Canada resident Joan Rose, 59, of Winnipeg, Manitoba had been free of breast cancer for nearly five years when it returned with a vengeance. Now she has metastatic disease that has spread to her bones.
When Rose succumbs to her terminal cancer, she’s hoping that the legacy document she leaves her family will bring them comfort, just as creating it brought comfort to her.
In it, Rose speaks directly to her family members, including her two children and two grandchildren. “I spoke from my heart, so they know how much meaning they gave to my life,” she says. “As hard as it will be for them to hear, it just made me feel so good that I have been able to talk about my family and talk to them about my feelings.”
Rose made the document with the help of her social worker at the CancerCare Manitoba Foundation. To make the document, the social worker recorded interviews in which she asked Rose specific questions about her life and what’s most important to her. Then the social worker transcribed the tape and edited it for clarity. Rose’s legacy document is part of what’s known as dignity therapy.
Harvey Max Chochinov, MD, PhD, a psychiatry professor at the University of Manitoba and director of the Manitoba Palliative Care Research Unit at CancerCare Manitoba, developed dignity therapy about 15 years ago to help the terminally ill find meaning and purpose at the end of their lives and die knowing they’ve said what they wanted to those they love.
Though Dr. Chochinov has developed specific questions to guide the interviews, the contents of the document vary according to each person’s wishes. “Dignity therapy needs to be exactly what the patient wants or needs it to be,” he says.
Rose decided she wanted to compose a legacy document of her own after attending the funeral of a friend she met through her breast cancer support group and hearing portions of that woman’s document read.
“When it’s read out loud, it’s precisely you talking,” Rose says. “It’s your words, and that makes it a bit more wonderful.”
Creating Your Legacy Document
Anyone can make a legacy document, Chochinov says. But a trained facilitator with interviewing skills and psychological insight will know the questions to ask to keep you on track and solicit the information and stories that will be most helpful to everyone. The facilitator also can edit the manuscript with objectivity.
“The facilitators are trained to identify things that might induce harm if spread among family members,” Chochinov says. It can be a challenge, he adds, to accurately capture the essence of an individual.
In a study published in The Lancet Oncology in August 2011, Chochinov concluded that though dignity therapy may not help terminally ill patients with their emotional distress about dying, it could increase their sense of dignity and change how their families saw and appreciated them. In Canada, dignity therapy costs about $500 and is covered by health insurance. It is, Chochinov says, “an inexpensive and cost-effective therapy for people who are facing death.”
Family members also appreciate staying connected to their loved ones after they’re gone. They can take out the document and refer to it whenever they need comforting, Chochinov says.
The only people who may not benefit from dignity therapy are those who are cognitively impaired and can’t recall the important events in their lives or whose memories of events are too distorted to be real or helpful, Chochinov adds.
Dignity Therapy: An Addition to Palliative Care
Donald Schumacher, PsyD, president and CEO of the National Hospice and Palliative Care Organization, a nonprofit group based in Alexandria, Virginia, believes many people could benefit from dignity therapy in addition to palliative and hospice care. “It can give them more hopefulness that their lives meant more than they thought,” he says.
However, Dr. Schumacher adds that he doesn’t believe the experience needs to be very formal. Some people might respond very well to specific questions, and some might find them intrusive. “In hospice, we let some patients talk about their life and life history without having it be formalized, and for some that works very well,” he says.
Kathleen Cairns, PsyD, a psychologist who practices in West Hartford, Connecticut, and Beverly Hills, California, believes in the idea of giving dying people a chance to reflect thoughtfully on who they were and who they still are. Dignity therapy adds an emotional side to end-of-life care that can be very valuable. “I can’t imagine who it wouldn’t work for,” she says.