Cancer Patients Who Write Their Stories Feel More Peaceful and Less Depressed

Fifteen years ago, University of Wisconsin-Madison researcher Meg Wise began interviewing cancer patients approaching the end of life about how they received their diagnoses and what they experienced afterward. She was quite surprised when many requested a copy of the interview, saying they had never discussed these matters even with family or friends.

Wise still remembered her surprise; “You have been living for eight months with stage 4 lung cancer, and this is the first time you are talking about it?!”

The palliative medicine journal The Journal of Palliative Medicine published Wise’s latest study on resilience in advanced cancer patients in February 2018. According to this study, putting one’s life and cancer story on paper, or even expressing it in a telephone conversation, makes people much more peaceful and calm.

Being diagnosed with advanced cancer often brings stress and chaos. The exhaustion of dealing with issues such as doctor appointments, pain management and finances leaves patients vulnerable to depression .

In addition to Wise’s studies, a scientist at the Sonderegger Research Center at the UW-Madison School of Pharmacy made a chance discovery while beginning research into helping people cope with cancer. “Some patients spoke about how cancer made their lives difficult, while others said their lives had improved after diagnosis, that they approached life differently in some ways, recognized the importance of family and learned not to worry about small things.” So where did the fine line distinguishing this attitude, which might be seen as a degree of resilience, begin?

From that point, Wise began interviewing advanced cancer patients to learn about their cancer journeys from helplessness to resilience. Her aim was to create an online self-help program using the information obtained. As mentioned above, participants requested written copies of their stories after the interviews because they had never before spoken so extensively about their illness experiences.

Wise said; “Over time, I realized that simply telling their stories could be a much better therapeutic tool than any computer-based self-help program.”

Wise then examined the work of Canadian psychiatrist Harvey Chochinov. With patients receiving end-of-life care, Chochinov involved 2-3 clinicians in detailed sharing of life stories, particularly for matters of legacy and preparing a will, in dignity therapies . In light of this work, Wise and colleagues developed a new technique called miLivingstory . They aimed to combine dignity therapy’s review of an entire life with patients’ stories of their cancer journeys.

To avoid losing time and labor and make reimbursement by the United States healthcare system easier, they chose to collect and record stories by telephone. They also designed online systems where patients could review, edit and share their stories. A very recent study supported by the National Cancer Institute published findings on this technique’s effectiveness in advanced cancer patients.

In this study, people with stage 3 and 4 cancer, more than 80 participants, were assigned to 2 groups. One received online help (support groups and literature from the National Cancer Institute and American Cancer Society), while the other entered the miLivingStory arm. Those in the miLivingStory arm received online resources and two scheduled telephone conversations with Wise. These covered important achievements, challenges overcome, cancer’s effects on their lives and their families, and how they wished to be remembered in 20-30 years.

Wise said; “Many people wanted to be remembered for how they treated others”. They shared adventures, very special personal memories and achievements. Researchers transcribed patients’ feelings, thoughts and memories in their own words, and patients shared these with family and friends. Wise said, “During the cancer journey, taking time to look back on your life—and doing so without feeling that you are burdening loved ones—became a very fulfilling, satisfying experience.”

A standard study assessing well-being in people with chronic illness showed that miLivingStory participants felt much more peaceful within 4 months after telling their stories, and much less depressed than those given online resources alone.

The miLivingStory group who told their stories not only felt more peaceful, but were also more protected against psychological distress and depression.

According to Wise, the benefits of a telephone conversation with a nonclinician and sharing stories online are promising for the future.

Wise said; “People often do not feel the need to stop, reflect on and talk about what they have experienced. But they should keep doing so during illness… One patient once told us, there is no other time to say what is in your heart.”

Dear patients, if you wish, you too can share your life story, illness story and feelings with us. Our email address is [email protected]

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