This project created a protocol outlining the needs of patients, families, and staff in providing a pain-free, dignified, family- and staff-supported death for those newborns who cannot benefit from intensive, life-extending, technological support. Physicians have reported a need for ethical guidelines in caring for those newborns who may need to have technological support withheld or withdrawn. This protocol is intended to assist providers who may lack formal ethical or clinical training for withdrawing or withholding life-sustaining interventions from dying newborns. It is further intended to allow for consistency in the clinical approach to caring for newborns with life-limiting conditions, and to provide a model useful for teaching medical and nursing trainees.
Using the Internet and an e-mail–based response network, an international Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build consensus on end-of-life issues. The data underwent four rounds with 95% retention of the 101 participants over an 18-month period. Participants were neonatologists, obstetricians, parents, nurses, ethicists, hospice specialists, social scientists, lawyers, policy makers, a child life specialist, funeral home owner, cultural care expert, neonatal pharmacist, and others. Data collection also included location of and synthesis of 14'published and nonpublished palliative care and end-of-life protocols.
This is a preview of subscription content, access via your institution