Martha A Abshire1, Marie T Nolan1, Sydney M Dy2, Joseph J Gallo1,3. 1. Johns Hopkins University School of Nursing, Baltimore, Maryland, United States of America. 2. Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States of America. 3. Department of Mental Health, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States of America.
Abstract
BACKGROUND: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. OBJECTIVES: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. DESIGN: Cross-sectional qualitative design. PARTICIPANTS: We conducted interviews with family members of deceased physicians. APPROACH: We analyzed the data using the constant comparison method to identify themes. KEY RESULTS: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system. CONCLUSIONS: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.
BACKGROUND: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. OBJECTIVES: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. DESIGN: Cross-sectional qualitative design. PARTICIPANTS: We conducted interviews with family members of deceased physicians. APPROACH: We analyzed the data using the constant comparison method to identify themes. KEY RESULTS: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system. CONCLUSIONS: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.