15 November 2006
The Nuffield Council on Bioethics
examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust.
Leigh Day & Co partner Anne Winyard
is a member of the Council’s working party that has been looking at the difficult questions surrounding the treatment of very premature or sick babies. The working party examined the ethical, social, legal and economic issues involved in such critical care decisions. Members of the group included doctors, a children’s nurse, philosophers, lawyers, a health economist, and individuals who have worked with families of extremely premature babies and disabled children.
The working party has now published
its conclusions and has proposed the first week-by-week guidelines on when to give intensive care to extremely premature babies. The Nuffield Council on Bioethics recommends that the relevant professional bodies – in consultation with groups representing parents - should consider developing guidelines to help doctors and parents make decisions about whether to resuscitate a newborn baby, and admit him or her to neonatal intensive care; and whether to institute further treatment after birth, or to withhold or withdraw the baby’s treatment.
Anne comments, “These decisions are unbearably difficult and emotionally charged for both parents and doctors. Doctors often cannot say with any certainty what the outcome for an individual baby is going to be. For parents to be active partners in the decision-making process – they need accessible information about survival rates and the risk of any future disability. We hope our recommendations will help parents and doctors with the process of decision-making in these intensely demanding situations”.
The report proposes week-by-week guidelines on when to give intensive care to extremely premature babies concluding that it is not always right to put a baby through the stress and pain of invasive treament if the baby is not likely to get any better and death is inevitable.
The outcome for babies born between 22 and 26 weeks gestation (a full term pregnancy is 40 weeks) is often uncertain, making decisions about treatment very difficult. Only about 1% of babies born at 22-23 weeks gestation survive to leave hospital. The suggested week-by-week guidelines are:
- under 22 weeks, treatment experimental and should only be given within a pre-approved research study
- 22-23 weeks, no resuscitation unless parents insist and doctors agree it is in the baby’s best interests
- 23-24 weeks, precedence to wishes of parents
- 24-25 weeks, intensive care would normally be given, unless parents and doctors agree not in baby’s best interests
- over 25 weeks, intensive care normally given. The Council has produced a number of additional guidelines on related subjects.
Active ending of life
The active ending of life of newborn babies should not be allowed, no matter how seious their condition.
Withdrawing treatment/palliative care
The Council endorses current UK medical practice and law that allow decisions to be made not to start or to withdraw treatment in cases where it would be futile or cause intolerable suffering for no benefit. Palliative care - focussing on pain relief and making the baby as comfortable as possible until he or she dies – should then be given.
Support for children who survive
About two-thirds of surviving babies born at 23-24 weeks gestation have moderate or severe disabilties; though those born premature are a very small proportion of the total number of children with disabilities. The Council urges the Government to accept further responsibility for ensuring that disabled children and their families receive equal access to high quality support services.
Data collection and information
Parents need information about the likely degree of disability their premature or sick baby will experience before making decisions about care. The report recommends that more data are collected about the health of premature and seriously ill babies as they grow older.
Avoiding the courts
Lawyers at Leigh Day & Co have first-hand experience of representing parents who do not agree with decisions made by doctors about their children’s care. The personal and financial costs of going to court to resolve such arguments is considerable and should be avoided if possible. The report suggests that getting a second medical opinion or involving a clinical ethics committee or professional mediation may help to avoid a court case.
The resources of the NHS are not limitless. At the national level, there is a need for a much broader independent analysis of the use of NHS resources. But at hospital level, the report recommends that doctors should continue to do the best possible for the baby in front of them. They should be aware of, but not driven by, the resource implications of their decisions.
The Council recommends that a code of practice should be developed to clarify what the law does and does not require doctors to do with regard to feticide in cases of termination at or after 22 weeks.
Parents with very sick or premature babies can face incredibly difficult and important questions about a baby’s treatment and care. The guidelines proposed by the Nuffield Council on Bioethics are to be welcomed as a step to help parents and doctors jointly make decisions that are best for each baby. The report recognises the sanctity of life, but not that of life at any cost.
You can download the report Critical care decisions in fetal and neonatal medicine: ethical issues here
For further information you can contact: Nuffield Council on Bioethics 28 Bedford Square, London WC1B 3JS
Tel: + 44 (0)20 7681 9619 Fax: + 44 (0)20 7637 1712 e-mail: email@example.com
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