John G Cagle1, Keelan M McClymont2,3, Julie N Thai2, Alexander K Smith2,3. 1. University of Maryland, Baltimore, Maryland. 2. Division of Geriatrics, Department of Medicine, University of California at San Francisco, San Francisco, California. 3. San Francisco Veterans Affairs Medical Center, San Francisco, California.
Abstract
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.
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.
Authors: Emily Cherlin; Terri Fried; Holly G Prigerson; Dena Schulman-Green; Rosemary Johnson-Hurzeler; Elizabeth H Bradley Journal: J Palliat Med Date: 2005-12 Impact factor: 2.947
Authors: Sharon M Parker; Josephine M Clayton; Karen Hancock; Sharon Walder; Phyllis N Butow; Sue Carrick; David Currow; Davina Ghersi; Paul Glare; Rebecca Hagerty; Martin H N Tattersall Journal: J Pain Symptom Manage Date: 2007-05-25 Impact factor: 3.612
Authors: Karen Hancock; Josephine M Clayton; Sharon M Parker; Sharon Wal der; Phyllis N Butow; Sue Carrick; David Currow; Davina Ghersi; Paul Glare; Rebecca Hagerty; Martin H N Tattersall Journal: Palliat Med Date: 2007-09 Impact factor: 4.762
Authors: Jayaji M Moré; Sean Lang-Brown; Rafael D Romo; Sei J Lee; Rebecca Sudore; Alexander K Smith Journal: J Am Geriatr Soc Date: 2018-10-22 Impact factor: 5.562
Authors: Jennifer L Wolff; Danny Scerpella; Kimberly Cockey; Naaz Hussain; Tara Funkhouser; Diane Echavarria; Jennifer Aufill; Amy Guo; Danetta H Sloan; Sydney M Dy; Kelly M Smith Journal: Am J Hosp Palliat Care Date: 2020-12-16 Impact factor: 2.500
Authors: Joanna Paladino; Suzanne Mitchell; Namita Mohta; Joshua R Lakin; Nora Downey; Erik K Fromme; Sue Gullo; Evan Benjamin; Justin J Sanders Journal: Jt Comm J Qual Patient Saf Date: 2020-10-24