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Nancy Contro, MSW, LCSW; Judith Larson, PhD; Sarah Scofield, MSW, LCSW; Barbara Sourkes, PhD; Harvey Cohen, MD

Arch Pediatr Adolesc Med. 2002;156:14-19.

Background  As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif.

Methods  Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes.

Results  Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients.

Conclusions  There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.

From Pediatric Palliative Care Program Development (Ms Contro and Dr Larson) and Pediatric Intensive Care (Ms Scofield), Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif; Montreal Children's Hospital, Montreal, Quebec (Dr Sourkes); and the Department of Pediatrics, Stanford University School of Medicine, Stanford, Calif (Dr Cohen).

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