By Lola Butcher
In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?
In the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.
“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.
Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.
These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life. A key need of people who know they are dying is tending to relationships with people who matter to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.
And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America. People “want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”
Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries such as Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.
To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.
Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.
“Dignity is about being deserving of honor, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”
Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through nine questions that help a person express how their life has been worthwhile.
“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”
The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts the patient wants to share. A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’ ”
Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far on dignity therapy, and more studies are ongoing. The largest yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and her colleagues.
Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced the desire for death was lacking.
“The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”
The most definitive study — Chochinov’s original clinical trial, of 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, Miguel Julião, a Lisbon physician, and his colleagues conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.
Julião thinks the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not.
Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.
“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”
In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, they created a posthumous therapy for surviving friends and family members. In a study of this survivor interview protocol, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’ ” Julião says.
For all its appeal, few patients receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialize in caring for seriously ill patients, it is not routinely available in the United States, Doka says.
A primary barrier is time. The therapy is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read
Julião says he transcribes each patient’s interview himself and edits it into the legacy document. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”
Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organization that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.
A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.
A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”
“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”
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