Most people want to be remembered long after they leave this earth, and particularly on their own terms. It’s this essential concept that inspired Harvey Max Chochinov, MD, PhD, a professor of psychiatry at the University of Manitoba, to develop the novel end-of-life treatment he calls dignity therapy.
Dr. Chochinov—who is also director of the Manitoba Palliative Care Research Unit at CancerCare Manitoba and author of the book Dignity Therapy: Final Words for Final Days—initially began researching palliative care in 1990 with a focus on end-of-life depression. He was also particularly interested in the ways in which his parents wished to be perceived as they approached the end of life. His research and work with patients over the years led him to create dignity therapy in 2002.
How does dignity therapy work?
In the practice of dignity therapy, an end-of-life patient—typically one living with a terminal illness or life-threatening disease—makes appointments to meet with a therapist once a week for anywhere between 6 to 8 weeks. During each session, which last 30 to 60 minutes each, the therapist will ask the patient a series of open-ended questions about their memories and meaningful aspects of their lives. The therapist records and transcribes the interview and then fleshes out and edits the text, which comes to be known as a “generativity document.” The patient will then have a chance to review and edit the document before it is ultimately passed along to loved ones, family members or healthcare providers—anyone who the patient believes will benefit from reading it. The goal is to help preserve one’s legacy in one’s own words and to guide one’s surviving family members.
What goes into a generativity document?
Some of the questions a therapist might ask a patient include:
- At what point in your life did you feel most alive?
- What are some accomplishments you’re most proud of?
- What advice would you like to pass along to your family?
- What would you like to say to your grandchildren if you had the chance to meet them?
“What we have learned in palliative care is that time is usually not on our side,” Chochinov says. “Yet even in a short period of time, a patient who is close to death is able to express and share things with loved ones that are terribly important, and often terribly poignant.”
The beauty of the generativity document is that it can be tailored to each patient to reflect the specifics of their journey. “The agenda of dignity therapy is really something that needs to be driven by the needs of the individual who's doing it,” says Chochinov.
Who can perform dignity therapy?
Dignity therapists come from a range of backgrounds. Practitioners may include psychologists, psychiatrists, social workers and spiritual care providers (who address patients’ need for faith during the end-of-life experience). “We want to make sure that we have people who are skilled in guiding patients along the pathway in a way that is not emotionally harmful to people who will be the recipients of the generativity document,” says Chochinov. For this reason, no matter the person’s title, Chochinov believes it’s important for the professional to have a background in healthcare. In addition, it’s important for the therapist to possess key qualities including empathy, compassion and trustworthiness. After all, a patient will be disclosing their most personal feelings and life stories to this practitioner.
Chochinov holds an annual workshop in Manitoba, Canada to train therapists to have conversations with patients and to elicit meaningful insights from them. “Patients who have life-threatening or life-limiting conditions don't always have the energy or the wherewithal to put together the generativity document on their own,” he explains.
Does it work?
In a July 2011 study in Lancet Oncology, a group of 326 patients receiving hospice care were assigned to one of three groups: dignity therapy, client-centered care (which tends to focus on helping patients discuss their “here and now” concerns and issues) or standard palliative care. The patients who used dignity therapy believed it enhanced their end-of-life experience. Additionally, when compared to standard palliative care, dignity therapy was able to significantly lower levels of depression. Chochinov also notes that in some randomized control trials, dignity therapy was able to effectively lessen depression, anxiety or demoralization. “In patients who have a lower baseline of distress, it usually is able to optimize quality of life,” adds Chochinov.
In a June 2017 literature review in Palliative Medicine, researchers examined the results of 28 studies on the effectiveness of dignity therapy in improving quality of life. One of the studies showed that dignity therapy proved most effective for people with high levels of stress and anxiety. Another showed its effectiveness in decreasing depression scores over an extended length of time. And in general, family members valued it as a positive and beneficial therapy for their loved ones.
Is it right for everyone?
It’s important to recognize that even in the best circumstances, dignity therapy may not be for everyone. “If there are families who are highly fractious, where there's a lot of antipathy, where there's a lot of chaos, dignity therapy isn't necessarily a short-term intervention that can address all of those complex issues,” says Chochinov. For situations like these, Chochinov suggests more involved therapies like family therapy. “There are different ways that people can achieve the peace and the comfort they're looking for as they're approaching end of life,” says Chochinov. Dignity therapy may also not be right for patients who are cognitively impaired or too ill to respond properly.
While one patient might like the idea of dignity therapy to help preserve their legacy, someone else might prefer leaving behind a different type of memento. One patient of Chochinov’s, for example, carved wooden statues for family menbers. Other end-of-life patients may find outlet in other modes of therapy, including music therapy, meaning-centered therapy (which focuses on patients’ desire to find meaning in life), supportive therapy (which helps patients cope with life stressors) or narrative therapy (changing the way you identify yourself). The method patients ultimately choose, if any at all, depends on who they are and how they wish to be remembered.
What does it mean to have a good death?
According to Chochinov, good palliative care should depend not only on good physical care, but should also include spiritual and emotional care. “Most people want to die in comfort, in a place of their choosing, surrounded by the people they care about and love,” says Chochinov. Dignity therapy can help ensure that those emotional and spiritual dimensions of the end-of-life experience are contemplated and memorialized for one’s loved ones.
