A qualitative analysis of patient and family perspectives of palliative care.

Background: To provide truly patient-centered palliative care services, there is a need to better understand the perspectives and experiences of patients and families. Increased understanding will provide insight into the development of health care team competencies and organizational changes necessary to improve patient care.

Objective: Our aim was to explore patient and family perceptions of palliative care services at the end of life or during serious illness and to identify facilitators and barriers to receipt of palliative care services.

Methods: In-depth, semi-structured patient and family interviews were conducted, transcribed, and independently reviewed using grounded theory methodology and preliminary interpretations. A combined deductive and inductive iterative qualitative approach was used to identify recurring themes. The study was conducted in a physician-led, not-for-profit, multispecialty integrated health system serving three large, western, rural states. A purposive sample of 14 individuals who received palliative care services were interviewed alone or with their families for a total of 12 interviews.

Results: Presence, Reassurance, and Honoring Choices emerged as central themes linked to satisfaction with palliative care services. Themes were defined as including health care professional attributes of respect, approachability, genuineness, empathy, connectedness, compassion, sensitivity, an ability to listen, good communication, provision of information, empowerment, and timeliness. Honoring Choices included those pertaining to treatment, spirituality, and family needs.

Conclusions: At end of life or during times of serious illness, patients and families identified behaviors of Presence, Reassurance, and Honoring Choices as important. According to patients/families, health care providers must be compassionate and empathetic and possess skills in listening, connecting, and interacting with patients and families.