Allen C Sherman1, Stephanie Simonton-Atchley1, Cindy W Mikeal2, Kendra M Anderson3, Konstantinos Arnaoutakis4, Laura F Hutchins4, Issam Makhoul4, Fade Mahmoud4, Natasa Milojkovic4, Sarah E Harrington5, James Y Suen6. 1. a Behavioral Medicine , Winthrop P. Rockefeller Cancer Institute, University of Arkansas for Medical Sciences , Little Rock , Arkansas , USA. 2. b Department of Neurology , University of Texas Health Science Center at Houston, McGovern Medical School , Houston , Little Rock, Arkansas , USA. 3. c Department of Neurology , University of Texas Health Science Center at Houston, McGovern Medical School , Houston , Texas , USA. 4. d Division of Hematology Oncology, Department of Internal Medicine , Winthrop P. Rockefeller Cancer Institute, University of Arkansas for Medical Sciences , Little Rock , Arkansas , USA. 5. e Division of Palliative Care, Department of Internal Medicine , Winthrop P. Rockefeller Cancer Institute, University of Arkansas for Medical Sciences , Little Rock , Arkansas , USA. 6. f Department of Otolaryngology , Winthrop P. Rockefeller Cancer Institute, University of Arkansas for Medical Sciences , Little Rock , Arkansas , USA.
Abstract
PURPOSE: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of "preparedness," however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development. DESIGN: This qualitative study examined patient perspectives regarding preparedness for EOL care. PARTICIPANTS AND METHODS: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data. FINDINGS: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning). CONCLUSIONS: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.
PURPOSE: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of "preparedness," however, there is insufficient information about what cancerpatients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development. DESIGN: This qualitative study examined patient perspectives regarding preparedness for EOL care. PARTICIPANTS AND METHODS: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data. FINDINGS: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning). CONCLUSIONS: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.