e-Patient Dave

Power to the Patient!

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The hard, hard work of supporting a death

monochrome photo of statue
Photo by Alain Frechette on Pexels.com

Much has been said about dying and about how hard a death can be on loved ones. But I’ve never seen anything like this email, which I received this morning. It’s from Myra Isaacs and Jan Oldenburg, who became the primary caregivers and care organizers for “Mighty Casey” Quinlan, who died April 25 after a month in a skilled nursing facility under the supervision of hospice.

In the past I’ve seen bits and pieces of the many tasks listed here but holy cow, when it’s all put together, it’s sobering. It’s a lot of work, at an unhappy and often stressful time.

I myself was not with them at Casey’s side in Richmond – I’m just the messenger who was blown away by this email and asked to publish it.

[Notes: “Mary” was Casey’s given first name at birth. She never liked the name, so adopted her original last name as her first. CeCe (Cecelia) is her sister.]

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Join my live Q&A on “Patient Design” with The Medical Futurist – Tuesday noon ET

This is going to be fun: a live, unscripted, free-for-all “ask me anything” YouTube event on the subject of Patient Design. At noon ET on Tuesday, March 21, just go here. Or go there now and click the little “Notify me” button at bottom left. There’s no registration required, but you can sign up here on EventBrite for reminders.

The host is “The Medical Futurist,” Bertalan Meskó, in Budapest. I’ve had a long history of collaborating with “Berci” (his nickname); my first blog post about him was 13 years ago yesterday, he endorsed my 2013 book Let Patients Help, and I’ve lectured at his course at Semelweiss University.

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Dump the jive from JPM & VIVE: seek real change with me at NextMed Health

I’m among the advisory vanguard for NextMed Health, and I’m hoping to speak there too. I hope you’ll come. Register here, or email me for a discount code.

Daniel Kraft’s events are different.

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Integracare Assisted Living charged us full price. Severely understaffed, they stiffed us.

Recently I’ve posted about horror stories that have happened as investor-driven chains get into hospice (here) and nursing homes (here). More broadly, nursing homes and assisted living are called long-term care, aka LTC.

For our mother and family, LTC has meant Less Than Caring. Last night, I posted My family’s disastrous experience with a growth-driven long-term care company, starting with this:

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.

Many people asked who it is, and we’re ready to say: the chain is Integracare, and the local facility near Mom’s home in Annapolis is Bay Village.

Here’s how they advertise themselves. It does not in any way match our experience.

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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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