Your Health
10:01 pm
Sun September 11, 2011

For The Dying, A Chance To Rewrite Life

Originally published on Mon September 12, 2011 11:47 am

For several decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that can help people cope with the reality of their death. One of these therapies asks the dying to tell the story of their life.

This end-of-life treatment, called dignity therapy, was created by a man named Harvey Chochinov. When Chochinov was a young psychiatrist working with the dying, he had a powerful experience with one of the patients he was trying to counsel — a man with an inoperable brain tumor.

"One of the last times that I went into his room to meet with him, on his bedside table was a photograph of him when he had indeed been young and healthy and a bodybuilder, and it was this incredible juxtaposition of these two images," says Chochinov.

So in the bed there's his patient — this skeleton of a man — very pale and weak. On the bedside table, there's this portrait of a glistening, muscled giant. And Chochinov says that sitting there, it was very clear to him that by placing this photograph in such a prominent position, the man was sending a message: This was how he needed to be seen.

As Chochinov continued his work with the dying, he confronted this again and again — this need people have to assert themselves in the face of death. And he started to wonder about it.

"Why is it that how people perceive themselves to be seen should have such a profound influence? How does that make sense? What does that mean?" Chochinov says.

So he tried to answer those questions. As a psychiatrist at the University of Manitoba in Canada, he did study after study trying to tease out exactly what troubled people most about dying. What he found was that what people found most assaulting and annihilating was this idea that who they were would completely cease to exist after their death. And so Chochinov decided to do something about it.

"If the idea of having something that will outlast even you matters for patients that are near the end of life, then we need to do something that will create something that will last beyond ... the patient," he says.

A Patient's Narrative

The something that Chochinov decided to create was a formal written narrative of the patient's life — a document that could be passed on to whomever they chose. The patients would be asked a series of questions about their life history, and the parts they remember most or think are most important. Their answers would be transcribed and presented to them for editing until, after going back and forth with the therapist, a polished document resulted that could be passed on to the people that they loved.

Chochinov named this process dignity therapy, and for the past 10 years he has used it with the dying. And one of the things that has struck him about the process is this: The stories we tell about ourselves at the end of our lives are often very different than the stories that we tell about ourselves at other points.

"When you are standing at death's door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth," Chochinov says.

Some people at that point choose to reinterpret lives, while other choose to frame their life as a warning. For example, Chochinov says he was doing the therapy with an alcoholic who had lived a very troubled life. Chochinov wants his therapy to help people come to peace with their lives, and he was trying to get the man to remember some good times. But the man was having none of it.

"I remember him saying, 'I don't want to talk about Christmas — I don't remember many very happy Christmases, and that's not why I'm doing this,' " says Chochinov.

Chochinov says people who are troubled sometimes use the narratives to formally ask their families for forgiveness. But this guy wasn't even doing that.

"He was way past being forgiven," says Chochinov. "He simply wanted his grandchildren to know who their grandfather was so they could choose a better way."

Rewriting A Life

But do these stories have to be true in order to be therapeutic? To find out more, I got in touch with Kate Frego, whose mother, Aida Essenburg, passed away on July 1. Before she died, she sat down with a dignity therapist to record the history of her life. It became a 50-page document.

In one section, she writes: "It was on the other side of the river, on the Fort Gary side, that's where I met my husband. We'd go there and sit around or go paddling ... now we'd say we 'hung out.' He was a very nice person. I don't think he ever swore in his whole life."

Frego says that after her mother's death, she and her sister rushed to the hospital to retrieve this document — they were just so curious. Sitting on the floor in her mother's empty living room, Frego says she started to read.

"Mom had spoken about this document we would see after her death several times, in slightly mysterious terms," says Frego. "And she always kind of laughed about that, as it if were a bit of a joke she was playing on us."

But one of the first things Frego realized was that there would be no earth-shattering headlines or dark revelations. Instead, she found the opposite: Often in the story, Frego says her mother "just dramatically underplays something that I know was actually much larger and much more meaningful or painful or upsetting to her."

Consider, for example, her mother's recounting of a visit she made to her sister who lived in a different town. She wrote: "She was quite well, we had a lot of fun and a wonderful visit."

But it happens that Frego was on that visit, so she knows that it was not really wonderful. Her mother's sister was very sick and so disoriented that Frego and her mother spent most of their time essentially trying to put out fires.

She says they found out "some really unfortunate things about family members that were taking advantage of my aunt. We had to correct those things, and we had to deal with her and her bank accounts, and get her to eat again."

Was Frego's mother's version a deliberate distortion of the truth, brought on because she was facing death? A whitewashing or attempt to bend the narrative of her life in a more positive direction? Frego doesn't think so. She believes that the fact that her mother was so close to death just changed her interpretation of things.

"It wasn't an intentional blurring; it really was her giving us her take on things and where she was at the time," says Frego. "She was telling us that she chose to remember the happy parts of it. And truth is the way we perceive what's happening to us, how we interpret it."

An Urgency To Change

So it wasn't a lie — it was a genuine re-evaluation, which apparently is pretty common.

"When you face death, it's like facing a wall, and it forces you to turn around and look at the life that you've lived," says William Breitbart, a psychiatrist at Sloan-Kettering Cancer Center in New York. He's been trying to develop new psychotherapies for the dying. He says that many people have the wrong idea about the dying process.

"The prevailing mythology is that you die the way you live, and you can't change yourself in any way," says Breitbart. "The fact is that the last few months of life — because of the awareness of death — create an urgency that facilitates growth and change."

This, he says, is why something like dignity therapy can be good. Though there's no evidence that it relieves depression or anxiety, he thinks it can help us change in the very last moment of our lives. After all, he says, we've all lived imperfect lives.

"All of us fail, and the process, the task of dying, is to relieve ourselves of this guilt, whether it's forgiving yourself or asking others to forgive you," says Breitbart. "Or to remember your life slightly differently. But that's the task of dying."

As for Frego, she says she's developed a strange relationship to the document her mother put together. Since her mother's death, Frego says she's actually carried the document around with her. She has the story of her mother's life, always at her side, knocking around in the bottom of her bag.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

DAVID GREENE, host:

It's MORNING EDITION from NPR News. I'm David Greene.

STEVE INSKEEP, host:

And I'm Steve Inskeep.

Writers, politicians and psychiatrists all know the power of a narrative. All of us in different ways struggle to make sense of the world by pulling facts into stories. And the story you tell or accept can affect your peace of mind.

For decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that help people cope with the reality of death. And today in Your Health we're going to look at one - a therapy that asks the dying to tell the story of their life. NPR's Alix Spiegel has our report.

ALIX SPIEGEL: This end of life treatment is called dignity therapy and was created by a man named Harvey Chochenoff. When Chochenoff was a young man, a young psychiatrist working with the dying, he had a really powerful experience with one of the patients he was trying to counsel, a man with an inoperable brain tumor.

Dr. HARVEY CHOCHENOFF (Psychiatrist): One of the last times that I went into his room to meet with him, on his bedside table was a photograph of him when he had indeed been young and healthy and a body builder. And it was this incredible juxtaposition of these two images.

SPIEGEL: So in the bed there's his patient, this skeleton of a man, very pale and weak. And on the bedside table there's this image, this portrait of a glistening muscled giant. And Chochenoff says sitting there, it was very clear to him that by placing this photograph in such a prominent position, the man was sending a message.

Dr. CHOCHENOFF: This is how I need to be seen.

SPIEGEL: This is how I need to be seen.

SPIEGEL: As Chochenoff continued his work with the dying, he confronted this again and again, this need people have to assert themselves in the face of death. And he started to wonder about it.

Dr. CHOCHENOFF: I mean, why is it that how people perceive themselves to be seen should have such a profound influence? How does that make sense? What does it mean?

SPIEGEL: So Chochenoff tried to answer that question. As a psychiatrist at the University of Manitoba in Canada, he did study after study trying to tease out exactly what troubled people most about dying. And what he found was that the thing that people found most assaulting and annihilating was this idea that who they were would completely cease to exist after their death. And so Chochenoff decided to do something about it.

Dr. CHOCHENOFF: If the idea of having something that will outlast even you matters for patients who are near the end of life, then we need to do something that will create something that will last beyond you, the patient.

SPIEGEL: The something that Chochenoff decided to create was a formal written narrative of the patient's life - a document that could be passed on to whoever they chose. The patients would be asked a series of questions.

Dr. CHOCHENOFF: Tell me a little bit about your life history, particularly the parts that you either remember most or think are the most important.

SPIEGEL: All kind of questions.

Dr. CHOCHENOFF: When did you feel most alive?

SPIEGEL: And their answers to these questions would be transcribed and then presented to them for editing until, after going back and forth and back and forth with the therapist, there is this polished document that could be passed on to the people that they loved.

Chochenoff named this process dignity therapy, and for the last 10 years he's used it with the dying. And one of the things that has struck him about this processes of doing it is that the stories we tell ourselves at the end of our lives are often very different than the stories that we tell about ourselves at other points.

Dr. CHOCHENOFF: When you're standing at death's door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence, you know, the words that'll come out of your mouth.

SPIEGEL: Some faced with death choose to reinterpret their lives, others to frame their life as a warning.

So, for example, Chochenoff tells me he was doing the therapy with one man, this alcoholic who had lived a very, very troubled life. And since Chochenoff wants his therapy to help people come to peace with their lives, he was trying to get the man to remember some good times. But the man was having none of it.

Dr. CHOCHENOFF: I remember him saying, you know, I don't want to talk about Christmas. I don't remember very many happy Christmases, and that's not why I'm doing this.

SPIEGEL: Chochenoff says people who are troubled sometimes use the narratives to formally ask their friends and family for forgiveness. But this guy wasn't even doing that.

Dr. CHOCHENOFF: He was way past being forgiven. He simply wanted his grandchildren to know who his grandfather was so that they could choose a better way.

SPIEGEL: So here's one question that I had about dignity therapy. Do these stories have to be true in order to be therapeutic?

To find out more, I got in touch with Kate Frego, a woman whose mother had recently passed away. Aida Esenberg died on July 1 of this year. And before she died, she sat down with a dignity therapist to give the history of her life. Frego reads...

Ms. KATE FREGO: It was on the other side of the river, on the Fort Gary side, that's where I met my husband. We'd go there and sit around or go paddling. Now we'd say we hung out. He was a very nice person. I don't think he ever swore in his whole life.

SPIEGEL: This is part of a 50-page document produced by Aida's therapy. Frego says that after her mother's death, she and her sister rushed to a hospital to retrieve this document. They were just incredibly curious. And sitting on the floor in her mother's empty living room, Frego says she started to read.

Ms. FREGO: Mum had spoken of it several times in slightly, you know, mysterious terms, about this document that we would see after her death. And she always kind of laughed about that, as it if was a bit of a joke she was playing on us.

SPIEGEL: But one of the first things she realized was that there were not going to be any Earth-shattering headlines or dark revelations. Instead, she found the opposite, that often in the story her mother...

Ms. FREGO: Just dramatically underplays something that I know was actually much larger and much more meaningful or painful or upsetting to her.

SPIEGEL: Consider, for example, her mother's recounting of a visit she made to her sister who lived in a different town. It reads like this...

Ms. FREGO: She was quite well. We had a lot of fun and a wonderful visit.

SPIEGEL: But it happens that Frego was on this visit, so she knows that this visit was not really wonderful. Her mother's sister was really sick and so disoriented that Frego and her mother spent most of their time essentially trying to put out fires.

Ms. FREGO: Including finding out some really unfortunate things about family members who were taking advantage of my aunt. We had to correct those things and we had to deal with her and her bank accounts, and get her to eat again and various things like that.

SPIEGEL: So is this story a deliberate distortion of the truth, brought on because Frego's mother was facing death and felt the need to kind of bend the narrative of her life in a more positive direction? Frego says she doesn't think so. She believes that the fact that her mother was so close to death just actually changed her interpretation of things.

Ms. FREGO: It wasn't an intentional blurring. It really was giving us her take on things and where she was at the time. She was telling us she chose to remember the happy parts of it. And truth is the way we perceive what's happening to us, how we interpret it.

SPIEGEL: So it wasn't a lie - it was a genuine reevaluation, which apparently is pretty common.

Dr. WILLIAM BREITBART (Psychiatrist, Sloan-Kettering Cancer Center): When you face death, it's like facing a wall and it forces you to turn around and look at the life that you've lived.

SPIEGEL: This is William Breitbart. Breitbart's a psychiatrist at Sloan-Kettering Cancer Center in New York, someone who's been trying to develop new psychotherapies for the dying, and he says that many people have the wrong idea about the whole dying process.

Dr. BREITBART: The prevailing mythology is that you die the way you live and you can't change yourself in any way. But the fact is that the period, the last few months of life - because of the awareness of death - creates an urgency that facilitates growth and change.

SPIEGEL: This, he says, is why something like dignity therapy can be good. Though there's no evidence that it relieves depression or anxiety, he thinks it can help us change in the very last moment of our lives. After all, he says, we all live imperfect lives.

Dr. BREITBART: All of us fail, and the process of dying, the task of dying, is to relieve ourselves of this guilt, whether it's through forgiving yourself or asking others to forgive you, or to remember your life slightly differently. But that's the task of dying.

SPIEGEL: As for Kate Frego, the daughter of the woman who recently passed away, when I spoke with her, she told me that she'd developed a strange relationship to the document her mother put together. Frego says that since her mother's death, she's actually carried the document around with her. She has it constantly, the story of her mother's life, always at her side, knocking around in the bottom of her bag.

Alix Spiegel, NPR News, Washington.

INSKEEP: And that's Your Health for this Monday morning. Transcript provided by NPR, Copyright NPR.