurance to follow, but Americans over 65 can get Medicare, and I suggest pushing for the care needed to help patients die comfortably, and at home if that is their preference.
If readers have ideas to add to my suggestions, please leave a comment. You can also forward this column to colleagues in hospice and see what ideas they may have to help dying patients secure the care they need. I hate to own up to the jury-rigging that can be required to get appropriate end-of-life care, but since that’s true, I encourage people to share what did or did not work for them, or what they have seen work in their own clinical practice.
The cartoon below from Roz Chast is ironic, but also a good reminder of what actually matters at the end of life. Well, what she says, plus maybe oxygen, some morphine and Ativan, a hospital bed that works, and a hospice nurse who really cares – they do exist.
(Please scroll down to comment, and feel free to share our blog posts with others who may benefit from them.)
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.
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The Los Angeles Times exposed for-profit hospices about two years ago. There was, to my knoweldge, no response from any Federal agency. I agree, something needs to be done. Oh, btw, there are a few good for-profit hospices. Also, always, always ask a hospice if it is a non-profit or not.
I am a social worker who has worked for a hospice that was part of a nonprofit hospital, a freestanding nonprofit hospice, and a hospice that was part of a Visiting Nurses Association. In my limited experience, all hospices are driven by their bottom line – the nonprofit depends on donations and volunteers, the for profit depends on referrals. My parents, my daughter-in-law, and my husband all received the benefits of hospice care at their end of life, from hospices that were variously for profit or nonprofit . It is not whether a hospice is for profit or not-for-profit that matters, but what services are offered and how skilled the staff is. Volunteers may or may not be good at what they do. People need to interview hospices and find the services they need, and not decide on the basis of financial structure.
What questions do I ask and what do I look for in a “Good care” hospice. They ALL tell you about the wonderful services they have.
I’m really glad you asked this — knowing what questions to ask can make such a difference during this often critical time. Things like how often nurses visit, how symptom crises are handled after hours, how pain and anxiety are managed, and what support is offered to caregivers can reveal a lot about a hospice’s philosophy of care.
I work with families facing these decisions and wrote “How to Choose the Right Hospice” after hearing repeatedly that people wished they’d known what to ask sooner. It’s simply meant as a practical, compassionate guide if that would be helpful to you.
Where is your guide available?
I’m not sure if it’s appropriate for me to post my link, but if you click on my name, it should take you to my website. The PDF version is available on my website and the softcover book is available on Amazon.
“ It is not whether a hospice is for profit or not-for-profit that matters, but what services are offered and how skilled the staff is.” Ms White knows what she’s talking about. And most of us civilians don’t know what services to ask for much less know how to evaluate staff skills levels. Perhaps this is a productive area for additional investigation and support for Society members and fellow travelers.
When our Primary Care Physician told me that my husband Walt was ready for hospice, I was in shock. Walt had Alzheimer’s dementia and was in his 7th year post-diagnosis. He was in one of the later stages of dementia (probably Stage 6) but still walked the dog around our circle without assistance (but with discreet supervision), still communicated in a friendly demeanor to our neighbors and infrequent visitors, and was still able to eat and drink on his own (albeit, he couldn’t use utensils).
So, it was a surprise when our PCP told me that we should have him evaluated for hospice. Luckily, our PCP could stay on as his primary physician, and I accepted whatever hospice recommendation she suggested – without question or examination. I was already exhausted and knew we were in for rougher physical and emotional times. We enrolled him none too soon: he quickly became paranoid, agitated, and hallucinatory. Now, we were in crisis mode.
It never occurred to me to research hospices prior to our need for one, but I have come to understand the importance of doing so. I recently read a short book with a workbook component, How To Choose the Right Hospice, by Melissa Wood, an end-of-life doula. She walks us through the steps of selecting a hospice and offers advice to consider before the crisis when there is a scramble to find hospice care. For example, I knew that there were for profit and not-for-profit (NFP) hospices. I assumed not-for-profit hospices were inherently better. At least with not-for-profit hospices, you know they are not money hungry and focused on signing up as many people as possible. But with that also comes the fact that they may not have the budget to have adequate staffing so medications could be delayed in being delivered…maybe a nurse can’t come as often as a for-profit one. And I was surprised to learn that although Medicare/Medicaid generally picks up all costs when hospice begins, there could be unexpected charges depending on the hospice and the service. Melissa walks the reader through the questions to ask when interviewing potential hospices (she recommends interviewing at least 3).
With my husband, I waited until the cusp of the crisis. I got lucky, mostly due to our superb primary care physician. But I should not have left it to luck. If I’d had this workbook, I would have been much more prepared, and I believe it would have helped with the emotional weight of my loss.
My comments are from a longer substack post shared a couple of days before Theresa’s excellent article: https://open.substack.com/pub/beverlythorn/p/when-its-time-for-hospice?utm_campaign=post-expanded-share&utm_medium=web.
Thank you, Bev — I really appreciate you sharing that here. My hope in creating that resource was simply to help families feel more grounded and empowered during conversations that can otherwise feel overwhelming.
I agree with the earlier comment about the usefulness of Ms. Wood’s book. I was also told about a medicare.gov resource (https://www.medicare.gov/care-compare) where hospices can be searched by area and has a family rating system. Not much detail as to what is behind the ratings, but it can be a place to start. I also am an avid reader of https://hospicenews.com. So much has changed in the business of health care and end of life care over the years. It appears the business aspect might be nudging out the care when it comes to hospice. Reinforces the need to study up sooner than later. Good article, good comments. Thanks to all.
Thank you for this thoughtful and honest piece. I appreciate the way you acknowledge the real harm caused by profiteering in hospice while also reminding readers that good, compassionate hospice care still exists and matters deeply.
In my own work supporting families before and during hospice decisions, I see how overwhelming it can be to know what questions to ask or how to assess quality beyond the marketing. Your emphasis on mission, not-for-profit status, and the ability to change hospices is such an important reminder. Writing like this helps people approach hospice with discernment rather than fear, and keeps the focus on humane, values-aligned care at the end of life.
This is such an important conversation. As a grief counselor, I see the downstream effects of both good and bad hospice care on the families I work with. When hospice is done right, families feel supported not just during the dying process but in the weeks and months after. When it’s done poorly, it adds a layer of trauma to an already devastating experience.
One thing I’d add is that good hospice programs understand that end-of-life care doesn’t end at death. The bereavement follow-up, the connection to grief resources, the encouragement to honor and remember the person who died — these things matter enormously. I’ve worked with families who felt completely abandoned the moment their loved one passed because the hospice had no real grief support infrastructure.
I founded myfarewelling.com partly because I kept meeting bereaved families who had no idea where to start when it came to creating lasting tributes for their loved ones. Having somewhere to channel that love after loss can be genuinely healing. Thank you for this article and for keeping the spotlight on what compassionate end-of-life care should look like.