Lessons from bereaved families: Insights about how the care of patients impacts bereavement.

Abstract

87 Background: Feedback from bereaved families, including surveys of family members’ experiences during the patient’s illness and final days, can provide important insights into ways to improve the care of patients with advanced illness and their families. Methods: A convenience sample of 140 bereaved family members from Dana-Farber Cancer Institute (DFCI) completed a survey developed by the authors about their bereavement experiences. Families were asked to describe ways in which the clinical team was helpful in dealing with their loss; what they wished the clinical team had done prior to the death that would have helped in dealing with their loss; and actions taken by the team that were unhelpful or difficult for them in dealing with their loss. The Institutional Review Board at DFCI approved the study. Results: 67% of participants were female and 81% had lost a spouse or partner. The most common responses about ways in which the team was helpful in dealing with their loss included: showing compassion, sending condolence letters or making calls, and offering honest facts and information. Prior to the death of the patient, the most common response about what they wish the team had done was providing more realistic information about prognosis. When asked about actions that were unhelpful or difficult, only 24 responses were given with 50% of participants omitting this question and the remaining stating that there was nothing that the team did that was unhelpful. Of the 24 responses, the most common concerned a lack of contact or contact that was impersonal after the death. Conclusions: This survey demonstrated that families could provide input about ways clinicians can have a positive impact on the bereavement experience of families in caring for the patient before death. Compassion, accurate information, especially about prognosis, and contact with the clinician during early bereavement were highly valued by respondents. The most common unhelpful behavior identified was lack of personal contact following the death of the patient. Improved communication by the clinician, both before and after the patient’s death, has potential to improve the bereavement experience of family members.