End-of-life care seems to finally be getting the recognition it deserves, as increased attention is given to the needs and rights of people with terminal illness. Change is glacially slow, but it is coming. Hospice care — the practice of helping people with terminal illness who want to focus on quality of life rather than curative measures — only became a trend as recently as the mid-’70s. Medically-assisted deaths are also becoming more accepted in certain states, thanks to tireless efforts of advocates like Diane Rehm, the longtime NPR host. And, in the last ten years or so, people looking to improve the mental and spiritual health of people who are dying have been successfully advocating for what they call Dignity Therapy.
What Is Dignity Therapy?
In the 1990s, psychiatrist Harvey 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, and 7.5 percent identified that loss as a significant concern. These patients were then found to be more likely to report pain, desire for death, anxiety, and depression. In subsequent interviews, Chochinov found that “patients who felt a lost sense of dignity often perceived that others didn’t see them as somebody who had a continued sense of worth.”
Dignity therapy arose from the desire to enhance this sense of worth. Defined as “a unique, individualized, brief psychotherapy, developed for patients (and their families) living with life threatening or life limiting illness.” Essentially, it invites patients to discuss issues that matter most to them, or what they would most want to be remembered about them. Sessions are typically conducted by a clinician or social worker, then transcribed and edited, with a final version called a “generativity document” returned that can be given to a family or friend.
The concept behind dignity therapy is simple: the process of dying is undignified. Often, the end of one’s life is accompanied by a host of mental and physical infirmities that require assistance, which can induce feelings of shame, embarrassment and of being a burden. People with terminal illness quite often experience depression, hopelessness, and regret as well. Some studies have shown these feelings to be of greater concern to patients than pain and physical symptoms, and can lead to heightened requests for a hastened death.
Because of these findings, proponents argue that palliative interventions in end-of-life care need to go beyond the realm of pain and symptom management. To be more responsive to patients’ psychological needs, dignity therapy aims to help people remember that their lives had purpose, and still have purpose, and thus reduce the amount of psychological anguish.
Dignity Therapy Question Protocol
Although Dignity Therapy is more complex than just reading off questions and transcribing the answers, Chochinov and his associates developed nine questions that form the body of the generative document:
- Tell me a little bit about your life history; particularly the parts that you either remember most or think are the most important? When did you feel most alive?
- Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?
- What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc.)? Why were they so important to you and what do you think you accomplished in these roles?
- What are your most important accomplishments and what do you feel most proud of?
- Are there particular things that you feel still need to be said to your loved ones or things that you would want to take the time to say once again?
- What are your hopes and dreams for your loved ones?
- What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your son, daughter, husband, wife, parents, other(s)?
- Are there words or perhaps even instructions that you would like to offer your family to help them prepare for the future?
- In creating this permanent record, are there other things that you would like to include?
Is Dignity Therapy Effective?
Although dignity therapy is a relatively new concept, some studies have shown that it is highly effective in reducing anxiety and depression, and has an overall positive impact on patients experiencing end-of-life distress. In one study of 100 terminally ill patients who received dignity therapy, 91% reported feeling satisfied or highly satisfied, and in another, 93% gave high ratings of satisfaction. In the first systematic literature review conducted by Diana Wilkie in 2015, the most surprising result was the “overwhelming acceptability [of the practice], rare for any medical intervention.”
The problem: although dignity therapy as a 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. The most common barrier is time: clinicians need time to conduct the interviews, and then time to transcribe and edit the documents. Health care specialists are already overwhelmed and overworked, which makes it nearly impossible to conduct these efforts realistically.
How to Get Dignity Therapy
If you or a loved one are going through the end-of-life process, odds are you have been connected to a hospice team of some sort. We recommend reaching out to a nurse, clinician, social worker, or clergy member to see if they are familiar with the practice. If they cannot offer it themselves, they can probably refer you to someone else who can offer this essential tool.