e-Patient Dave

Power to the Patient!

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My family’s disastrous experience with a growth-driven long-term care company

Photo of memorial tree at Quiet Waters park, next to the gazebo where she loved to sit
Mom loved to sit in this gazebo, along a tributary of the Chesapeake. Photo by my sister.

This story is not unique. Read the many comments at bottom of even worse treatment others have suffered after paying for “skilled nursing” care.

I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because of, as Pro Publica puts it, “easy money and a lack of regulation.” My first two posts were about recent articles in The New Yorker on companies that are more interested in sales growth than in caring:

As many of you know, my mother died in October. What we haven’t disclosed until now is that it happened in horror story #3: she passed after a single week of “respite care” provided by the local outlet of a growing chain of assisted living facilities.

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Healthcare’s moral crime scene, part 2: private equity takes over a nursing home

Last week I wrote “For-profit hospice is a vast crime scene, and private equity is holding the knife,” about a November article in The New Yorker article. I emphasized: “Good hospice can be immensely valuable. But there are predators.”

It doesn’t stop at hospice: in August the magazine also published When Private Equity Takes Over a Nursing Home, a superbly reported piece by Yasmin Rafiei. It’s a nasty story, with the same lesson: when for-profit investors take over a care industry, and they don’t get punished for poor “care,” the cared-for can wind up in danger. Or dead.

I believe that we as consumers need to be aware that some heartless people have gotten into the care industry. Here’s how Rafiei’s article starts:

When St. Joseph’s Home for the Aged … was put up for sale, in October, 2019, the waiting list for a room was three years long. The owners, the Little Sisters of the Poor, were the reason. For 147 years, the nuns had lived at St. Joseph’s with their residents, embodying a philosophy that defined their service: treat older people as family, in facilities that feel like a home.

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“For-profit hospice is a vast crime scene, and private equity is holding the knife”

Screen capture of New Yorker article headline

Good hospice can be immensely valuable. But there are predators.

A wise friend referred me to this New Yorker article last month about a Pro Publica investigation. I skimmed it then, and today I read it in full. It’s appalling. If anyone you know is considering hospice, or has been “invited” by a company to consider it, beware. Here’s what the friend basically said – and they were right:

For-profit hospice is a vast crime scene,
and private equity is holding the knife

Note, I’m talking (and the article talks) about for-profit hospice companies. For-profit hospice chains bill the government four times more per patient than not-for-profits, and focus on both maximizing admissions and cutting costs (i.e. cutting back on services), all the while gaming the system to barely squeak under the wire before Medicare makes them give back the money.

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2022 Hospital Safety Grades announced at Leapfrog Group’s annual meeting: excellence and the power of transparency

On Tuesday I attended one of the most inspiring events in the annual calendar of health events: the Leapfrog Group’s annual meeting and awards ceremony. I could talk all day about what an important organization this is, because they don’t just do great work, they’re getting results in the world.

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When Patients Design the Care They Want: the Boston Women’s Health Collective

A slide I often use

In August Medical Futurist Bertalan Meskó and I published Patient Design: The Importance of Including Patients in Designing Health Care in JMIR, in the Journal of Medical Internet Research (JMIR). It ties together aspects of both our work. He’s a medical futurist, less than half my age, with a clear vision of how medicine will work in a future unencumbered by today’s limits. For me, an advocate for patient empowerment, it’s rooted in patients having the power to get the care they want. Our views come together in the idea of patients designing the care they want. From our abstract:

… genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. 

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