Home and Community Care Digest
Methods: Self-report questionnaires were administered to providers working at an academic children's hospital in the western United States who spent more than 50% of their working hours providing care to pediatric patients. Provider subcategories included nurses, physicians, ICU staff, and non-ICU staff. The questionnaire identified and targeted 26 possible barriers to pediatric palliative care.
Findings: A total of 117 nurses and 81 physicians responded to the questionnaire (median age 37 years; 77% female). The median work experience of respondents was 7 to 9 years. Almost 60% of respondents reported that they had cared for 1 to 5 pediatric patients who had died in the past year, while one-third of respondents reported caring for more than 6 children who had died. Respondents reported that the most frequent barriers to pediatric palliative care were uncertain prognosis (55%), family not being ready to acknowledge the incurable condition (51%), language issues (47%), and time constraints (46%). Other commonly reported barriers included differences in treatment preferences between families and providers, and insufficient education among providers in pain and palliative care. The most commonly perceived barrier, uncertain prognosis, likely exists because of the difficulty in accurately predicting an overall prognosis or disease trajectory in children suffering from a diverse range of life-limiting conditions.
Compared to nurses, physicians more often perceived cultural differences and conflict among family and staff members about treatment goals as being significant barriers. By contrast, nurses more often perceived that the absence of an ethics committee interfered with the provision of optimal care. Finally, non-ICU staff reported that time constraints and staff shortages were key barriers to pediatric palliative care.
Conclusions: An uncertain prognosis may cause parents to pursue curative treatments until the providers are certain of the child's imminent demise, which often results in palliative care being administered too late in the course of the disease. To overcome this barrier, palliative and curative care should be integrated with early and repeated discussions of palliative care options to help parents cope and make difficult decisions. An uncertain prognosis should be considered an opportunity to discuss palliative care options rather than delaying care. Consideration should be taken so that any decisions regarding treatment(s) should not preclude or limit access to other health care resources. Provider education on pediatric palliative care and appropriate communication mechanisms with parents may help to overcome some of the perceived barriers; however, providers must realize that uncertainty may be unavoidable and inherent in pediatric palliative care.
Reference: Davies, B., Sehring, S.A., Partridge, C., Cooper, B.A., Hughes, A., Philp, J.C., Amidi-Nouri, A., Kramer, R.F. Barriers to Palliative Care for Children: Perceptions of Pediatric Health Care Providers. Pediatrics. 2008; 121 (2): 282-288.
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