At End Of Life ... Soaring Prices, Sinking Resources

Tell Me More begins its week-long series on the end of life. Monday's focus: money. About 25 percent of all Medicare spending is on end-of-life care, and a private room in a nursing home averages more than $80,000 a year. Michel Martin talks with NPR Health Policy Correspondent Julie Rovner, National Alliance for Hispanic Health President Jane Delgado, and National Caucus and Center on Black Aged, Inc. President Karyne Jones.

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MICHEL MARTIN, HOST:

But first, we begin what we hope will be a series of powerful conversations about a journey all of us will eventually face, to the end of life. All week, TELL ME MORE will be talking about how our families and our country are grappling with financial security, health, caregiving and faith as we age.

We'll hear from financial advisors, health care workers, family members and personal accounts from people facing all these issues. These may be difficult conversations to have and to hear, but we think they're necessary conversations and we begin what is a hard conversation for many people at any stage of life, about the money.

The price for aging and end of life care may be growing out of reach for many individuals and families. According to the 2010 Met Life market survey, the average annual cost of a private room in a nursing home is more than $80,000, while the average price for assisted living is close to $40,000. All this when the average senior takes in around $30,000 annually, including Social Security and pension benefits.

The Obama administration had hoped one provision of its signature health care law would help alleviate some of that financial stress with a program to help pay for long-term care, but on Friday the Community Living Assistance Services and Supports Program, or CLASS, was declared financially unworkable by the head of the Department of Health and Human Services, Kathleen Sebelius.

The AARP, the country's biggest advocacy group for seniors, put out a statement saying it is disappointed in the decision to end the program and that the need for long-term care will only continue to grow.

Meanwhile, the Congressional Budget Office estimates that annual spending on Medicare - that's the federal program that pays for medical care for seniors - will rise from $555 billion to more than $900 billion by the end of this decade and approximately a quarter of all of that spending happens in the last year of a person's life.

So where is this money going to come from? To talk about this issue, we've called upon three people with a deep knowledge of this issue. Julie Rovner is NPR's health policy correspondent. Jane Delgado is the president of the National Alliance for Hispanic Health. And Karyne Jones is president of the National Caucus and Center on Black Aged.

They're all here with me in Washington. Thanks so much for joining us.

KARYNE JONES: Thank you.

JANE DELGADO: Nice to be here.

JULIE ROVNER, BYLINE: Thank you.

MARTIN: And Karyne, why is it important to talk about the end of life or the last years of people's lives? Why are so many dollars associated with it?

JONES: Well, there are a lot of dollars associated with it because we really don't know and it varies from person to person.

MARTIN: Okay. So Jane, I want to give you a chance. Talk to me about why you think it's important to talk about the end of life.

DELGADO: It is the most important decision that you can make about your own life and much of the costs are driven because people don't make those decisions and the system makes it for them.

MARTIN: Julie, as we mentioned, you cover health policy. Spending for Medicare, as we discussed, is expected to increase, and as we mentioned, about a quarter of that goes to end of life care and hospital visits. Why is that?

ROVNER: Well, it varies, of course, around the country. In some cases it's care that people are getting because they've been injured. I mean, you know, we don't know that it's the end of their life. In some cases, though, it's care that people might or might not want and that they haven't gone to the trouble of expressing their wishes. Do they want aggressive care or don't they want aggressive care? And that's really important as you're reaching the end of life.

MARTIN: You know, Karyne, you were involved with a group called the Commission to Modernize Social Security and this group found out something very interesting, that there are very different ways in which Social Security is used by different ethnic groups. For example, your group found that the vast majority of whites depend on Social Security for retirement benefits, but almost half of African Americans and a majority of other racial and ethnic groups rely on survivor and disability benefits. Why would that be?

JONES: Because of institutional racism, because of long-term poverty situations. Most people have worked in low-wage or part-time positions all their lives. A lot of people have had to take off from work and they don't have the number of quarters needed once they retire. So there are all different kinds of things, but it mostly affects minority groups.

What people need to understand is, is that just the Social Security program as it is and because they do receive survivor and disability insurance much more than other people, it's keeping so many people out of poverty...

MARTIN: So these programs aren't offering people a lavish retirement. What they are is keeping them out of poverty.

JONES: Absolutely. And you have to remember that a lot of the beneficiaries - it's the only source of income to assist them in just living day to day, and when you, and again, when you start talking about end-of-life situations, it's the money that's going to carry them and the only source of income that they can apply if they have to go into a nursing home, if they have to go in assisted living, which obviously will either have to be supplemented by some other, Medicaid or what have you.

MARTIN: You know, Julie, can I just ask you this question. Many people, I think, might assume that the reason that end-of-life care is so expensive is that people are moving into institutional settings and they're moving out of their homes, but even within the home, support within the home for people who want to age at home is expensive.

ROVNER: Absolutely. Even care at home, if you need someone to come in, you know, once or twice a day, can be very expensive. It can cost, you know, tens of thousands of dollars a year. Aging is not for the faint of heart or the small of pocketbook.

DELGADO: And low-income people may not have the choice to age at home.

MARTIN: Jane, talk about that.

DELGADO: They may not have a choice of where they can get care. There may not be anyone who can be there for them. They may not be able to afford to have someone come once or twice a day and take care of them. These are difficult things to do. It's hard because sometimes, physically, you have someone who's older taking care of someone who's much older, and they can't do the kinds of things that are necessary.

ROVNER: And sometimes public programs will only pay for institutional care. There are some perverse incentives in which, even though the home care would be less expensive, the way the system is set up, people are forced into institutions where they don't want to be where it costs the system more and yet that's the way the system is set up.

MARTIN: That's important...

DELGADO: You know, and...

MARTIN: Jane, go ahead.

DELGADO: I'd like to add to - when my mother was sick and about to die, she was in the hospital and I wanted to take her home that night and they said, no, you can't take her home because she's going to die. And I was like, well, what is the risk here? I mean, you said she's going to die. I took her home. The short story is she lived for, like, three months. Now, I asked her after a week - Mom, you're doing so well. She goes, of course. You brought me home.

So I think that part of end-of-life care is we don't know when that moment really will be.

MARTIN: Do you think that there are cultural taboos against talking about this or do you think that that's a myth that people use to sort of justify the fact that they're not offering the kind of care that actually makes sense for people? I mean...

DELGADO: Hospice and nursing care in the Hispanic community and I think in many other communities are very hard topics because, if you're in a family, it means you're giving up on the person and that is like taboo.

MARTIN: So you think there is something to that? There might be sort of...

DELGADO: Oh, yes.

MARTIN: ...a taboo that you're not doing right by your loved one and...

DELGADO: Most definitely. A lot of guilt.

MARTIN: What do you say, Karyne?

JONES: I don't want this end-of-life discussion to be a tale of woe.

MARTIN: Sure.

JONES: I mean, I really think that it is important that we all recognize that we understand our own mortality, that we understand that this is going to happen, that it's more difficult for some people than it may be for others in terms of decisions that they have to make. But I think it's something that people just need to be aware of and start really deciding - at the end of my life, whenever that may be, because you don't know when it is - this is what I want to happen. And if they just have some sort of advance directives, they've talked with family, they've spoken with their minister, they've - or whomever, so that they can help them in that process, I think that it will just help in terms of economics, in terms of planning, in terms of just your own faith or your own preparation, and so end of life - I don't want it to be, oh my God, it's just so terrible because I think that's what keeps us and prevents us from coming up with good policy to deal with things.

MARTIN: Julie, you were talking about - you were telling us, and you cover this a lot - a lot of people are unclear about what Medicare actually covers and what it doesn't cover. Could you talk a little bit about that?

ROVNER: That's right. Medicare, you know, does cover what we call acute care needs when you get sick, but if you need long-term care, if you have a chronic condition, Medicare doesn't cover most nursing home care. It'll cover a short-term stay in a nursing home, but if you need long-term care, Medicare, by and large, does not cover that. And as long as people have been saying this, people do not understand that, that is something that Medicaid will cover if you spend down all your assets and you have nothing left and you're poor. But you really need long-term care insurance or else you're going to end up on Medicaid. So that's something that's important.

There is a hospice benefit in Medicare if you are terminally ill and you would rather not have aggressive treatment, and that's something that there has been more use of in recent years.

MARTIN: If you're just joining us, you're listening to TELL ME MORE from NPR News. We're starting our series on aging and the end of life by talking about the financial issues related to this period. Our guests are Julie Rovner. That's who you heard just now. She's NPR's health policy correspondent.

Also with us, Jane Delgado, president of the National Alliance for Hispanic Health. And Karyne Jones, president of the National Caucus and Center on Black Aged.

You know, one of the things, Julie, I was interested in is that even talking about these issues seems to be politically difficult, talking about how health care expenditures are made, when and where. Many people will remember during the discussions over the health care overhaul in 2009, there was this big dispute about the so-called death panels and the argument was that, oh, you know, the government is trying to push people to end their lives and the people who are proposing this are saying, no, they're trying to pay people for the time to talk people through what's likely to happen and how they should plan for it.

Could I ask you - why is it so hard to talk about?

ROVNER: It was actually in 2009 when they were putting together the health line, it was actually a Republican proposal originally. It came from Johnny Isakson, a senator from Georgia who wanted to pay doctors to talk to seniors about what they wanted to do, to express their wishes. Do they want a lot of care if they become seriously ill or do they want less care? Because there was a poll that found that actually it was almost evenly divided between seniors who were worried about getting too much care or getting too little care if they became unable to express their wishes.

And Congress just - a lot of people just completely freaked out and we got these arguments that these would death panels. It was ultimately taken out of the law, so it's not even in there, so doctors can't be paid for counseling people about just expressing their wishes. Do you want a lot of care or do you want a little care?

MARTIN: Jane Delgado, so put your psychologist hat on, if you would, and also your own personal experience, if you don't mind my bringing it in. I understand that you've actually taken care of a number of people, five people, in the last months of their lives, including your mom.

DELGADO: Yes. I took care of them and with four of them I was actually there when they died, so...

MARTIN: Well, we're sorry for your losses and we thank you for being willing to bring that experience to bear here. I wanted to ask - is it a common experience that people have a hard time talking about their wishes and what they hope and expect at the end of life? And why might that be?

DELGADO: It's a very hard topic and my first friend died when I was 32 and I realized then that the most important thing you can do is say what you want at the end of your life.

MARTIN: How does this difficulty communicating have financial consequences?

DELGADO: Well, what happens is Hispanics tend to, according to the Medicare data, spend more in end-of-life care than other communities, and the reason is because probably no one asks us what we want. We probably have not had a relationship with a health care provider, so they don't know what to do. So they do things to us to keep us alive which may not be wanted or necessary.

MARTIN: Karyne, what about African-Americans? What have you observed, as well?

JONES: Well, for us, I mean, no one wants to face their own mortality, but in reality, I think it's not that we don't know we're going to die. I think what it is is we just live day to day and so there's no planning in the process and, of course, we have the same - a similar problem in our community, is that health care providers are also not talking to people and getting them prepared in a way. So it's not something that people want to talk about because they actually have to deal with so many different circumstances day to day that to think long-term - I mean, it's very, very few people that are going to say, well, I've got to save my money for when I get old, where you hear that, but in reality there are just so many other expenses that go on just living and surviving day to day.

I mean, I deal with people every day who do make that choice between buying medicine and paying their rent, and so if you talk about now adding in paying for long-term care or looking at end of life, they can't. They're just surviving day to day.

MARTIN: So Julie, let's talk a little bit about sort of the future conversations that are coming down the pike, because we know the health care overhaul that was advanced by the Obama administration and adopted by the Congress is under a court challenge, is still very controversial.

But these issues around expenditures under Medicare are not going to go away. What are some of the conversations that we are going to be having or need to be having as a country about the dollars we spend about end of life?

Now, you already talked about one, the whole question of advance directives, of persuading people to be more clear about what they want individually. What are some of the other conversations we need to be having?

ROVNER: Well, I think people certainly - you know, with 78 million baby boomers about to become eligible for Medicare over the next 20-some years, you know, I think people really do have to think about what they want, how they're going to take care of themselves in their retirements, and really, you know, have a talk with your doctor. Just because it wasn't in the law that doctors will be paid to have this conversation doesn't mean you can't have this conversation.

So really know what it is you want. Have the conversation with your family. Make sure your family knows what you want. These are really important things to think about and to talk about. They are difficult conversations, but I think it's really more important that we take these things upon ourselves as patients.

MARTIN: Jane Delgado, the report we mentioned earlier - this is this commission which Karyne served - found that Latinos are much more likely to rely on Social Security as their only source of income in old age and two-thirds of Latinos are employed by companies that don't offer any kind of retirement savings program, you know, at all. So I'm going to ask you, what are some of the conversations that you think people most need to have about their future, even as they're dealing with, as Karyne talked about, day to day issues of survival, in some cases?

DELGADO: Well, I think the difficult discussion for people to have - everyone knows they have to save for retirement. Another difficult discussion to have is the whole concept of hospice and what it means in people's life, and right now our system have set up some perverse incentives, telling people you can only go in for hospice care if you give up treatment.

And now people at CMS are changing that and saying, maybe you don't have to give up treatment. Maybe you can get hospice care because the trajectory does not look as good. And that would actually help save the people money and give the people back their dignity.

MARTIN: Karyne, what are some of the other conversations that you think people need to have or ways the society need to have around these issues, particularly given the people that you work with most closely?

JONES: Well, I would just think even, I mean don't wait until you get old. This is a conversation - I mean, aging is not just for old people. Aging is everybody. We're all getting older and I think it's a conversation that everybody has, that you understand the wishes of someone and so one of the things that we try to do is just to make sure that we're talking to people, that they understand.

I think people should have wills. I think people should have conversations with their children and their family members. Exactly know what's happening if it's not written down anywhere, just so that we understand that - that that understanding is there on what it's going to take. And in terms of finances - well, again, I deal with people every day who just can't make those decisions right now, and so I don't know of any organization that's fighting on behalf of all the Medicare rights or what have you that doesn't say that there has to be some reform. I mean, that has to happen, but we certainly don't want the benefits to go away, because for many, many people Medicare is the only form of health care that they have, and so we want to make sure that, you know, we take care of those people.

MARTIN: Karyne Jones is president of the National Caucus and Center on Black Aged. Jane Delgado is the president of the National Alliance for Hispanic Health. She's also a psychologist and trained psychotherapist. And Julie Rovner is NPR's health policy correspondent.

They were all kind enough to join us in our Washington, D.C. studios. Thank you all so much for joining us.

JONES: Thank you.

DELGADO: Thank you.

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