Why don't patients enroll in hospice? Can we do anything about it? 2010

Elizabeth K Vig, and Helene Starks, and Janelle S Taylor, and Elizabeth K Hopley, and Kelly Fryer-Edwards
Division of Gerontology and Geriatric Medicine, University of Washington, Seattle, WA, USA. vigster@u.washington.edu

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 OBJECTIVE To identify reasons that eligible patients do not enroll in hospice (phase 1). OBJECTIVE To identify strategies used by hospice providers to address these reasons (phase 2). METHODS Semi-structured interviews analyzed using content analysis. METHODS 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. METHODS 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.

UI MeSH Term Description Entries
D007407 Interviews as Topic Works about conversations with an individual or individuals held in order to obtain information about their background and other personal biographical data, their attitudes and opinions, etc. It includes works about school admission or job interviews. Group Interviews,Interviewers,Interviews, Telephone,Oral History as Topic,Group Interview,Interview, Group,Interview, Telephone,Interviewer,Interviews, Group,Telephone Interview,Telephone Interviews
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D010358 Patient Participation Patient involvement in the decision-making process in matters pertaining to health. Patient Activation,Patient Empowerment,Patient Engagement,Patient Involvement,Patient Participation Rates,Activation, Patient,Empowerment, Patient,Engagement, Patient,Involvement, Patient,Participation Rate, Patient,Participation Rates, Patient,Participation, Patient,Patient Participation Rate
D003657 Decision Making The process of making a selective intellectual judgment when presented with several complex alternatives consisting of several variables, and usually defining a course of action or an idea. Credit Assignment,Assignment, Credit,Assignments, Credit,Credit Assignments
D005190 Family A social group consisting of parents or parent substitutes and children. Family Life Cycles,Family Members,Family Life Cycle,Family Research,Filiation,Kinship Networks,Relatives,Families,Family Member,Kinship Network,Life Cycle, Family,Life Cycles, Family,Network, Kinship,Networks, Kinship,Research, Family
D005260 Female Females
D006282 Health Personnel Men and women working in the provision of health services, whether as individual practitioners or employees of health institutions and programs, whether or not professionally trained, and whether or not subject to public regulation. (From A Discursive Dictionary of Health Care, 1976) Health Care Professionals,Health Care Providers,Healthcare Providers,Healthcare Workers,Health Care Professional,Health Care Provider,Healthcare Provider,Healthcare Worker,Personnel, Health,Professional, Health Care,Provider, Health Care,Provider, Healthcare
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults

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