In this issue of Pediatrics, Johnston et al,1 in their article “Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions,” add to our growing awareness of the impact that family sociodemographic characteristics can have on health care for children with complex chronic conditions (CCCs). Family race, ethnicity, income, geography, and education have been shown to alter other aspects of medical care and health outcomes for this vulnerable pediatric population.2,3 Because >80% of children with CCCs die in inpatient settings,4 it is important to examine how such factors may also be associated with end-of-life care.
Johnston et al1 analyzed all deaths in California between 2000 and 2013 for children 1 to 21 years old with an International Classification of Diseases, Ninth and 10th Revisions code for a CCC5 on their death certificate or on hospital discharge documentation within 1 year of death. The authors found that treatment intensity in the 30 days before death was highest for adolescents, children from some racial and/or ethnic groups (Hispanic and “other” race and/or ethnicity), and children from low-income neighborhoods.
Medical care provided to a child at the end of life results from that child’s clinical condition and collaborative decision-making between the clinicians and family. Cardiopulmonary resuscitation and hospitalization in an ICU may clearly benefit otherwise healthy children with acute, life-threatening illnesses; these interventions can be of uncertain benefit to children with serious underlying diseases. For children with CCCs, high-quality care includes advance care planning regarding therapies that may only prolong death.
Nuanced communication regarding prognosis, quality of life, and patient and family preferences (all of which are fundamental to advance care planning) are not easy. Johnston et al’s1 finding that adolescents received higher treatment intensity before death likely reflects the additional challenges of advance care planning for older children. Data from Lyon et al6 demonstrated that adolescents with HIV and/or AIDS and their families often have different views about when to discuss end-of-life decisions (families preferred later) and end-of-life treatment interventions (families preferred more).6 Advance care planning is complicated by adolescents’ evolving capacity for consent, understanding of death, and ability to articulate salient values about quality of life and treatment burden. This is even more difficult when adolescents with CCCs have neurocognitive impairments. Finally, adolescents with CCCs may have survived multiple decompensations throughout their lifetimes; their families and clinicians may simply not recognize that the end of life is near. All of these challenges can undermine discussions about limiting treatments that may not prolong life.
Johnston et al’s1 finding of greater treatment intensity for children of Hispanic and/or other races and those from low-income neighborhoods likely has several overlapping etiologies. These families may have trouble accessing consistent health care because of insurance barriers, transportation problems, difficulty missing work to attend doctors’ visits, or the various uncovered costs of chronic medical conditions.7,8 Gaps in preventive or chronic management may mean that such children arrive at the hospital with more severe symptoms, prompting rapid treatment escalation and allowing less time for quality consideration of the benefits and burdens of interventions. Language and cultural barriers can impair clinician-family communication, reducing the success of advance care planning.
More work is needed to understand how socioeconomic factors combine to alter end-of-life care for children. In the meantime, physicians caring for adolescents with CCCs, and for children with CCCs from disadvantaged backgrounds, should be aware of these risks and trigger earlier and more comprehensive advance care planning. Of note, infants <1 year old were excluded from Johnston et al’s1 study given that their patterns of care differ from those of older children; infants are more likely to die in the hospital, and in the ICU, than older children, for instance.4 Yet more than half of all pediatric deaths occur in infancy, and social factors such as race and income are related to premature birth,9 and race is clearly associated with infant death.10 Future work must also explore potential disparities in neonatal and infant end-of-life care.
Opinions expressed in these commentaries are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees.
FUNDING: No external funding.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2018-2228.
complex chronic condition
POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.