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End-Of-Life Conversations Not Easy, But Necessary


This is TELL ME MORE, from NPR News. I'm Michel Martin. The countdown to Thanksgiving is underway, so we decided to focus on what Americans should - and maybe should not - be talking about at their holiday gatherings. Later, we're going to hear from two of our etiquette experts to talk about the revelations, declarations and family secrets that somehow always seem to emerge at this time of year. And we'll talk about how to handle those with a bit more grace than is often the case. That's in just a few minutes.

But first, we want to focus on one of the difficult conversations that many health professionals wish you would have over the holidays when the family is together, but that most people probably will not have. We're talking about end-of-life care. And as the nation ages, more families will be forced to make difficult decisions about this. But according to a new study by the Pew Research Center's Religion and Public Life Project, the vast majority of families are not having these conversations.

According to a new report from the center, just 37 percent of Americans say they've given a great deal of thought to end-of-life care for themselves. Only 35 percent say they've put that information in writing. We wanted to talk more about this so we've called Cary Funk, lead researcher at the Pew Center. Also with us for additional perspective is Marion Somers, also known as Dr. Marion. She is a geriatric specialist, and she's author of the book "Eldercare Made Easier." They're both with us now. Welcome, thank you both so much for joining us.

CARY FUNK: Thanks for having me.


MARTIN: So Cary Funk, as we mentioned, the vast majority of Americans just aren't talking about this and not creating plans for this. In fact, you've found that a quarter of those age 75 and up haven't given much - or any - thought to end-of-life care. Why do we think that is?

FUNK: Well, I mean, I think that's what's striking; is despite the graying of America, there's this sizable minority that says they haven't even given very much thought - I think not much thought, or not at all thought. That's very closely related to whether you've taken some kind of action, like talked about your wishes with another person or written it down. So these two things, whether you've thought about it or whether you've done something, are closely correlated.

MARTIN: One of the other things that really struck me in the study is that you found that more than 3 in 10 Americans say that medical professionals should do everything possible to save a patient's life. And that's up 9 percent in less than a decade. Any ideas about why?

FUNK: Yeah, so that's - I mean, that's, I think, a puzzle. We're looking over times since 1990 - which is, you know, 23 years, a fairly long time span. And of course, the majority position has stayed the same. About two-thirds say that they would - that they think medical staff should sometimes stop treatment. But you're seeing roughly a doubling of the share saying that they think that medical staff should do everything possible in all circumstances.

MARTIN: Do you have any clue about why that might be?

FUNK: When we look a little deeper about which groups are changing over time, the main thing that strikes me first is that it's a broad-based change. Lots of groups are changing. So it seems to be kind of across the board. There are some groups that are changing more. So you see a more pronounced change among younger adults as opposed to older adults. And in this case, most of the time through these findings, when we talk about younger, we're talking about kind of under 50. And over 50 is where you often see the big cuts. We also see a little more pronounced change among people who say they haven't really given much thought to their own wishes. So that's part of the puzzle as well.

MARTIN: Dr. Marion, one of the reasons we were glad you were able to join us is that that's one of the things that you do, is help people have these conversations. One of the things we noted in the study is that attitudes about end-of-life care can differ substantially, depending on racial and ethnic background. A majority of black Protestants and Hispanic Catholics wanted all possible care provided to prolong their lives. The majority of the whites surveyed did not. So Dr. Marion, I wanted to ask if - first, if you had any insights into why you think that might be, just based on your experience. And secondly, how could you open up these conversations if you suspect that, you know, family members don't want to talk about it?

SOMERS: It's a very difficult subject, and people do not want to talk about that. We all understand that, but the holiday season is a perfect time to bring these subjects up. You've got the family together. And I have found that when people open the discussion and they start with, have I done it for myself? It's so much easier to talk to your other family members. I have taken care of my finances. I have taken care of my - all my issues - my legal issues, my financial issues, my death and dying issues.

And when everybody knows what you want, it makes it easier, No. 1. And No. 2, if you have an elder person that you're concerned about, and if you have taken care of these issues, it's so much easier to open the discussion and say, hey Mom or Dad - or whoever - I have done X, Y and Z; and I just want you to know what my plans are. And I would just like to know what your concerns are, what your wishes are.

I have also found that when families have not done preplanning - and I always say a failure to plan is a plan to fail - if they have not done it, and something happens to the older person that everyone has been concerned about, what happens? The family gets into conflict with each other. And that conflict can be very detrimental to the family, at a time when there is a crisis dealing with an older person.

MARTIN: You know, we...

SOMERS: So I say do it now, whatever your issues are. And the holidays are a perfect time to bring the subject up.

MARTIN: Do you - why are the holidays a perfect time to bring the subject up?

SOMERS: Because one, you have the family together. So if there are differences of opinion, they can all be aired in a non-confrontational situation, a non-emergency situation because once there's an emergency, all hell breaks loose. And it's very difficult. And all the family history and former conflicts come to the surface, which is not helpful when you're dealing with an emergency. The time to do it is now, whether you're dealing with the elder care, long-term care issues; or you're dealing with them as what do they want to do if there's a health issue or a health emergency, or what are - where do they want to live as they age, or do they want to move in with you, or do they want to live independently? These are - I mean, the roster of questions is enormous, but the time to ask the questions is when you're together. Face-to-face is almost the easiest way.

MARTIN: Cary Funk, is there something that medical professionals could be doing differently to help patients and families begin these conversations; or have you found that there are other key people in people's lives who are the best drivers of these conversations?

FUNK: Right.

MARTIN: I don't know if the data sheds any light on this.

FUNK: I mean, it's - this is one of the hard topics to do a survey about because the issues are complex and, you know, they're raising difficult moral and ethical issues. So it makes sense that it's difficult to talk about it. But one of the things that really struck me is that these are issues that loom very large in the lives of many Americans. One way we got out that was just asking people, have you had a close friend or family who's been - who experienced a very serious terminal illness or been in a coma within the last five years? So kind of broad-based; but about 47 percent - so roughly half of adults - said yes. And, of course, those people run the gamut. They're older, they're younger, they're different socioeconomic classes. It's everyone these - who are touched by these kinds of experiences.

MARTIN: Dr. Marion, I wanted to ask about people who may or may not have some experience with dealing with authority figures and paperwork, and how that could play out. For example, we know that after Hurricane Katrina, for example, a lot of African-American families lost their homes, or didn't get insurance payouts that white families did, because they had never changed the titles to their property. They'd never spelled out - so there was no paper trail that they could call upon. And you could argue that, well, it's because they'd never had any experience with this. Do you have some advice about how you raise issues with people who are used to handling things informally within the family? I mean, what do you say?

SOMERS: You start with the personal pronoun "I." I am concerned. I am worried. And that opens it up; rather than say, you must do this, you must do that. When you open it up with a personal pronoun, they feel this is a personal issue; you're really concerned about them. So it's your vocabulary, and how you approach it. And if you have already done this for yourself, if all of your issues have been taken care of, you can always say, this is what I have done to protect my family, to protect myself. This is how I'm going to take care of my long-term-care issues. Can we broach this with you as well? And you say, I am concerned, I am worried, I am losing sleep over this. And then it brings it more to a personal level, but a nonthreatening personal level.

MARTIN: Cary Funk, any final thoughts about the survey, that jumped out for you? I must say, I was struck by how few people had taken any steps to think about these issues, or just share their thoughts with loved ones - even at advanced stages of life. Any final thoughts?

FUNK: Yeah, I think what's most - that's one part that I think is very interesting. And the other part is that there's more than one thing going on. There are big differences by race and ethnicity. There's also big differences by religious group. And both of those aspects of ourselves are important.

MARTIN: And finally, Dr. Marion, is there the one thing you wish people would do this holiday season, especially if they're spending time with family - the one thing?

SOMERS: Enjoy the holiday, but if you have a burning issue that is keeping you from sleeping at night, you're so worried about it, bring it up. The worst that can happen is nobody wants to deal with it. But at least you've brought it to the surface so that people know this is an issue for you, that you're concerned, and what the concerns are. And the clearer you articulate, the better.

MARTIN: Marion Somers is a geriatric specialist. She's known as Dr. Marion. She's the founder of a new campaign called LivingSafer.TV, to help seniors live more independently as they age. She's also the author, as we said, of "Elder Care Made Easier." She joined us from NPR West in Culver City, Calif. Here in Washington, D.C., Cary Funk, senior researcher at the Pew Research Center's Religion and Public Life Project. Thank you both so much for speaking with us. Happy Thanksgiving to you both. Transcript provided by NPR, Copyright NPR.