Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?

• Published in: Journal of general internal medicine : JGIM 2010-10, Vol.25 (10), p.1009-1019
• Main Authors: Vig, Elizabeth K., Starks, Helene, Taylor, Janelle S., Hopley, Elizabeth K., Fryer-Edwards, Kelly
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Biological and medical sciences; Content analysis; Decision Making; Enrollments; Ethics; Family - psychology; Female; General aspects; Health Personnel - psychology; Hospice care; Hospice Care - psychology; Humans; Internal Medicine; Interviews as Topic - methods; Male; Medical sciences; Medicine; Medicine & Public Health; Middle Aged; Original Research; Patient Participation - psychology; Patients; Public health. Hygiene; Public health. Hygiene-occupational medicine; Quality of care; Teaching. Deontology. Ethics. Legislation
• ISSN: 0884-8734; 1525-1497
• DOI: 10.1007/s11606-010-1423-9

BACKGROUND United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll. OBJECTIVE Primary objective: To identify reasons that eligible patients do not enroll in hospice (phase 1). Secondary objective: To identify strategies used by hospice providers to address these reasons (phase 2). DESIGN Semi-structured interviews analyzed using content analysis. PARTICIPANTS In phase 1, we interviewed 30 patients and/or family members of patients who had a hospice admissions visit, but who did not enroll. In phase 2, we interviewed 19 hospice staff and national experts. APPROACH In phase 1, we asked participants to describe the patient's illness, the hospice referral, and why they had not enrolled. We performed a content analysis to characterize their reasons for not enrolling in hospice. In phase 2, we enrolled hospice admissions staff and hospice experts. We asked them to describe how they would respond to each reason (from phase 1) during an admissions visit with a potential new hospice patient. We identified key phrases, and summarized their recommendations. RESULTS Reasons that patients hadn’t enrolled fell into three broad categories: patient/family perceptions (e.g., “not ready”), hospice specific issues (e.g., variable definitions of hospice-eligible patients), and systems issues (e.g., concerns about continuity of care). Hospice staff/experts had encountered each reason, and offered strategies at the individual and organizational level for responding. CONCLUSIONS In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients’ and families’ perceptions and concerns.