Community-Based Provider Concerns About Pediatric Hospice and Palliative Care

Children and families often rely on community-based hospice and palliative care organizations for care services.

The purpose of this study was to explore pediatric-specific concerns of field-based hospice and palliative care clinicians in the United States.

The study analyzed responses from a free-text question distributed within an electronic organizational membership survey sent to National Alliance for Care at Home (the Alliance) members. Semantic content analysis was applied.

Out of 295 survey respondents, 92 (31%) answered the optional free-text final question: "What keeps you up at night regarding pediatric palliative and hospice care?". Over half of responders (53%; n = 49) worry most about "unmet needs". Additional practical concerns included: resources; staff shortages and lack of succession plans; training and education gaps; emotional toll; policy confusion; regulatory fears including concerns about the future of concurrent care; community awareness/stigma; referral patterns; lack of leadership support. Concerns were described as being in tension with the philosophy of hospice and palliative care. Responses depicted philosophical fears about the current or future risk of not upholding the field's core values such as equity, fairness, quality, sustainability, viability, nonabandonment due to pragmatic and practical realities.

Further coordinated research and engagement are warranted to prevent current evening concerns from devolving into daytime realities.