“Dying Broke” Reporters on Long Term Care

BIANNA GOLODRYGA, INTERNATIONAL ANCHOR: Well, turning now to the end-of-life care in the United States, an emotional time for so many families and also a time for many who are forced into financial ruin. Reporters Reed Abelson from “The New York Times” and Jordan Rau from KFF Health News talked to dozens of families and experts about the tremendous toll of taking care of dying loved ones in a country with no coherent elderly care system. Their “New York Times” series is called “Dying Broke,” and here they are talking to Hari Sreenivasan.

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HARI SREENIVASAN, INTERNATIONAL CORRESPONDENT: Bianna, thanks. Reed Abelson of “The New York Times” and Jordan Rau of KFF Health News, thank you both for joining us. When you were starting out to do this series, “Dying Broke,” what were you setting out to find?

REED ABELSON, REPORTER, THE NEW YORK TIMES: I think we wanted to learn what people’s experience is and trying to be able both to find, but also very importantly to afford care when they get older.

SREENIVASAN: Jordan, what are the kind of assumptions that we all have about how our elder care is going to go that, well, your series really challenges?

JORDAN RAU, SENIOR CORRESPONDENT, KFF HEALTH NEWS: Well, one of the big ones is that so many people think that Medicare covers long-term care, and it doesn’t. So, long-term care is, you know, if you need a personal aid to help you because you have dementia or if you need help going to the bathroom or whatever, and it’s totally separate. And that’s really why we wanted to focus on this area because there’s a huge gap, and private insurance doesn’t cover it and people think that it might, and Medicare doesn’t cover it and they are surprised and their children are surprised when they get to this stage that they’re on their own financially.

SREENIVASAN: Reed, you know, Jordan just touched on a subject, which is really just kind of the definition of — and our understanding of what long-term care means, because it’s easy to kind of fall into a trap saying, well, no, no, that’s not going to be something that I need in the future. I don’t need, you know, fully assisted living, et cetera, et cetera. Nobody plans for that.

ABELSON: Well, some people do plan for it because they save money for their retirement and they assume that when they get older, they may need a little bit of help. But I think people have no idea of the staggering costs of an assisted living facility or even a home aid. And so, they really — you know, the vast majority of people simply can’t save enough for these costs, and I think that’s what the series really underscores.

SREENIVASAN: What are some examples? What kind of costs are we talking about?

ABELSON: Well, I mean, a nursing home or assisted living facility, I mean, we’re talking about tens of thousands a year. A home aid. It depends on how much help you need. But, you know, again, that can be tens of thousands. Nursing homes are easily over 100,000, you know, a high-end assisted living facility is — it can start being that much. And, you know, if you’re talking about several years, if you’re talking about living there for more than a year or two, you find that you wipe out your savings. And most people actually find that they’re caught in the middle, that they don’t qualify for Medicaid, which is the state federal program for the poor, but they really can’t afford care on their own. And so, many people will actually go without care. And I think the series looked at various examples of that.

SREENIVASAN: Jordan, one of the stats that leapt out to me when we’re talking about costs here is that almost half of upper middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid. Tell me about how it is that this system is structured where you have to exhaust what might be your life savings to qualify?

RAU: The system is set up, and it varies from state to state, but the — most Medicaid programs require you to only have $2,000 or $3,000 before you can get coverage and they also require you to exhaust most of your assets, and they’re very, very complicated rules in each state about, you know, what happens if the spouse is there and how do they get their money? Reed and I interviewed people that were trying to figure out how to do this and basically impoverish themselves so that they could get the care, and they had to hire private lawyers for the help. So, you’ve got a system for the poor that costs money to access it.

SREENIVASAN: How much, for example, does Alzheimer’s or having cancer at an old age complicate the cost of care? Because I have to imagine that a facility that needs to keep its door locked to make sure that people aren’t wandering out if they have, you know, dementia is going to be more expensive.

ABELSON: A place like that is going to be more expensive, but it’s also going to be harder to find. That’s one of the things that struck me is that even people who really wanted to place their loved one in a facility because that’s where it was safer sometimes really had very few options, particularly under Medicaid.

RAU: You know, a lot of these people have substantial medical needs and there’s an additional financial cost to that and there is also a huge logistical cost. I mean, if you have to go to get chemo somewhere because you have cancer, that’s a whole extra thing. The transportation is a huge issue. And so, you know, having, you know, both of these areas in the American healthcare system filled with sort of pitfalls and trenches that you could slip into and then, you know, having to deal with the double issues at once, make it even more perilous for people and more financially brutal.

SREENIVASAN: Give me an idea of how many families are facing these stresses right now, what are the actual numbers?

RAU: It depends on how you define it. I mean, we look what we were curious about for our data part of it, was we took a very conservative definition of who needed long-term care and found that about 8 million people needed it who are older and about 3 million of those were not getting anything, but that doesn’t count a whole bunch of things. That’s really like at the point that you would qualify for being an assisted living or nursing home or such. It’s everybody. I mean, everybody who has a relative, and one of the reasons that this series resonated so much is that, I mean, everybody, either themselves has gone through this, is expecting to go through it has it right now or has friends to know it through. And what we tried to do for those people was to connect the dots, because it’s such a disparate system. But no one is — and of course, you know, all of us are in danger as well. So, it’s as universal problem as you can get in health care, I think.

SREENIVASAN: Let’s talk a little bit about what’s happening to all of the people around the individual that needs the long-term care. I mean, you spoke to so many different people who are in really different levels of mental, emotional, financial stress.

ABELSON: I think what was striking is how much people sacrificed for their loved ones. You know, I talked to Phelan Lewis (ph), who was you know, in England, had a promising career. She had to give it all up to move home to take care of her mother, who had had a stroke. She incurred debt. She really worried about being able, at some point, to move, — you know, to get her own life in order. I think people sacrifice all the time. It’s fascinating. I think Jordan and I found families who, you know, moved an older relative into their own home and really sort of changed their life to be able to accommodate that person. Yes, there’s a tremendous both financial cost, you know, that the — you know, deciding not to work, for example, or cutting back on work, incurring debt. But there’s a real emotional cost too, and many of these families had children that they were also juggling along with older relatives. So, it’s a very tough situation.

SREENIVASAN: One of the folks in your story, I want to get to is Gay Glenn and her mother, Betty Mae. They live in a nursing home in Kansas until she died in October. Tell me a little bit about their story.

RAU: Yes. I mean, Gay is a really tremendous person. She lived in — she’s about 60. She lived in Chicago. And when her mother needed care, she moved back to her home in Kansas. And the mother was in — Betty Mae, before she passed, she was in a nursing home and got private pay and Gay had to manage all of that. And at the same time, she was living to have very modest — two modest rental places. She was living in one of those, and she has to pay rent to her mother under Medicaid rules, because you — otherwise they would have had to sell it. So, she, you know, went into her own financial troubles, you know, just to take care of her mother. And then, you know, at the same time, they had to sell the mother’s house, because the way Medicaid works is after you die, while you’re allowed to keep a residence, you eventually have to repay Medicaid with your estate’s assets. So, it was, you know, both financially and emotionally to have to be doing all these things at once, being there for your mother in the nursing home, you know, taking care of yourself financially. These are all the things that Gay had to work through for multiple years.

SREENIVASAN: You know, one of the stories that you really dug deep on was the challenge to find labor to be able to — even if you can afford a home health aid to do this, what’s happening with the agencies? What’s that marketplace like?

ABELSON: So, there has always been a chronic shortage, but it’s gotten much worse as the job market in general has become stronger. And quite frankly, you know, these are low paying, very hard jobs. So, it’s very hard to fill. There’s no question that the gap, there’s already a gap. So, people struggle to find workers, and you struggle to find workers even under public programs like Medicaid. Similarly, though, it seems in the private market and the public markets, the situation is only going to get worse. There’s a lot of talk about how to, you know, build a workforce where people are available to help older Americans. But so far, it just looks very scary.

SREENIVASAN: What are the costs that we are not planning for? What surprised you as like, you know, a consistent theme that came up in your reporting that you wish more people knew about and thought about in terms of planning for their retirement or even long-term care?

ABELSON: I think personally what surprised me is how little planning and how little discussion public — when I say public discussion, I mean, discussion among families before something happened. There’s a tendency just not to talk about it, for parents not to talk about their finances with their children, not to talk about their wishes with their children. It’s almost as if we just hope if we don’t talk about it, it won’t happen.

RAU: Yes. I mean, the other problem with this, in particular, of long-term care is there’s a limit to how much planning you can do. I mean, you can’t plan to not have dementia. You can’t plan when that hit. You can’t plan if you fall and suddenly you can’t take care of yourself. You can’t plan when your spouse dies. And so, that’s one of the big problems is you’ve got this thing that is so unpredictable happens to, you know, everyone in — you know, or everyone’s at risk, and it’s the area of the health care system that has the fewest institutional guardrails.

SREENIVASAN: So, Reed, does it make a difference if we start planning in our 40s and our 50s? You know, somebody’s going to watch this and say, well, if I spend everything, I’m going to have to exhaust it all anyway before I qualify for Medicaid.

ABELSON: Well, I do think saving does help, although I think Jordan is perfectly right in saying that you can’t save your way out of basically what can be a catastrophic event. I mean, if you have — you know, if you need 24/7 care for 10 years, it’s really unlikely — even five years, it’s so unlikely you’re going to have been able to save enough. But I think it’s important at least to start looking at your options and to start thinking about it. Again, one of the things both actually, in terms of the readers’ comments and in general in the reporting, I was struck by how resilient people are. People can be very creative in finding solutions. And so, it’s important to start thinking about that early and start talking about that early.

SREENIVASAN: So, Jordan, if we lack the kind of institutional guardrails, is there any kind of role for state government and a federal government to play? And have we taken those steps? Have we tried to take those steps?

RAU: Well, we’ve tried. One of the — and failed on a national level. We have failed on that. There was a provision, that was a voluntary insurance provision in the Affordable Care Act, and it was repealed even before taking effect because it was unworkable. So, on the federal level, there’s very little movement except for a tiny bit of tinkering around Medicaid. There are some places, the State of Washington has instituted a mandatory long-term care insurance program. So, that’s an example where workers can get it, you know, if you’re fully paid in about $36,000 to pay for long-term care. So, that is something. But, you know, if the average, you know, assisted living facilities, $60,000, you know, you can do the math and see that you — that even that’s not going to go for as long. So, there are little efforts like that. Our State of California is changing its law so that it’s a little bit easier to have more assets and get on Medicaid. There’s some of that, but it’s all very piecemeal. And overall, I think we were struck by the fact that there’s so little political movement on this and it’s been the case for so many years that it’s almost people — it’s not almost, it is, people just take it for granted. This is the way it is. It’s not like a lot of these other battles over, say, prescription drugs where there’s an active discussion on Capitol Hill.

SREENIVASAN: If this is the kind of state of play in the United States, are there other countries that we can look at as models that we might be able to learn from?

RAU: We looked at a lot of countries. We looked at five in particular in this series, and I mean, the big problem is that there’s not — there’s no momentum for a mandatory social insurance program in the United States. So, you rule out the Netherlands. You rule out, you know, a lot of your northern countries. There are some programs in other countries that do do interesting things. I mean, Japan, I was really struck by. They have case workers who are assigned to each — to everyone. And they get — you know, they have about a caseload of about 40 people, but just to have a navigator who helps out is something that is in a systemic change. But, again, one of the things that I was struck in the reporting was how many problems there are in the foreign countries, too. They’re grappling with this as well. They have the same aging infrastructure problem. And their long-term care programs are not as radically different in places like Canada and England as you would think that they would be, right? Those are places that they have, you know, centralized public medical systems, but that’s not the case with long-term care. So, I mean, the United States, you know, we have this great chart in this series that shows where the United States is, in terms of spending, on long-term care, and we are way down there for wealthy countries, but everyone has got the problem.

SREENIVASAN: What happens to the caregivers in this process? Let’s say if you are caring for your own family member, when there’s an inevitable end to this, whether they see this as almost a sense of relief.

RAU: We actually — well, there was people that I talked to and I assume that we did too, who’ve said that, who said, you know, there’s a part of me that just wants this to over, and not just for themselves, but also for, you know, their parents. I mean, if you’re in, you know, incredible pain or you’re just so deep into dementia, you don’t know where you are, that’s a painful way to live and to see someone that you love live that way. And for the caregivers, there’s — you know, there’s a financial issue, the sacrifices that they have to make in terms of their own career and earning power, which then, of course, becomes a future problem for their own financial solvency when they reach their stage. And then it exacerbates the family stresses. And it’s everything. So, it’s just a, a very, very, very difficult thing to be a caregiver.

SREENIVASAN: Reed, President Biden, recently signed an executive order that was supposed to help the pay and working conditions of home health care aides and workers, is that going to make a difference?

ABELSON: I think it’s going to make a difference if it actually translates into something, right? I mean, for example, there’s a proposal in Medicaid to make sure that more of the money that goes to the agencies actually flows to the individuals providing work, but that’s a proposed rule. It hasn’t happened yet. And, you know, while intentions are really important, it’s very important to make sure that actually it translates into actual laws or new regulations. And so far, that’s been disappointing. Congress hasn’t been willing to really take this on. I think the fundamental issue is that all of this cost’s money. And the Republicans aren’t interested in spending that money. And, you know, the Democrats have a long list of priorities. So, who knows whether at some point there will be real appetite to spend money and actually make some real changes.

SREENIVASAN: Reed Abelson of “The New York Times” and Jordan Rau, KFF Health News, thank you both. The series called “Dying Broke.” You can find it in “The New York Times.”

ABELSON: Thank you very much.

RAU: Thank you.