In the often-painful time after patients receive a fatal diagnosis, an opportunity can also arise. Something about the experience—its finality, its intensity, even its trauma—creates a kind of existential readiness, a moment of introspection and openness to other possibilities. In that moment, some dying patients cope better than others, and a few are even able to grow.
When people are first diagnosed with a terminal disease, they typically feel an overwhelming sense of fear and anxiety, says Gary Rodin, a psychiatrist who specializes in palliative care. But after the realization has had time to settle, a space opens up. Then, even people who have not been especially thoughtful before tend to become reflective.
“There are times in our lives, whether we’re imminently dying, or particularly ill, or we’re faced with the possibility of a life-threatening condition, when reflection and looking back become important,”says Harvey Chochinov, a psychiatrist who pioneered the use of dignity therapy for dying patients.
In that period of reflection and openness, some people cope especially well. Some are able to heal old relationships or find a deeper appreciation of their remaining weeks or days. And an exceptional few develop in remarkable ways, according to anecdotal reports from hospice staff and others who work with the dying. These patients are described as extraordinarily peaceful, or even joyful. Visitors are drawn to linger in their hospital rooms. Caregivers find they are themselves changed for the better.
Both Chochinov and Rodin wondered how these patients were able to find tranquility in the midst of their suffering—and how doctors might help more dying people gain a greater sense of acceptance and peace. The psychiatrists, who are part of a recent trend in research into interventions for patients with advanced diseases, have each found evidence that skillful intervention can make a big impact, although their methods are different.
At the University of Manitoba, Chochinov and his colleagues quickly homed in on loss of dignity, an issue that came up again and again for their patients. The researchers conducted a series of studies on what dignity meant to dying people. As expected, one element was a sense of personhood, patients’ core idea of who they were as individuals. But another major component also emerged from their studies: the importance of continuing to create something to leave behind.
Patients felt an urgent need to answer questions about their legacy, Chochinov says: “What will my life have stood for?What is the meaning of my existence? Will there be ripple effects after I’m gone? Will my life, and the meaning of my life, continue to resonate in the minds of the people that I leave behind?”
Chochinov and his team created and tested an intervention they called dignity therapy. In the intervention, patients work with a therapist in a series of three or more sessions to record a conversation about their lives. In the first session, the therapist introduces the therapy and goes over the questions with the patient. In the second, the therapist guides the patient through a conversation that focuses on what the patient thinks is most important to say, and what their relatives or friends most need to know. This is recorded and edited, and in the third session, the therapist reads the transcript to the patient to make sure there are no errors and that nothing important has been left out. Occasionally, patients ask to add something and another session is set up, but Chochinov says the therapy was meant to be brief because patients have limited time left. A final transcript of the recording is then given to relatives or friends, and the transcript itself becomes the legacy patients leave behind.
The researchers have found patient satisfaction very high after the therapy, although Chochinov says it’s sometimes difficult to pinpoint why, exactly. Many of the patients in his studies don’t start out with a high level of psychosocial stress, anxiety or depression. Still, dignity therapy provides them with something they value, a space for reflection and a way to communicate what’s most important to them to the people they’re leaving behind.
Like Chochinov, Rodin and his colleagues at the University of Toronto found that guiding dying people through reflections was a crucial element in helping them to cope. Their therapy intervention, Managing Cancer and Living Meaningfully (CALM), involves six guided therapy sessions with patients. In the sessions, patients explore four areas: dealing with the physical effects of their condition and the medical system itself; talking about a patient’s sense of self and relationships with others; discussing what has been meaningful in their lives; and, finally, mortality—discussing patients’ fears about suffering or what might happen as they died, and facing the end of life,
The therapy helps patients and their families deal better with the hardships of a terminal condition: A family member is encouraged to attend at least one therapy session, and patients have a chance to think about and communicate what’s most important to them. Patients have reported that they feel someone is really listening to them, that they have a chance to think through medical decisions, to connect better with family members.
While their studies show the therapies are making a big difference for patients, neither Chochinov nor Rodin promises to eliminate the suffering that often accompanies dying. Most dying patients have to wrestle with physical discomfort and pain, grief and other emotional distress at some point. Atthe same time, Chochinov says, “the notion of death has a way of focusing our minds on what matters, what’s important, who are the important people in our lives, what are the important things that need to be said.”