Ava Kofman wrote an article on the for profit hospice industry that appeared in the December 5th issue of The New Yorker magazine. It’s a meticulously researched article detailing some of the more egregious abuses of the Medicare system for hospice payments looking at dishonest recruitment and billing practices, damage done to patients, families and the reputation of the program, and scores of shady hospice programs existing at mail drop addresses. It’s caused a bit of an explosion in the world of palliative care and geriatric medicine. Not because of the immoral and illegal acts documented – every one of us who works in the biz has our own stories – but because of the connecting of the dots to show how the shift of what was a not for profit sector to a for profit sector has pushed even good actors into bad deeds in order to serve the insatiable corporate hunger for profit.
The article begins by detailing some of the shenanigans which went on in southern Alabama after a locally run hospice chain, Hospice South was acquired by Beverly Enterprises, a large national for profit conglomerate, under its AseraCare hospice label. Ultimately, employees at the Monroeville office, appalled at corporate practices, turned whistleblowers leading to a massive DOJ lawsuit which underwent a number of twists and turns over the next decade or so. I’ll let those who are interested read the article. It can be found at the following link. https://www.propublica.org/…/hospice-healthcare….
Reading it carried me back in my career. I first became a hospice medical director in 2001 with Odyssey Hospice here in Birmingham. Odyssey was bought and sold numerous times. It’s current descendent is Kindred Hospice. In 2003, I became the medical director of Hospice South, that was looking to expand into the Birmingham market. It was, small, it was scrappy, and the people who were running the local office and were wanting me to take over the medical end of things, were determined to do things the right way. I accepted the contract and was in place when the agency opened its doors. A year or so later, Hospice South was sold to AseraCare and rebranded. We kept the same staff but we could all feel the corporate pressure to cut corners and to meet admission quotas that weren’t remotely feasible. I refused to do things in any way but the ethical and right way clinically and I and the Birmingham staff pushed back. Ultimately, AseraCare responded by closing the office rather than reduce its profit margin.
I’m in an interesting position when it comes to contract work. As a full time employee and faculty member of UAB, I can take external contracts but they are not made with me as an individual, they are rather made with UAB as an institution. Basically, an external agency can rent a piece of my time from UAB for a price. I don’t set that price, UAB does. I don’t see the money, it’s paid to UAB which uses complicated formulas to determine how much of my time and salary can be defrayed. I am therefore never actually an employee of a hospice or home health agency or case management program that uses my services and they therefore have no real power over me and my clinical decision making.
As the various senior service agencies that used to want my clinical expertise have transitioned to more and more for profit corporate models, I have been edged out. Because of my decades of experience in clinical geriatrics, UAB sets my rates on the high end of the market. The agencies want someone they can get cheaper. They just need a licensed MD and any one will do. I’ve seen more and more medical directors of questionable credentials in play in recent years. They also want people whom they can directly employ and force to toe a line in terms of clinical decision making that will best profit the company. Me with my insulation through UAB has always had the freedom to do the right and ethical thing and the bean counters in the back office haven’t really been able to do much about it other than wave the occasional empty threat in my direction. This is probably why my last hospice medical direction contract ended in mid-2020 and no one has been interested in picking me up since.
To really understand what’s going on here, we have to look back a bit at what hospice is and isn’t. Hospice as a concept was invented by Dame Cicely Saunders, an RN in the UK in the early1960s to treat all the sources of pain in terminal cancer patients – physical, social, and spiritual. She came to the US in 1963 and gave a lecture at Yale medical school outlining her ideas and philosophies which came to be regarded as the founding of the hospice movement in the US. Hospice was slow to catch on, mainly being debated in academic circles until, in 1969, when Elizabeth Kubler-Ross published her seminal treatise ‘On Death and Dying’. This turbocharged thinking about the dying process and symptom relief and changed the cultural conversations. By 1974, Medicare had established demonstration programs in hospice care. It became more widespread with federal funds becoming available and with Joint Commission standards for hospices being developed. It became a permanent part of the Medicare A program in 1985.
Hospice, as originally developed, was a specific program for managing the needs of the actively dying in an interdisciplinary manner. It was presumed that those enrolled would, in general, live no longer than six months, and that a holistic model of care would ease their passage, assist their friends and family, and provide an alternative to fruitless acute care. It was predominantly administered through small agencies run as not for profits, often with religious or public health entity affiliation. Then things started to change. Hospice came on the scene just as the corporatization of American medicine began to take off in all sectors. Its relatively low overheads and steady sources of payment through Medicare started to make them acquisition targets.
Clinically, things were changing as well. The rise of hospice coincided with the HIV epidemic with a lot of previously robust young people requiring terminal care. Hospice learned how to manage medical issues far beyond cancer and it became clear that hospice could provide benefit to many sorts of end stage illnesses – cardiac disease, pulmonary disease, renal disease, dementia. Guidelines were developed on a national level to help hospices and clinicians determine who was appropriate for hospice services and who was not. But here’s where we start to run into clinical problems. Human beings never fit into the nice neat categories that administrators create. At the same time, the enormous increase in the very aged in their late 80s and 90s were overwhelming the systems we have to provide care to the frail elder. Physicians and families would start to wonder why the robust sixty five year old with lung cancer who was still getting out every day and driving to the mall would qualify while the ninety five year old who could not get herself out of bed without assistance but who was suffering from nothing more than the infirmity of age could not. And hospice is an all or nothing program. You’re either in and qualifying for its benefits and assistance (but you give up your acute care treatments under Medicare in exchange) or you’re out and all that is taken away.
In states like Alabama where senior services are practically non-existent, hospice is one of the few mechanisms available to deliver appropriate palliative care for the aged and everyone who works in medicine is aware of that. There’s a push by patients and families and community physicians to qualify marginal people so there’s enough assistance to allow them to stay home comfortably. But then that leads to people being admitted and staying on hospice for years and, if they stabilize because of the extra medical attention, then they have to be discharged for failure to decline, starting up a cycle of decline and readmittance to hospice and discharge when they stabilize again. When relatively easy care patients who are stable appear on the hospice roles, profits go up as they are less resource intense. In a for profit environment, this pushes the system to seek out more of these type of patients and, in unethical hospices, some of the more egregious issues mentioned in the article start to happen. I had one just a few months ago. One of my VA patients, healthy but slightly confused and living in assisted living, was all of a sudden admitted to a hospice without my knowledge. He had no medical problem which would have qualified him. We found out that a hospice marketer was trolling the halls of the facility and having people sign for promises of more help then the usual staff could give them but without real explanations of what they were signing for. We called the hospice suggesting they disenroll him as he wasn’t qualified. They refused. We then called the Medicare fraud hotline. He was rapidly disenrolled the next week.
I always try to do right by patients and balance all of the competing interests – their personal wishes, their family needs, the economic pressures of insurance, Medicare and other payors, my abilities as a physician and a human. It’s just becoming harder and harder to do so as the fault lines uncovered by the pandemic become more and more rigid. How much longer can I keep this up? I don’t know. I’ve made a pledge not to retire during calendar 2023. I haven’t said anything about calendar 2024.