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.

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.

• Their pretty website says “24-hour caregiver staff for support when needed.” What we actually got was a call button system that often got no response; it failed entirely when the internet went down one night; the backup system was manual walkie-talkies that depended on someone being at the front desk, which was often not true; and a repeated call one day for help with a wheelchair transfer got no response. (Imagine if we had trusted the advertising and left Mom alone: she would have been alone in her room, unable to reach anyone.)
• Their required Uniform Disclosure Statement says a staff of 27 on the 7-3 shift. What we actually got was word from one agency worker that they only had two that day, another who said (while emptying the wastebasket) “We have to check on them every shift,” another who couldn’t respond for 90 minutes because she was the one serving dinner that night. And then we experienced one continuous period of 18½ hours with not a single check-in. From 7 pm to 1:30 the next day.
• The website brags about “Senior living technology to keep you safer.” That must be the Bluetooth wristband room key that kept failing: it’s the only way to get into the room. So every time they had to take it away to fix it, my sister couldn’t leave, because Mom wouldn’t be able to get herself to the door.

“Caregiver vacations,” huh?

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.

Indeed, this place’s respite care page describes it as “short term senior care for many situations such as caregiver vacations, temporary rehabilitation post-surgery, or trial stays for a prospective resident.”

What actually got: so many worries that my sister slept every night on an air mattress on the kitchen floor.

And just to rub some salt in it, when we demanded a refund, they said they wouldn’t charge for the days after we left (thanks!!). And then they had the gall to say they wouldn’t add an Overnight Guest charge for my sister – who stayed overnight because it wasn’t safe to leave!

Yes, they advertise “caregiver vacation,” then considered charging us for not leaving Mom alone overnight when that became obviously unsafe.

The company’s true focus: grow the business

I learned a lot from googling the company: all their 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.

• Six days after Mom passed, they announced that two more locations will open in 2023. Way to go, guys – scale up that success! “Senior living is an important investment focus,” said the private equity real estate guy.
• Their Twitter feed doesn’t talk about caring; they mainly chat now and then with an investor they admire.
• In their first 20 years they grew slowly to 11 locations. Then new management took over, and they’ve since grown 64% in the past three years (up to 18 now), with more on the way.
• Every industry has problems these days with staffing and budgets, but in May this company found budget to hire a new VP of Acquisitions and Spending.

People like this make me puke, from the RN director who said our mom would do fine there, to the operations manager who responded to our detailed horror story with a flat “The services listed were available” and “we won’t charge you an overnight guest fee,” to the executive leadership who think it’s all fine and they should grow some more.

Mind you, we are a savvy and empowered family of smart shoppers. If this happened to us and our mother, how will your family do when you need such services?

Mom’s tree

We are left with the memorial tree we had planted in her name at Quiet Waters, the lovely park on South River, near her home in Annapolis. (See photo at top.) It’s a southern magnolia, the aptly named Magnolia grandiflora for its big fragrant flowers. Her neighbors had one she liked to look at from her patio. Now there’s a young southern magnolia with her name on it, near the gazebo where she loved to sit in her later years. (Photo, right)

Have you experienced similar shortfalls?

I’m sure most people’s experience with long-term care (assisted living, respite care, etc) has been good. But this has been horrifying for us, as our actual lived experience was so different from the lovely tour and pretty website, and I can’t imagine we’re the only ones.

Is this a wider problem than we imagined? Have you had anything similar happen to you? Respond in comments, please.

Dave deBronkart is a patient activist, speaker and author. This is from his blog Democratizing Healthcare