Respite care – The Health Care Blog

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

Jan 12, 2023

by “E-PATIENT” DAVE DEBRONKART

Continuing THCB’s occasional series on actual experiences with the health care system. This is the secondin a short series about a patient and family experience from one of America’s leading ePatients.

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.” The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring.

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.

Our mom, a 93 year old cardiac patient, had been in the hospital for ten days, and was discharged to go “home with assistance” because she was steadily improving. The respite facility’s director, an RN, evaluated Mom in the hospital, declared her appropriate for their respite care service, and took payment in full (in advance) for two weeks.

Mom’s primary caregivers were, as usual, the family’s daughters (my sisters), who had been with her throughout the hospitalization (and for countless hours every year). Mom and they discussed the discharge plans at length. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay after discharge. An important part of the decision was the website’s promise of “Strengthening during physical therapy.”

We soon found out that the facilities and understaffing were so precarious and stress-inducing, and so many things went wrong, that we didn’t dare leave her alone. To the contrary, after just one week, our mom said she was so stressed that she wanted to get out of there, and two days later she passed away.

Mom loved to sit in this gazebo, along a tributary of the Chesapeake. Photo by my sister.

Our complaint letter and management’s response

Much has been written in healthcare and other industries about how to document and report a service problem and how management should respond.

My sisters carefully composed a detailed seven page letter to management, listing everything that went wrong, from a wrong-height toilet seat, to a shower chair with missing handrail (perfect for assisted living, not!), to the Bluetooth room key that kept failing, to staff that couldn’t recognize the on/off switch on her oxygen, to stress-inducing fire alarms with nobody coming to help. That’s only a few items; their entire letter was published yesterday on The Health Care Blog (thank you THCB!).

And the facility’s response? After walking through the whole letter with my sisters on a call, their emailed bottom line was, verbatim:

“The services listed for respite program were available to your mother.”

Well, their marketing people need to talk to their facility managers.

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

Jan 10, 2023• 1

by “E-PATIENT” DAVE DEBRONKART

Continuing THCB’s occasional series on actual experiences with the health care system. This is the first in a short series about a patient and family experience from one of America’s leading ePatients.

I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because the money’s good and enforcement is lax. The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring. I now have permission to share the details of one family’s disastrous encounter with such a company’s “respite care” service.

The National Institute of Health says respite care “provides short term relief for primary caregivers.” It’s not medical care or memory care or assisted living; it’s not paid for by health insurance and it’s not regulated by the Federal government. It just replaces, for a while, the ordinary duties provided by family caregivers, so they can get a break.

The family’s mother was discharged from hospital to home. The primary caregivers were, as usual, the family’s daughters, who had been with their mother throughout the hospitalization. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay before taking their mother home.

It did not go well: ten days later their mother was dead.

The memorial tree planted by the family at their mother’s favorite park. Photo by Sarah.

The company’s website and lobby are gorgeous, of course. The reality was not. Media coverage talks about management’s desire to climb the rankings of biggest companies in the industry, as they acquire some facilities and build new ones. I believe the public needs to be alerted to such companies, in which management’s attention and achievements are much more on further growth than on delivering what they’ve already sold.