How Hospice Care Has Changed and Why It Matters: Fran Smith, Co-author of Changing the Way We Die

Van Ton-Quinlivan
Hello, I’m Van Ton-Quinlivan, CEO of Futuro Health welcoming you to WorkforceRx, where I interview leaders and innovators for insights into creating a future ready workforce.

According to the University of Pennsylvania, there’s a growing acceptance of hospice care among Americans, with a steady rise in usage by Medicare beneficiaries as a key indicator. The other upward trend in the space is that 70 to 75% of this care is now provided by for-profit entities, a level that has doubled in the past two decades.

To understand more about hospice care and how it has evolved, I’m happy to welcome Fran Smith to the podcast. She’s the co-author of Changing the Way We Die: Compassionate End of Life Care and the Hospice Movement, which is an Amazon bestseller and winner of an independent book publisher’s award.

Fran is also an award-winning journalist and communications strategist who writes about today’s sweeping changes in federal healthcare policy and their impact on vulnerable communities as a columnist for the University of Southern California Center for Health Journalism.

Thanks very much for joining us today, Fran.

Fran Smith
Thank you so much for having me, Van.

Van
I’m looking forward to learning. So let’s set the table by getting a definition from you of what is hospice care and how it differs from palliative care — and our audience tends to be more from the higher education and workforce development side of the house, so I’m hoping you can fill our cup of understanding.

Fran
Okay, great. It’s a great place to start. Well, hospice care is for people who have a terminal diagnosis and an expectation of a six month life expectancy. Now, physicians can’t always predict how long someone’s going to live, so people sometimes outlive that diagnosis and can get recertified for hospice, but generally that’s how it works. And palliative care is part of what hospice does. So palliative care is comfort care and hospice is all about keeping people comfortable — comfortable physically, spiritually, emotionally — in whatever way they need. Most hospice care is provided in the home – people often think it’s a place, but it’s provided in the home – although there are facilities that provide hospice care.

Palliative care is comfort care for people who have a terminal diagnosis or don’t have a terminal diagnosis. So, one of the things that gets confusing for patients sometimes is if they’re in treatment for cancer, or for whatever illness, and palliative care is recommended, they think, “Oh my God, I’m going to die.” No, that’s not true. As anyone knows who’s been through treatment for any serious illness, often there’s a lot of discomfort involved in it. So palliative care is really all about keeping patients comfortable, even if they’re continuing the treatment for the disease. In signing up for hospice care, you stop treating, you stop opting for curative procedures.

Van
Is there any age range that is connoted by hospice care or palliative care?

Fran
No, not at all. Most hospice care is paid for by Medicare, so it tends to be an older population, but anybody with a terminal diagnosis at any age is eligible for hospice care. And similarly, there’s no age specification for palliative care.

Van
So, I was wondering, hospice care started as a nonprofit mission-driven approach, and that has changed a lot over the years. Help us understand that evolution.

Fran
Yeah, it’s changed a lot. So hospice really started — and the title we gave our book calls it a movement – it was really a movement mostly by nurses when physicians really couldn’t do anything for patients anymore once they couldn’t cure them. It started in England, and it came to this country in the 1900s, started in Connecticut by a nurse named Florence Wald. And for a long time it was really volunteer  based. Insurance didn’t cover it, and care was provided out of the goodness of people’s hearts. That began to change, and the people in the hospice movement pushed for the change when they got Medicare to cover it back in 1982. Once Medicare started covering hospice services, money came in and it became a business for more and more people.

Van
So, when your book came out in 2013, the trend of private equity entering into hospice care was just beginning. Tell us what has been happening since then.

Fran
Yeah, so that too has really taken off in the last ten years. Initially, when businesses started coming into the hospice space in the 1980s, there were small companies. Then, as happens in pretty much every sector, small companies became bigger companies, that became bigger companies, and they became chains. Some of them had IPOs, so they became public companies. So, it got bigger and bigger and bigger.

Then as private equity grew investments in healthcare, it started coming into hospice in a big way around the time we were writing the book, 2013, 2015. There aren’t great statistics breaking down how much of the 75% that you mentioned is private equity versus small business versus corporate hospice, but private equity has become a much bigger player in the space, as it has in healthcare generally.

Van
So Fran, what does that mean in terms of the quality of care?

Fran
Well, there are a lot of concerns. There were a lot of concerns about corporate hospice and then even more concerns when these companies started going public and were accountable for quarterly returns. There are even more concerns now that private equity has come into the field.

There is some data showing that staffing is poor at privately owned and private equity and corporate hospice compared to nonprofits. The profit margins are certainly greater. Nonprofit hospices have a profit margin of about 6%. Corporate and private equity hospices have a margin of about 18 to 24%. And so how do they do this?

Everybody’s getting the same money from Medicare – it pays the same daily rate for a patient no matter what their diagnosis is. But patients need the most care in the first days of hospice and in the final days of hospice and there’s really good indications that some of these private companies, maybe most of these private companies, cherry pick patients. They pick the patients that are going to be in for a long time because you don’t want to have cancer patients who you spend a lot of money on for the first days, you spend a lot of money for the final days, and there’s really no space in between. They’re in there for usually on average two to three weeks.

When you pick Alzheimer’s patients, they can be on for six months and then get recertified again for another six months. My mother, who’s 101, has been on hospice care for about a month. In the first week, she got a bed delivered to her home, she got a wheelchair delivered to her home, the doctor came, the nurse came, the social worker came. There was a lot of attention, a lot of back and forth about her drug dosage, all that kind of stuff. Now, she sees a nurse every week. The hospice is billing Medicare for the same amount of money for those first days and for the current period when she’s not getting a lot of services, so when you have patients who are in for a long time, that’s profitable.

There’s also some indication that the for-profit hospice companies have used more licensed practical nurses than registered nurses, that salaries are lower and they are much more concerned about costs and cost effectiveness than in nonprofit organizations.

Van
One of the things you described, which was the setup in the early days — how your mother received the bed and the extra visits and the attention — I can see how that contributes to the high costs in the front end. What are the high costs on the backend that you mentioned?

Fran
Well, often it’s medication costs, and if there is a need for more nurse visits, because it’s really hard on families. I mean, one thing about hospice care is it does leave families to do a lot of the care themselves. A nurse is coming to see my mother once a week, and the rest of the time it’s up to us and any aides we can hire to provide her care. So, it’s not like they’re providing round the clock care. It’s nothing close to that.

Not often, but many times, patients at the end of their life do go to an inpatient facility because families really can’t handle their needs, so there’s a lot of expense around that. I should also say that hospice care is also provided to people in skilled nursing facilities and assisted living facilities. So, when I say most hospice care is at home, it’s whatever your home happens to be at that point in your life. It’s not necessarily the house you’ve always lived in.

Van
And Fran, I’ve been wondering, because I’ve been seeing and hearing about more of these situations, what if you don’t have family members around you to help, as you’ve explained it?

Fran
Well, I mean, that’s a real problem. And some of those people, if they have resources or they’re Medicaid eligible, can go into a skilled nursing facility. Patients still can die at home alone without any help. Hospice is really not set up to provide the kind of round the clock care or the constant care that a terminally ill person at the end of their life would need.

Van
And what would that look like? What would good care look like if you could design good hospice care?

Fran
Well, I think there is good hospice care. One of the reasons I wrote the book is my experience covering healthcare and medicine for a very long time as a journalist. And as journalists do, you write about patients and you follow them through their journey of treatment and all of that, and sometimes to the end of their lives. I was struck for a long time by the fact that once people made the choice to go into hospice care, the care was so much better. It was really holistic. It was really about the person and not about a body part. There were not a lot of different providers who weren’t talking to each other. So, for a long time I wondered, why do you have to wait till you’re dying to get this kind of holistic and compassionate care? So I want to say that a lot of the hospice care I’ve seen has been just excellent.

I think you’re asking questions that get at much broader societal problems where we have a lot of homeless people, and we have a lot of people who are not cared for in all kinds of ways. And it’s certainly not hospice’s role or hospice’s job to take care of all of those problems. But I think hospice care, as I saw it when I wrote the book, and now as I’m seeing it with my mother’s situation, I’ve been quite pleased with it.

Van
So, let’s say a family has decided, or an individual has decided, that it’s time for hospice care. How do they locate or evaluate the providers such that they could get the holistic, coordinated, compassionate care that you’re talking about?

Fran
That’s a great question. Medicare has some tools on the medicare.gov website that allows you to compare hospices. They look at survey responses and customer satisfaction kinds of things, they look at ownership, so you could see if it’s a nonprofit or for-profit. I think the best way to find any healthcare is to ask people. If you know nurses, they are the very best people to ask. I just went through this with my mom and I was looking in New York City, so there were lots of choices. I knew somebody who had worked in hospice care actually in California for a long time, but she’s kind of in that world and she lives in New York now so I just asked her to give me some names.

I have to say I leaned toward the nonprofits, so that narrowed down the choice to begin with, and I’m really, really happy with the agency that we selected. So ask around. You could look on Yelp the way you would before you go to a restaurant, as long as you’re aware that many people who post are people who have complaints.

Van
With our aging nation, I am wondering how even is the availability of hospice care?

Fran
It’s widely available, I think, in most parts of the country. I can’t really speak to rural communities where healthcare generally is much harder to access. I know generally in urban metropolitan areas, it’s not only widely available, but if I drive around and if I’m listening to AM radio, every three minutes, I’m hearing an ad for a hospice agency. So I think they need customers more than customers are banging down the door to get into programs.

In order to be accepted to a hospice program, a physician has to certify that you’re eligible, and your own physician has to fill out a bunch of forms, so it’s not a simple matter of just calling up and saying, okay, I want hospice care now. But I found certainly in my own experience — and when we were doing the book — I didn’t hear anybody in any place in the country say, “I really wanted to get into hospice care, and there just weren’t services available.”

Van
Alright, so let’s take on the workforce challenges. Hospice care providers face the same staffing shortages and other workforce problems as the rest of the healthcare sector, plus they have the additional challenge of needing workers with specialized training. And you’ve talked about the use of RNs versus licensed practical nurses. What can you tell us about the workforce aspect of the hospice industry, including the ideal composition of workforce and where it’s likely to head in terms of workforce skill sets?

Fran
Nurses and social workers do the bulk of the work. And as I said, how any particular agency breaks that down with a registered nurse versus licensed practical nurses, is kind of up to them. As in healthcare generally, there’s a nursing shortage in this country. You see that and hear about that in hospice care.

I know when we were doing the book, one thing that just struck me so deeply was how much people really love the work they do. I mean, you would think it’s hard and it’s depressing. You would think all those things, but people love the work. It’s really meaningful. They can see they make a difference.

When we were doing the book, we found many of the programs that had stable staffing over time tended to be nonprofit programs. There was not a lot of coming and going as you can sometimes see in healthcare generally. In the program that I’m working with now for my mom, she is assigned to a nurse and to a social worker, so there’s consistency. She’s not seeing different people every time. And that’s really important from the patient’s standpoint, but it also really makes for a much more satisfying work situation for a provider because they really get to know that patient and they really get involved in their life and in their care.

Van
Fran, that seems like a good question to ask any hospice provider you’re evaluating: how stable is your care workforce? And do you get assigned to the same team?

Fran
Absolutely.

Van
Do they stay with you?

Fran
Absolutely.

Van
Any other insights in terms of the workforce and where that is heading in terms of skill sets?

Fran
I know that there have been reports from nurses who have worked both in the profit part of the sector and in the nonprofit part of the sector who have been very critical of the profit part of the sector. So again, when I wrote the book, private equity was just coming into it. I don’t know what the staffing challenges are in that sector — if the wages are lower, if the workload is higher — but we’ve seen evidence that it is, and as you were just talking about, if there isn’t that stability then there isn’t that opportunity to really build meaningful relationships with your patients.

Van
I’m told that it’s been the case that people enroll in hospice too late to get the full benefits of the care. Is that still the case? And what can be done about that in terms of awareness?

Fran
Well, I think a program like yours is really helpful because people do often enroll late to get the benefits. Part of that is due to how we think about the end of life and how we think about fighting and waging a war against your disease and keep going at all costs. Often it’s very, very late in the game if you’re talking about someone with a terminal illness like cancer — not someone like my mom who’s very old and failing. But if someone with a terminal illness — or even with my mom — no doctor ever said to her, would it be time for you to consider hospice care? That’s not something that many physicians often do until there is absolutely no more intervention they can think of to do. They’ll keep going, and going.

So it’s often up to consumers, patients to say, what’s my alternative here? What would it mean for me to go into hospice care? Am I ready to stop treatment if it’s a terminal illness? And one of the things that was so, again, very profound for me in writing the book was the way the question was framed by hospice providers. The question isn’t, are you ready to give up on fighting your disease, but rather, what do you want to do with the rest of your life? Do you want to spend it in treatment that can make you feel sick, that could wipe you out, be really tired? Do you want to spend it with your family in your home, getting the emotional support and the nursing support that you need? So it’s a very different way of thinking about that, but I’d say it’s really almost always up to the patient or the family to say, maybe it’s time to do this.

Van
It seems like by the time it gets to hospice, then it’s maybe a little too late to have that type of conversation, as you’ve laid out. So, it seems like the primary care provider and the specialty care providers would need to be trained to have that conversation a little bit earlier in time.

Fran
Yes. And there’s been a little more emphasis in training physicians in having those conversations and end of life conversations.  I know I just had an hour long appointment with my primary care physician on my wishes and all of that kind of stuff, but most generations of doctors practicing now have not had that as part of their training and that’s not their orientation.

Van
And what does the conversation look like for the family that may be involved in the discussion?

Fran
Well, obviously it’s really a personal thing, so it varies from family to family. There are really great tools, online kits, you can get that really can facilitate the conversation. The really important thing is to have those conversations before you actually need to have that conversation. Have that conversation when you’re healthy. How do you think about this? How would you think about this? And of course, when you’re in this situation or your loved one is in this situation, you might feel very differently. But the worst time to have the conversation is when you’re right up against that choice. When you’re facing terminal diagnosis and death within some months or within the year. It is really important to have that conversation early and get comfortable talking about that.

People often fill out their healthcare proxies and fill out all that stuff and then completely forget about it and never really revisit that. I remember when I did the book — and we have a whole chapter in advanced care planning — I finally said to my mother, is your paperwork all in order? Can I see that? And she said oh, yes, fine. And I looked at it and it turned out her healthcare proxy was a cousin who had been dead for 17 years at that point. So it’s important to just get comfortable with these conversations. And when you face it, you already have the language, you already have the trust, you know how to talk with your kids, you know how to talk with your parents about this kind of stuff.

Van
Oh, what good advice. Now, Fran, when you wrote Changing the Way We Die, what were you hoping to achieve through the book?

Fran
Well, one of the things is really raising awareness about hospice care. And as we’ve said, it’s often up to the patients and their families to initiate. You can’t wait for your doctor to do it. And another thing is really more broadly to just reframe the whole decision. Again, not so much are you ready to give up because there’s nothing more to do, and think instead about how you want to spend the time that you have on this earth.

Van
And Fran, you mentioned that your mom, who’s 101, is in hospice care right now. Now that you are going through this experience yourself, what chapter would you add into your book?

Fran
Oh, that’s a great question. I think I need to think about that for a minute. After writing the book, I was a real fan of hospice care, but in the 10 years since I’ve written the book, it’s gotten much more corporate. A lot of private equity has come into it. There have been a lot of criticisms of the care in the space. There are people who are some of the biggest, longstanding champions of hospice care that will tell you, hospice is dead. I mean, these are the people who came out of the hospice movement.

But with all of that said, I have been really pleased to discover, in my experience, it’s working the way I wrote about it. It’s working really well. Everyone we’re dealing with is wonderful. I call and say, my mother fell out of bed. The next day there’s a hospital bed at her home. I call and say, she’s not comfortable in the wheelchair we bought a few months ago. The next day there’s a wheelchair in her home. So my own experience really confirms what I thought.

If I were to write another chapter, I would look much more closely at how the business is affecting the care and how the business aspects are growing. We had a chapter called Dialing for Dollars and looked at the corporatization of hospice care and private equity was just getting into it, but now they’re into it in a big way. So I would look into that.

I will say that the first person who started a for-profit company providing hospice care actually came out of the movement, came out of the nonprofit sector. He pushed for the Medicare hospice benefit, and then just got so much criticism when he started a company, which then became the largest hospice chain in the country. When we did the book, I had the great fortune to talk with him, and he was appalled at what he had unleashed, of just how business-oriented it had become and how so many programs were now focused strictly on the bottom line and cutting services to the minimum required by Medicare so they could boost the bottom line.

Van
And are you seeing any applications of technology or foresee the use of AI-enabled technologies in the hospice care situation?

Fran
I’m sure that’s happening. That’s very recent, and hospice is not generally known as being at the front end of innovation. In many ways, it hasn’t really changed since the hospice benefit was created in the early eighties. There’ve been tweaks, but the whole approach to care basically hasn’t changed since then. So I am sure, especially on the for-profit side, they’re bringing that in to the extent that they’re bringing it into healthcare generally, but I don’t have any specific examples to give you.

Van
Well, let’s end with this question. What makes you optimistic about the future of care?

Fran
I am optimistic that hospice is growing more and more accepted. The number I have is 1.7 million people a year are served in hospice care. That number has just gone up and up and up every year and continues to go up. So, I’m really optimistic about that. And I am actually optimistic that 25% of the hospice programs are still nonprofits. I mean, 10 years ago, it was about that number, and there was really a sense that these programs weren’t going to survive, and yet here they are. So that’s great.

I think it helps the whole sector when there is that competition. If nonprofits are providing more services or better staffing, I think that’s really good for the for-profits. If for-profits are doing things with greater efficiencies, that’s something that the nonprofits can learn from. So I think it really serves everybody well to have a mix, a balance in that sector, even though it’s obviously weighed to the for-profit side. That basic statistic hasn’t changed in some years, so it gives me hope that the nonprofit part is still hanging on, and at least in my experience, providing just excellent care.

Van
Thank you very much, Fran Smith for joining us today. I learned a tremendous amount about this space.

Fran
Well, thank you so much for having me.

Van
I’m Van Ton-Quinlivan with Futuro Health.  Thanks for checking out this episode of WorkforceRx. I hope you’ll join us again as we continue to explore how to create a future focused workforce in America.