“If You Don't Know, All of a Sudden, They're Gone”: Caregiver Perspectives About Prognostic Communication for Disabled Elderly Adults

Objectives To describe preferences and experiences of caregivers of disabled older adults regarding being included in patient-clinician discussions about life expectancy. Design Qualitative interview study. Setting Caregivers were recruited from a Program of All-Inclusive Care for the Elderly (PACE), caregiver support groups and an advertisement on a nationwide caregiver advocacy group website. Participants Active and bereaved caregivers whose primary language was either English or Cantonese who had provided care within the last 5 years to a disabled adult aged 65 and older (N = 42, 79% female, 60% white, average age 54). Measurements Semistructured telephone interviews were conducted with caregivers who were asked about experiences and preferences related to clinician communication about life expectancy, including preferences for and attitudes toward being included in discussions about life expectancy, how such information should be delivered, and how clinicians should address concerns about uncertainty and hope. Responses were analyzed qualitatively using constant comparison until thematic saturation was reached. Results Twenty-six percent of caregivers had been involved in a conversation with a clinician about life expectancy, even though 79% expressed a preference to have such a discussion. According to caregivers, clinician concerns about taking away hope or the uncertainty of prognostic information should not deter them from bringing up the topic of life expectancy. Thematic analysis suggested several approaches that may facilitate prognosis communication: establishing a relationship with the caregiver and care recipient; delivering the prognosis in clear, plain language; and responding to emotion with empathy. Conclusion Caregivers reported a preference for being included in conversations about a care recipient's life expectancy.