UF study to evaluate terminal illness care

Hearing that you have a life-threatening illness can be physically and emotionally challenging. And while great strides have been made in helping people with a terminal illness manage their physical symptoms toward the end of their lives, helping them cope with the accompanying emotional distress is another story.

“There is a real need for therapeutic interventions that improve the ability of people to cope with these end-of-life emotional and psychological issues,” said Dr. Carma Bylund, a behavioral scientist in the University of Florida College of Medicine’s department of health outcomes and biomedical informatics and a member of the UF Health Cancer Center. For the past 20 years, Bylund has studied health care communication among care providers, caregivers and patients in cancer care.

Bylund and Dr. Susan Bluck, a lifespan developmental psychologist and gerontologist in the UF College of Liberal Arts and Sciences’ department of psychology, are serving as co-principal investigators of a three-year, $1 million grant from the National Cancer Institute to analyze the effectiveness of one of the few therapeutic interventions available today: Dignity Therapy.

UF Health Dr. Carma Bylund
Dr. Carma Bylund

Dignity Therapy was developed in 2002 by Dr. Harvey Chochinov to help adults with cancer maintain or foster a sense of dignity in the final stage of their lives. The therapeutic intervention helps them complete important psychological tasks such as sharing life lessons and preparing a legacy document for loved ones. Chochinov, a distinguished professor of psychiatry at the University of Manitoba and senior scientist at the CancerCare Manitoba Research Institute, will serve as a consultant for this study.

During the Dignity Therapy intervention, a trained dignity therapy provider guides patients to recall and share their own unique, structured life story narrative. The session is transcribed and edited, and patients receive a final version that they can share with family members or friends.

“This guided recall of life experiences helps people make sense of the current life chapter, in which they are living with cancer or another serious illness. It helps them fit this chapter into their larger life story,” said Bluck, who directs the psychology department’s Life Story Lab. Bluck studies how people use personal autobiographical memories throughout their lives to help maintain their sense of self, develop social and emotional bonds with other people, and plan for the future. This includes reflecting on, and even growing from, end-of-life experiences. Bluck is also a member of the UF Health Cancer Center.

UF Health Dr. Susan Bluck
Dr. Susan Bluck

“At its core, Dignity Therapy relies on a guided review of one’s life,” Bluck said. “The gerontology literature has clearly documented the benefits of telling one’s life story, particularly in the second half of life.”

Although research on Dignity Therapy began soon after it was developed, not much is known about the mechanisms involved, or the best time to offer the intervention to people during the course of their illness.

To help answer these questions, Bylund and Bluck, with their investigative team, will use narrative data gathered from more than 200 older adults with cancer who received Dignity Therapy across six sites, including UF Health. For this study, the researchers will evaluate the mechanisms involved, such as the dignity therapy provider’s ability to listen empathetically and guide patients to provide rich life story narratives.

The researchers will also investigate how other factors, such as the timing of the intervention and the severity of the patient’s symptoms, may impact the therapy’s effectiveness.

UF Health Dr. Diana Wilkie
Dr. Diana Wilkie

“The research will contribute to the movement toward humanistic, patient-centered care. It focuses on the extent to which individuals are able to tell life stories with meaning, a sense of purpose in life, and a feeling of communion with others,” Bluck said. Sharing this type of rich life story is expected to help instill or maintain an individual’s sense of dignity.

“The richer and more fully developed the narrative is, and the more empathic the dignity therapist is when listening to the patient’s story, the more powerful and effective the therapy should be at instilling a sense of dignity,” Bluck said. Telling a skeletal, fractured, emotionally neutral story doesn’t have the same therapeutic effect.

Bluck added that the biographical facts of the patients’ stories are not what is key to positive outcomes from Dignity Therapy. Instead, the richness and authenticity of the life story is seen as the main ingredient.

Having effective tools available to help people diagnosed with a serious illness manage their emotions and end-of-life issues is especially important at a time when the number of older people who develop a serious cancer is rising, Bylund said. 

UF Health Dr. Yingwei Yao
Dr. Yingwei Yao

According to the National Cancer Institute, more than 600,000 Americans die a cancer-related death each year. Older people are disproportionately affected: Those over 70 have a 1 in 3 chance of developing a serious cancer. 

“Maintaining a sense of human dignity is central to the quality of life of these people at a time when they are facing a serious illness and are nearly at the end of their lives,” Bylund said.

Bylund said that while much of the research on Dignity Therapy has involved older people diagnosed with cancer, the therapeutic intervention can be used by anyone of any age who is dealing with a serious, potentially life-threatening illness.

The study is part of an overall movement in the health care industry toward adopting a more compassionate, patient-centered approach to care.

“Our research brings central humanistic themes of dignity, empathy, and the patient’s own narratives to the center of a national conversation on the importance of delivering care with compassion and considering the patient’s perspectives and personal preferences when making decisions about their care,” Bylund said.

UF Health Dr. Sheri Kittelson
Dr. Sheri Kittelson

When the study is completed, the research team plans to host a one-day Science of Care Summit to present the findings to national opinion leaders in psychiatric care, nursing, clinical psychology, sociology and palliative medicine. The researchers will present a set of rigorous, standardized scientific procedures for capturing humanistic themes such as dignity, empathy and narrative richness from written materials, interview transcripts or encounter data. They will also demonstrate and discuss how care providers can harness dignity, empathy and other humanistic concepts and incorporate them into evidence-based, patient-centered care practices designed to improve patients’ quality of life. 

Other members of the study team include Dr. Diana Wilkie, director of the UF Center for Palliative Care Research and Education. She is also a principal investigator of the parent grant, which explored the effects of Dignity Therapy on patient outcomes among people with cancer who received the intervention as part of their palliative care and those who did not.  Dr. Sheri Kittelson, division chief of the UF Health Palliative Care Program in the College of Medicine’s department of medicine, is co-investigator and site director on the parent grant. Dr. Yingwei Yao, in biostatistics will analyze the data.

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