Press Release
Independent ethics body proposes week-by-week guidelines on treating premature babies
The Nuffield Council on Bioethics has set out guidelines on when to give intensive care to extremely premature babies. Advice for parents and doctors is provided, on a week-by-week basis, for treating babies born before 22 weeks up to those born after 25 weeks.
It is extremely rare for babies born before 22 weeks to survive. The Council recommends that intensive care should not be given to these babies at the current time, except as part of a pre-approved research study.
Only about 1% of babies born between 22 and 23 weeks survive to leave hospital. The Council recommends that normal practice should be not to give intensive care at this age, unless parents request it after a thorough discussion of the risks and if the doctors agree.
“Natural instincts are to try to save all babies, even if the baby’s chances of survival are low,” said Professor Margaret Brazier, who chaired the committee that produced the guidelines. “However, we don’t think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable.”
It is very difficult to predict whether babies born between 23 and 24 weeks will live, die, be healthy or have disabilities later on in life. Because of this uncertainty, the Council recommends that parents, after a thorough discussion with the healthcare team, should have the final say in whether intensive care is given.
For babies born between 24 and 25 weeks, normal practice should be to give intensive care, unless the parents and the doctors agree that there is no hope of survival or if the level of suffering outweighs the baby’s interest in continuing to live.
Over 25 weeks of gestation, babies have a sufficiently high chance of surviving and low risk of developing severe disability. Intensive care should normally be given.
“We believe that the guidelines will help parents and doctors to make decisions in these very traumatic situations,” said Professor Brazier.
The number of extremely premature babies being born has been increasing since the 1980s. The age at which premature babies can survive has been falling by approximately one week every decade over the last 40 years. However, most will still die. The EPICure study showed that the percentage of babies born alive in 1995 between 22 to 23 weeks who survived to leave hospital was 1%; at 23 to 24 weeks it was 11%; at 24 to 25 weeks, 26%; and 25 to 26 weeks, 44%. Survival before 22 weeks is very rare. More recent data indicate that survival rates are higher now, although the EPICure study still provides the only UK nationwide data available.
If an extremely premature baby survives to leave hospital, he or she may grow up with disabilities. In the EPICure study, of the babies born between 23 to 24 weeks who survived, about two thirds had moderate or severe disabilities. By 25 to 26 weeks, two thirds had no or mild disabilities. However, children who have disabilities due to prematurity represent an extremely small proportion of the total number of children with disabilities in the UK.
The Nuffield Council has also published today other recommendations in the area of fetal and neonatal medicine, including:
• Active ending of life
The Council has concluded that the active ending of life of newborn babies should not be allowed, no matter how serious their condition. The professional obligation of doctors is to preserve life where they can. If doctors were to be permitted actively to end the lives of seriously ill newborn babies, there is a risk that the relationship between parents and doctors would be negatively affected. It would also be very difficult to identify an upper age limit beyond which actively ending life would not be allowed.
• Withdrawing treatment and 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. Once a decision has been made not to give or to cease giving life-saving treatment to a newborn baby, palliative care should be given. This involves relieving pain and making the baby as comfortable as possible until he or she dies, and providing support for the family. Knowledge and use of these techniques varies across the UK. The NHS should train all professionals working in neonatal medicine in palliative care.
• Support for children who survive and their families
The availability of support services for disabled children and adults, and their families, varies across the UK. There is an inconsistency in trying very hard to save the lives of the very young without providing enough care and support for the children who survive. The Council urges the Government to accept further responsibility for ensuring that disabled children and their families receive equal access to high quality services as advocated in the National Service Framework for Children, Young People and Maternity Services.
• Resource considerations
No healthcare system provides unlimited resources and priorities have to be set. At the local level, the Council 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, which should be based on the best interests of the babies concerned. At the national level, there is a need for a much broader independent analysis of the use of NHS resources.
• Avoiding the courts
The number of court cases where parents and doctors can’t agree on the treatment of a premature or very ill baby seems to be increasing. This can be a very stressful experience for all concerned. Getting a second medical opinion, involving a facilitator from a clinical ethics committee or professional mediation may all help to avoid the high personal and financial costs of a court case.
• Data collection and information
We recommend that, when faced with a decision about the care of their baby, parents must be provided with accessible information about the nature of any future disability. For this, it is crucial that more data are collected about the health of premature and seriously ill babies as they grow up, and that this information is linked to subsequent medical and educational records.
• Fetal medicine
Difficult decisions have to be made when a problem is identified with the health of a fetus during pregnancy. The Abortion Act 1967 permits termination of pregnancy after 24 weeks if a fetus is at “substantial risk of serious handicap”. For terminations at 22 weeks or later, feticide is usually carried out to ensure that a baby is not born alive. When a woman doesn’t want feticide, some doctors may be concerned because they believe that they are legally obliged to try to save a baby if he or she shows signs of life when born. However, there is no legal obligation to give treatment if after delivery the baby has no hope of survival or if the level of suffering outweighs their interest in continuing to live. The Council recommends that a code of practice should be developed to clarify what the law does and does not require doctors to do.
The guidelines and recommendations are published in a Report by the Council called Critical care decisions in fetal and neonatal medicine: ethical issues. The Report was produced by a committee which included neonatologists, an obstetrician, a children’s nurse, philosophers, lawyers, a health economist, and individuals who have worked with families of extremely premature babies and disabled children. Their discussions were informed by a wider consultation, peer review and a number of fact-finding meetings. These included visits to neonatal units around the country and a school for children with learning difficulties, and meetings with parents and healthcare managers in the UK, and with experts in France and The Netherlands.
NOTES TO EDITORS
For further information contact:
Catherine Joynson
Communications & External Affairs Manager
Nuffield Council on Bioethics
28 Bedford Square
London WC1B 3JS
Tel: +44 (0)20 7681 9619
Mob: +44 (0)7747 635863
Fax: +44 (0)20 7637 1712
Email: cjoynson@nuffieldbioethics.org
1. Copies of the full Report will be available to download on 16th November 2006 from the Council website: www.nuffieldbioethics.org. For a printed copy please e-mail: bioethics@nuffieldbioethics.org.
2. MEDIA BRIEFING
What? Report launch: Critical care decisions in fetal and neonatal medicine: ethical issues
When? Wednesday 15 November 2006, 10.30-11.30
(under strict embargo until 00:01 GMT 16 November)
Where? Science Media Centre, 21 Albemarle St, W1S 4BS
Advances in medicine mean that families and health professionals can be faced with very difficult decisions about the care of extremely premature or seriously ill babies, relating to:
• the care of a fetus and mother prior to birth;
• whether to resuscitate a newborn baby, and admit him or her to neonatal intensive care; and
• whether to continue invasive intensive care or replace active treatment with palliative care.
These dilemmas are complex, emotionally demanding and may have lifelong effects. The Nuffield Council on Bioethics will be publishing a Report, Critical care decisions in fetal and neonatal medicine: ethical issues, which examines the ethical, social and legal issues raised. The Report includes guidelines to help parents and professionals make decisions about giving intensive care to extremely premature babies.
Members of the Report’s Working Party will brief the media, at the Science Media Centre, on their conclusions and recommendations in advance of the public launch. This briefing is under strict embargo until 00:01 am Thursday 16th November.
The members of the Working Party presenting the conclusions of the Report will be:
Professor Margaret Brazier
Chair of the Working Party and Professor of Law, University of Manchester
Professor Andrew Whitelaw
Professor of Neonatal Medicine, University of Bristol Medical School, Bristol
Ms Bonnie Green
Formerly Head of External Relations, BLISS – the premature baby charity (Bonnie Green will be representing the Working Party at the briefing. Comments from BLISS should be sought directly from its press office. Contact: Alex Holderway, Tel: 020 7378 1122)
Professor Linda Franck
Professor and Chair of Children’s Nursing Research, Institute of Child Health, University College London and Great Ormond Street Hospital for Children NHS Trust
Embargoed copies of the Report will be available at the briefing. To attend, for more information, or to arrange an interview, please contact: Catherine Joynson, Tel: 020 7681 9619, Mobile: 07747 635863, Email: cjoynson@nuffieldbioethics.org
3. REPORT LAUNCH
Thursday 16th November 2006, 10.00–12.30
Institute of Physics, 76 Portland Place, London W1B 1NT
This seminar will provide an opportunity to discuss the principal conclusions and recommendations of the Report with members of the Working Party. The speakers will include:
Professor Margaret Brazier
Chair of the Working Party and Professor of Law, University of Manchester
Professor David Archard
Professor of Philosophy and Public Policy, University of Lancaster
Professor Neil Marlow
Professor of Neonatal Medicine, Queen’s Medical Centre, Nottingham
Bonnie Green
Head of External Relations until January 2006, BLISS – the premature baby charity
Professor Linda Franck
Professor and Chair of Children’s Nursing Research, Institute of Child Health, University College London and Great Ormond Street Hospital for Children NHS Trust
Joining the speakers for the discussion will be other members of the Working Party:
• Dr Philippa Russell, Policy Adviser for Disability, National Children’s Bureau
• Professor Andrew Whitelaw, Professor of Neonatal Medicine, University of Bristol Medical School, Bristol
• Professor Charles Rodeck, Department of Obstetrics and Gynaecology, University College London
• Anne Winyard, Leigh, Day & Company Solicitors
• Professor Catherine Peckham, Institute of Child Health, University College London
• Dr Stavros Petrou, Health Economist, National Perinatal Epidemiology Unit (NPEU), University of Oxford
Copies of the Report will be available at the seminar. Admission is free but places should be reserved in advance. If you would like to attend, or for more information, please send your name, address, affiliation (if applicable) and email address to:
Email: bioethics@nuffieldbioethics.org
Tel: +44 (0)20 7681 9619
Fax: +44 (0)20 7637 1712
www.nuffieldbioethics.org
4. An article outlining some of the recommendations in the Report will be published on 16th November in The Scientist (M. Brazier (2006) How to treat premature infants The Scientist 20(12):22-23, December).
5. The Nuffield Council on Bioethics
The Nuffield Council on Bioethics is an independent body which examines the ethical issues raised by developments in medicine and biology. Established in 1991, it is funded by The Nuffield Foundation, the Medical Research Council and The Wellcome Trust. www.nuffieldbioethics.org
It is extremely rare for babies born before 22 weeks to survive. The Council recommends that intensive care should not be given to these babies at the current time, except as part of a pre-approved research study.
Only about 1% of babies born between 22 and 23 weeks survive to leave hospital. The Council recommends that normal practice should be not to give intensive care at this age, unless parents request it after a thorough discussion of the risks and if the doctors agree.
“Natural instincts are to try to save all babies, even if the baby’s chances of survival are low,” said Professor Margaret Brazier, who chaired the committee that produced the guidelines. “However, we don’t think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable.”
It is very difficult to predict whether babies born between 23 and 24 weeks will live, die, be healthy or have disabilities later on in life. Because of this uncertainty, the Council recommends that parents, after a thorough discussion with the healthcare team, should have the final say in whether intensive care is given.
For babies born between 24 and 25 weeks, normal practice should be to give intensive care, unless the parents and the doctors agree that there is no hope of survival or if the level of suffering outweighs the baby’s interest in continuing to live.
Over 25 weeks of gestation, babies have a sufficiently high chance of surviving and low risk of developing severe disability. Intensive care should normally be given.
“We believe that the guidelines will help parents and doctors to make decisions in these very traumatic situations,” said Professor Brazier.
The number of extremely premature babies being born has been increasing since the 1980s. The age at which premature babies can survive has been falling by approximately one week every decade over the last 40 years. However, most will still die. The EPICure study showed that the percentage of babies born alive in 1995 between 22 to 23 weeks who survived to leave hospital was 1%; at 23 to 24 weeks it was 11%; at 24 to 25 weeks, 26%; and 25 to 26 weeks, 44%. Survival before 22 weeks is very rare. More recent data indicate that survival rates are higher now, although the EPICure study still provides the only UK nationwide data available.
If an extremely premature baby survives to leave hospital, he or she may grow up with disabilities. In the EPICure study, of the babies born between 23 to 24 weeks who survived, about two thirds had moderate or severe disabilities. By 25 to 26 weeks, two thirds had no or mild disabilities. However, children who have disabilities due to prematurity represent an extremely small proportion of the total number of children with disabilities in the UK.
The Nuffield Council has also published today other recommendations in the area of fetal and neonatal medicine, including:
• Active ending of life
The Council has concluded that the active ending of life of newborn babies should not be allowed, no matter how serious their condition. The professional obligation of doctors is to preserve life where they can. If doctors were to be permitted actively to end the lives of seriously ill newborn babies, there is a risk that the relationship between parents and doctors would be negatively affected. It would also be very difficult to identify an upper age limit beyond which actively ending life would not be allowed.
• Withdrawing treatment and 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. Once a decision has been made not to give or to cease giving life-saving treatment to a newborn baby, palliative care should be given. This involves relieving pain and making the baby as comfortable as possible until he or she dies, and providing support for the family. Knowledge and use of these techniques varies across the UK. The NHS should train all professionals working in neonatal medicine in palliative care.
• Support for children who survive and their families
The availability of support services for disabled children and adults, and their families, varies across the UK. There is an inconsistency in trying very hard to save the lives of the very young without providing enough care and support for the children who survive. The Council urges the Government to accept further responsibility for ensuring that disabled children and their families receive equal access to high quality services as advocated in the National Service Framework for Children, Young People and Maternity Services.
• Resource considerations
No healthcare system provides unlimited resources and priorities have to be set. At the local level, the Council 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, which should be based on the best interests of the babies concerned. At the national level, there is a need for a much broader independent analysis of the use of NHS resources.
• Avoiding the courts
The number of court cases where parents and doctors can’t agree on the treatment of a premature or very ill baby seems to be increasing. This can be a very stressful experience for all concerned. Getting a second medical opinion, involving a facilitator from a clinical ethics committee or professional mediation may all help to avoid the high personal and financial costs of a court case.
• Data collection and information
We recommend that, when faced with a decision about the care of their baby, parents must be provided with accessible information about the nature of any future disability. For this, it is crucial that more data are collected about the health of premature and seriously ill babies as they grow up, and that this information is linked to subsequent medical and educational records.
• Fetal medicine
Difficult decisions have to be made when a problem is identified with the health of a fetus during pregnancy. The Abortion Act 1967 permits termination of pregnancy after 24 weeks if a fetus is at “substantial risk of serious handicap”. For terminations at 22 weeks or later, feticide is usually carried out to ensure that a baby is not born alive. When a woman doesn’t want feticide, some doctors may be concerned because they believe that they are legally obliged to try to save a baby if he or she shows signs of life when born. However, there is no legal obligation to give treatment if after delivery the baby has no hope of survival or if the level of suffering outweighs their interest in continuing to live. The Council recommends that a code of practice should be developed to clarify what the law does and does not require doctors to do.
The guidelines and recommendations are published in a Report by the Council called Critical care decisions in fetal and neonatal medicine: ethical issues. The Report was produced by a committee which included neonatologists, an obstetrician, a children’s nurse, philosophers, lawyers, a health economist, and individuals who have worked with families of extremely premature babies and disabled children. Their discussions were informed by a wider consultation, peer review and a number of fact-finding meetings. These included visits to neonatal units around the country and a school for children with learning difficulties, and meetings with parents and healthcare managers in the UK, and with experts in France and The Netherlands.
NOTES TO EDITORS
For further information contact:
Catherine Joynson
Communications & External Affairs Manager
Nuffield Council on Bioethics
28 Bedford Square
London WC1B 3JS
Tel: +44 (0)20 7681 9619
Mob: +44 (0)7747 635863
Fax: +44 (0)20 7637 1712
Email: cjoynson@nuffieldbioethics.org
1. Copies of the full Report will be available to download on 16th November 2006 from the Council website: www.nuffieldbioethics.org. For a printed copy please e-mail: bioethics@nuffieldbioethics.org.
2. MEDIA BRIEFING
What? Report launch: Critical care decisions in fetal and neonatal medicine: ethical issues
When? Wednesday 15 November 2006, 10.30-11.30
(under strict embargo until 00:01 GMT 16 November)
Where? Science Media Centre, 21 Albemarle St, W1S 4BS
Advances in medicine mean that families and health professionals can be faced with very difficult decisions about the care of extremely premature or seriously ill babies, relating to:
• the care of a fetus and mother prior to birth;
• whether to resuscitate a newborn baby, and admit him or her to neonatal intensive care; and
• whether to continue invasive intensive care or replace active treatment with palliative care.
These dilemmas are complex, emotionally demanding and may have lifelong effects. The Nuffield Council on Bioethics will be publishing a Report, Critical care decisions in fetal and neonatal medicine: ethical issues, which examines the ethical, social and legal issues raised. The Report includes guidelines to help parents and professionals make decisions about giving intensive care to extremely premature babies.
Members of the Report’s Working Party will brief the media, at the Science Media Centre, on their conclusions and recommendations in advance of the public launch. This briefing is under strict embargo until 00:01 am Thursday 16th November.
The members of the Working Party presenting the conclusions of the Report will be:
Professor Margaret Brazier
Chair of the Working Party and Professor of Law, University of Manchester
Professor Andrew Whitelaw
Professor of Neonatal Medicine, University of Bristol Medical School, Bristol
Ms Bonnie Green
Formerly Head of External Relations, BLISS – the premature baby charity (Bonnie Green will be representing the Working Party at the briefing. Comments from BLISS should be sought directly from its press office. Contact: Alex Holderway, Tel: 020 7378 1122)
Professor Linda Franck
Professor and Chair of Children’s Nursing Research, Institute of Child Health, University College London and Great Ormond Street Hospital for Children NHS Trust
Embargoed copies of the Report will be available at the briefing. To attend, for more information, or to arrange an interview, please contact: Catherine Joynson, Tel: 020 7681 9619, Mobile: 07747 635863, Email: cjoynson@nuffieldbioethics.org
3. REPORT LAUNCH
Thursday 16th November 2006, 10.00–12.30
Institute of Physics, 76 Portland Place, London W1B 1NT
This seminar will provide an opportunity to discuss the principal conclusions and recommendations of the Report with members of the Working Party. The speakers will include:
Professor Margaret Brazier
Chair of the Working Party and Professor of Law, University of Manchester
Professor David Archard
Professor of Philosophy and Public Policy, University of Lancaster
Professor Neil Marlow
Professor of Neonatal Medicine, Queen’s Medical Centre, Nottingham
Bonnie Green
Head of External Relations until January 2006, BLISS – the premature baby charity
Professor Linda Franck
Professor and Chair of Children’s Nursing Research, Institute of Child Health, University College London and Great Ormond Street Hospital for Children NHS Trust
Joining the speakers for the discussion will be other members of the Working Party:
• Dr Philippa Russell, Policy Adviser for Disability, National Children’s Bureau
• Professor Andrew Whitelaw, Professor of Neonatal Medicine, University of Bristol Medical School, Bristol
• Professor Charles Rodeck, Department of Obstetrics and Gynaecology, University College London
• Anne Winyard, Leigh, Day & Company Solicitors
• Professor Catherine Peckham, Institute of Child Health, University College London
• Dr Stavros Petrou, Health Economist, National Perinatal Epidemiology Unit (NPEU), University of Oxford
Copies of the Report will be available at the seminar. Admission is free but places should be reserved in advance. If you would like to attend, or for more information, please send your name, address, affiliation (if applicable) and email address to:
Email: bioethics@nuffieldbioethics.org
Tel: +44 (0)20 7681 9619
Fax: +44 (0)20 7637 1712
www.nuffieldbioethics.org
4. An article outlining some of the recommendations in the Report will be published on 16th November in The Scientist (M. Brazier (2006) How to treat premature infants The Scientist 20(12):22-23, December).
5. The Nuffield Council on Bioethics
The Nuffield Council on Bioethics is an independent body which examines the ethical issues raised by developments in medicine and biology. Established in 1991, it is funded by The Nuffield Foundation, the Medical Research Council and The Wellcome Trust. www.nuffieldbioethics.org