From Hospital to Home: Referrals to pediatric hospice and home-based palliative care.

CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices.

OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received.

METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC.

RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit.  Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred.  Over half of the 58 patients referred to hospice died within the study period (n=34, 58.6%); descendants were more likely to have cancer (p=.002) and less likely to have a neurologic (p=.021) diagnosis.

CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC.  Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs.  Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.