Rates and risks for late referral to hospice in patients with primary malignant brain tumors.

BACKGROUND: Primary malignant brain tumors (PMBTs) are devastating malignancies with poor prognosis. Optimizing psychosocial and supportive care is critical, especially in the later stages of disease. METHODS: This retrospective cohort study compared early versus late hospice enrollment of PMBT patients admitted to the home hospice program of a large urban, not-for-profit home health care agency between 2009 and 2013. RESULTS: Of 160 patients with PMBT followed to death in hospice care, 32 (22.5%) were enrolled within 7 days of death. When compared with patients referred to hospice more than 7 days before death, a greater proportion of those with late referral were bedbound at admission (97.2% vs 61.3%; OR=21.85; 95% CI, 3.42-919.20; P < .001), aphasic (61.1% vs 20.2%; OR = 6.13; 95% CI, 2.59-15.02; P < .001), unresponsive (38.9% vs 4%; OR = 14.76,;95% CI, 4.47-57.98; P < .001), or dyspneic (27.8% vs 9.7%; OR = 21.85; 95% CI, 3.42-10.12; P = .011). In multivariable analysis, male patients who were receiving Medicaid or charitable care and were without a health care proxy were more likely to enroll in hospice within 1 week of death. CONCLUSIONS: Late hospice referral in PMBT is common. PMBT patients enrolled late in hospice are severely neurologically debilitated at the time hospice is initiated and therefore may not derive optimal benefit from multidisciplinary hospice care. Men, patients with lower socioeconomic status, and those without a health care proxy may be at risk for late hospice care and may benefit from proactive discussion about end-of-life care in PMBT, but prospective studies are needed.

Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives.

BACKGROUND: Hospice provides an opportunity for patients to receive care at home at the end of life (EOL); however, approximately 25% of patients who disenroll from hospice are hospitalized. Hospitalization can lead to poor care transitions and result in unwarranted care and adverse patient outcomes. Research examining reasons for hospitalization in this patient population is limited. OBJECTIVE: The objective was to understand the reasons for hospitalization among home hospice patients through the perspectives of hospice interdisciplinary team (IDT) members. METHODS: This was a qualitative study using a grounded theory approach. Seven semistructured focus group were conducted to solicit reasons for hospitalization among home hospice patients. Participants consisted of 73 home hospice IDT members from a not-for-profit hospice agency in New York City. Focus group recordings were transcribed and analyzed using content analysis. RESULTS: Eight major themes were identified: (1) not fully understanding hospice, (2) lack of clarity about disease prognosis, (3) desire to continue receiving care from nonhospice physicians and hospital, (4) caregiver burden, (5) distressing/difficult-to-manage signs and symptoms, (6) caregivers' reluctance to administer morphine, (7) 911's faster response time compared to hospice, and (8) families' difficulty accepting patients' mortality. CONCLUSIONS: Reasons for hospitalization in home hospice patients are multifactorial and complex. Our study highlights barriers and challenges that patients, families, physicians, and hospices face around home hospice care and hospitalization. More research is needed to elucidate these issues and develop viable strategies to address them.

Are there racial differences in attitudes toward hospice care? A study of hospice-eligible patients at the Visiting Nurse Service of New York.

Research on African American and white attitudes, perceptions, and knowledge of hospice care has focused predominantly on patients and providers in institutions and community-based care settings. Little is known about patients receiving home health services, despite growing trends toward noninstitutional care in the United States. This study of home health clients who are eligible for hospice, but not currently receiving it, found few differences between racial groups with regard to attitudes about end-of-life care. An alarming proportion of African American and white home health clients held erroneous ideas about hospice care and had not discussed this option with their providers. These findings suggest that increased referrals to home-based hospice care among home health clients depend on the availability and professional dissemination of accurate, spiritually sensitive information.