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From Hospital to Home: Referrals to Pediatric Hospice and Home-based Palliative Care
Debra Lotstein1, Margaret J Klein2, Lisa C Lindley3
1Division of Comfort and Palliative Care, Department of Anesthesia Critical Care Medicine (D.L.), Children's Hospital Los Angeles, Los Angeles, CA, USA and Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, California, USA.
Insights
Pediatric palliative care (PPC) teams rarely refer eligible children to hospice or home-based palliative care (HBPC). Children in the ICU or with neurologic conditions may miss appropriate referrals, indicating a need for improved care coordination.
Area of Science:
- Pediatric healthcare
- Palliative care
- Serious illness management
Background:
- Hospital-based pediatric palliative care (PPC) can facilitate transitions to community-based services.
- Referral practices from PPC to hospice and home-based palliative care (HBPC) for children with serious illnesses are not well understood.
Purpose of the Study:
- To describe community-based program referrals from a hospital-based PPC team.
- To identify factors influencing referral type to hospice and HBPC.
- To assess potential misalignment between patient needs and received referrals.
Main Methods:
- Retrospective chart abstraction of patients seen by a pediatric palliative care team at a large urban children's hospital in 2017.
- Inclusion criteria: patients followed for at least 6 months or until death.
- Data collected: clinical and demographic characteristics, and referrals to hospice and HBPC.
Main Results:
- Of 228 eligible patients not deceased during hospitalization, 18.4% were referred to HBPC and 25.4% to hospice.
- Only one-third of demographically eligible patients were referred to HBPC (excluding hospice referrals); ICU patients were least likely to be referred.
- Of those referred to hospice, 58.6% died within the study period; cancer diagnoses were more common, neurologic diagnoses less common.
Conclusions:
- A minority of eligible patients receive hospice or HBPC referrals from hospital-based PPC teams.
- Children discharged from ICUs and those with neurologic conditions may be at higher risk for missed or misaligned referrals.
- Further research is needed to identify and address causes of referral misalignment, and advocacy for adaptable programs is recommended.
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 = 0.002) and less likely to have a neurologic (P = 0.021) 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.
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