Baby care: new ethical and legal guidelines on the care of extremely premature and sick new-borns
Our examination of ethical and issues around the legal status of extremely premature babies has contributed to new guidelines regarding their care.
Our studies around the ethics of ‘22-24 week’ babies developed recommendations regarding their care, resuscitation and parental decisions. Our advice has been adopted in the clinical practice guidelines of several professional bodies.
In 2004 Professor Margot Brazier was invited to chair a Nuffield Council on Bioethics (NCOB) working party to draw up policy recommendations on the care of extremely premature and/or sick neonates.
Our extensive research moulded the report and shaped its key recommendations, with advice on the definition of ‘best interests’ and suggested care pathways for so-called 22-24 week babies.
Since its publication, the recommendations have formed the basis of a joint clinical guidance document prepared by the British Association of Perinatal Medicine, the Royal College of Paediatrics and Child Health, the Royal College of Obstetricians and Gynaecologists, the Royal College of Midwifery, the Royal College of Medicine and the Royal College of Nursing. The best practice outlined in this document remains in place today.
The progress in neonatal medicine means doctors are able to resuscitate babies born at ever earlier stages in gestation, and to keep alive babies with very severe impairments. The researchers examined how doctors could make decisions in keeping with key legal and ethical principles. They also questioned the roles of parents and doctors in decision-making and looked at ways to improve communication between parents and professionals to avoid legal conflict.
- The neonate (unlike the foetus) once ‘born alive’ does and should enjoy full legal status.
- The lack of clarity about the legal test of ‘born alive’ may need Parliamentary intervention.
- The legal test of ‘best interests’ needs clarification, especially to address problems of parental and sibling interests.
- Decisions about resuscitation and the withdrawal of intensive care should be made where possible by parents and doctors together.
- Parental views should carry great weight, as it is the parents who will have to care for the child should s/he survive with significant disabilities.
- Much greater emphasis should be placed on communication between professionals and parents as many conflicts that end up in the courts derive from communication failures.
- Simple and accessible guidelines are needed to assist decision making.
- Professor Margot Brazier
- Dr Emma Cave