Do Level IV Neonatal Intensive Care Units Refer to Palliative Care and/or Hospice at Discharge?

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ESPR423
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Abstract: :

Background: Neonatal palliative care is comprised of family-centered care, comfort care, end-of-life care, hospice, and care of the medically complex infant/medical home. Hospice and home-based palliative care programs provide care for children with life-limiting conditions and families. Despite the benefits of hospice and home-based palliative care programs, significant knowledge deficits remain with respect to the integration of palliative care and its principles in the neonatal intensive care unit (NICU).  There have been few studies conducted evaluating neonates discharged to home with a referral to palliative care and/or hospice.  

Objectives: (1) To evaluate the characteristics of infants at time of discharge who were referred to palliative care and/or hospice in the Children's Hospital Neonatal Database (CHND) over a 6-year period. (2) To evaluate the presence of inter center variation among the centers in the CHND with respect to referral to palliative care and/or hospice at discharge. 

Methods: We performed a retrospective cohort analysis of infants using data from the CHND, a database comprised of clinical data from 34 level IV NICUs in North America.  Eligible infants included those discharged to home over a 6-year period.  We compared infant characteristics among infants who were discharged to home vs. infants who were discharged to home with a palliative care and/or hospice referral. 

Results:  Between 2010-2016, 70,312 infants were discharged to home of which 500 (0.71%) were referred to palliative care and/or hospice. The infants referred to palliative care and/or hospice at discharge were more likely to be >/= 37 weeks (65.8 vs. 56.2%, p-value <0.01) and small for gestational age (27.8 vs. 14.2% p-value <0.01). The majority were admitted secondary to an anomaly/syndrome, respiratory, or neurologic conditions. Additionally, these infants had a longer length of stay (38.8 vs. 33.31%, p-value 0.01) and were more likely to be discharged home with technology including apnea/cardiorespiratory monitoring (26.4 vs. 14.2%, p-value <0.01), oxygen (39.6 vs. 10.4%, p-value <0.01), mechanical ventilation (4.4 vs. 0.91%, p-value <0.01), parenteral nutrition (1.4 vs. 0.57, p-value 0.02), feeding ostomy (24.4 vs. 8.5%, p-value <0.01), and tracheostomy (5.4 vs. 1.6%, p-value <0.01).  Inter center variation ranged from 0 to 3.1% among the centers in the CHND.

Conclusion:  Infants from level IV NICUs are referred to palliative care and/or hospice at discharge, but the rates vary significantly across the country.  These infants spend weeks in the hospital and are often discharged with significant technological support. Recognizing this, a need exists for hospice and home-based palliative care programs. However, these resources are limited and vary by location further supporting a need for future projects to develop an infrastructure to support this patient population. 


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A.I. duPont Hospital for Children/Thomas Jefferson University Hospital
A.I. duPont Hospital for Children
Children's Hospital Association
A.I. duPont Hospital for Children

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