Context: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system.
Objective: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience.
Design: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis.
Setting: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine.
Participants: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included.
Outcome measures: Perceptions of participants on EOL issues.
Results: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship.
Conclusions: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.