The rise of autonomy

Because the service is expected to be safe and predictable, society also demands that it be delivered on the patient’s own terms. Where the survival of the parturient mother and child is a hazardous matter, the clinician responsible for the delivery may insist on defining the terms, place and means by which the delivery is to be effected. The patient who refuses to take medical advice may be regarded as eccentric; whereas if it is safe and easy to deliver a child, then it readily comes to be viewed as a ‘lifestyle choice’ in which the pleasure to be derived from the occasion takes a higher priority than the reduction of an already modest risk. Although society is more risk‐averse than ever before, it is also predisposed to doubt risks described by experts. The first generation to embrace evidence‐based medicine and to limit the ability of clinicians to introduce new therapies that have not been subjected to a double‐blind trial is oddly more willing now than in the past to embrace complementary medicine and to advocate the woman’s right to home birth when neither has been subjected to any such evidence‐based assessment of risk. The fact that the primary care deliverer is often a midwife who may be sceptical about the role of the doctor has proved to be a complicating factor in many Western societies, whilst the rarity of any sort of competent clinical support for many in sub‐Saharan Africa is a continuing source of shame in our society.

When a 2010 meta‐analysis based on over 550 000 deliveries reported that home deliveries involved a significant increase in the risk of infant mortality, The Lancet [2] suggested that ‘women have the right to choose how and where to give birth, but they do not have the right to put their baby at risk’ [3]. The meta‐analysis found that the risk of mortality from home birth was increased from 0.09% to 0.2% and the question that The Lancet editorial ignored was whether the increased risk of about 0.11% was reasonable or not. Nor was it clear whether the ‘right’ The Lancet was debating was legal or ethical. In law, women do have the right, broadly speaking, to do whatever they like in this regard, as the unborn child has no legally enforceable rights against its mother, in England at least. In ethics, the distinction between the right of the parent to do as she wishes before the birth and the obligation to act in her child’s best interests thereafter is certainly less clear, because the parent has the same obligation to act in her child’s best interests whether the child has separate legally enforceable rights or not. Legally she may smoke and drink to an extent that will put her child at risk, whilst acting unethically in the views of many.

Advances of medical understanding and the extent to which they have been shared with the public have both undermined the liberal position. In 1859 the author of On Liberty, John Stuart Mill, could identify such behaviour as a ‘self‐regarding sin’ and defend himself against attacks from a renowned judge, Sir James Fitzjames Stephen, and formidable moralists such as Mathew Arnold. Today such voices are marginalized if not silent. The ethicist certainly recognizes the parental right and duty to take various decisions on their children’s behalf, including the acceptance of certain risks. Thus parents have the right, for example, to take their children on a sailing dinghy provided they do not stray too far from land, that it is not too stormy and there is a life jacket. It is a question of degree, but the acceptance of risk is permissible.

What may raise more troubling ethical questions is the associated demand for an increased share of scarce resources. We already face a shortage of midwives in the UK as we enter an era of rapidly increasing austerity in the National Health Service (NHS). How far is it ethical for a woman to exercise her autonomy at the expense of her sisters who can be handled by fewer midwives in hospital? How far are the advantages of home delivery that were acknowledged by The Lancet editorial – shorter recovery time and fewer lacerations, postpartum haemorrhages, retained placentae and infections – attributable to more intensive one‐to‐one or even two‐to‐one care by more senior midwives in an effort to make the home birth safer?

The shortage of resources has become a more strident voice in this as in all other medical debates. UK Health Ministers used to deny that there was any rationing of resources and such suggestions were seen as political attacks on the parsimony of the Treasury. Today it is the conventional view that the British public is not prepared to pay through the Treasury for the healthcare that it demands through the press, the courts, the regulators such as the Care Quality Commission: where most OECD countries spend over 9% of gross domestic product (GDP) on healthcare, Britain is spending under 8% and the aspiration to increase this figure that was accepted in the 7 years of plenty that followed the publication of the Wanless Report in 2001 seems a distant memory. There is a striking analogy here with maternal mortality in Africa where it is accepted that 80% of maternal mortality could be avoided with a different application of the resources available within those countries.

This development spreads beyond obstetrics and gynaecology. Most aspects of medicine have become safer and more predictable, and as a consequence the relative importance of different ethical obligations upon the doctor has changed. Thirty years ago, when medical ethics was first recognized as having practical implications for mainstream clinicians, it was accepted that there were four different ethical obligations that the doctor needed to balance. The primary obligation was to do good, and that obligation preoccupied the thoughts of the clinicians of the 1970s. They might say ‘first of all do not harm’, but in reality that usually meant take reasonable care and the aspiration to non‐maleficence took second place since it appeared to be of less practical importance in most circumstances. Third was the obligation to act justly, since it was crucial in circumstances where doctors were more responsible for the management of the NHS and therefore the allocation of resources. The modern reader of a textbook such as Ian Donald’s Practical Obstetric Problems (1976) will be surprised by the extent of the advice on how to manage the labour ward effectively. That obligation could cause the accoucheur to hesitate before leaving the labour ward as part of what was then called the Flying Squad. The idea that the patient’s autonomy should be respected came fourth. It was seen as an important part of good manners, but beyond ensuring that the patient signed the right consent form before surgery, it was hardly a fundamental aspiration of the service rendered by the doctor. Women in the 1970s took themselves to a doctor for the treatment of an ailment rather than the exercise of their autonomy.

Today, respect for the patient’s autonomy has grown like a cuckoo in the nest and threatens to drive all other considerations to the margins. A vivid illustration of this was seen in the case of Chester v Afshar involving spinal surgery which came to the House of Lords in 2004 [4]. The court found that Miss Chester was not told that there was a 1% risk of significant morbidity associated with spinal surgery. The defence accepted that every reasonable surgeon would have warned of this risk, which is in itself a striking change since the Sidaway v Bethlem Royal Hospitals Governors case [5] failed on precisely that issue in 1985. Miss Chester said that if she had been told of the risk, she might well have undergone the surgery in any event and very likely in the hands of the same surgeon, but only after obtaining a second opinion. On a conventional analysis, this meant that Miss Chester could not prove that her surgeon had caused her any damage. However, the House of Lords felt that in these circumstances the plain meaning of the English language needed some trifling adjustment. It did so on a twofold basis.

First, that it was of vital importance that Miss Chester’s autonomy be respected, and in circumstances where she was contemplating spinal surgery this demanded that she must be told the risks that she was letting herself in for, otherwise she would be stripped of her dignity as a human being when she disrobed on admission. Second, that if it was not held that the erring doctor became the insurer of the patient’s damage, the duty would be emptied of its content. The law would not be upholding the duty. Thus, in order to enforce the duty the law should hold that in these circumstances the doctor has caused the patient damage. Some felt that there would have been more logic about it if the House of Lords had invented a new tort of Showing Disrespect, or Dis as modern slang would have it, and said that in these circumstances they would order the surgeon to compensate the patient for the complete tort of advising and treating with disrespect; that would have the advantage of forcing the surgeon to compensate the patient for the insult he had rendered, whether or not she was unlucky enough to get a complication which sounded in damages. A minor solatium of £500 would uphold the duty and reflect society’s real evaluation of the insult. Since he had not really caused the complication, it seems illogical to pretend that the law is enforcing a duty to advise that is equally important whether the complication results or not.

Another oddity of the case was that Miss Chester was at no less risk if she opted for conservative therapy. The evidence was conflicting, but some experts thought that she was at greater risk of long‐term disability if she did not undergo surgery. As she was in significant pain preoperatively, she would need to persuade the court that she would have undergone surgery or recovered spontaneously to recover full compensation when her quantum was assessed.

The problem is more acute for obstetricians and gynaecologists than it is for other specialties for a number of different reasons. In gynaecology, apart from cancer, most procedures are designed primarily to enhance the woman’s comfort or reproductive choices. They are truly elective procedures, which the woman must be free to accept or reject on her own terms. In obstetrics, the reduction of maternal mortality and the marginalization of infant mortality have meant that the woman feels that she should be put in a more powerful position. In Montgomery v Lanarkshire Health Board the UK Supreme Court has spelled out the importance of advising on the alternatives, even when no surgical intervention is planned [1].

Abortion

Doctors have been in the front line of the legal control of abortion since R v Bourne in 1938 [6]. There has been thrust upon them a dual role in which they are seen as the servants of the law as well as their patients. Until the Abortion Act 1967 was passed, the doctor who performed an abortion in most circumstances committed a professional offence as well as a crime and would be struck off on conviction. The day the Abortion Act came into force, the medical abortionist ceased to be a criminal and so prosecutions before the GMC ceased. This struck no‐one as odd because the law had been changed by the Queen in Parliament and if abortions were going to be performed lawfully then the GMC had to permit them. The professional offence had been to break the law. Yet the change in GMC policy as a result of the change in the law served to emphasize the fact that the GMC did not impose any distinct medical ethic or code of behaviour as had been supposed since Hippocrates, it simply reflected the law. In this respect at least there was no separate stream of doctor‐made laws controlling the profession and the Oath of Hippocrates might prohibit abortion but it proved to be subordinate to the general law of the land, perhaps a litmus test for much else that has happened in medicine over the 70 years since R v Bourne.

Yet the change in abortion law went far beyond that foreseen by Parliament. When Parliament decided that it should be lawful to perform an abortion when the doctor believed that continuation of the pregnancy would be more hazardous to the health of the mother or other children in the family than the termination of the pregnancy, few realized that this in effect legalized abortion on demand since enough doctors honestly believed that such a continuation would always be more hazardous. In 50 years, no doctor has been prosecuted before the GMC for exploring the limits of this envelope.

The predicament of the obstetrician who is asked to treat a woman for an unwanted pregnancy was made more complicated in 1990. In essence, Members of Parliament (MPs) faced a widespread doubt about the wisdom of the existing law when the new Human Fertilisation and Embryology Act was being debated. A sizeable group of MPs wished to bring down the upper limit for abortion, which was then when the fetus would be capable of being born alive. Others took a more liberal view. The compromise agreed upon was that until the pregnancy has exceeded its twenty‐fourth week, abortion should be available on the existing criteria, which effectively meant abortion on demand, even where the fetus may be larger than those in the adjacent neonatal intensive care unit. Since women do not become pregnant before they ovulate, which on average is not before the fourteenth day of the cycle, this means that a doctor who believes in good faith that the social ground is satisfied may lawfully terminate a pregnancy until 26 weeks from the last menstrual period. I stress that this is untested in court and the conventional view within medicine is that the limit has been set at 24 weeks; however, to sustain that view the court would have to say that the maturity of the pregnancy referred to the time since ovulation.

After that limit, apart from where it is necessary to save the mother’s life or health, abortion is lawful only when the doctor believes there is a substantial risk that the child, if born, would suffer from a serious handicap. Neither ‘substantial’ nor ‘serious’ was defined by the Act. In essence, MPs, who could not agree amongst themselves, decided to leave matters to doctors and women. The doctor was given the power to decide in consultation with the patient when it would be appropriate to perform an abortion. A substantial risk is generally speaking regarded as something of substance, to be taken into account in the organization of one’s affairs. Usually this means less than the balance of probabilities. If that were right, it would be lawful at any point prior to delivery to abort a fetus who, on the balance of probabilities, would be born healthy.

Parliament did not consider such questions as whether the child had to be abnormal at birth or destined to remain handicapped permanently. So we do not know if it is lawful to terminate in the case of Huntington’s chorea, which does not usually afflict a person until the fourth decade of life, or the person born with a surgically remediable lesion.

The intervening years have not been kind to a compromise based upon deference to the judgement of an individual clinician. With the rise of personal autonomy and the decline of medical authority, there is little role for a doctor to decide what is best for a patient and there is much less of a role for a doctor to tell a patient what they must and must not do. If a medical service is available, the assumption is that the doctor must provide it if the patient demands it and it is clinically appropriate. Something of a crunch point was reached in 2004 when a curate of the Church of England recognized in the statistics issued by the Department of Health that a pregnancy had been terminated at 26 weeks where the indication given was a cleft palate. If the lesion was a part of a broader syndrome, that was not apparent in the information published by the Department of Health. The curate complained to the police, who sought guidance from the Royal College of Obstetricians and Gynaecologists (RCOG). The police decided not to investigate further and an application was made for judicial review of that decision. The police agreed to reconsider matters and did investigate with a view to prosecution. Eventually they decided that the evidence available did not enable them to conclude that a prosecution would have a better than 50% chance of persuading a jury that the doctors did not have the bona fide belief that the circumstances of the Act were satisfied.

However, the case triggered a debate around several issues. The first is whether the compromise decided by Parliament was far more liberal than can be defended in view of intervening medical developments. Where advances in ultrasound have made it possible to visualize the unborn child more clearly than ever before, the difficulty in defending a decision to terminate on grounds of cleft lip and palate is harder to justify. The autonomy that the law accords the pregnant woman is based on the recognition that the unborn child is part of her body: this is challenged by the ability to visualize the fetus and watch it moving on ultrasound films that the mother carries on her mobile phone and to interact with it by performing medical procedures for its benefit. Nor does it help that advances in neonatology have brought the age of viability down still further, so that the fetus who is being killed is more often capable of being born alive and of surviving than ever before, often more mature than babies being treated in the critical care unit.

This is something about which obstetricians may provide expert advice to the legislature but must remain essentially neutral. Thus, the RCOG has published the reports of working parties on the extent to which a fetus may experience pain [7] and provided guidance on the termination of pregnancy for fetal abnormality [8], but in neither case is it articulating a moral view to its fellows and members in the fashion in which the Hippocratic Oath bound all doctors not to procure abortion until comparatively recently. However, the RCOG does express strong views about the problems facing the service. Abortion is now the commonest procedure paid for by the NHS, almost 200 000 cases a year, and yet most cases are outsourced to commercial organizations that provide little or no training. Complex procedures are confined to the NHS, but many places expect to face problems in delivering the service when the present generation of seniors retire.

There is a second underlying debate about the role of the clinician. Is the doctor expected to exercise a judgement about whether the procedure is in the patient’s best interests? If so, on what basis? If the indication for the procedure is choice, how can or should the doctor second guess the patient? When Parliament said that it wanted the decision to be taken by doctors and patients together, did it mean that the patient should have complete freedom to decide if the doctor believed that the unborn child would suffer from any recognizable handicap? What is the extent to which it is proper to expect obstetricians to be put in the guise of judges at all in such circumstances? The assessment of the degree of handicap should be undertaken by those appropriately trained for the purpose. Often they will be members of another specialty; in some places such patients are referred to paediatric surgeons for advice, and the RCOG Working Party [8] in 2010 suggested referring to a paediatrician with experience of affected children. I wonder if we will not go further in the future: sometimes the assessment of long‐term handicap might be enhanced by a multidisciplinary assessment involving specialists in neurological disability, physiotherapists, speech therapists or occupational therapists. The effect of a given physical lesion will vary greatly from case to case, depending on the personality of the victim and the resources available, as well as the severity of the lesion. The difficulty is that it is hard to see how such an assessment can be organized swiftly enough when the pregnancy is advancing.

The law here has to balance society’s interest in protecting the autonomy of the pregnant woman and ensuring that she is not forced to carry to term a baby which she does not want. That right has to be balanced against the right of the unborn child; since Parliament has decreed that the unborn fetus has no right, this has to be expressed as society’s interest in protecting the fetus. Few think it appropriate to provide women with an unqualified right to demand the destruction of a normal third‐trimester fetus. The need to balance these issues calls for a political and judicial assessment. Although doctors were placed in the front line, it is increasingly hard to understand what role society allots to them or how it expects them to perform this task. In few other areas of medicine are doctors asked to legislate between conflicting interests in this fashion; and where they have been granted a broad margin of discretion hitherto, as in end‐of‐life decisions, that flexibility is being curtailed.

In these circumstances the individual clinician needs to be aware of the conflicting obligations which are imposed by the law and the demands of patients. My own advice now is that, so far as possible, obstetricians should ensure that they have written objective advice from appropriate specialists on which to base their decisions. In contentious cases I suspect that we will soon advise obstetricians to transfer the decision to the place where it should properly be made, Her Majesty’s Judiciary. At least that way we will get some guidelines. It will be very unfortunate if the first time that any guidelines as to the law’s assessment of the meaning of substantial risk of serious handicap comes to be decided is in the context of a criminal prosecution. Under the law, until 1990 the reluctance of the police to intervene meant that no‐one attempted to find out what ‘capable of being born alive’ meant between its passage into law in 1929 [9] and the advent of a negligence action in respect of an obstetrician’s failure to advise a woman of the failure of an alpha‐fetoprotein test to detect abnormality. The Court ducked the question then and was forced to determine it in 1989 when a radiologist was sued in respect of his failure to recognize spina bifida [10]. Only then was it established that ‘capable of being born alive’ meant capable of maintaining life by means of ones’ own breathing, even though 60 years had elapsed since the Act was passed.

In the meantime, obstetricians should be advised to cover themselves by seeking to buttress their decisions by obtaining the sort of written evidence that a court would demand. That evidence should explicitly answer the statutory questions: Is the risk substantial and would the handicap be serious? The RCOG has recently reiterated its advice of 1996, and until we have guidance from a court on the meaning of the word ‘substantial’ in this Act, it would be wise to err on the side of caution [8]. How a court would interpret the meaning of ‘substantial’ could well determine on the context in which the question was posed. We could get almost any answer, from 20% – on the basis that a substantial risk is one that sensible people would take into account in ordering their affairs – to beyond all reasonable doubt, on the basis that a mature fetus should not be killed unless you are sure it will be handicapped. The latter is perhaps an extreme and unlikely view, but the court could easily demand the balance of probabilities.