Critical care decisions in fetal and neonatal medicine: ethical issues
Critical care decisions for babies needing intensive care
31 After an initial decision to institute intensive care has been taken, there may subsequently come a point when parents and doctors begin discussing whether intensive care for the baby should be continued or be withdrawn. Such a point may be:
- when intensive care is proving futile, in that death appears inevitable;
- when the baby has suffered a severe brain injury and for whom there appears to a very high risk of severe disability as he or she grows up; or
- when the baby is discovered to have a serious malformation, dysplasia (abnormal development of tissues or organs) or a genetic condition with a serious outcome for which there is no treatment.
Once a decision has been made to withhold or withdraw treatment for a baby, or where there are no appropriate treatments, palliative care should be provided. However, healthcare professionals working in neonatal intensive care do not receive mandatory training in palliative care, and access to teams who specialise in palliative care is extremely limited.
32 The Working Party proposes that the NHS, supported by the UK Departments of Health and in conjunction with the relevant professional bodies (for example the RCPCH, BAPM, RCN, Neonatal Nurses Association (NNA) and RCM), should train all neonatologists and neonatology nurses in the basic principles of palliative care so that they are applied when a need is identified. To complement this provision, the NHS should facilitate access to specialist advice in palliative care for complex cases in the same way that specialists would be consulted on complex problems in other areas of medicine (paragraph 9.23).
33 We conclude that oral nutrition and hydration should only be withheld from a baby when it is clear that providing it causes discomfort and pain, such as when a baby has little functioning bowel due to disease or when death is imminent. The decision should only be taken after careful assessment and as part of a planned programme of palliative care designed to minimise suffering and make the baby as comfortable as possible (paragraph 9.24).
34 We understand that current clinical practice in terms of detection of pain and provision of pain relief varies widely across the UK. The Working Party believes that the reduction of pain and stress for babies in neonatal units is important and suggests to the UK Departments of Health, the Healthcare Commission and relevant professional bodies that measures need to be taken to improve clinical practice through the application of current knowledge about assessment, prevention and treatment of pain in babies receiving intensive care.6 The UK Departments of Health and research funding bodies are encouraged to support high quality research to understand the potential developmental effects of neonatal pain and stress as well as its treatments (paragraph 9.25).
Footnotes
6 We note that the National Service Framework (NSF) for Children, Young People and Maternity Servicespublishes pain management standards that include babies in neonatal units.