Live hospice discharge: Experiences of families, and hospice staff. Issue 8 (August 2021)

• Record Type: Journal Article
• Authors: Clayton, Margaret F.; Utz, Rebecca; Iacob, Eli; Towsley, Gail L.; Eaton, Jacqueline; Fuhrmann, Hollie J.; Dassel, Kara; Caserta, Michael; Supiano, Katherine
• Is Part Of: Patient education and counseling. Volume 104:Issue 8(2021)
• Page Start: 2054
• Page End: 2059
• Publication Date: 2021-08
• Subjects: Hospice -- Live hospice discharge -- Patient and family centered care -- Policy -- Caregivers -- Hospice staff -- Nurse aides -- Cancer -- Alzheimer's disease and related dementias; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2021.01.002
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: Hospice eligibility is based on a cancer model, where decline is usually predictable. Decline is more difficult to predict for patients with non-cancer diagnoses. Regulatory guidelines for hospice eligibility need increased flexibility. Live discharge is distressing to patients, family caregivers, and the hospice staff. Live hospice discharge makes delivery of patient-centered end-of-life care difficult. Abstract: Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013–17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013–17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.