Dignity Therapy helps patients preserve their legacy

What are your hopes and dreams for your loved ones?

Do you have any regrets?

For any of us, these are the types of questions that are deep, thought-provoking and sometimes difficult to answer. For someone with a terminal disease, they take on an extra layer of emotional weight and complexity.

For the past several years, staff in the Palliative Care Clinic at UW Health have asked about such topics as part of Dignity Therapy, an interview process that gives patients the chance to reflect on their family, friends, careers and any other unique aspects of their life story.

Patients who choose to participate are given a list of questions to think about ahead of the interview. The topics can include talking about a patient’s childhood, family, friends, career, military service and the patient’s illness. The questions are meant to be open-ended so that the patients’ answers guide discussion.

“This is about life review. This is about who you are as a person, and what makes you you,” said Jean Ligocki, a social worker in the clinic who is involved with interviews. “It is such an honor and such a time where I feel like such a citizen of the world that someone is truly sharing their world with us, frequently at a time where they’re looking near the end of their life.”

The interviews take about 45 minutes to 1 hour and are digitally recorded. Facilitators make sure to prepare a comfortable, private space to set the tone. Because the discussion can evoke strong emotions, patients have time at the end to decompress and reflect.

“Often those stories and emotions can be intense,” said Kirsten Worzala Dumke, MDiv, chaplain for the clinic.

Once the interview is transcribed, that draft is shared with patients to review and edit as needed. A final print, plus a digital copy of the story and interview recording, are given to the patients to use as they wish. Often, they share these with loved ones as a treasured memento.

Worzala Dumke and Ligocki feel privileged to be involved in such a personal, emotional experience for patients.

“What an intimate, secret space to be in with our patients,” Worzala Dumke said. “Oftentimes I’ll use the visual of a bowl, like I’m here to hold those stories with the patient. They are not mine to keep, these are not my stories to take on, but I can be present with the patient in those stories.”

Ligocki recalled one patient who opened up about traumatic experiences in her past and told Ligocki afterward how grateful she felt to share her story. She kept a copy of that woman’s reaction as a memento: “The Dignity Therapy process gives voice to those who sometimes don’t have one. Sometimes our voices are muted in the course of our disease. I’m very humbled, and to hear and read my story of my life is empowering.”

Dignity Therapy is one of many programs offered by the Palliative Care Clinic to support the physical, emotional and spiritual needs of patients and their families. Staff work closely with patients to determine which services they feel are most relevant and helpful.

“Our role is to come alongside patients as they’re receiving care from other specialists and offer an extra layer of support,” said Worzala Dumke. “We’re definitely not a one-size-fits-all clinic. We like to, as we get to know the patient, figure out what would be the best to help this patient, what are they struggling with, what’s important to them, and how do we serve them best.”