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Submission from CMF to the Nuffield Council on Bioethics' Working Party on The Ethics of Prolonging Life in Fetuses and the Newborn

Published: 9th June 2005

Introduction

The Christian Medical Fellowship (CMF) is an interdenominational organisation with more than 4,500 British doctors as members. All are Christians who desire their professional and personal lives to be governed by the Christian faith as revealed in the Bible. Members practise in all branches of the profession, and through the International Christian Medical and Dental Association are linked with like-minded colleagues in over 100 other countries.

CMF regularly makes submissions on ethical and professional matters to Government committees and to other official bodies. All our submissions are available on our website at www.cmf.org.uk/ethics/submissions. With particular relevance to the current submission are:

• Choosing the Future (Human Genetics Commission)[1]
• Withholding and withdrawing life-prolonging treatments: good practice in decision-making (General Medical Council)[2]

We are very grateful for this opportunity to respond to the Council's consultation document on 'The ethics of prolonging life in fetuses and newborns'. We regard this as a very important issue, with relevance beyond individual treatment decisions to questions of how we value and react to the weakest and most vulnerable members of our society.

We would be very willing to assist the Council further by providing expert witnesses from within our membership either to give oral evidence or to do further literature research especially in the fields of neonatal paediatrics, epidemiology and medical ethics.

Contents of Submission

General observations

Background

Accuracy of prediction of outcome in fetal and neonatal medicine
Danger of misinterpretation of epidemiological data from long-term outcome studies
Perpetuation of negative stereotypes of disability
The validity and implications of the use of 'Quality of Life' criteria
Causes of prematurity and disability - preventable factors
The title of the document

Answers to the consultation questions

Section 1: Clinical practice and future developments (qu 1-2)
Section 2: Ethical issues (qu 3)
Section 3: Social issues (qu 4-5)
Section 4: Economic issues (qu 6-7)
Section 5: Professional guidance and the law (qu 8-9)

List of contributors

General Observations

In addition to answering the questions raised by the Council in detail (see relevant sections) we would like to make the following general observations:

1. The document would have been much more helpfully titled 'Treatment decisions in fetuses and the newborn'.
2. All human beings, including the fetus and the extremely preterm or malformed neonate, are worthy of the utmost respect, empathy, compassionate care and protection from abuse or harm.
3. The essential aims of neonatal medicine are to relieve symptoms, preserve life and if possible restore to health.
4. There are untreatable or lethal clinical conditions for which invasive medical technology cannot bring benefit and in these circumstances, withholding or withdrawing life-sustaining treatment may be appropriate and ethical.
5. Whilst recognising that resources are limited, doctors nevertheless have a duty to use resources available to them to intervene to save life, prevent disability or relieve distressing symptoms in an individual patient under their care when it is in their power to do so.
6. It is vitally important that we reject a simplistic biological determinism and recognise that the outcome for any individual fetus or neonate depends on a wide range of contingencies and uncertainties which cannot be quantified or predicted with any degree of accuracy.
7. Any guidance on decisions to withhold or withdraw treatment should be advisory rather than binding and based on the best up to date results obtained in centres of excellence rather than being derived from dated 'lowest common denominator' epidemiological population-based studies such as EPICure. The emphasis must be on making the best care more readily accessible.
8. Diagnostic and prognostic information must be conveyed to parents in a way which is genuinely neutral, balanced, compassionate and well-informed by the latest evidence. Wherever possible, parents should be offered the possibility of meeting others who have first-hand experience of the condition or disability in question.
9. The concept of 'Quality of Life' (QoL) as conventionally employed in discussions about the future outcome of critically ill fetuses and newborns is beset with logical and practical difficulties, and its use can perpetuate and enhance negative stereotypes, prejudices and discriminatory behaviour against disabled children and adults.
10. Greater attention should be paid to the recording and assessment of the subjective life experiences of babies, children and adults who have undergone neonatal intensive care. The unthinking use of so-called QoL measures by health professionals and policy makers is unhelpful, misleading and counter-productive.
11. Discussions about treatment decisions in fetuses and newborns cannot be divorced from a consideration of the causes of prematurity and disability. A substantial proportion of prematurity could be prevented by measures directed towards reducing abortion, infertility and sexually transmitted disease, improving maternal education and social deprivation, and to a lesser extent alcohol and tobacco consumption. Some fetal and newborn disability is also preventable. More resources should be expended in top quality research to identify the major causes of prematurity and disability as a prelude to developing more effective preventive strategies.
12. There is no evidence to suggest that the use of new technology in treating fetuses and newborns has led to an increase in the incidence of disability in the general population. Rather babies who would previously have died are now surviving with or without disabiliity, and babies who previously would have survived with disability are now surviving without it.
13. We believe that a detailed review of the legal framework for late abortion should be recommended and that guidelines should be developed following wide consultation. We see no moral difference between the fetus at 24 weeks gestation and a newborn infant at the same gestational age, and therefore hold that late feticide should not be legal.

We believe that the intentional killing of newborn infants is always wrong whereas providing palliative care whilst withholding futile treatment may be entirely appropriate. The moral integrity and intentions of the health professionals and the parents are of central importance in any ethical dilemma at the beginning of life.

Background

As Christian health professionals we start with the conviction that all human beings, including the fetus and the extremely preterm or malformed neonate, are made in God's image. As a consequence we believe that each human life has a unique, irreplaceable and intrinsic value which is independent of the precise abilities, functional impairments or life expectancy of the individual.

In both Jewish and Christian thinking, the stronger and more powerful members of society have a special responsibility to care for the weak and vulnerable members and to defend them from abuse, neglect or manipulation. This fundamentally religious understanding of the duty of the community to protect the weak and vulnerable has been extremely influential in the development of medical and social services for children and newborn babies over the last 200 years.[3] We believe that every fetus and newborn baby is worthy of respect, empathy, compassionate care and protection from abuse or harm. Treating babies with respect means acting as advocates on behalf of these weakest individuals in our society, ensuring that their voice is heard and that their interests are preserved.

Christian health professionals have actively supported the development of neonatal medical and nursing services in the UK and worldwide as an expression of love and concern for vulnerable newborn babies. The fundamental goals of medicine have always been to relieve symptoms, to preserve life and where possible to restore to health, and these should remain the essential aims of neonatal medicine.

However we recognise that the invasive and sophisticated life-support technology which is now available in neonatal intensive care units may have profoundly harmful consequences for babies and their families when used inappropriately. All health proefessionals have a duty to use medical technology with wisdom, prudence and sensitivity to the individual needs of each infant and their family. We recognise that there are untreatable or lethal clinical conditions in which invasive medical technology cannot bring benefit and in these circumstances, withholding or withdrawing life-sustaining treatment may be appropriate and ethical. We support the desire of the Working Party to address the issues surrounding the complex and painful ethical dilemmas concerning medical care at the beginning of life.

We also recognise the importance of ensuring the wise and equitable use of limited health resources in our society. In Christian thinking we are called to be stewards of the generous resources for which we are responsible and to be accountable to one another and ultimately to our Creator for their use. We recognise therefore that it may not be possible to provide every conceivable therapeutic option to every baby who might benefit from it.

Senior clinicians have to make difficult but responsible decisions as to the best use of their departmental budget while at the more macro level the needs of the neonatal unit have to be balanced alongside the needs of other sections of the health service. However, we also recognise the important place of the 'rule of rescue' within decision making – the responsibility and natural human impulse to rescue one in need of imminent death or permanent damage.[4],[5] The primary duty of a competent physician when faced with a newborn baby is to offer what treatment he can with the resources he has to hand - and budgetary issues should not be a hindrance to intervention in that child's best interests.

Before addressing the individual questions raised in the consultation paper we wish to address a range of broader issues within the Terms of Reference of the Working Party that we believe provide the backdrop to these complex ethical issues. These are; a) the accuracy of prediction of outcome in fetal and neonatal medicine; b) the danger of misinterpretation of epidemiological data from long-term outcome studies; c) the perpetuation of negative stereotypes of disability; d) the validity and implications of 'Quality of Life' assessment and criteria; e) preventable factors that are causative of prematurity and disability; f) the title of the consultation document.

a) Accuracy of prediction of outcome in fetal and neonatal medicine

A fundamental issue in fetal and neonatal medicine is the use of diagnostic tests such as amniocentesis, ultrasound or magnetic resonance imaging to provide prognostic information about the likely long-term neurological and developmental outcome. It is often implied that the results of such diagnostic tests provide reliable information about the future 'quality of life' or subjective well-being of individual babies. This concept is predicated on the presumption that there is a deterministic relationship between the physical, biological, and structural characteristics of the fetus or neonate (such as the presence of cerebral injury or chromosomal abnormality) and the long-term experience, well-being or 'life-satisfaction' of the individual.

In our view this deterministic presumption is highly questionable for the following reasons:

1. There are profound limitations in the current scientific understanding of the developing central nervous system and the relationship between structural abnormalities and long-term functional abilities.
2. There is growing evidence of the remarkable ability of the neonatal central nervous system to adapt, repair, regrow and 'rewire' neural tissue in response to injury and to subsequent experience (plasticity). These processes of adaptation and rewiring continue throughout childhood and adolescence and on into adult life. Hence the sum total of experiences, events and choices that occur through childhood and adolescence have a critical impact on the long-term cognitive and behavioural outcome. The results of several studies that have assessed the outcome of ex-preterm infants at adolescence or young adulthood have indicated surprisingly positive outcomes.
   
   Rushe and colleagues assessed neuropsychological outcome at 14 to 15 years of age of a cohort of 75 subjects born at <33 weeks' gestation. Magnetic resonance imaging showed that 55% of this cohort had evidence of brain abnormality. Yet when compared to a control sample of term adolescents, very preterm subjects had impairment only on a measure of word production. On measures of attention, memory, perceptual skill, and visuomotor and executive function, the adolescents born very preterm performed in the normal range, whether or not they had evidence of MRI abnormality.[6]
   
   Saigal and colleagues studied 166 young adults at a median age of 23 years who had had birthweights between 501 and 1000g.[7] The study group included 33 subjects with neurosensory impairments but 7 subjects with very severe impairments were excluded as they were unable to participate in the testing procedures. Detailed testing of social functioning, relationships with peers, partners and family and life satisfaction showed no differences in the extremely low birthweight group compared with a matched group of adults who were born with normal birthweights. Another study with the same cohort of young adults showed no difference in educational attainment, job status, mean income, independent living or marital status compared with controls. The authors concluded, 'It appears that against all odds, a significant majority of extremely low birthweight adults have overcome their earlier difficulties to become functional in terms of educational attainment, employment and independent living.'[8]
   
   Hack and colleagues found that 74% of very low birthweight adults had graduated from high school compared with 83% of controls and that very low birthweight men were less likely to enter higher education compared with controls. There were no significant differences in the educational attainment of very low birthweight women compared with controls.[9]
3. As medical, psychological and social knowledge improves, it is highly likely that new physical, cognitive and behavioural therapies for disabled infants and children will become available in the next decade. The advent of new therapies will further change and enhance the long-term neurodevelopmental, educational and behavioural outcome for extremely preterm or impaired individuals who are already born or about to be born.
4. The relationship between diagnostic abnormalities detected at the fetal or neonatal stage and long-term neurodevelopmental outcome can only be probabilistic, and any individual prediction has wide statistical confidence intervals. Hence it is usually not possible to predict the likely outcome for one particular individual with the degree of accuracy (eg. 'beyond reasonable doubt') which is required in the interests of justice.
5. It is not possible to predict the attitudes, beliefs, and values of the individual which play a critical role in their understanding, experience and valuing of their own life.
6. Disabled individuals frequently report that the attitudes of others within society, and the adequacy of provision of appropriate aids and resources, make a greater impact on their overall 'quality of life' or subjective well-being, than the precise medical or biological impairment itself.

We recognise that there are a small number of lethal abnormalities – such as anencephaly or Tay Sachs disease where outcome can be predicted with a high degree of certainty, but in clinical experience the majority of neonatal cases involve high levels of uncertainty about detailed neurological, cognitive and behavioural outcome.

In summary we believe it is vitally important that simplistic, deterministic or fatalistic assumptions about long-term outcome and the future 'quality of life' are rejected. Health professionals, parents, lawyers and ethicists must reject a simplistic biological determinism and recognise that the outcome for any individual fetus or neonate depends on a wide range of contingencies and uncertainties which cannot be quantified or predicted with any degree of accuracy.

b) Danger of misinterpretation of epidemiological data from long-term outcome studies

Several large and well-designed population based studies of the mortality and long-term neurodevelopmental outcome of extremely preterm infants have been published recently and the results have received widespread media attention.[10],[11],[12],[13] The summary results from the EPICure study are presented on page 10 of the Consultation Paper. Studies such as EPICure provide reliable and extremely useful data on the outcome of a large geographically-defined cohort of extremely preterm babies born at a particular period of time. These data are receiving wide coverage and are being used to inform clinical and ethical decisions about the appropriateness of neonatal care at the beginning of life. However it is important to recognise that, by their very nature, these large epidemiological studies carry with them critical limitations.

1. The data represent the summation of outcomes from a very large number of hospitals and neonatal units. These units comprise the complete spectrum of neonatal care, ranging from specialised tertiary level units to the smallest hospitals and maternity units that might see only one extremely preterm baby every year. Hence the published data obscure extreme heterogeneity of staffing levels, of staff specialist skills and experience, and in the provision of specialist equipment between hospitals.
2. The staff working at the hospitals whose data is captured in the large epidemiological studies encompass the complete range of clinical and ethical attitudes towards the extremely preterm neonate. Hence some obstetric and neonatal staff will have had a very conservative and non-interventionist approach to preterm labour and the care of the baby at the limits of viability whilst other staff had a very pro-active and interventionist approach. There is no doubt that the ethical attitudes and actions of the individual staff members concerned exert a significant influence on whether particular babies survived and on their subsequent morbidity (see below). Hence the published outcome data conceal and are critically affected by very substantial heterogeneity in the ethical attitudes of the staff concerned. In our view it is illogical unthinkingly to employ these data, which are influenced by covert ethical decisions, to inform and decide on the ethical approach to the care of similar babies in the future.
   
   A recent study from Sweden compared mortality and morbidity of extremely preterm infants in two regions of the country, one with a pro-active policy and the other with a more conservative policy.[14] The authors found that, in infants born between 22-25 weeks of gestation, a pro-active policy was associated with a) an increased incidence of live-births, b) fewer infants who died within 24 hours of birth and c) increased survival at 1 year of age. The odds ratio for survival was 2.5 in the pro-active region compared with the conservative region. There was no evidence of an increased level of morbidity in survivors and the proportion of survivors without morbidity was larger in the pro-active region.
   
   A further example of the influence of ethical attitudes and policies on outcome data is that obtained in Holland, where there is a generally accepted policy not to actively resuscitate infants born below 25 weeks of gestation. A study from a major centre in Holland showed a mortality rate of 66% at 23 and 24 weeks with an incidence of severe disability in survivors of greater than 50%.[15] By contrast in the pro-active region described in Sweden mortality of all infants born between 22 and 25 weeks was 31%.
3. Obstetric and neonatal care is changing and improving at an extraordinary pace. By their very nature, long-term outcome studies represent the outcome following a standard of care that has become outdated. The EPICure study provides information on outcome for infants born in UK and Ireland in 1995. Since that time there have been very significant and wide-reaching improvements in the quality of care provided, the frequency of in-utero transfer to major perinatal centres, the level of training of neonatal and obstetric staff, the provision of specialist resources, and the educational and behavioural care and therapeutic resources which are available to disabled children following discharge from hospital. Caution must be applied in the use of historical data to apply to children born in the present and the assumptions inherent in the use of the data should be made explicit.

In summary, population-based epidemiological data can provide valuable descriptive data on the average outcome for babies born at a particular historical period, but such data cannot and should not be used to provide normative data on the outcome which might be achieved for a baby born today with appropriate levels of expertise, staffing and resources and with a consistent 'active' or 'interventionist' approach to clinical management.

Although outcome studies obtained from single centres also suffer from significant limitations such as selection bias, and denominator uncertainty, they can provide information which is complementary to that obtained from large geographically-defined cohort studies. In particular they can quantify the outcome that may be achieved with a particular level of staffing and equipment and where more consistent clinical management policies are applied.

Hoekstra and colleagues have recently published detailed outcome data for a cohort of infants born between 23 and 26 weeks of gestation at a single tertiary neonatal centre in Minneapolis, USA, over a 15 year period.[16] The data show a consistent year-on-year improvement in survival and for the period 1996-2000 there was a survival rate following admission to NICU of 66% at 23 weeks of gestation and 81% at 24 weeks of gestation. These figures are markedly higher than those reported from large population-based studies.

A prospectively-defined long-term follow-up study of all very premature infants admitted to the Neonatal Intensive Care Unit at University College London Hospital has been underway since 1980. Neurological and developmental outcome has been measured and reported in this cohort at a range of ages.[17],[18] The population mix of mothers and preterm infants referred to UCLH is broadly typical of those cared for at major referral centres across the UK.

Survival rates and developmental outcome (using the Griffiths Developmental Scales) in this cohort at 1 year of age, for all infants born at gestational ages of 22-25 weeks over a 20 year period between 1981 and 2000. These data have been presented at the scientific meeting of the European Society for Pediatric Research 2004, and are currently in preparation for submission to a peer-reviewed journal.[19] The data showed a significant trend to improvement in survival between 1981 and 2000 at all gestational ages. The incidence of neurodisability in survivors was unchanged over the same time period.

For the period 1996-2000 the numbers and percentage of survivors as a proportion of all livebirths in the hospital are presented below.

[image]

In the time period, 1996 to 2000, 26% of extremely preterm survivors had evidence of disabling impairments at 1 year of age.

The data from both these studies suggest firstly that there has been continuing improvement in the survival of extremely preterm infants over the last 15-20 years with improvement continuing from 1995 onwards. Secondly they suggest that significantly improved survival may be observed in single tertiary centres compared with overall survival data obtained from large geographically defined cohort studies.

In considering the future of neonatal care it is surely unhelpful to concentrate on the average standard of care (or lowest common denominator) achieved across the country. We believe that the best practice developed in centres of excellence should be promoted more widely. It would be illogical to limit or constrain the activities of major tertiary perinatal centres by directive guidance based on results from large epidemiological studies such as EPICure. Similarly future guidance should not be built around results from neonatal care that was provided 10 years ago. Although we recognise the importance of avoiding a postcode lottery in delivery of care to extremely preterm babies, any standardisation should aim at the best models of care. This is best achieved through centralisation of care for the smallest and sickest babies together with improved mechanisms to facilitate rapid transfer to perinatal centres before and after birth.

c) Perpetuation of negative stereotypes of disability

Research has demonstrated the crucial significance of the initial interview when the diagnosis of potentially disabling medical condition is made to the parents. The attitudes of parents towards their children may be strongly influenced by the language and covert attitudes and values communicated by the health professional. When a diagnosis of a potentially disabling medical condition is made in the fetus, it is generally an obstetrician, fetal medicine specialist or genetic counsellor who discusses the long-term implications with the parents. When the diagnosis is made in the neonatal period, it is nearly always a neonatologist who counsels the parents.

Most healthcare professionals working in obstetrics or neonatal medicine have little first-hand experience of the lives of children and adults with disability. Hence their understanding of the lives of disabled people is mainly drawn from the medical literature, especially standard medical texts. There is a strong tendency for health professionals to list and emphasise the precise medical and functional impairments associated with a particular diagnosis, without a counterbalancing emphasis on the abilities and positive features of the lives of people with the condition. Although health professionals generally try to counsel in a non-directive manner, it is inevitable that their attitudes and prejudices concerning the lives of disabled people will colour the way in which information is communicated. There is accumulating evidence that health professionals consistently undervalue the quality of life of disabled ex-premature adolescents compared with parents and with the individuals themselves.[20] It is notable that the description of the lives of disabled ex-preterm survivors is often described in purely negative terms of 'suffering', 'difficulty', and 'limitations'.

We believe that it is important that diagnostic and prognostic information is conveyed to parents in a way that is genuinely neutral, balanced, compassionate and well-informed by the latest evidence. Wherever possible, parents should be offered the possibility of meeting others who have first-hand experience of the condition or disability in question.

d) The validity and implications of the use of 'Quality of Life' criteria

We believe that the concept of 'Quality of Life' (QoL) as conventionally employed in discussions about the future outcome of critically ill fetuses and newborns is beset with logical and practical difficulties, and that its use can perpetuate and enhance negative stereotypes, prejudices and discriminatory behaviour against disabled children and adults.

1. The concept of measuring QoL is fundamentally incoherent. It is assumed that, by performing assessment across a series of domains such as material, physical, social, emotional and productive well-being, a single quantitative score can be obtained. But, by way of example, it is manifestly impossible to rank on a quantitative scale the inability to walk more than 10 metres, a moderate deficit in attention, outstanding musical ability and the ability to establish a close and intimate emotional relationship. Several philosophers have argued that the value systems which underlie these dimensions are incommensurable. In particular it is absurd to attempt to rank the 'goods' of human life in some kind of hierarchy. Is physical well-being of greater intrinsic value or importance than cognitive functioning or emotional well-being? It is clearly impossible to have any consensus within our own society on these issues, and many would argue that the questions themselves are logically incoherent and meaningless.
2. It is clear that our personal values, goals and perceptions change as we go through life. The concept of QoL is particularly problematical when it is used in prenatal screening or neonatal practice to predict, summate and evaluate the future life experiences of a fetus or newborn infant. Each person's experience of living is unique, profoundly complex, constantly evolving and continually modified by contingent factors including relational and social influences.
3. The concept of QoL assumes that a biological impairment such as impaired neuromotor function translates automatically into a loss of well-being or life-satisfaction. Yet many disabled adults assert that the main source of dissatisfaction in their lives is not their functional impairment, but social attitudes and political responses to their disability. The question, 'Are you able to use the local transport system?' could be rephrased, 'Has the local transport system been adapted to meet your requirements?' Hence QoL concepts focus attention on the individual and his or her biological impairments rather than the context of social, political and economic policies that are of central importance to the life-experience of disabled individuals. We believe that studies of ex-premature children should pay greater attention to the social prejudices, stigma and barriers that disabled children experience as well as quantifiable impairments. Many of the most significant factors that impair the life experiences of children and adults are non-biological in origin.
4. The use of QoL tends to have normative implications – it assumes that functioning within the normal range of abilities on a series of dimensions is in every way preferable and more desirable than unusual, or impaired forms of functioning.
5. QoL measures tend to focus attention on easily detectable and quantifiable pathology and impairments and pay less attention to personal and relational strengths, capacities and functions which are more difficult to assess and quantify. Studies of the life-experiences of children and adults who have undergone neonatal intensive care should also include studies of control subjects to provide valid comparisons.
6. Evaluation of QoL can never be undertaken 'objectively', that is uninfluenced by the assumptions, prejudices and life-experiences of the observer. For example there is empirical evidence that health professionals and parents of adolescents who were born very preterm consistently undervalue their 'Quality of Life' compared with the individuals themselves.[21]
7. The prediction of QoL at the beginning of life assumes a biological determinism that ignores the accumulating evidence of the plasticity of the developing central nervous system. A low QoL prediction at the beginning of life tends to promote a pessimistic fatalism amongst clinicians and parents. It devalues the capacity of children, parents and professionals to counteract injury sustained at the beginning of life, and ignores the very real potential for effective therapeutic and neuropsychological strategies that are likely to become available over the next decade and beyond. The prediction of a low QoL at the beginning of life may become a self-fulfilling prophecy.
8. The prediction of QoL tends to ignore the younger child's experience of life and focuses attention on future outcomes in adolescence and adulthood as the only important measure of life-satisfaction.
9. Although QoL appears to be an objective and 'value-free' idea, in reality the concept can never be separated from an underlying and highly contested philosophical value-system. The assessment of an individual's QoL, however undertaken, conceals value-judgements about the goals, purposes and 'goods' of human life. In particular it gives privileged status to a utilitarian perspective, in which the 'value' of one individual life can be directly weighed and compared with others. This is even more explicit when QALYs are employed, because their use assumes, for example, that the summated life-years of 3 individuals with a QoL of 0.3 are of equivalent value or utility to those of one individual with QoL of 0.9. We believe that if this form of crude utilitarianism was made explicit it would be rejected by a large majority in our society.
10. We believe that the unthinking use of the concept of QoL is dangerous, because of its potential for abuse within the political and economic structures of our contemporary society. The concept of a low QoL can perpetuate negative prejudices about the experiences of disabled people and may encourage a eugenic desire to eliminate people with biological impairments from our community. In an economic environment where the costs of health care are rising, there is explicit or implicit pressure on health professionals to seek any approach that can reduce on-going health expenditure. The concept of QoL subtly shifts responsibility for improving resources for disabled people from politicians and economists. Instead it places responsibility on clinicians and parents to ensure that people who are likely to be disabled are not brought into the world.

In conclusion we recognise that there is a wide variation in disabling impairments, in the impact that they may have on individuals and families, and in the attitudes and responses that parents have to the diagnosis of a disabling condition. We believe that greater attention should be paid to the recording and assessment of the subjective life experiences of babies, children and adults who have undergone neonatal intensive care. However we believe that unthinking use of so-called QoL measures by health professionals and policy makers is unhelpful, misleading and counter-productive.

e) Causes of prematurity and disability - preventable factors

Discussions about treatment decisions in fetuses and newborns cannot be divorced from a consideration of the causes of prematurity and disability. The consultation paper document highlights the problems associated with extremely preterm birth but does not refer to a number of preventable factors that are known to be associated with an increased incidence of premature labour and delivery.

Preventable factors include: multiple pregnancies (which are strongly associated with assisted conception techniques), fertility treatment, social deprivation, alcohol, smoking, low maternal educational attainment, poor antenatal care, physical abuse or trauma to the pregnant mother, genital tract infections including sexually transmitted infections, and previous induced abortion.[22],[23],[24] Measures directed towards reducing alcohol and tobacco consumption and unplanned pregnancy, and preventing infertility and sexually transmitted disease would therefore be beneficial.

More resources also need to be employed in primary prevention of disability (eg. folate supplements to prevent neural tube defects[25]) and in understanding the aetiology of genetic disorders and acquired congenital abnormalities. We would encourage the working party to recommend to government that resources be expended in top quality research to identify the major causes of prematurity and disability as a prelude to developing more effective preventive strategies.

The UK appears to have a relatively high incidence of extremely preterm birth compared with other European countries. It has been well publicised that Britain now has the highest rates of sexually transmitted disease in Europe. There has also been a huge increase in fertility treatments for tubal infertility (in large part fuelled by the current epidemic of sexually transmitted diseases) and ovarian failure (fuelled by delaying reproduction) leading to a subsequent increase in multiple pregnancies with their associated risk of prematurity. In addition there are 190,000 abortions per year in England and Wales with one in three women now having an abortion during her lifetime. Given that past abortion effectively doubles the chance of subsequent premature delivery; it must follow that a substantial proportion of prematurity is at very least an indirect consequence of abortion.

The prevalence of premature birth and the associated problems must be placed in the wider social context. We would like to see:

• Consideration of the fact that disability is also caused by occurrences after the birth of a healthy child. The current consultation, with its emphasis on disability outcomes and 'reduced quality of life' seems to be driven by a fear of disability, and a 'feeling' that limiting treatment of preterm children will significantly reduce the presence of disability in society. This is a false assumption. There is no evidence to suggest that the use of new technology in treating fetuses and newborns has led to an increase in the incidence of disability in the general population. Rather babies who would previously have died are now surviving with or without disabiliity, and babies who previously would have survived with disability are now surviving without it.
• More effective strategies to reduce tobacco and alcohol consumption.
• More publicity given to the causes of prematurity and disability.
• Improved health and social education for school children including ways of optimising maternal and neonatal health, the health risks of early sexual activity and multiple sexual partner, sexually transmitted infections, and the rights and perspectives of disabled people. In particular, we believe that government sexual health policy is flawed in concentrating primarily on 'harm reduction' (STD treatments, condoms, postcoital contraception), which cannot protect against all the risks, rather than behaviour change (promoting abstinence and fidelity).
• Similarly, women presenting for termination, particularly if it is a second termination, must be informed of the associated risks of future infertility and premature labour.

f) The title of the document

At the outset, we believe that the document would have been much more helpfully titled 'Treatment decisions in fetuses and the newborn'. By contrast the phrase 'prolonging life' in the document title is both emotionally laden and misleading. It is emotionally laden because it carries with it a presupposition that fetuses and neonates are often having their lives unhelpfully extended by technology. This begs the question the consultation seeks to answer and is itself contestable.

It is misleading to talk of 'prolonging' the life of a fetus simply because most intrauterine deaths are not preventable and very few life preserving prenatal interventions currently exist. Those that do, rather than 'prolonging life', may in fact dramatically save it (eg. transfusion). Unless they suffer from abnormalities that are incompatible with intrauterine life, seriously ill fetuses will generally survive until birth. We therefore wonder whether the phrase 'prolonging life in the fetus' is actually intended to be a euphemism for 'not allowing abortion'. If this is the case then it should be stated explicitly.

There are of course babies born with conditions that are incompatible with long-term extra-uterine life. Some die immediately after birth regardless of what treatment is given (eg. Potter's syndrome). Others may continue to live for weeks or months (eg. Edwards' Syndrome) provided that they receive food, fluids and basic nursing care. Still others survive only with treatment to correct congenital abnormalities, support life or alleviate symptoms. We consider that withdrawing or withholding treatment or sustenance with the intention that a baby will die, crosses an ethical rubicon. If 'prolonging life' in the neonate is intended to include decisions of this type then again this should be clearly stated. We do however accept that there are occasions when it is ethically right and clinically appropriate to withdraw or withhold treatment that is ineffective or brings burdens that outweigh any benefit.

Because of these concerns we have throughout the document addressed the issues in terms of treatment options, rather than in terms of decisions about 'prolonging' or 'terminating' life.

Answers to the consultation questions

Section 1 – Clinical practice and future developments

Question 1. In cases where a fetus may suffer from serious abnormalities that are likely to be disabling in the long term, what measures may it be appropriate to take to sustain the life of the fetus or, where possible, to correct those abnormalities before birth?

In the majority of cases of serious fetal abnormalities, the fetus is not at risk of intrauterine death and hence measures to sustain the life of the fetus are not necessary. In the relatively rare case where the fetus is at risk of intrauterine death, we believe that medical treatment should be given to the fetus if it is likely to bring substantial benefit relative to the risks. At the present state of knowledge fetal surgery appears to have a low success rate, although medical interventions, for example for fetal heart arrhythmias, may be life-saving. In all cases the likely benefits of any treatment should be balanced against its burdens and risks. The balancing of benefits and risks must be undertaken honestly and openly in consultation with the parents and the uncertainties of predicting future outcome should be highlighted. In the majority of cases there is considerable inaccuracy in the prediction of future neurological and cognitive outcome because the precise nature, and severity of future impairments cannot be known, and outcome depends on a range of contingencies including new medical treatments, preventive measures and social support for disabled people which are constantly being refined. It is important that these uncertainties are spelt out honestly though they are extremely hard for parents to come to terms with as they are faced with difficult decisions on action to be taken or not taken. In addition women's and couples' views, values and circumstances differ considerably, depending on their own upbringing, attitudes to disability and previous life experiences.

The fundamental goals of medicine have always been to relieve symptoms, to preserve life and where possible to restore to health, and these should remain the essential aims of neonatal and fetal medicine. We would add to this the old adage: 'To cure sometimes, to relieve often, to comfort always - this is our work. This is the first and great commandment. And the second is like unto it - Thou shalt treat thy patient as thou wouldst thyself be treated.' The goals for the newborn baby are much greater than merely 'sustaining life'.

Do you consider there are ever circumstances when it would be appropriate to override the wishes of the pregnant woman?

We believe that it is very rarely appropriate to treat a fetus against the wishes of the pregnant woman because any act to treat the fetus involves breaching the bodily integrity of the mother. We therefore support present case law and practice in this area.[26] However it is important to ensure that the opinions, desires and concerns of the pregnant woman are fully informed, explored and discussed.

In particular we believe that:

1. Experienced health professionals should give sufficient time for full discussion of relevant accurate information about fetal anomalies and prognoses with the pregnant woman and her partner.
2. Alternative treatments and management options between the extremes of intensive treatment and fetal termination should be explored.
3. Women and their partners should be offered a wider range of sources of information, including the option of speaking to other families with children affected by similar conditions, and sufficient time for reflection.
4. In the case of antenatally diagnosed fetal abnormalities, it is particularly important that obstetric, genetic where necessary, and neonatal medical teams co-operate closely together to ensure that consistent information and a coordinated range of management options are communicated clearly to the pregnant woman and her partner.

It is important to recognise the role of social factors and attitudes in the decisions that parents make regarding the option of termination. Parents frequently feel covert pressure to choose in favour of a termination of an impaired fetus because of perceived deficiencies in social, financial and psychological support for families with disabled children.

The only situation in which treatment of the fetus against the wishes of the mother might be appropriate is if she is clearly incompetent to give consent to treatment because of psychiatric illness or learning disability. In this case we believe that treatment might be justified if it was clearly in the best interest of the fetus, that is that the benefits of treatment clearly outweigh its burdens and risks. Even so, we believe that attempts should be made to obtain the assent of the mother when legally valid consent cannot be provided.

Question 2. In which of these circumstances, if any, would it not be appropriate to use medicine and surgery to prolong the life of the newborn? Extreme prematurity, congenital abnormalities, poor prospects for survival because of genetic or other disorder or because of growth restriction, acquired brain damage where there is the likelihood of severely disability).

It is impossible to give precise answers to these broadly-based and generic questions. We believe it is unhelpful to focus attention solely on the prolongation of life. The focus should be on whether intensive medical or surgical treatment is appropriate. This depends critically on the unique constellation of clinical, social and personal features of each individual case, the uncertainties in long-term outcome and includes the family and social context.

We believe that the primary aim of the treating clinician, in discussion with the parents, is always to act in the best interests of the individual child. This involves, in principle, striking a balance between the likely benefits of invasive and intensive treatment against the risks and harms which that treatment carries for the individual child. The benefits which intensive treatment can bring include long-term survival but also the likelihood and degree to which health can be restored. Since the precise balancing process includes a range of personal values, goals and attitudes and a range of uncertainties about future outcome, it is essential that, wherever possible, the parents should be fully informed and encouraged to participate with health professionals in the process of weighing the benefits of treatment against its burdens and risks.

Particular concern and care should be applied to conditions in which the benefits of invasive or intensive treatment are excessively limited or restricted, and conditions in which the burdens or risks of invasive treatment are enhanced.

Conditions in which the benefits of treatment are restricted include extreme prematurity of 22-23 weeks gestation, lethal dysmorphic and other syndromes which are inconsistent with long term survival, progressive degenerative or neoplastic disorders, major congenital or acquired brain injury leading to grossly diminished life expectancy, and very severe congenital malformations which are not amenable to treatment or amelioration.

Conditions in which the burdens or risks of treatment may be excessive include extreme prematurity where there is severe congenital or acquired lung pathology necessitating very prolonged mechanical ventilation, severe congenital malformations which require repeated and major surgical intervention, and rare conditions such as epidermolysis bullosa which are associated with difficulty in achieving adequate pain relief and symptom control.

In the complex task of balancing likely benefits against risks of treatments we believe that health professionals are sometimes inappropriately influenced by feelings of personal responsibility or guilt where their own medical interventions have apparently led to the survival of an individual with impairments. It is important that health professionals are not subjected to explicit or implicit pressure to ensure that fetuses or babies who are likely to be disabled do not survive. In all discussions about the likely impact of future disabilities health professionals should openly and honestly involve the parents and recognise their unique contribution, perspective and expertise.

The purpose of commencing intensive life support methods including mechanical ventilation is not to prolong life indefinitely where there is no prospect of recovery. Instead its primary aim should be to support the critically ill individual while they return to health. Hence the withdrawal of intensive life support may be appropriate if recovery is not possible. We believe that the intention in withdrawing life-support is not to bring death, but rather to withdraw futile treatment, although it is possible to foresee that death may occur as a result of this action. If, as sometimes happens, the baby does not die following the withdrawal of life support, then compassionate caring, with provision of feeds and symptom relief, should be continued.

The withdrawal of intensive treatment because its burdens exceed its benefits does not imply that the intrinsic value of the baby's life is reduced. No one is able to make a final judgement on the value of another life. We are not able to decide whether a life is futile or not. We do however have a responsibility to decide whether intensive treatment is futile or not.

Section 2 – Ethical issues

Question 3. In your view, are these the principal ethical questions that the Working Party should consider? 1. The moral status of the fetus. 2. Acting and omitting to act. 3. Questions about the quality of life. Which of these or other ethical questions would you identify as the most important?

Regarding option 1 – the moral status of the fetus

The Consultation paper tends to conflate moral with legal status, although these have quite different implications. In UK law, the fetus is not recognised as 'a person' and has no legal rights throughout the 40 or more weeks of pregnancy, except for one right after 24 weeks gestation - protection from termination of pregnancy. This right to life is, however, qualified in that:

1. termination is allowed at any stage up to term if there is a 'substantial risk' of 'serious handicap' or if the mother's life is at risk.[27]
2. in 2002 for example, although 2,753 abortions between the 20th and the 24th week were recorded, gestational ages may be under-estimated in records to allow abortions after 24 weeks.[28]
3. as discussed above, practitioners are advised to respect women's refusal of interventions during pregnancy and labour, including interventions intended to save the life of the fetus.[29]

It is notable that the Consultation Paper refers to fetal life in terms of its being actively 'sustained' or 'prolonged' by medical care. It would be more balanced to acknowledge that in most instances fetal life continues independently of medical care, and that in many cases medical intervention in fetal life is intended not to sustain but to end fetal life.

Despite the lack of legal rights, in our view as Christian health professionals and in the view of the majority of adults in our society, the fetus has an intrinsic moral status as a member of the human family.

We believe that the current wording of the UK law under which termination may legally be performed because of a perceived risk of 'serious handicap' at any stage of pregnancy until term is unhelpful. There has been widespread public concern and debate over the possibility that late feticide may occasionally be performed in the UK for relatively minor congenital malformations. The absence of legal guidance for professionals and parents on the nature or severity of fetal abnormality for which termination would be regarded as legal, causes an unnecessary burden of anxiety and uncertainty on all relevant parties. The parents of a mature fetus who are offered the possibility of late feticide may be intensely distressed and even outraged by the suggestion. On the other hand health professionals may sense a legal duty to inform parents of the option of late feticide because of the possibility of subsequent litigation if parents are not informed.

In major tertiary centres it is not uncommon to find physical juxtaposition of fetal medicine units, in which late feticides are performed because of a diagnosis of a major fetal impairment, with neonatal intensive care units in which extremely preterm or impaired newborns are receiving intensive treatment. This juxtaposition of health care services in which contradictory activities are undertaken, can raise emotions of profound ambiguity and distress amongst health professionals and parents.

We understand that the legal limits of abortion are beyond the Working Party's terms of reference. However, we believe that a detailed review of this aspect of the legal framework for late abortion should be recommended and that guidelines should be developed following wide consultation. We see no moral difference between the fetus at 24 weeks gestation and a newborn infant at the same gestational age, and therefore hold that late feticide should not be legal.

In contrast to the fetus, under UK law every baby, including the extremely preterm and profoundly impaired, possesses all the human rights documented in the 1989 UN Convention on the Rights of the Child (more than are noted in the Consultation Paper on p28). These legal rights complement and validate the baby's moral status as a member of the human family.[30] The contemporary moral status of the extremely preterm or severely impaired baby is an important question that should be addressed by the Working Party.

The dominant model for contemporary bioethics puts emphasis on individual autonomy and a utilitarian summation of consequences, frequently couched in terms of the minimisation of individual 'suffering'. This model inevitably tends to devalue the moral significance of both fetuses and newborn infants and erodes respect for the intimate emotional interdependence between babies and parents. John Harris asserts that babies cannot value their own life, and therefore their life has reduced significance.[31] Peter Singer and others regard babies as non-persons (without human rights) because they lack certain characteristics. These supposed 'ethically relevant' characteristics include consciousness, the capacity for physical, social and mental interaction with other beings, having conscious preferences for continued life and having enjoyable experiences. Additionally having relationships to others – relatives, for instance, who will grieve over your death are included as proof of a worthwhile life.[32] At the same time the simplistic equation of disability with 'suffering' implies that only survival free of physical and cognitive impairment is to be regarded as a reasonable outcome of medical intervention.

In contrast, clinical experience indicates that the majority of parents relate to their premature or critically ill newborn baby as a unique, precious member of their family and the wider human community; an individual, with a history, an identity and a name; not as an object but a person to be treated with gentleness and respect; an irreplaceable, beloved child.[33],[34],[35]

It is often assumed by ethicists and others that babies are entirely passive recipients of care from health professionals and parents. However, there is increasing evidence that many premature babies actively interact with caregivers and with their environment. They demonstrate preferences for certain positive experiences and attempt to avoid negative ones[36] suggesting that, in some senses, the premature baby can be considered as an active participant rather than a merely passive 'consumer' of care. In the same way there is increasing evidence that the mature fetus interacts with its environment in the uterus, and has a range of sensory and cognitive abilities.[37],[38] We believe that the Working Party could contribute to the current rather abstract understanding of the moral status of babies and fetuses by drawing public attention to recent empirical research about their behaviour and interactions.

Regarding option 2 – acting and omitting to act

The analysis of medical care in terms of acts and omissions is an unhelpful way of considering the morality of treatment decisions. The underlying implication is that a decision to omit treatment is morally equivalent to intentional killing. Similarly it is implied that a decision not to kill a fetus is equivalent to a decision to 'sustain' its life. This assumes a purely consequentialist or utilitarian ethical framework. We believe that the intentional killing of newborn infants is always wrong whereas providing palliative care whilst withholding futile treatment may be entirely appropriate. The moral integrity and intentions of the health professionals and the parents are of central importance in any ethical dilemma at the beginning of life.

Regarding option 3 – questions about the quality of life

See section (d) under background information (p9) for discussion of Quality of Life issues.

Section 3 – Social issues

Question 4. The Working Party has identified the following questions for discussion: 1. What might we mean by 'quality of life' for a child? 2. How do religious and spiritual influences affect discussions? 3. How do the mass media influence decisions? In your view, are these questions that the Working Party should consider? Should any of these questions be omitted, or are there additional questions that should be included? Which social questions would you identify as the most important?

Regarding number 1 – quality of life

As argued in section (d) of background information (p9), we believe that the concept of 'Quality of Life' (QoL) is beset with logical and practical difficulties, particularly when applied to a newborn or young child. It is entirely appropriate that greater attention should be paid to the subjective experience and perceptions of newborn infants, particularly those who are undergoing intensive medical care. This is an area of active research, for example in studies of neonatal responses to painful stimuli, and it is likely to make major contributions in improving the quality of medical and nursing care at the beginning of life. We believe this is an important area for the Working Party to highlight and in which to encourage further research. Similarly we believe that empirical investigation of the subjective experiences of older children, adolescents and adults who are survivors of neonatal intensive care is an important area for ongoing research.

We support research into the causation, nature, severity and consequences of neurological, behavioural and cognitive impairments in those who are survivors of neonatal intensive care. On the other hand we oppose the concept that an individual's actual or predicted QoL can be assessed by an external observer, and we believe that this approach is incoherent, misleading and counter-productive. See background section (d) for further discussion of QoL issues.

In summary we believe that attention must be paid to the recording and assessment of the subjective life experiences of babies, children and adults who have undergone neonatal intensive care. The Working Party might investigate how future surveys could be designed to take greater account of children's, young people's and parents' unique and diverse views, and to reflect these more realistically. However we believe that unthinking use of so-called QoL measures by health professionals and policy makers is unhelpful, misleading and counter-productive.

Regarding number 2 - Religious and spiritual influences

It is important to recognise that every individual has a worldview – a set of presuppositions and 'beliefs' that informs their actions and decisions. Hence those professionals and parents who profess no religious convictions still hold to fundamental beliefs and assumptions which play the role of a religious belief. Fundamental beliefs may be contestable, but they must be respected and recognised.

The parents' opinions about their child's treatment should not be marginalised on the basis that it is rooted in a religious worldview. Parents' decisions, particularly if they are strongly opposed by the doctors, need to be tactfully explored in discussion with the parents. It may well be appropriate to involve a member of the couples' faith community, the hospital chaplain or other faith representative. It is therefore important that these 'chaplains' are given the opportunity to become properly informed and opportunities for special training may need to be provided. The health care professionals involved may also opportunities for review and discussion.

From a general perspective it is worth noting that over 70% of UK citizens put 'Christian' as their religion in the 2001 Census. Therefore it must be recognised that Christian values and beliefs continue to play a dominant role in our society, and that all health professionals should be aware of and sensitive to this faith perspective. The secular – and utilitarian – ethical agenda that often appears to drive new legislation and guidance in the UK is out of step with the beliefs of the public. Health professionals must be careful not to impose their own rationalistic and enlightenment-based perspectives on their patients.

Regarding number 3 - Mass media

It is obvious that the mass media can play an important role in educating parents and the general public on the scientific, clinical, social and personal background to these ethical dilemmas. However the media can inadvertently perpetuate prejudices and stereotypes about the lives of disabled children and adults, and it is important that the perspective and interests of disabled children and adults themselves are reflected in programme-making. In addition sensationalist and inaccurate media portrayals can cause genuine distress to parents whose children are currently undergoing intensive care. It is important to work out ways by which both the media and the internet can be used to promote responsible public discussion and understanding.

It is notable that media interest tends to focus on the most intractable and unusual individual ethical dilemmas, so called 'hard cases'. These cases, often presented in a polarised and unhelpful way, may end up shaping public debate and discussions about policy, leading to bad – or unnecessary – laws and professional guidelines. We believe that these hard cases should not be the main factor that shapes the discussion and development of good medical practice.

Question 5. Who is best placed to judge quality of life for a child? When families as well as professionals are involved, whose decision should carry the most weight on whether or not to intervene to prolong the life of a fetus or a newborn baby? People likely to be involved: the mother, father, family members, doctors or other health care professionals, healthcare managers, the courts, social services. When parents are involved, whose views should take precedence? (For example: mother/father/parents together?) Who else should be involved? How should such decisions be made, and how should any differences in view between the parties involved be resolved? When, if at all, do you think that people should use the law to challenge medical advice?

As discussed above we do not think that the QoL concept is helpful. We believe that it would be preferable to put assessment under two separate headings. Firstly, an assessment of current subjective experience of the newborn or child, based on detailed observations of indicators of sensory awareness, expressions of pain and distress, response to human interactions etc. In this process the opinions and experiences of the parents and family in interacting with their child should be given due weight. Secondly, the senior medical professionals responsible for the case should provide an estimate of the prognosis for later neurological cognitive and behavioural functioning, based on objective information derived from diagnostic procedures such as brain imaging, and other pathological investigations, whilst openly recognising and discussing the inevitable uncertainty and probabilistic nature of any opinion.

We believe that the individuals who should carry primary responsibility for making life-sustaining treatment decisions are the senior doctor who carries professional responsibility for the care of the baby (or the pregnant mother in the case of a fetus), and the mother and father. It is important health professionals recognise that their attitudes towards life-saving treatment are frequently different from those of parents. In a large study of parents of extremely low birth weight children, parents of term children, neonatologists and neonatal nurses in Canada, Streiner and colleagues demonstrated systematic differences in attitudes, with parents, both of term and extremely low birth weight children, more in favour of life-sustaining treatment than professionals.[39] We would agree with the BMA[40] that 'Where there is genuine uncertainty about which treatment option would be of most clinical benefit, parents are usually best placed and equipped to weigh the evidence and apply it to their child's own circumstances'.

We believe that it is unhelpful if direct responsibility for decisions about life-sustaining treatments are diffused to a wider group of individuals or to a committee, although discussion of the case details with a wider group of experienced professionals or a clinical ethics committee may be helpful. In the case of conflicting views between professionals and parents, every attempt should be made to find a 'compromise' solution to which all parties can agree. Involvement of other professionals, including counsellors or mediators may be helpful, and on occasion even transfer to an alternative hospital seems preferable to involvement of the Courts.

We believe that recourse to the Courts should be a last resort. It is unfortunate that the adversarial nature of our court system seems inevitably to emphasise and exacerbate conflict between clinicians and parents. To our knowledge, with only one exception, all the relevant UK Court judgements, involving conflicts between parents and doctors over the care of a child, have upheld the clinicians' views against the parents'. Hence parents should be warned about this, and not be led to expect that the Courts will give equal weight to parental and to medical views. We believe that it is generally not helpful for these intensely painful and personal cases to be held in public, as the media attention and discussion add to the distress of both parents and professionals. The law should be involved is as few cases as possible and only as a last resort. It is the purpose of the law to define what one is permitted to do without suffering legal penalty. It is not its role to say what should be done.

Section 4 – Economic issues

Question 6. How much weight (if any) should be given to economic considerations in determining whether to prolong the life of fetuses or the newborn?

Advances in medical technology and changes in social values have tended can raise parents' expectations that it is their right and even their moral duty to have 'perfect' children, who will pose the least disruption to parents' lives and the least burden and economic cost to families and society. In this social context there is a tendency for moral choices to become more closely identified with economic and utilitarian considerations. These social and economic forces may tend to validate the moral belief that it is in the best interests of the fetus with moderately severe physical or cognitive impairments not to be born. The Consultation Paper asserts that 'in 1998 it cost £125,000 “to bring up” a child with severe disability, which was at least three times more than the amount required for a child without disability'. This bald statement is an example of the negative evaluation of children described in 3(c). It does not allow for the great individual differences between parents with a normal child including those who choose to pay far more than £125,000 in childcare, clothing, leisure/entertainment and schooling costs, compared with parents who have very few resources. A comparison might be made with extra cost and 'burden' on parents of bringing up a child who is exceptionally gifted and who requires extra educational input. The statement in the Consultation Paper appears to put an economic value on an individual disabled life, rather than focussing on the political and economic decisions which underlie such calculations. Many disabled people argue that better education and employment opportunities would enable them to repay in income tax the investments which society had made in their earlier care.

Economic pressures colour social perceptions of disability, disabled children and of children generally, and can therefore exacerbate anxieties about the risks of impairment. As mentioned above, parents and children who live with disability tend to report more positive, accepting and pragmatic responses compared with practitioners and potential parents with little direct experience of disability. The Consultation Paper (p20) seems to assume a purely negative effect of disabled children on their families, but there is little empirical evidence to support this. Peter Rosenbaum and colleagues in Ontario have found no correlation between assessed severity of disability and indices of maternal stress. Similarly Pinelli, in a study of the families of extremely low birthweight adults, found no differences in marital disharmony, mood, anxiety, social support, depression or mother's physical or mental health, compared with controls.[41] Health professionals and parents frequently express anxieties about the negative effects of impaired children on healthy siblings, implying that siblings are passive objects who are 'damaged' by the presence of a disabled child. In contrast, the empirical evidence suggests that siblings are active agents who frequently make a positive contribution towards caring for children with impairments and also report advantages of learning to live with disability as a family. In summary, economic considerations should never be an explicit or even implicit part of any treatment decisions regarding individual fetuses or the newborn.

7. Should a QALY (or another measure of health gain) for a newborn child be given the same weight as a QALY for a middle aged or elderly person?

We do not believe that QALYs are a helpful or informative way of assessing the likely benefits of interventions at the beginning of life. See replies to questions 4 and 6 above.

Section 5 – Professional guidance and the law

Question 8. Would drawing up more directive professional guidance be helpful to parents and professionals?

We believe that further guidelines would be of assistance to health professionals. However we do not believe that guidelines should be 'directive', but rather 'advisory' – and flexible enough to recognise that each situation is different. Directive protocols tend to assume that 'one size fits all' and in this respect are unhelpful. Senior and experienced health professionals must have the clinical freedom to treat patients in a manner that they genuinely believe is in their patient's best interests.

If so, should the UK follow practice in other countries and set a minimum age below which resuscitation normally would not be permitted?

No. We believe this would be unhelpful and dangerous. Setting a limit makes the erroneous assumption that lack of resuscitation will inevitably result in the death of the infant. In some cases a child will continue to live but with a much greater risk of neurological impairment. A clinical decision to withhold initial care, followed by a decision to commence treatment some minutes or hours later (as is documented may occur currently in Holland) risks increasing the rate of neurological impairment and subsequent morbidity. An arbitrary limit on resuscitation also ignores the steady improvement seen over the last 30 years in the prospects for extremely small babies and the likelihood that further advances in clinical care, including new brain protective treatments, will be forthcoming in the next decade. Hence prescriptive guidelines may well impede medical progress in the care of extremely vulnerable babies. A further major problem with prescriptive guidelines based on gestational age is that, in routine clinical practice, the precise gestational age is often uncertain and in most clinical situations an error in gestational age of ±2 weeks is accepted. Hence normal clinical uncertainty and errors in gestational age assessment may have profound and potentially damaging consequences. Again, senior and experienced health professionals must have the clinical freedom to act in their patient's best interests.

Question 9. Would drawing up new legislation in this area be helpful to parents and professionals?

We believe that current legislation governing the medical care of babies and children is satisfactory and that new legislation is not necessary.

We believe that the current wording of the UK law under which termination may legally be performed because of a 'substantial risk' of 'serious handicap' at any stage of pregnancy until term is unhelpful. The absence of legal guidance for professionals and parents on the nature or severity of fetal abnormality for which termination would be regarded as legal causes an unnecessary burden of anxiety and uncertainty on all relevant parties. In cases where significant abnormalities are detected late in pregnancy, health professionals currently perceive a legal duty to inform parents of the legality of late feticide, because of the possibility of subsequent litigation otherwise. As referred to above, we would support a detailed review of current legal framework for abortion beyond 24 weeks and the development of guidelines following wide consultation.

Contributors

Dr Caroline Berry MB FRCP PHD, Emeritus Consultant Geneticist.

Miss Jacky Engel BMedSci MPhil MA, CMF Research and Publications Assistant.

Dr John Jenkins MB BAO MD FRCP, Consultant in Paediatrics, Senior Lecturer.

Dr Sheena Kinmond MB DCH MRCGP MRCP, Consultant in Neonatal Paediatrics.

Dr Calum MacKellar PhD, Director of Scottish Council for Human Bioethics.

Dr Peter Saunders MB FRACS, CMF General Secretary.

Professor Gordon Stirrat MB MA MD FRCOG, Emeritus Professor of Obstetrics and Gynaecology at University College, Bristol, and lecturer in ethics.

Professor John Wyatt MB DCH MRCS FRCP, Consultant in Neonatal Paediatrics at University College London.

For further information:

Steven Fouch (CMF Head of Communications) 020 7234 9668

Media Enquiries:

Alistair Thompson on 07970 162 225

About CMF:

Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.

CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.