Settings for Pediatric Palliative Care in the United States

The way that pediatric palliative care is paid for and organized in the USA is based on the hospice benefit that was designed for the federal Medicare program in 1983. It is an adult model of care based on the disease trajectory of cancer. Patients can receive a range of palliative services if they are diagnosed to be within 6 months of death, and only if they agree to forego any curative care (a decision designed to curb costs). Services come in the form of home nursing care, counseling, spiritual care, pain and symptom management, and bereavement care for surviving family members. While inpatient hospice care is available, most hospice care provided under Medicare is homebased. Nearly all private insurance plans have adopted Medicare’s hospice benefit, as did Medicaid (the government’s program for low-income disabled people) in 1993. This adult model of hospice care fails children in a number of ways. First, parents identify the point of diagnosis as the most devastating time of the illness; family members are emotionally and spiritually paralyzed and find it difficult attending to the necessities of day-to-day living. Siblings often act out as most of their parents’ attention is given to the sick child. Parents also feel overwhelmed with how to find and coordinate so many of the services their child will need. Yet both public and private insurers do not offer case management or counseling for families at the point of diagnosis. Moreover, parents and Of the 55,000 children and youth who die annually in the United States, one third of them die from life-threatening conditions [1] . In any given year, about 1.3 million children suffer from serious illnesses and could benefit from hospice and palliative care services [2] . Since most children with life-threatening illnesses receive aggressive care until death, the majority of children die in institutions, hospitals, long-term care facilities or rehabilitation centers. Less than 1% of children who need hospice and palliative care services receive any, according to Children’s Hospice International (CHI). While this statistic is glaring, it has taken a while for US policymakers to become aware of the deficiencies in pediatric palliative care. In fact, about a decade after a comprehensive national study found gross inadequacies in the way that adults die in America – in terms of pain and symptom control, access to hospice care, and poor provider communication about treatment options for terminal patients [3] – the even grimmer landscape for pediatric palliative care finally came to public light in 2003 through an Institute of Medicine report entitled When Children Die. These government report’s findings were condemning. It noted that children fail to receive competent, compassionate care that meets their physical, emotional, and spiritual needs, and that current methods of organizing and financing palliative, end-of-life, and bereavement care in the US health care system complicate the provision and coordination of services for children [4] . Put succinctly, instances of pediatric palliative care – whether at home, in hospitals, or inpatient hospices – are quite rare in the United States, a circumstance that CHI is seeking to change. This article will describe in more detail the barriers to expanding pediatric palliative Received: October 25, 2005 Revised: June 6, 2006