Announcer: This is The Takeaway with MHP, from WNYC and PRX in collaboration with GBH News in Boston.

Melissa Harris-Perry: Half of Americans will die in hospice care, and that end-of-life care is essential to many families. Some of you told us how it supported you through tough times.

Speaker 2: I have experience with hospice care with both my parents when they were going through the death process. They were professional, caring, helpful. They listened very well and I always felt like they would be right there when they needed them.

Melissa Harris-Perry: We heard from some of you about the comfort and support for those who have exhausted all treatment options and are preparing for a final transition.

Scott: Hi, my name is Scott and I have been a hospice nurse now for six years. Actually, in the last two years I have been specializing in making extra visits to patients that we think are in the last seven days. I feel honored to be able to help families and patients go through this process.

Melissa Harris-Perry: What began as a way to help people die with dignity has become a $22 billion industry plagued by exploitation. Some of you told us about that, too.

Speaker 3: I do have experience with hospice care and it was horrific. They lied to my dad about the kind of care he was going to get. He signed the paperwork. They told him that they're not going to kill him. Essentially, over the next few days they drugged him up with so much Benadryl, it shut down his organs. They wouldn't even give him water. I wish we never went through this process with this company and I would do anything to change it. It robbed my children and my partner of having a last few quality days with my dad and I regret all of it.

Melissa Harris-Perry: As always, we're so grateful to all of you who shared powerful and sometimes painful hospice stories with us. To learn more about the contemporary realities of hospice care, I sat down with Ava Kofman. She's a reporter at ProPublica and author of Hospice Became a For-Profit Hustle. It's a recent collaboration with the New Yorker. What is it that makes hospice care so lucrative?

Ava Kofman: What I found in my reporting is that hospices are actually incentivized by how the Medicare benefit works to chase after, go after patients who may or may not be actually eligible for hospice. What we found and saw through over a 100 lawsuits over the last two decades is that hospices are actually hustling or chasing after these patients. The way that hospice works is that it's quite a bespoke program. You might just have a nurse coming by, even in the best of circumstances, twice a week for 30 minutes each. Most of the care is still provided by the family.

You're still going to be the one who is helping to administer the medications, who's helping with toileting. That actually saves hospices a lot of money that most of the care is outsourced to family members. Overhead as well is quite low, given the fact that most care takes place in home. Hospices aren't building out facilities in the same way one would for a skilled nursing facility or a hospital. The last thing that makes hospice quite lucrative for people who are in it to seek profits is that even though to sign up for hospice you have to have six months or less to live, there's nothing that stops hospice from re-certifying you as eligible time and time again.

There are patients who stay on hospice for quite a long time, and those patients if they're stable, if they aren't requiring extra medications or higher levels of care, can end up being a revenue stream of sorts.

Melissa Harris-Perry: Because if you're dealing with truly end-of-life care, truly end of life, it could be days, weeks, maybe months, but your client will be passing on in a way and out of your business.

Ava Kofman: Part of the reason that hospice is sometimes being used for people who have longer than six months to live is we have such a lack of long-term care and elder care services in this country. If you're someone with a unpredictable decline like dementia, studies have found that hospice might be all there in terms of even just having someone come by to check on you, someone come by to help out your family member.

Then, of course, the flip side of that, Melissa, is that there's also people being signed up who might not be anywhere near chronically ill or disabled or in this gray zone who are actually losing access to treatments that they really need because they think they're signing up just for home healthcare. Those stories were particularly horrifying to come across.

Melissa Harris-Perry: Is it the same providers that are sometimes behaving in one way and other times behaving in another way, or are these actually different providers that are behaving differently in the system?

Ava Kofman: 7 out of 10 of the largest providers of hospice care, actually both for-profit and non-profit, have been accused by employees of enrolling ineligible patients, signing up people who weren't appropriate, chasing after them, and even pressuring their employees with bonuses and quotas to do so. What I found in my reporting was that since 2000, far more than just the largest hospice companies have been accused of such fraudulent practices often by their own employees. These are tactics that we are seeing at some of the biggest hospice companies.

Often they end up settling with the government and admitting no wrongdoing, brokering settlements to, in some cases, cover the cost of the money they've been accused of stealing from Medicare, but it's both small and large players that seem to be incentivized by how the benefit is designed to engage in these practices.

Melissa Harris-Perry: What does it take to become a hospice provider? How do you get into the system?

Ava Kofman: Basically, anyone can open up a hospice. If you and I decided [chuckles] to get into the hospice business, we would be more than welcome to. It would start with getting a state survey. Someone would come by and check that we had posted our hours of operation on the door before we'd opened, that we had some small office, and that we had the right number of staff hired. After that, most surveys are actually outsourced to private accreditation agencies. That was only happening once every three years.

One of the things I was really shocked by when researching the wild wild west of hospice ownership is that there are people who own 20, 25 hospices, all clustered within blocks of each other, and are just transferring patients from hospice to hospice after they hit a Medicare billing limit. There are people who own hospices who have criminal backgrounds. There are people who get into hospices after being accountants or real estate agents. That's incredibly 'hot area' for private equity. I think all of that just shows you how much money under the current system there is to be made in hospice right now, which sounds like a ridiculous thing to say [laughs].

Melissa Harris-Perry: You and I are probably both pretty smart folks. I'd trust us to do all kinds of things, but if I am needing end-of-life care for my loved one, how do I make sure that it's not the two of us who end up at my home?

Ava Kofman: There are some things that you can try to do, and I should say that it's unfortunate that it has to be on the 'consumer or client', but one of the biggest things is looking to see who owns the hospice? How long have they set it up for. That is something that with a little Googling anyone can find out. The other thing is there is a government database called 'hospice compare' and they're starting to collect some quality of care metrics. They'll allow you to see how many of their patients do they check for pain? There's a nascent star rating system that's rolled out for some of the hospices.

I would check to see what's the hospices for-profit or non-profit status? Do they have a higher level of complaints because of their for-profit status? Are they owned by a private equity group? What's the private equity group's history in the healthcare sector? Does this seem like a long-term investment or something that's being squeezed for profits and flipped? Can the hospice confirm that they're going to provide the right equipment? I guess doing that homework and doing that research to make sure that you and your family are steered to a provider who's there to provide the essential hospice mission.

Melissa Harris-Perry: Let's take a quick pause. We'll be right back with Ava Kofman on the for-profit hospice hustle. It's The Takeaway. You're still with us on The Takeaway. I'm Melissa Harris-Perry, and we're back with Ava Kofman of ProPublica, talking about her recent reporting on the US hospice industry. Now, I asked Ava why there's no organization that regulates hospice care in the US?

Ava Kofman: CMS are the centres for Medicaid and Medicare services, do have more data available than they currently make public. Some of that data, if contextualized the right way, I think would help families immediately see some of the problems with hospices. They could use that to regulate hospices so that hospices with these really concerning and unusual patterns of care are being given an extra look or even, when appropriate, weeded out of the system altogether.

Melissa Harris-Perry: What has made it so difficult to actually provide this kind of oversight? Again, given that this is a government-based program?

Ava Kofman: One of the really tricky things about hospice is that it's taking place at home. It's a lot harder to regulate things that are out of sight, happening behind closed doors. The other just really insurmountable structural obstacle is the fact that you're supposed to die. Family members as well are often too grieved or stressed.

All that said, there's obviously more that can and should be done, perhaps surveying Hospices more frequently, using data, as I mentioned, to go after providers with egregious or suspicious metrics of quality of care. The last thing, [unintelligible 00:10:48], is perhaps you and I shouldn't be able to just open a hospice if this whole journalism thing doesn't work out [laughs]. A greater attention to licensing so that we're not getting these hospice mills.

Melissa Harris-Perry: Can you tell us about the marbles?

Ava Kofman: Patricia Marble was in her 70s when she began receiving hospice care from a provider in the area. She had had many health troubles and she accepted the doctor's diagnosis. Over time, she began to get incredibly confused and feel worse than she ever had before she had entered hospice. As the years went on, she continued to receive incredibly high doses of narcotic medications and they were affecting her ability to move around.

She barely knew who or or where she was, and at one point said that she just felt like she was already dead. It wasn't until she was essentially unresponsive one morning and taken to the hospital by her husband and daughter. The doctors took one look at her and said, "How is this woman on hospice for the last five years and being given such high doses of narcotic medications?"

Once she was taken out of hospice, she was weaned off the drugs through an intensive rehab program. Her memory improved, her breathing improved, and her family began to see that that time that they had lost together and that time that she had lost with her grandchildren as a nightmare. It was a Rip Van Winkle story. Then, Patricia later said, she felt like the lights had been turned back on.

For people who may originally be eligible for hospice, but then may turn out to not be appropriate, it's really important for families to ask those questions if their doctors are continuing to certify them an incredibly questionable amount of time. This was a company that had bonuses and incentives for bringing in hospice admissions.

Melissa Harris-Perry: Just stunning. Ava Kofman, thank you so much for joining The Takeaway.

Ava Kofman: Thank you so much, Melissa.

Melissa Harris-Perry: Ava Kofman is a reporter at ProPublica.

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