Recording A Life In One's Final Days

Guests

Kate Frego, mother underwent dignity therapy
Alix Speigel, science reporter, NPR
Harvey Chochinov, director, Manitoba Palliative Care Research Unit

As people near the end of their lives, many fear dying without leaving something behind. "Dignity therapy" helps patients document their life stories in their own words. The majority of patients who try it report an increased sense of meaning and purpose after treatment.

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NEAL CONAN, host: This is TALK OF THE NATION. I'm Neal Conan in Washington. Before she died earlier this summer, Aida Essenburg wrote the story of her life. The project was part of what's called dignity therapy, and more on that in a few minutes. But we want to begin with Aida's daughter, Kate Frego, who joins us on the phone from her office in St. John's in the Canadian province of New Brunswick. And thanks very much for being with us today.

KATE FREGO: Well, thank you for inviting me, Neal.

CONAN: Listeners may remember you from a story earlier this week on MORNING EDITION. Your mom knew she was dying and hinted to you and your sister about this document that you'd receive after she died?

(SOUNDBITE OF LAUGHTER)

FREGO: Yes, she did. Well, she was hinting about the contents of it. We actually knew that the document was coming, and we definitely knew that she was participating in dignity therapy well before she even started it. So yeah, she kept it kind of mysterious, though, in terms of what she was saying in the document.

CONAN: Mysterious, she wanted you to - it was a tease.

(SOUNDBITE OF LAUGHTER)

FREGO: Yeah, she has a terrible sense of humor, actually. And she was very - she was quite clear that she was going to say things in the document, and she didn't want us to kind of edit them or comment on them ahead of time. She wanted them to be things that she said to us after she was gone. And so she wouldn't tell us precisely what was in it.

Now, we did have a list of the questions that she was being asked, but my mother, being a member of our family, we all ramble. So her - the questions actually don't necessarily match the entire document. She talked about all sorts of things.

CONAN: And I wonder, did you and your sister wonder what she was going to say?

FREGO: Well, we did. We wondered, and I should add too, also my brother. He - all three of us really wondered what was going to be in this document. We looked at the questions, and it was - the questions were things like, you know, what do you feel you accomplished in your life, are there any messages you'd like to leave behind, as well as, you know, the sort of factual parts of her life.

And we were very curious about what she would feel was important to tell us in this document and what sort of spin she would put on her life.

CONAN: And when the day came, what did you learn?

FREGO: Well, interestingly enough, there were no huge revelations, but in a way that actually turns out to be kind of reassuring. My mom was the person we knew. There were no deep, dark secrets, and she didn't choose to shock us with any, you know, wild and wonderful things at the end of her life.

Basically, what we have is a document that really - it captures her voice. It captures her thinking and her attitudes and particularly her attitudes at the end of her life, which I must say in some ways some of them had mellowed a fair bit. And it was lovely to read these things and to read what she thought we would be interested in, hearing about things that she felt were of value in her life and messages that she had for us.

CONAN: I wonder, do you have the document with you?

FREGO: I do. I always have the document with me.

CONAN: Would you mind reading a bit about what your mother said about what she accomplished in her life?

FREGO: Well, there's quite a lot here, actually. She talks about now, let's see, I just have to find the right page. I have a bunch of little markers here that are helping me to flip through the pages because I like to find them myself.

She says - well, let's see. At first, when the interviewer asked her what would she say were her accomplishments, this is typical of my mother. She always - she would never blow her own horn. She'd always say what somebody else said. So she starts off by saying, well, my kids think I accomplished something fairly good by giving the world three wonderful children, ho, ho, ho. That's her little laughing.

And although they seem to think it's fact, when they say it, they say it seriously, which amuses me. And they tell me that I kept my husband alive longer than he might have with congestive heart failure and cancer and stuff.

And then the interviewer caught on to the fact that she was saying what other people said about her. So she says, well, that's what they say. What do you say are your accomplishments? And then she goes on, actually, for several pages with different meandering notes about I'm proud of the fact that we could manage to live on a few bucks a month. I managed to learn how to preserve food and preserve chickens.

And she describes all these various things about the things that she patched and did to save money. And then she talks about the various activities that she had - that she participated in through the church and just a whole variety of these sorts of bits and pieces. I can read you a little blurb here.

She says speaking of church, for years, Gus, that's my dad, and I hosted a men's fishing derby at our cottage. We'd borrow or otherwise arrange boats, and another couple would be with us. So we two ladies would make 10 or 12 dozen hamburgers, and they'd have this big deal where they'd invite all the fathers and sons to come out for this enormous barbecue.

And I remember these so clearly, this fish derby and the barbecues. So she felt that was something that she was really able to contribute to the community.

CONAN: And did you get the impression that doing this project was important to her?

FREGO: Doing the project in terms of the document, you mean?

CONAN: Yeah, yeah.

FREGO: Well, yes and no. I would say that my mom didn't look at it as as its term, dignity therapy. I don't think she looked at it as therapy. I think she looked at it as an interesting project. And because her kids are involved in research in our various careers, she understood the need for research and so on.

But I think - quite honestly, I think the reason my mom did this was because she loved to talk and also because she had been working very closely with a social worker who specialized in oncology and had been really very helpful from the time my mom was diagnosed. And the social worker asked her to take part.

And I think from what my mom said, she didn't want to let her down. She actually wanted to take part because this woman felt it was valuable and asked her to take part. But she did come to us, her kids, and asked us if we thought it was appropriate and showed us the questions and wondered if we would be upset with her if she took part in it.

So I think she saw it more as she was giving to the researchers as opposed to receiving therapy, which is kind of an interesting twist.

CONAN: It is, and if the goal was to give her something that she could leave behind, something of herself, it sounds like that was a success, if you carry it around with you.

(SOUNDBITE OF LAUGHTER)

FREGO: It was, and it was - it's really - I don't carry it with me all the time but when I'm doing interviews, I make sure I have it with me. But it is at my home all the time. And there are several parts that I read over again just because - it's funny, in this age of technology we never thought to tape-record my mother.

And, you know, all these years, we don't have anything that's our mother's voice speaking or singing or doing anything. And so the closest we have really now is this document, where we read it and it's just amazing how her voice and her personality come through.

And when I read it, even in my head, I hear her voice. I really - you know, it really captures her amazingly well, except the places that she edited to correct her own grammar. Those kind of don't ring true, but...

(SOUNDBITE OF LAUGHTER)

CONAN: Kate Frego, our condolences on your loss.

FREGO: Well, thank you very much.

CONAN: Thanks very much for being with us.

FREGO: My pleasure.

CONAN: Kate Frego lost her mother, Aida Essenberg, in July and joined us today from her home - from St. John's in New Brunswick. If you or your family has been involved with a project like dignity therapy, we'd like to hear from you. Our phone number is 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. Go to npr.org. Click on TALK OF THE NATION.

Later in the program, the newly released Jackie Kennedy tapes, but first, dignity therapy. That story I mentioned on MORNING EDITION was reported by Alix Speigel, who joins us here in Studio 3A. Nice to have you with us today.

ALIX SPEIGEL: Thank you.

CONAN: And we don't necessarily think of the last few weeks or months of life as a moment of creativity or growth.

SPEIGEL: No, I mean there's this common perception that we kind of die the way that we live. But recently, I would say in the last couple of decades, there's been this attempt to develop a couple psychotherapies specifically for that moment of dying. And dignity therapy is one. There's another one called meaning-centered therapy.

And what these therapies - part of what they're trying to do is kind of allow us to reflect on our life and grow at that moment in our life and really change at that moment in our life and not die necessarily the way that we live, unless we choose to.

CONAN: Anxiety at the prospect of death, I think that's probably pretty common. There are other things that come up, depression, and I understand this may not answer all of them.

SPEIGEL: Yes, they are developing these therapies. They haven't necessarily been proven at this point. It's still early days. They haven't necessarily been proven to effectively deal with depression or with anxiety. They just kind of open a space for people to reflect in a systematic way on the life that they've lived.

CONAN: So maybe not for everybody, but a recent study shows nearly 70 percent of the patients who do use this treatment method experience an increased sense of purpose and meaning.

SPEIGEL: Uh-huh. Dignity. Dignity or - right, the kind of softer measures, you know, a sense of dignity, a sense of meaning, those kinds of things. It seems like it can move the needle on those kinds of things but not necessarily depression and anxiety and those kinds of issues.

CONAN: One of the people you interviewed in your piece, a psychiatrist, said basically death presents us with a kind of wall, and there is an opportunity to, before we cross over, turn around and reflect.

SPEIGEL: He says that it doesn't present us with an opportunity, it kind of forces you to turn around and reflect, he believes, and that kind of reflection can really push you towards growth. And there's a kind of small community of psychiatrists who want to take advantage of that and steer people in a way that might allow them to get more out of that moment in their lives.

It's interesting, you know, I was talking to my editor about it earlier, and she said this is really kind of a secular answer to, you know, what - the role that religious institutions often play at the end of life. This is kind of a secular answer to that.

CONAN: Because some people would say those who are religious might have other answers.

SPEIGEL: Well, you know, some religions will, you know, send somebody to be with you as you die, and here is the kind of secular answer to that.

CONAN: We're going to be talking with one of the psychiatrists you mentioned, who's been developing this therapy, dignity therapy in particular. But I wanted to ask you: How many places are using these sorts of approaches? How common is it?

SPEIGEL: Well, I mean, that's probably a better question for him in terms of dignity therapy. I think dignity therapy is used around the world. It's certainly used in the United States. I talked to a woman in San Diego who did it, and there are other people in New York who do it and kind of around the country.

It's not wildly popular at this point. As I said, these are new therapies. The other one that - the meaning-centered therapy is another one of these therapies. And they're - they're still kind of coming up in the world, I'd say.

CONAN: We're talking with Alix Speigel of NPR about dignity therapy, encouraging patients to share their life stories in their final days and months. Up next, as we mentioned, one of the doctors who practices dignity therapy joins us to talk more about how and why it works.

We'd like you to share your story. If you or a family member has participated in this, give us a call, 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. In recent years, doctors developed a new way to help people near the end of their lives leave something concrete behind in the form of a life story as they want it told to their family and friends.

We're talking today about dignity therapy. If you or your family's been involved with a project like dignity therapy, we'd like to hear from you. Give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. And click on TALK OF THE NATION.

NPR science reporter Alix Speigel is with us. Her piece on dignity therapy aired earlier this week on MORNING EDITION. You can find a link to that at npr.org, and click on TALK OF THE NATION. Let's get a caller on. Let's go to Liz(ph), Liz with us from Scottsdale.

(SOUNDBITE OF BUSY SIGNAL)

CONAN: And I guess Liz has - Liz, are you there? I think Liz - that sound was Liz leaving us. Instead, let's see if we can go to Barbara(ph), and Barbara in Loveland, Colorado.

BARBARA: Hi.

CONAN: Hi, you're on the air. Go ahead, please.

BARBARA: Thank you. We had a DVD story of our mother made, and now that she's lost her short-term memory, it's lovely to have that video remembrance of her and her speech cadence and her hand motions and the stories of when she was a little girl that she no longer remembers, even though she's still alive.

CONAN: And was this done as part of a therapy project?

BARBARA: It was. It's a woman who will interview family members as they are declining, and they want to put down their life stories for the rest of the family.

CONAN: And it's helpful for you and for her?

BARBARA: Yes, yes. I think it is much more helpful for us now. I don't think she ever remembers Tina(ph) visiting anymore. But it's wonderful for the rest of the family to have it. And this woman also did one for our last surviving uncle. So we have two sides of the family remembered.

CONAN: I wonder, did their stories agree?

BARBARA: Some of the time.

(SOUNDBITE OF LAUGHTER)

CONAN: Thanks very much for the call.

BARBARA: Thank you.

CONAN: And Alix Speigel, these stories can vary. Obviously a message of warmth and, gee, wonderful stories - sometimes that's not the message.

SPEIGEL: Yeah, I mean, that's actually part of what drew me to this story. I read a study about dignity therapy in this journal, and the question that I had was, okay, so how do the stories that we tell ourselves at the end of our lives differ from the stories that we tell ourselves at other points in our lives? Do you feel compelled to kind of bend the narrative of your life in a more positive direction?

Because I kind of had the sense that I - that's something that I might do. And then the other question that I - the other really big question that I had was, well, do the stories need to be true in order to be therapeutic? And because, you know, I mean I can imagine where telling a kind of, a whitewashed version of your life would make you feel more peaceful at that point.

And I was wondering also if - and this is a question that we can pose to Harvey Chochinov, the man who created dignity therapy - if the therapy kind of directed people in the direction of whitewashing their stories to give them peace.

CONAN: Well, let's ask him. Harvey Chochinov is director of Manitoba Palliative Care Research Unit and professor of psychology at the University of Manitoba. He's conducted a number of studies on the effect of dignity therapy on the end-of-life patients, and he's with us from the studios of the CBC in Manitoba. Thanks very much for coming in today.

HARVEY CHOCHINOV: My pleasure.

CONAN: And put that - Alix's question to you: Is there an intention towards twisting or bending the story towards a more positive aspect?

CHOCHINOV: Interesting question, and I recall that when she and I spoke, she certainly asked me questions about that. I don't think that that's the case with dignity therapy. It's not that it is pushing people towards a more positive framing of their story, but I think it's certainly pushing people towards an authentic engagement of their story.

And so as I recalled with her, there were - I mean there are many instances when people shared very positive memories and messages of love and affection and gratitude, but there were also many, many stories where people in a very deep, authentic and genuine way left messages that sometimes were very sad, asked for forgiveness, talked about, you know, various misgivings, mistakes that they had made along the way.

And I can tell you in the early days, when we were developing dignity therapy and thought, oh, this simply can't be, I mean, we've got to try and perhaps look for the positive, people really didn't want to go there at all. If what they have to say is I'm sorry for having, you know, made mistakes, then that's the message of dignity therapy.

So it really is not about trying to shape things in a positive way. It's about trying to shape things in a way that is truly authentic.

CONAN: Yet as Alix says, sometimes the stories are different from the ones they did tell during - earlier in their lives.

CHOCHINOV: Well, perhaps that may be the case. But again, I think certainly our experience of dignity therapy and those who I've spoken to around the world who practice it, what you hear are people telling stories that perhaps being approximate to death really kind of moves them to tell.

So it may not be the story that they would have told early in their lives, but, you know, for instance the memory comes back of a woman who really was within days of death, and because of metastatic pulmonary disease, she whispered out a story that told of the derivation of her daughter's name based on a character in a French film she had seen when she was a young woman.

It was the story that felt most compelling to her. For others, the story is really about, you know, trying to leave something for their family member. We sometimes forget that - I mean during the course of dying, one thing that doesn't change is the people we care about and love are still the people we care about and love. Dignity therapy offers an opportunity for people who are losing so very much to continue to do something for people they care about.

And so sometimes, leaving words of guidance, you know, creating opportunities for messages or encouragement or giving hopes, wishes or dreams, these are things that we do all during the course of our life to nurture relationships, and certainly our experience is that, you know, that drive to try and help the people we care about seems to be sustained almost until the very, very end.

CONAN: Alix, I can see you trying to get in with a question. Go ahead.

SPEIGEL: Oh, well, I had a couple of different thoughts. But one thing I remember us talking about during our interview is this question of do you as a therapist allow people to leave kind of bombs behind, so include something that will really hurt the person who is left behind. I mean, I know that it is a process which, you know, you - where you allow people to tell all kinds of stories, but aren't there stories that you don't allow people to tell?

CHOCHINOV: Well, I think - I'm not sure I would use the word allow. But what we do - I mean, we do feel that we have a duty to care both towards the person who is telling the story and the person who will receive the story. So we would no more want to be part of facilitating someone leaving a bomb after the fact than we would in the here and now.

So if a patient asked me in the here and now could you please let my partner know, you know, the following, well, if the following is meant to hurt and eviscerate, then really that's not part of the duty or mandate of a health care provider.

So what we will do, though, is we will point out to the person who is engaging in the conversation the fact that there is a special quality to what's taking place, that the words they're leaving behind, even though initially they may be biting or attempting to leave that bomb, what we'll say is, you know, if this - if this was the last chance you had to share a moment, you know, with your loved one, even though it's been a contentious relationship, are those the words that you would want to leave behind?

And very often it's a wake-up call for people, and what they do is they come up with something that is balanced and authentic. I think I may have shared the example of somebody who was really very put off with a child who they felt, you know, estranged from and disappointed with.

But instead of leaving that exclusive - and also felt that this person, you know, because of unemployment was taking advantage of them and so on - but instead of leaving that very difficult message, a message, you know, for which there really is no reproach after the fact, when I said, you know, is that really the final thing that you would want to say to your child, they became quite reflective and tearful and said, no, no, I would want them to know that I love them, I would want them to know that I care about them, and I would want them to know that I'd like them to get a job.

CONAN: Okay, let's get a caller in on the conversation. Let's go next to - this is Jesus(ph), and Jesus with us from San Antonio.

JESUS: Yes, I had a gentleman whose story I captured. He had 12 children, 30 grandchildren and about 40 great-grandchildren. He wanted to be remembered. He knew he was about three months terminal, and he wanted to feel closure, and I think that the closure that he got from the session was exactly what he was looking for because he ended up living another year and four months.

CONAN: And how did it change his feelings, do you think?

JESUS: Well, he had been trapped in a role of no English and no - not-proper English and not-proper Spanish, so he had never really communicated very well with the kids. And so he felt like a burden had been lifted from him after the session and after, you know, the whole process.

CONAN: And was it important that it was in his words, that this was his story?

JESUS: Absolutely. And I that was able to - track his broken English and broken Spanish, tracked both of them so that he was - he knew that it was being transferred, his information and his story was being transferred.

CONAN: Jesus, thanks very much for the call. Appreciate it.

JESUS: OK. Bye-bye.

CONAN: Harvey Chochinov, that makes me think of the comment that we played at the very beginning of this program, where you talked about people who worry about their life vanishing if they don't leave something behind.

CHOCHINOV: Hmm. Well, exactly. And again, what I need to point out is that the idea from dignity therapy really came on the basis of what has been a very long course of research that our group has been conducting - for 20 years, nearly. And when examined the issue of dignity, amongst the many things that could influence sense of dignity was this idea of something we called generativity, the idea that, you know, perhaps there will be no ripple effect, there will be no lasting influence as a result of my having been here. And so it seemed the appropriate therapeutic maneuver, if you will, in response to that, is to create something that will outlast that person.

CONAN: Let's go next to - this is April, April calling us from Reno.

APRIL: Hi. I just wanted to comment. I'm a hospice nurse, and so I see a lot of (unintelligible) that was with this kind of therapy, and we deal with it on a daily basis. One of the best aspects for my patients that I see is that they're able to die with more peace. I had a patient once, this happened quite (unintelligible), were people are very uncomfortable. They can't have their symptoms managed as far as pain or some kind of discomfort or anxiety. And a lot of times, it's because they need to get something off their shoulders. They need to say I'm sorry. Or they need to just really get in touch with somebody they haven't been able to in a long time. And that usually allows patients to kind of let go peacefully without extra pain medications or whatnot. So that's a really big part of our process at hospice. So I just salute you. I think this is such a great, great program.

CONAN: Harvey Chochinov, is that true, in your experience?

CHOCHINOV: Well, very much so. The recent study that was referred to that came out recently in the Lancet Oncology, actually, was a randomized control trial of dignity therapy. It took place in the United States, Canada and Australia. And we compared a number of different study conditions, including dignity therapy, versus other forms of support. And at the end of the day, people who did dignity therapy not only were more likely to report that it enhanced sense of dignity, but also that it increased quality of life.

But something, I think, worth underscoring, and that is that it changed the way they felt that others - particularly family members - saw them or appreciated them. And again, you know, one of the things that happens towards dying is, you know, people experience a whole variety of losses and begin to feel that life has no meaning or purpose. And this is why feeling a sense of burden is so prevalent and so painful for people who are nearing the end of life. So if dignity therapy offers people a way of being able to give back, you know, do something that has value, then indeed that can change the way they perceive themselves to be seen and appreciated.

CONAN: April, thanks very much for the call.

APRIL: Thank you.

CONAN: We're talking about dignity therapy. You're listening to TALK OF THE NATION, from NPR News. And let me reintroduce our guests. You just heard Harvey Chochinov, director of the Manitoba Palliative Care Research Unit and professor of psychiatry at the University of Manitoba. Also with us is Alix Spiegel, NPR science reporter. And let's see if we can go next to - this is Trenton, and Treton, with us from Quincy, in Michigan.

TRENTON: Hello. Very excited to be calling - sad reason, though. My grandfather is passing away. I - he has cancer. The doctors think that the has, at most, three years. I don't know when to begin such therapy. And I don't really know where to go to have him receive it. Can I do it myself?

CONAN: Harvey Chochinov, can you give him any advice?

CHOCHINOV: Yup. Well, as Alix pointed out, I mean, dignity therapy is something that's kind of surfaced recently on the radar, perhaps, of medical practitioners and in palliative care. It is being conducted in various different centers around the world, but certainly not present everywhere. I would say the important thing is perhaps to talk to a mental health professional that might be affiliated with a program where you're loved one is being looked after. We certainly are trying to put lots of information about dignity therapy in the public domain. There's a website, dignityandcare.ca, where you can get lots of information. There's a book about to be published on dignity therapy next month by Oxford University press.

The question of when to do it, in part, is something that has to be sort of negotiated with, you know, the patient, you know, when the time feels right. And that's going to be, you know, a very personal, you know, when the moment feels like the appropriate moment.

Finally, is it something that a family member can do? And - at least, you know, in my experience - we have always offered dignity therapy using a professional health care providers. Something happens, you know, when you're a family member, losing someone you love, I mean, the added thing is the whole notion of love. And it's very difficult to maintain objectivity, to do a task like dignity therapy that may require objectivity of determining, you know, what is - you know, what remains in the document, what doesn't and so on.

On the other hand, though, I mean, family members can certainly engage in conversations with loved ones. I mean, dignity therapy is certainly not the only means of trying to, you know, achieve some of these wonderful outcomes, like making people feel like their words are valuable and that they are respected.

So I would say what a family member can do is to have important conversations, find out what's important to your loved one, find out what they, you know, what they would want others to know or to remember, or what things that they would want passed along. You know, it may not be the dignity therapy protocol that I have described, which is something that is very brief for patients who are very close to dying. But certainly there are many ways of trying to reinforce dignity, and I would suggest that you explore those with your loved one.

CONAN: And Trenton, just remembering Kate Frego's story earlier, take a tape recorder. Record these memories so you have a sound of your grandfather's voice. Make a videotape or video recording so you can remember what he looked like when he was talking. That might help, too.

TRENT: Yeah, I think that is great advice. Thank you so much, both of you.

CONAN: Thanks for the call. Dr. Chochinov, thank you, and, Alix Speigel, thanks to you. This is TALK OF THE NATION, from NPR News.

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