Critical care decisions in fetal and neonatal medicine: ethical issues
Information, education and training
46 Good decision making in critical care depends on the quality and comprehensibility of the information available to parents and how that information is conveyed by healthcare professionals. Parents need timely provision of accessible information, available in different languages and formats to meet the needs of different individuals. Where appropriate, this material should be provided as part of the individually based pathway of care for a pregnant woman. It should include both national and local statistics and be updated regularly. Written information must be accompanied by face to face discussion and explanation (paragraphs 4.24, 5.36 and 9.51).
47 Standards for the provision of this information need to be developed and implemented by the relevant organisations (for example, the RCOG, RCPCH, BAPM, RCN, NNA and RCM). The Working Party proposes that these organisations should liaise with groups which advocate for parents (for example, the National Childbirth Trust (NCT), BLISS – The premature baby charity and the Stillbirth and Neonatal Death Charity (SANDS), and that the Healthcare Commission should monitor delivery of the information to measurable standards. We recommend that discussions would benefit from the involvement of families and others who have direct experience of continuing specialist care at home after leaving hospital, or of what disability can mean for older children and their families. Additionally, the value and feasibility should be explored of making written or audiovisual guides available for local use by fetal medicine and neonatal intensive care units (paragraphs 9.52–9.53).
48 Misunderstandings about the role of the criminal law in relation to withholding and with- drawing treatment are not uncommon. Similarly, healthcare professionals are not always well acquainted with broader ethical debates outside the general guidance offered by their professional organisations. We recommend that the RCOG, RCPCH, RCM, RCN and the NNA should encourage medical and nursing schools to develop undergraduate and postgraduate educational programmes in the law and ethics relating to fetal and neonatal medicine, as appropriate (paragraph 9.54).