What Is Different About Children Who Receive Palliative Care?

Abstract

Source: Keele L, Keenan HT, Sheetz J, et al. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics. 2013; 132(1): 72– 78; doi: 10.1542/peds.2013-0470Researchers from the University of Utah queried the Pediatric Health Information System (PHIS) database (a collaboration of >40 US children’s hospitals) to analyze trends in the use of palliative care (PC) for terminally ill children. Included were children <18 years old who died ≥5 days after admission to a PHIS hospital during a 10-year period (2001–2011). ICD-9 and clinical transaction codes were used to identify diagnostic categories, interventions, receipt of services, and charges. These data were compared in study children who did, or did not, receive PC.Data were analyzed on 24,342 children who died; 85% of these patients had complex chronic conditions. Receipt of PC for children who eventually died increased from 1% during 2001–2004 to 8% during 2009–2011. Overall, 919 (4%) of the children in the study received PC during the terminal hospitalization. Children who received PC services had fewer hospital days prior to death, fewer interventions, fewer medications, and were less likely to die in the ICU. Unexpectedly, children who received PC had a lower use of pain medications (23% vs 44%) and sedatives (10% vs 31%) in the last 4 days of life than those who didn’t receive these services. Average daily charges during terminal hospitalization were about $2,500 lower for the children who received PC. Children with complex chronic conditions were significantly more likely to receive PC services than those without one of these conditions. Among children with a complex chronic condition, those with neurologic disorders were more likely to receive PC, while those with neonatal and circulatory conditions were less likely to receive these services. African American children were less likely than white or Hispanic children to receive PC. Older children and those with private insurance were also more likely to receive PC.The authors conclude that receipt of PC by dying children is uncommon but increasing in frequency and that PC involvement for children with neonatal and cardiovascular conditions can especially be improved.Dr Moore has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.Pediatric PC for all children with potentially life-limiting illness has been a goal of the AAP since 2000.1 The AAP’s statement and work of pioneers in the field have resulted in growth from a small handful of programs in 2000 to 69% of children’s hospitals utilizing PC services in 2013.2 The current study provides insights on the growth that has occurred and highlights the significant need for further expansion.This study is an important contribution to the body of research supporting pediatric PC. Prior publications and current work show the value added for patients and families in regards to emotional support, assistance with medical decision-making, and communication during critical interactions for both adults and children.3 Adult studies have shown the positive impact that PC can have on costs.4 This study demonstrated cost reduction, as well as reduced length of stay, fewer procedures, and decreased use of sedative and opioid medication at the end of life. The surprising paradox is that better care may be less expensive. Health care systems seeking to improve outcomes and lower costs might consider utilizing PC.Limitations of this study include its retrospective nature, lack of data for children dying at home or in hospitals outside of the Pediatric Health Information System, dependence on correct/standardized coding for PC, and the variability of PC teams and their practices. While there has been excellent leadership in the field of pediatric PC over the last decade, there has not been a standardization of practice structure, team composition, or billing practices among existing and emerging services, complicating the evaluation of data in the current study.The lower use of analgesics and sedatives is an unexpected finding that needs to be better understood. It is unclear if this is a result of more judicious use of these medications by PC professionals, or if it in some way is a reflection of the patient population seen by PC. Racial disparities found in this study should be followed up along with differences between children dying with or without chronic complex medical issues. Criteria for automatic PC referral have been advocated by some and may be a more reliable way to avoid bias in our referrals.5 As we work towards the AAP goal of “widely distributed and effective palliative care” the results of this and other studies (see AAP Grand Rounds, October 2013;30[4]:446) can help direct our efforts.