Objective To review the experience of the practice of withdrawal of artificial nutrition and hydration (WANH) and to describe parental perspectives on the process.
Design A retrospective chart review and parental survey.
Setting Tertiary level Neonatal Intensive Care Unit (NICU).
Participants Infants who had WANH after withdrawal of other life-sustaining treatment, and their parents.
Main outcome measure Parental perspectives on the care and process were obtained through a survey administered 1 to 4 years after the death of their infant.
Results Fifteen cases (5.5% of all mortality and 0.5% of all admissions) of WANH were identified, and 10 parents participated in the survey. The median (range) gestational age was 40 weeks (31–42) and birth weight was 3409 g (2000–4640). The reason for WANH was predicted poor outcome due to severe neurological injury/disease. The median (range) time between WANH and death was 16 days (2–37). All parents reported favourable perceptions of preparation, support, communication and care. Seven parents reported concerns regarding pain experienced by their infant. Parents reported the ability to spend quality time, creating tangible memories and the virtues and professional qualities of the caregivers to be helpful, but identified that consistency and continuity of care could be improved.
Conclusion Within the spectrum of palliative care in neonates, WANH can be a tenable, justifiable and humane practice in the NICU.
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Contributors Jonathan Hellmann initiated the concept, wrote the protocol, planned and analysed data and wrote the first draft and critical revision of this manuscript. Constance Williams was involved in the concept, performed chart review, analysed qualitative data and provided input in critical revision of this manuscript. Lori Ives-Baine was involved in the design of the study, collected data, contacted families and provided backup support to families and critically revised this manuscript. Prakesh Shah was involved in the design, protocol, analysis of data and critical revision of the final document.
Competing interests None.
Ethics approval Research Ethics Board at the Hospital for Sick Children, Toronto.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Additional data are available by contacting Dr Jonathan Hellmann (corresponding author).