Family Perspectives on the Quality of Pediatric Palliative Care
Top Cited Papers
Open Access
- 1 January 2002
- journal article
- research article
- Published by American Medical Association (AMA) in Archives of Pediatrics & Adolescent Medicine
- Vol. 156 (1) , 14-19
- https://doi.org/10.1001/archpedi.156.1.14
Abstract
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.Keywords
This publication has 9 references indexed in Scilit:
- Symptoms and Suffering at the End of Life in Children with CancerNew England Journal of Medicine, 2000
- Coping with loss.Family Practice, 1999
- Comparison of Palliative Care Needs of English- and Non-English-Speaking PatientsJournal of Palliative Care, 1999
- Palliative Care: How can We Meet the Needs of Our Multicultural Communities?Journal of Palliative Care, 1998
- Palliative Care and Terminal Care of ChildrenChild and Adolescent Psychiatric Clinics of North America, 1997
- Hospice and palliative care in the UK 1994-5, including a summary of trends 1990-5Palliative Medicine, 1997
- Facilitating the care of terminally ill childrenJournal of Pain and Symptom Management, 1996
- Grief: The social context of private feelingsPublished by Cambridge University Press (CUP) ,1993
- Patterns of postoperative analgesic use with adults and children following cardiac surgeryPain, 1983