This study looks at what role families play in end-of-life decision making and evaluates a brief clinic discussion and handout as a means of support for terminally ill patients and their loved ones.
The research focuses on how patients would choose to have their families involved in the process rather than on specific treatments patients would choose.
Meet the Investigators
The study is a randomized clinical trial testing the TAILORED Intervention. One hundred twenty eight patient-family dyads will be recruited from specialty clinics at Johns Hopkins Hospital and St. Vincent's Hospital. Two diagnostic groups will be included in the dyads: a group expected to retain decision-making capacity (amyotrophic lateral sclerosis) and a group expected to lose decision-making capacity (Advanced Gastro-intestinal cancer).
The intervention will be delivered at baseline with the completion of surveys, bolstered at 4 weeks with a phone call, and assessed through surveys at 8 weeks. The Family Decision Making Self Efficacy Scale will be used to measure family members confidence in making decisions for a terminally ill loved one. In addition, a small subset of 12 family members will be interviewed with qualitative measures. Data will be analyzed to explore the patient and family member's experience with and satisfaction with the TAILORED Intervention and its impact on patient and family distress and decision making near death.
The TAILORED study team: (from left) Mark T. Hughes, Peter B. Terry, Daniel P. Sulmasy, Julie Johnson, Joan Kub, Marie T. Nolan, Christine St. Ours, and Carrie Tudor. Not pictured: Alan Astrow, Lisa Lehman, Gayane Yenokyan, Linda Rose, Lora Clawson, and JoAnn Coleman.