Wednesday, November 6, 2019

November is hospice month! How do you find a good hospice?

Not enough staff?
Do not pass 'Go'

Hospice in America is a $19B+ industry. We're talking about real money from a customer everyone knows can pay the bill - the federal government. Almost two-thirds of the players are corporate for-profit regional and national hospice chains, and they're selling hard.

They're also well-organized, including with an industry trade group and paid flaks lobbying Congress and churning out press releases.

Hospice is also probably the least transparent industry operating today - even compared to others that have long been notorious for their secrecy, like the funeral business. I haven't met anyone who's selected a hospice based on the kind of detailed comparison shopping they've done for a new car or vacation destination.

I can understand why - looking for hospice sounds like a grim task, so it's easy to avoid.

But the bigger reason is simple - there's very little useful information available that can help a patient, family, referring provider, or even just a curious, highly motivated, death-positive individual looking to check out their options, just in case.

I'm working on a longer piece that explores this conundrum in greater detail, and it's taking more time and has gotten more detailed than I first anticipated.

So in the meantime, I thought it would be helpful to revisit the suggestion of my friend, colleague, and data wonk Boo Boo, who made the argument here two years ago that it's possible for us to get a good sense of a hospice based on one important number.

Here's my own "bottom line" about evaluating a potential hospice, in an environment where that term "bottom line" has assumed greater importance over the past 20 years: if they don't have enough staff, they can't even begin do the work reliably, consistently, safely, or with any expectation of decent quality.

What if a hospice can't clearly satisfy you with an answer to, "Do you have enough staff?" 

My suggestion - walk away.

Shiny happy people laughing*

The hospice industry trade group is trying to being helpful with a glossy Consumer's Guide to Selecting a Hospice Program (pdf), along with a one-page cheat sheet of questions to ask,  Choosing a Quality Hospice for You or Your Loved Ones. (pdf, header above).

I find most of the questions unhelpful, because they don't lead to the kind of information that could differentiate one hospice from another in any meaningful way. The third question prospective patients and families are instructed to ask is blatantly self-serving - Is the hospice you're considering part of our hospice industry trade group?

That statement reminds me of a speech Jimmy Carter made in 1974 as Governor of Georgia. It's called his "Law Day Address" because it took place at a luncheon event on that day - May 4. Someone there also made a low-quality audio recording, perhaps on a portable cassette tape player. Here's the relevant passage:

"The regulatory agencies in Washington are made up, not of people to regulate industries, but of representatives of the industries that are regulated. Is that fair and right an equitable? I don't think so.

I'm only going to serve 4 years as governor, as you know. I think that's enough. I enjoy it, but I think I've done all I can in the governor's office. I see the lobbyists in the state capital filling the halls on occasions. Good people, competent people, the most pleasant, personable, extroverted citizens of Georgia. Those are the characteristics that are required for a lobbyist. They represent good folks, But I can tell you that when a lobbyist goes to represent the Peanut Warehouseman's Association of the Southeast, which I belong to, they go there to represent the peanut warehouseman. They don't go there to represent the customers of the peanut warehouseman.

When the Chamber of Commerce lobbyists go there, they go there to represent the businessman of Georgia. They don't go there to represent the customers of the businessman of Georgia.

When your own organization is interested in some legislation there in the capitol, they're interested in the welfare or prerogatives or authority of the lawyers. They are not there to represent in any sort of exclusive way the client of the lawyers.

The American Medical Association and its Georgia equivalent - they represent the doctors, who are fine people. But they certainly don't represent the patients of a doctor."

To their credit, towards the end of the one-page cheat sheet the hospice industry trade group includes a muddled indirect version of the single most important question to ask any hospice:

Do you have enough staff?

But this weak sauce is still too strong for some members of the hospice industry trade group, because the long-form glossy adds in this great example of weaselspeak - hemming, hawing, dodging, and obfuscating: 
Gotta read the fine print weaselspeak

This weaselspeak begs another question - why wouldn't a hospice be willing to share that information? 

The most obvious reason is simple - because the answer isn't a favorable one, and the hospice would rather keep the public in the dark about its unsafe staffing

Unsafe staffing should eliminate any hospice from consideration. A hospice with unsafe staffing is a hospice that abuses its staff with unreasonable demands, subjects its patients and families to risky poor quality care, and makes you wonder what else they're trying to hide.

One of my favorite online and social media pastimes is asking hospices about their staffing:
The biggest hospice in Massachusetts has never responded

Two years ago Medicare rolled out HospiceCompare, their early attempt to support the first of the four admonitions of the Death Nurse Manifesto: Patients and families need to know more and demand better.

At this point one of the best features of HospiceCompare is a their version of a two-page cheat sheet Suggested Questions to Ask When Choosing a Hospice (pdf) which includes a form of the most important question:
Do you have enough staff?

Finally, here's an interview with Naomi Naierman, the founder and former CEO of the now-defunct American Hospice Foundation, about how to chose a hospice. This is an important exchange:

Q. " can families interview hospices?"

A. You might find they’ll come to your home... That’s a time to ask questions. Or you can call on the phone. How receptive a hospice is to these questions is the first signal of their quality."

Thanks for reading, see you next time.

*with apologies to REM