Pediatric Palliative Care Increasing, but Varied

Ricki Lewis, PhD

November 04, 2013

Pediatric palliative care (PPC) programs have been increasing over the course of the last decade, but services provided vary, according to a study published online November 4 in Pediatrics.

PPC programs began to increase at the end of the last century in response to evidence that children experience life-threatening illnesses and dying differently than do adults. In 2003, the Institute of Medicine released guidelines to provide such care, recommended specialty training, and encouraged research to improve care for children at the end of life and their families. The subspecialty has grown since then.

Because much more is known about palliative care for adults than for children, Chris Feudtner, MD, PhD, MPH, from the Children's Hospital of Philadelphia in Pennsylvania, and colleagues surveyed PPC services from April to August 2012. The team investigated program staffing, range of services, financial support, and consultation frequency.

The researchers sought input from 226 children's hospitals and similar institutions in the United States, and 162 (71.7%) responded. Of these, 112 (69.1%) reported having a PPC program. Assuming that nonrespondents did not respond because they do not have a PPC program altered the percentage of institutions without these programs to 49.6%.

The oldest PPC program began in 1984, and 2008 was the year with the most new programs (12). Institutions included university and community settings, small and large facilities, children's hospitals, and mixed pediatric/adult facilities.

Most programs offered inpatient services only, during the week, with weekend care difficult to access. Most programs (88.4%) maintained consultation services, more than 90% of programs covered patients from the newborn period through adolescence, and only 11.6% had dedicated PPC beds or a palliative care suite. Physicians almost always initiated palliative care discussions, and a third to a half of respondents reported that nurses, chaplains, social workers, and parents did so as well.

PPC programs with consultation services reported a mean of 88 new inpatient consultations annually, ranging from 27 to 127. All of the programs worked with hospice services.

Some of the programs provided services outside the hospital setting, including outpatient clinic (18.8%), home visits (29.5%), and home-based care (10.7%). Most programs also provided bereavement and memorial services.

Staffing varied greatly. On average, 2.33 full-time equivalents were assigned to the programs, of which 0.85 were physicians or nurse practitioners. Social workers participated in 66.1% of the programs, but their average full-time equivalent was 0.29.

The researchers conclude that nearly half of the surveyed institutions offer PPC services. Most programs were established during the last decade and were well-supported, but the services provided and the professions of the staff members varied greatly.

Limitations of the study included the assumption that nonresponding institutions do not have PPC programs, exclusion of some institutions that may indeed have PPC programs, and possibly contacting individuals who were not the best qualified to answer the questions. The investigators suggest that future surveys consider diagnoses, daily activities within the programs, and interdisciplinary interactions among providers.

The investigators have disclosed no relevant financial relationships.

Pediatrics. Published online November 4, 2013.

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