ABSTRACT
BACKGROUND: Patients with advanced cancer experience significant symptoms, ineffective treatments, and hospice underutilization. Home-based palliative care (HBPC) may fill a service gap for patients who require intensive home management, but are not enrolled in hospice. Even as data emerge on the utilization impacts of HBPC, other impacts are not as well known. METHODS: We describe findings of a pilot project in HBPC, Community Bridges (CB), for patients with advanced cancer. We assessed baseline symptom severity, caregiver burden, patient and caregiver program satisfaction, and CB team experience. RESULTS: Seventeen patients were seen. Baseline patient symptom burden and caregiver burden were high. Half of patients died within six months of enrollment. Patients and caregivers reported high program satisfaction and that CBs filled a gap in care. CB providers often served in the role as crisis managers and as trusted reporters for treating oncologists. CONCLUSIONS: CBs filled an unmet need for patients with advanced, metastatic cancer who desired ongoing cancer treatment, but were also in need of intensive end-of-life home services.
Subject(s)
Caregivers/psychology , Home Care Services/organization & administration , Neoplasms/nursing , Neoplasms/psychology , Palliative Care/organization & administration , Palliative Care/psychology , Quality of Life/psychology , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Patient Satisfaction , Pilot ProjectsABSTRACT
OBJECTIVE: To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life (EOL) care in underserved inpatients. METHODS: Qualitative analysis of 1-hour interviews with inpatients at a public hospital whose physician "would not be surprised" by the patient's death or intensive care unit (ICU) admission within a year. Patients who were non-English speaking, lacked mental capacity, or had uncontrolled symptoms were excluded. A semistructured interview guide was developed and used for all interviews. We digitally recorded, transcribed, and conducted a thematic analysis of the interviews. RESULTS: Twenty patients participated. Difficult events such as estrangement, homelessness, substance abuse, and imprisonment shaped patients' approaches to serious illness. This influence manifested in interpersonal relationships, conceptualizations of death and concerns about dying, and approaches to coping with EOL. Because patients lacked social support, providers played significant roles at EOL. Patients preferred honest communication with providers and sharing in medical decision-making. A prolonged dying process was feared more than sudden death. Concerns included pain, dying in the hospital, and feeling unwelcome in the hospital. Patients coped by advocating for their own care, engaging with religion/spirituality, and viewing illness as similar to past trauma. Participants suggested that providers listen to their concerns and requested accessible chaplaincy and home-based services. CONCLUSIONS: Providers should consider that difficult life events influence underserved patients' approaches to dying. Attention to patients' specific preferences and palliative care in public hospitals and locations identified as home may improve care for patients who lack social support.
