Legal Aspects of Medical Ethics

The Right Honourable Dame Elizabeth Butler-Sloss GBE

 

---

We live in a world which is rapidly changing round us in many ways including advances in medical science and technology.  Over the years, innovations in medical science have changed almost beyond recognition our social landscape. From birth to death, and most situations in between, medical advances have transformed our expectations. Children are kept alive in circumstances in which 25 years ago they would have died at birth. The ageing population now enjoys a greater life expectancy than that of past generations; life-saving and life-prolonging technologies have made a profound difference to the treatment options available for the terminally ill. I suggest that the advances of medical science have leapt ahead of our ability to manage them. People who would have died some years ago are kept alive artificially, some of them in circumstances they find intolerable and others who have no understanding of the twilight world in which they survive.

Inevitably, there will be divergent views as to the appropriateness of such treatments. Doctors sometimes disagree with patients and/or their relatives, and patients may themselves disagree with their family and friends. A doctor’s devotion to preserving the life of his patients may conflict sharply with the patient’s own values and wish for a dignified and humane death. 

These conflicting values bring into sharp focus a tension between two fundamental principles enshrined in our law: the sanctity of life, and the individual’s right to self-determination or, as it is sometimes called, personal autonomy. From time to time the courts are required to resolve the clash between these two principles in a variety of situations. The attempt to do so raises moral, ethical and legal considerations.  

In the time available I propose to look, briefly, at life and death situations affecting babies, competent adults including pregnant women and teenagers.

 

The Sanctity of Life

The sanctity of human life is a principle accorded profound respect in our society.  It predated the implementation of the European Convention on Human Rights but is now enshrined in Article 2. It is reflected in the seriousness with which the crimes of murder and manslaughter are treated by the courts and by the public. It is not however an absolute right and has also to be seen in the context of respect for the individual human being and the right to self-determination and may have to give way to the right of the individual patient to have control over decisions affecting his medical treatment. For those without the capacity to make decisions the test is the best interests of the patient, whether a child or an incompetent adult. Best interests may not lead in every case to preserving the sanctity of life.

Babies

Babies and young children do not, of course, have the capacity to make decisions about their treatment and generally such decisions are made by their parents or other carers. The courts are only involved in exceptional cases where the family and the hospital trust are in dispute over treatment. The test applied by the judges is based upon the welfare of the child which, by statute (Children Act 1989) is the paramount consideration. The courts are faced from time to time with tragic cases of babies born with serious physical and/or mental disabilities, often unlikely to survive more than a few months. The question then arises how hard should the doctors strive to keep the child alive by, for instance, resuscitation. Usually the parents want the child kept alive at all costs. In some cases where the doctors and the parents are unable to agree over the outcome for the child, an application is made to a judge of the High Court Family Division.

The first consideration is the sanctity of life. An example of how this principle prevailed was the case in 1981 of a Down’s Syndrome baby born to elderly first time parents. She had a life-threatening intestinal obstruction which could be cured by a simple surgical intervention. The child’s parents and the medical team thought it would be kinder to let the child die than have her live as a physically and mentally disabled person. A nurse told social services who made the child a ward of court and sought the court’s order that the operation be performed. The parents submitted that “nature had made its own arrangements to terminate a life which would not be fruitful, and nature should not be interfered with”.  At first instance the judge upheld the parents’ wishes. On appeal however, the Court of Appeal held that, as it had not been demonstrated that the life of a Down's Syndrome child was such that the child should be allowed to die, that the operation should be performed. [Re B (A Minor)(Wardship: Medical Treatment) [1981] 1 WLR 1421].  Nowadays it would be unlikely that a court would even consider letting a Down’s Syndrome baby die.

In some cases involving children, the broader assessment of the child’s welfare or best interests may weigh against medical treatment and the application of the principle of the sanctity of life.  A child’s ‘best interests’ may be determined by a range of factors.  In the case of Re T (Wardship: Medical Treatment) [1997] 1 FLR 502, the Court of Appeal considered the case of a child born with life-threatening liver defect.  Without a liver transplant, it was thought that the child would not live beyond the age of two.  The parents, who were both well-informed health professionals and devoted parents, decided they did not want their child to undergo a liver transplant operation because a previous operation at 6 months had been unsuccessful and had caused the baby distress; the proposed operation would have caused the child great pain and distress, it had associated risks, offered no guarantee of success, and further operations might well have been necessary. The parents moved overseas, and the Local Authority applied for an order to force the parents to return to England and let their child have the operation. At first instance the judge granted the local authority’s application and ordered the mother to attend hospital for transplant assessment. On appeal, the Court of Appeal reversed that order, stating that the prolongation of life is not the sole objective of the court.  It was decided that it was not in the child’s best interests to undergo major invasive surgery with which the mother did not agree but, over many years, would have to bear the brunt of the child’s care, and that the child’s welfare would be better served by letting his parents make their own decisions about his future treatment. By way of postscript, in the result, the parents did decide to let the child have the operation, the child recovered and appears well and thriving. I was sent a beautiful photo of a happy 3 year old.

More recently there have been two similar cases, Baby Charlotte (Re Wyatt (A Child) (Medical Treatment : Parents Consent) [2004] EWHC 2247 [2005] 1 FLR 21.) and Baby Luke [unreported], where the medical prognosis for these very seriously disabled and brain-damaged children was a few months of life and resuscitation would not prolong life by more than a few weeks or months and would be of little benefit to either child. In neither case according to the medical evidence would the baby ever be able to leave hospital or lead a normal life. In each case the parents would not accept the prognosis and went to court. The cases were heard by different High Court judges and each judge held that there was no benefit to the child in medical or surgical intervention which would be likely to cause pain or discomfort and would have only a brief palliative effect. The sanctity of life did not require intrusive surgical treatment which did not benefit the child. Baby Luke died soon after. Baby Charlotte has survived and the judge appears to have modified his orders to allow a greater degree of medical intervention than previously. Charlotte however from my reading of the judgment will continue to have multiple physical and mental disabilities for whatever period of life remains to her. There is question mark in my mind as to the value to the child of the commitment of the parents to her survival. There is now a 17 month baby on a ventilator whose future is about to be decided by a family judge.

One of the most difficult cases to come before the English courts raised a host of ethical, religious and legal questions, the conjoined twins who shared a single heart. The strain on the single heart was such that the babies would both die unless separated in which case the weaker twin would die in the course of the operation. The parents came from Gozo, an island near Malta, and were advised by their Church to let nature take its course. Nonetheless they came to England for the complicated operation to be performed in an English hospital. Court proceedings were instituted to try to stop the operation going ahead which came before a Family Division judge and the Court of Appeal. (Re A (Children) (Conjoined Twins) [2001] 2 WLR 480). One of the major issues was how to resolve the rights and welfare of each child since they were in conflict with each other. The weaker twin was being kept alive by the stronger twin but to save the life of the stronger twin by an operation would be to kill the weaker twin. It was suggested in argument that this would amount to the murder of the weaker twin. The Roman Catholic Church was allowed to intervene. After much heart searching the Court of Appeal held that, in balancing the welfare of both children, the only one with any chance of survival was the stronger twin and her welfare overrode that of the weaker twin who would die shortly in any event. The operation was performed and the surviving twin is doing well.

In each of the cases which come before the High Court the welfare of the child is uppermost in the decision process. Welfare does not necessarily coincide with invasive medical or surgical treatment. There is a balance between the preservation of life and the infliction of pain and distress beyond that which is in the best interests of the child and the balance may fall in favour of palliative care.

Personal Autonomy

A fundamental element of English common law is the right to make decisions for and about oneself and, as all doctors know, no competent adult can be treated without his consent. To do so is to commit the tortuous act of assault. In many hospitals spouses or other members of the family of competent patients have been asked to sign a consent form to the treatment of the patient.   It is a waste of paper although it may be intended to head off litigation by the family if the operation is unsuccessful.  This respect for the right of the individual to personal bodily autonomy confers a great degree of freedom to individuals to choose whether or not to accept the advice of the medical profession even when the decisions are not in their best interests.  The principle of self-determination can prevail against the better judgement of the medical profession.  An often cited comment by Lord Donaldson, MR was that “the patient’s right of choice exists whether the reasons for making that choice are rational, irrational, unknown or even non-existent.”

Competent Patients

The starting point is therefore, that patients are entitled to make their own decisions about proposed medical treatment until and unless shown to be lacking the mental capacity to do so.  The courts resolve the question of capacity by asking: firstly, is the person able to comprehend and retain information material to the decision being made (ie, about whether or not to have the treatment)? and second, is the patient able to use that information and weigh it in the balance as part of the process of making the decision? The competency of the patient is to be assessed in light of the nature and gravity of the decision being made.

Deciding whether a person has competence, or “capacity”, is not always easy or clear-cut. A person may be entirely competent; partially competent; temporarily incompetent or permanently incompetent.  For example, a person sectioned under the Mental Health Act may still be competent to make his own medical treatment decisions including whether or not to have life saving treatment. 

I give you two examples from patients sectioned under the mental health legislation.

The first was a man who had serious septicaemia and the doctors decided he had to have his leg amputated.  He however was adamantly opposed to the operation, and was prepared to accept death as a consequence of keeping his leg.  He would, he said, rather die with two feet than live with one.  The judge found that despite being partially incompetent in other respects, this patient met the legal test of competency in respect of this decision, and accordingly he said the patient’s decision must be respected. In the event he recovered and retained his leg.

I had a case of a patient who had been convicted of murder by assisting others to die. In his case his assistance extended to putting a noose over the neck of several other men and pulling tight the rope. He was sent to Broadmoor where he tried to continue to give the same assistance to other Broadmoor patients and was transferred to a high security prison. In order to persuade the authorities to return him to Broadmoor he cut his leg with a piece of the lavatory pan in his cell and infected it. He refused medical treatment and the prison authorities applied to the High Court for a decision whether he was competent to make the decision not to be treated. Although he qualified as a mental health patient he knew exactly what he was doing and was clearly competent to make the decision not to be treated. As soon as he was found competent he then asked for medical help.

From time to time well-meaning doctors may strive over-enthusiastically to keep a patient alive. From this have flowed situations in which the doctors faced with a patient who does not want to undergo surgery or intrusive medical treatment assume a lack of competence in the patient when the alternative to that treatment may be his/her death. This might, in some circumstances, be understandable but it is legally incorrect.  The court, and the doctor, must not ask ‘What would I do?’, but can instead only ask ‘What does this patient, who is capable of making decisions, want?’.  The approach is a subjective one, and allows for the subjective nature of experience.  The simple fact is that not all competent people choose to be kept alive; and to refuse to be kept alive does not automatically make one incompetent.  This is an extremely difficult area:  on the one hand the legal issues can be very simple; on the other hand the moral consequences they raise can be very difficult to accept.

Several years ago, a woman known as Ms B (Re B (Adult: Refusal of Treatment) [2002] 2 FCR1; [2002] 2 All E R 449) came to the court seeking a declaration that her hospital, by refusing to follow her instructions to withdraw her artificial ventilation, was acting unlawfully. Ms B presented herself as an able and talented woman of 43 who through a devastating illness had become tetraplegic and who no longer wished to be kept alive by means of artificial ventilation. She was, as all the doctors agreed at the court hearing, quite clearly mentally competent although the Intensive Care Unit originally refused to acknowledge it. It took her a year to get to court. Once there, the legal decision was obvious, that her right to choose must be respected. She said in evidence that she was a Pentecostal Christian but this illness had dented her belief. She was a most impressive woman and I had rather hoped she might live and inspire others but given the choice to which she was entitled she required the ventilator to be turned off. 

There is therefore no right to keep a patient alive by artificial medical treatment such as a ventilator or the giving of a blood transfusion against the decision of the patient not to receive such life-preserving treatment. On the other hand, English law does not recognise a “right to die”.  This distinction was shown, quite dramatically in the case of Mrs Pretty who suffered from an advanced form of motor neurone disease and was unable to do anything for herself. She wanted to end her life but required the help of her husband to do so. Although suicide is no longer a crime in English law, assisting a suicide is a crime (Suicide Act 1961 s.2). Mrs Pretty and her husband asked for assurances from the Director of Public Prosecutions that Mr Pretty would not be prosecuted if he caused her death. The Director refused. Mrs Pretty took her case through all the tiers of English courts including the final court of appeal, the House of Lords, and to the European Court of Human Rights.  All the courts, including the European Court, were sympathetic to the plight of Mrs Pretty but upheld the decision of the Director of Public Prosecutions (Pretty v UK (2002) 35 EHRR 1).

One of the arguments advanced by the lawyers for Mrs Pretty was that her right to self-determination encompassed the right to choose when and how to die. The European Court said that the purpose of the Suicide Act was to protect the weak and vulnerable, especially those not in a condition to take informed decisions against acts intended to end life or to assist in ending life. For the few circumstances in which assisted suicide might be appropriate, it said, the Director had a discretion not to prosecute, and the court had a discretion in the sentence it imposed.

The result of these cases is that the individual has the right to make decisions for himself about his own death, and the right to instruct others to refrain from treating him, but he does not have the right to ask for anyone else’s assistance. In this way the law makes a somewhat technical but absolutely fundamental distinction between a failure to treat (which is termed an “omission”), and a positive act designed to bring about a person’s death. The former is permitted, but the latter is not.  In one sense it is difficult to justify the decision in Miss B since someone else had to turn off the artificial ventilator. It was however treatment to which she did not consent and which she was not obliged to receive. Mrs Pretty had the misfortune not to be kept alive by artificial means.

Ms Pretty’s case highlighted the need for us, as a society, to ask ourselves what is best to be done about these cases.  How are we to be the kind of humane society we want to be, whilst at the same time respecting such fundamental principles as the protection of life, and the protection of the vulnerable?  In my view it is extremely difficult to strike a balance in these cases. On the one hand the law’s compromise (based on the act-omission distinction) could be said to lack a degree of reality.  Some might say that it seems rather false to distinguish between the termination of artificial ventilation and the giving of an injection. Indeed, it may seem that the consequences of allowing the former but prohibiting the latter may be inhumane.

A line does however have to be drawn somewhere unless we accept euthanasia. There are strong Christian reasons against euthanasia. I also feel very strongly that we should not embark on euthanasia legislation since it is in my view open to abuse careful though the Joffe proposed Bill is to narrow the situations when it could occur. The risks of getting it wrong are unthinkable. There are very real dangers of unacceptable pressure being placed upon elderly people by their families, friends or others to bring their lives to a premature end.  Some societies have felt able to handle the risk and we now see a few English people going to Holland or Switzerland to have their lives brought to an end.. There was a recent heartbreaking case of the woman GP who went with her family to Switzerland which many of us saw on television.  I believe we have to accept the tragedy of  those individual cases in order to protect the elderly and vulnerable in society.

In one sense the Ms B case lacked complexity: we might not like someone’s decision, but we are obliged to respect their right to make it.   There is an added moral dimension where the decision of one person may affect the welfare of another.  A particular instance is that of women who refuse caesarean operations.  In a case called re S the then President of the FD was criticised for making a decision at exceptionally short notice and without proper argument that an operation should be performed that afternoon on the mother of four children who refused a caesarian operation on religious grounds when she was unable to deliver her fifth child normally. After the successful operation the mother went home to her husband and four elder children delighted with the new baby. She and the baby would have died without the caesarean. In a later case, a woman with a needle phobia who refused a caesarean operation was held by the Court of Appeal to lack full capacity and her objections were set aside. She then agreed to the operation.

The case which has set out clear guidelines on this issue is Ms S v St Georges Healthcare Trust.  Ms S saw a GP at a very late stage of pregnancy and was found to be suffering from severe pre-eclampsia. She was strongly advised to go to hospital and have a caesarean. She refused and expressed the intention of having the baby in a barn in North Wales with no medical help. She and the child almost certainly would have died and she was sectioned under the mental health legislation. She underwent surgery, protesting. Two days later, after being found by the hospital consultant psychiatrist to have full capacity she left hospital without the baby, but she was later reunited with it. She brought judicial review proceedings and the Court of Appeal held that the hospital had no right to retain her in hospital or to carry out the operation without her consent. 

The legal position is now clear. A woman with full mental capacity about to give birth to a viable child is able to refuse treatment although the refusal would result in the death of herself and/or the unborn child. The decision rests with her alone.  Since, in English law, the child is not a legal person until birth, there will not be any competing rights. In the light of the Court of Appeal decision in the case of Ms S the decision of the President was clearly wrong although the outcome was a happy one for the mother, the father and the five children. 

The logical position based on the right of self-determination of the adult is clear but the application of the principle raises ethical dilemmas. On the one hand to require women who are competent to undergo invasive surgery without consent is unacceptable. On the other hand for a woman with the capacity to make informed decisions in the last stages of pregnancy of a viable foetus to make a decision to deny that unborn child the opportunity to be born raises disturbing issues beyond the religious ones.  I find this a profoundly disturbing dilemma.

Teenagers

The question of the competence of adolescents to make their own decisions about medical treatment raises some very difficult problems which have not yet, I would suggest, been fully resolved. I recently attended a Nuffield Trust seminar at which we discussed the right of teenagers to refuse medical treatment advised by the doctors.

The present legal position is that by the Family Law Reform Act 1969 a child over 16 may consent to surgical, medical or dental treatment despite the parents’ refusal to consent. Interestingly there is no equivalent statutory right to refuse treatment. This remains a grey area. Looking at the issue logically there would seem no reason not to give the right to refuse treatment to a young person who has the right to consent. In reality it is not the same. I would draw the distinction between the teenager consenting to the treatment advised by a doctor whom, I assume, one can trust to giving that advice in the best interests of the young patient and the refusal by the teenager to consent to treatment against the advice of his/her medical practitioner which may or may not be well-informed.

The refusal of treatment, particularly surgery or chemotherapy by a teenager, is likely to occur in hospital. Disputes between parents, children and hospital trusts occasionally have to be resolved by a High Court judge. The judge has to balance the personal autonomy and rights of the teenager against the sanctity of life. The starting point for the judge in the case of a teenager would be the same as any child case to preserve life if to do so was in the best interests of the child and in the reported life and death cases that has, I believe, always been the decision.  The question arises, however, in modern times as to how far that approach is consistent with the growing appreciation of the right of some adolescents to make their own decisions   I propose to give you some examples of the problems which have arisen.

In cases of anorexia, if it is severe, the girl may have lost a degree of capacity to evaluate the outcome and the court has decided that the doctors should take steps to keep the young person, generally a girl, alive.

There was a case, I believe, of a girl from this area, who was 15 and needed a heart transplant. Her family supported the medical team but she was opposed to receiving the heart of someone else and felt she would become that other person. The court directed the operation to go ahead and it was successful.  There have been a number of cases of children from Jehovah Witness families who have needed blood transfusions, which, you know, are contrary to their religious beliefs.  In all of those cases, even including teenagers, the courts have, I believe, directed that the child should receive the life saving blood transfusion. In one case, a mature and thoughtful Jehovah Witness haemophiliac boy of over 16 told the judge who visited him in hospital that he would not accept blood transfusions when he was 18 and why was the judge keeping him alive against his wishes.

An interesting distinction was drawn at the Nuffield seminar between the right of a teenager to refuse to continue treatment which had been unsuccessful such as another transplant or further chemotherapy and the refusal to accept life saving treatment with reasonable chance of success such as a heart or kidney transplant. It was suggested that more weight should be placed on the decision of the teenager in the former situation than the latter. I agree with that conclusion and feel that the courts may have to accept and are increasingly likely to accept decisions from mature teenagers with considered reasons for not accepting the recommended treatment where the prospects of success are not high and/or such treatment has already been given without great success.

Conclusion

I have raised a number of problems in life and death situations which arise from time to time in the hospitals and in the courts. The answers are not easy and the ethical dilemmas will remain for the medical profession to manage. The task of the judge in these cases is often much easier than that of the doctors. I believe they are also issues about which the wider public should be informed and upon which they should reflect.