Attitudes of Swiss Neonatal Caregivers - Withdrawing or Witholding Nutrition in Palliative Care
M. Hendriks1, L. Pfalzgraf1, J. C. Fauchère1, D. Gubler1 (1Zürich)
The verdict that one’s child may be critically ill, extremely premature, or born with a life-threatening congenital anomaly represents a challenging time for parents. In such burdensome end-of-life situations, parents and neonatal healthcare professionals (HCPs) are faced with a series of ethical questions on how to proceed with life-sustaining measures. One of these questions revolves around withdrawing artificial nutrition and hydration. However, few studies exist on how HCPs experience this practice.
The aim of this mixed methods study is 1) to explore the content of internal hospital documents (guidelines, concepts or recommendations) of nine Swiss perinatal centres on withdrawing/withholding artificial nutrition and hydration in palliative situations, 2) to assess the attitudes and values of HCPs in clinical practice by means of a cross-sectional survey and qualitative interviews.
We present the results from a documentation analysis (n=23), a cross-sectional survey (n=436) and additional qualitative interviews (n=8).
A number of 23 documents were analysed. Nutrition was mentioned in the documents of three centres from which two stated, that it was justifiable to withdraw or withhold nutrition in a palliative situation. In the survey, a quarter of HCPs (27%) stated that in their institution it was tenable to withdraw nutrition in the form of IV-fluids, gastric tube and gastrostoma, whereas 47% stated it was untenable and 27% did not know. In pearson’s chi-squared tests it showed that significantly more physicians (46%) found it tenable than nurses (20%) to withhold or withdraw nutrition for a seriously ill newborn with a palliative diagnosis. In the content analysis of our interviews with neonatal physicians (n=3) and nurses (n=5) we found a similar tendency. Nurses, as opposed to physicians are more hesistant to withdraw or withold nutrition as they conceive of nutrition as a basic human need. All HCPs recognized that this topic is relevant but only in rare cases – as most neonates die as a result of another treatment being withheld.
Questions surrounding withdrawing nutrition are important and are considered to be a highly individual and delicate matter. An indvidiualized approach that takes into consideration the infant, the family and the teams observations is essential. Especially nurses considered nutrition to be part of basic care and not a medical intervention. This study has shown that HCPs express the need for further guidance on the topic.