Palliative Care Is Critical to the Changing Face of Child Mortality and Morbidity in the United States

1. Jori F. Bogetz, MD1
2. Alan R. Schroeder, MD2
3. David A. Bergman, MD1
4. Harvey J. Cohen, MD, PhD1
5. Barbara Sourkes, PhD1

1. ¹Stanford University School of Medicine, Palo Alto, CA, USA
2. ²Santa Clara Valley Medical Center, San Jose, CA, USA

1. Jori F. Bogetz, Division of General Pediatrics, Department of Pediatrics, Lucile Packard Children’s Hospital, Stanford University School of Medicine, 770 Welch Road, Suite 100, Palo Alto, CA 94304, USA. Email: jbogetz@stanford.edu

I have had to watch my child die twice, once when he was diagnosed and now the slow death from his disease. —Mother of a 9-year-old boy with lissencephaly, developmental delay, epilepsy, gastrostomy feeding tube, and wheelchair dependence

Children With a Pressing Need

In hospitals around the nation, children with medical complexity (CMC) receive life-prolonging interventions for debilitating diseases. These children are alive because of disease-focused interventions including multiple medications, innovative procedures, durable medical equipment, and continuous care. Their lives depend on an intricate dance of family caregivers—along with health care providers—who must manage long-term illnesses in their homes and communities in the context of a health care system that is only beginning to address the challenges of complex chronic disease care for …

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