Family perspectives on the quality of pediatric palliative care.
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.
Contro
Nancy
N
Pediatric Palliative Care Program Development, Lucile Salter Packard Children's Hospital, Stanford University Medical Center, 725 Welch Rd, Palo Alto, CA 94304, USA. nancy.contro@medcenter.stanford.edu
Larson
Judith
J
Scofield
Sarah
S
Sourkes
Barbara
B
Cohen
Harvey
H
D000293:Adolescent; D000328:Adult; D000359:Aftercare / Q000523:psychology / Q000592:standards; D000367:Age Factors; D001601:Bereavement; D002140:California; D002648:Child; D002675:Child, Preschool; D003142:Communication; D005190:Family / Q000523:psychology*; D005260:Female; D006302:Health Services Research; D018575:Home Care Services, Hospital-Based / Q000592:standards; D006776:Hospitals, Pediatric / Q000592:standards; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000523:psychology / Q000592:standards*; D017060:Patient Satisfaction; D010372:Pediatrics / Q000592:standards*; D011368:Professional-Family Relations; D002666:Psychology, Child; D011787:Quality of Health Care; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology / Q000592:standards*; D017749:Total Quality Management; D014342:Truth Disclosure