Justice KT Desai Memorial Lecture 2017 Law of medicine and the individual: current issues What does patient autonomy mean for the courts? by The Rt Hon Lady Justice Arden DBE1 Every human being of adult years and sound mind has the right to determine what shall be done with his own body… Cardozo CJ in Schloendorff v Society of New York Hospital 211 NY 125, 129, 105 N.E. 92 (NY 1914) 1. PREAMBLE 1. I am greatly honoured to be asked to speak to you in honour of Chief Justice Desai. I have heard many say that he was respected and loved, and that he was well-organised and produced his judgments expeditiously. I have also read that his judgments were always very precise and reflected his erudition.2 It is difficult to think of qualities that are more important in a judge. 2. I am also honoured to be invited as your guest speaker tonight, given that I am a judge in another system, albeit one which has a very close association with your own. In consultation with Justice Manohar, I have chosen to speak about medicine and the law. This is an area that touches on all our lives. I have had to make difficult choices 1 Member of the Court of Appeal of England and Wales. In the usual way, if any question of law discussed in this article comes before me in my judicial capacity, I shall consider the matter afresh. 2 See The Bombay High Court – A Chronicle of Judges and Lawyers (1947-2013) by Mr Arinash J Rana, Senior Advocate of the Bombay High Court. 1 as to the areas to include because there is a bewildering range of topics in this field which could form the basis of a stimulating discussion. 2. INTRODUCTION 3. I am going to discuss patient autonomy, so I need to explain to you what I mean by this term. The idea behind patient autonomy is neatly summarised by the quotation from Cardozo CJ in 1914 that I have put at the top of this article. The idea is not new, but the role the concept plays in the law has changed and that has had a ripple effect, as I see it, and has given rise to new questions. 4. The first proposition I want to advance in this lecture is, in very broad terms, that the common law (as we in England and Wales know it) has recently made a significant swing. It has swung from a tolerance of paternalism (the idea that “doctor knows best”) to the promotion of individualism. I want to show you how that development has taken place in English law. 5. Then I want to pose the question: what are the implications of this development? Has the law yet fully captured the nature of the doctor/patient relationship? Is the law’s acceptance of patient autonomy our final destination in this field, or is patient autonomy in fact merely a more complex idea which means that the current state of the law is just a staging post from which we will have to refine our ideas? A. CONTEXT FOR CHANGE – SPEED OF DEVELOPMENT IN MODERN MEDICINE 6. Why is patient autonomy becoming increasingly important today? 7. Medicine these days is an inspiring subject, and it is much in the news. In October 2017 the world read about the remarkable operation in Delhi in which doctors 2 separated two-year-old twin boys who were conjoined at the tops of their heads. It has also read about the discovery by scientists at Harvard that they could manipulate the order of atoms in DNA. This discovery might enable scientists to rewrite the human genetic code and could eventually treat diseases, such as cystic fibrosis, which are caused by a single error in the human genetic code. There are many other wonderful discoveries, such as the gene-editing tool, Crispr-Cas9, which can be used to scour the billions of letters of genetic code, find their defective genetic target and break the DNA to effectively disable it. Much valuable work is being done by scientists in the UK. Some of the emerging possibilities raise huge ethical problems for doctors and society. Today, where we ask whether it would be ethical to use new technologies, tomorrow people may ask whether it would be ethical not to use them if it were, for instance, to help produce children who would avoid some painful congenital disease or condition. The world is moving very fast in the field of medical science. 8. The breakthroughs in medicine in recent years would have been unthinkable to the previous generation. Of course, medicine does not work in every case and we must all suffer sadness and disappointment from time to time and remember that the science is imperfect. 9. As medical science expands it is bound to intrude more into people’s lives, especially when science can now treat cases that we would have thought in the past only nature could cure. So, advances in science are bringing increasingly difficult cases before the courts. It is little wonder that correspondingly there is a move towards greater patient autonomy regarding the treatment a patient receives. 10. My first example of advances in modern science leading to greater involvement of the law is about the treatment of a person at what the doctors felt was the end of his life. 3 The problem for the judges was in defining the test to apply and in analysing the nature of the step proposed to be taken. This case concerns modern medical science: the doctors were able to keep a patient alive though they considered that he had absolutely no quality of life. 11. The case is Airedale NHS Trust v Bland.3 Young Anthony Bland was a victim of the disaster at the overcrowded football stadium at Hillsborough, UK, in 1989, when 96 people died and 766 suffered injuries. It is said to have been the worst disaster in British sporting history. Anthony Bland had been in a persistent vegetative state (“PVS”) for three years following the accident. PVS means that the brain stem is alive but the patient has no cognitive function. There was no question of euthanasia but the hospital and his family wanted to know whether it would be lawful to withhold artificial feeding and antibiotic drugs because he had no hope of recovery. As Butler-Sloss LJ pointed out in her judgment in the Court of Appeal, the issue was what would be in the patient’s best interests, not whether nutrition could be withheld. Both the Court of Appeal and the House of Lords concluded that artificial feeding and other support could lawfully be stopped where a patient was in PVS with no hope of recovery, provided that responsible and competent practitioners were of the view that it would be in the patient's best interests not to prolong his life because to continue the treatment was futile and would not confer any benefit on him. That was so even though it was known that he would die as a result. As Hoffmann LJ put it in the Court of Appeal, to continue this treatment was as much a choice as stopping it. Moreover, it would not be a criminal act to discontinue life support by withdrawing artificial feeding or other support because there was no duty to continue life in those 3 [1993] AC 789 (House of Lords); [1994] 1 FCR 485 (Court of Appeal). 4 circumstances. As Hoffmann LJ again put it, there was a conflict of moral principles and the law had to show that it had full respect for life but did not pursue the principle of sanctity of life when life was devoid of any real content. 12. My second example is Re A (Children) (Conjoined Twins: Surgical Separation).4 This case concerned a pair of twin baby girls who were joined at the hip but one was dependent on the other for her blood supply. Through the wonders of modern medical science the doctors had a way of separating them but only one could survive. If no action was taken, both would die. Their parents, who were Roman Catholic, refused to agree to an operation because it would result in the death of one of the twins. The hospital considered that the separation should take place and applied to the court for a declaration that it could lawfully carry out the surgery. The Court of Appeal agreed with the hospital. The Court of Appeal recognised that the separation would not be in the best interests of the twin who would die, but the Court had to strike a balance and do what was best for each by considering the worthwhileness of the proposed treatment, having regard to the actual condition of each twin and the advantages and disadvantages which flowed from the performance or non-performance of that treatment. Permitting the operation to go ahead was the least bad option. The one would die not because of the surgery but because her own body could not sustain her life. This case involved many difficult questions about the choice to be made. B. SOCIAL TREND TOWARDS QUESTIONING CLINICAL JUDGMENT 13. This summer, there was a great deal of publicity in the United Kingdom about a baby called Charlie Gard. Charlie was 11 months old. He was on a life support machine 4 [2001] Fam. 147. 5 and terminally ill. He suffered from an extremely rare genetic condition known as encephalomyopathic mitochondrial DNA depletion syndrome. Sadly he had brain damage. His parents wanted him to have some experimental treatment known as nucleoside. This was only available in the USA. The parents raised over £1.3m (12m lakhs in rupees) to enable him to travel there. The wishes of the parents of a sick child are of course of great importance in decisions as to the child’s treatment but in this instance the doctors at Great Ormond Street Hospital in London who were treating Charlie disagreed with the parents’ views. They did not think it was in his best interests to have this treatment. In their view, it was in his best interests that his life-support should be withdrawn: the doctors did not consider that any treatment could reverse this the brain damage he had suffered. So the matter had to go to the court. There was no doubt about the dedication of the baby’s parents. Unfortunately, however, there was a worrying breakdown of trust between the parents and the doctors. There was the obvious question who should make this decision for this unfortunate child – the parents or the doctors? 14. In the end it was the court which had to decide. The issue was solely this: was it in the child’s best interests to have any further treatment? The case went first to the High Court, then to the Court of Appeal, then to the Supreme Court and finally to the European Court of Human Rights (“the Strasbourg Court”).5 The case attracted a huge amount of media interest. In addition, the Pope and the President of the United States intervened to offer their support to the parents. The judge in the High Court found on the evidence that it was not in the child’s best interests to have further treatment and 5 Gard v United Kingdom (Admissibility) (39793/17), [2017] 2 F.L.R. 773. The decision of the Strasbourg Court contains a convenient summary of the other decisions. 6 none of the other courts considered that it should interfere with his decision. The parents then found what they thought was important new evidence and returned to the judge in the High Court, but he ruled that the evidence did not change matters. He made an order that permitted the doctors to allow Charlie to die. 15. There were resources for the treatment of the child in this case, but difficult issues about resources could arise in other cases where treatment is unaffordable in a public health system. The main issue was how far the parents had the right to choose the treatment for their beloved baby son. 2. MY “SWINGOMETER” 16. I am of course going to describe the situation in rather broad terms for the purpose of this lecture. I am going to ask you to make a mental picture of a pendulum. In years gone by, on the night after a general election in the UK, when results were being announced by each Parliamentary constituency, the BBC used to use a swingometer to demonstrate the swing first one way and then another. I am going to ask you to picture the same sort of pendulum in your mind’s eye. My proposition is that, in the law of medicine, the pendulum has swung decisively from paternalism at one end to autonomy at the other. I am using the idea of a swingometer to trace this development of the law. A. THE OLD REGIME: CLINICAL NEGLIGENCE - THE STANDARD OF CARE GENERALLY DEPENDS ON MEDICAL OPINION 17. I am going to call the starting point of the pendulum “the old regime” but, as you will see, it is still the regime which applies in clinical negligence cases today. 7 18. The leading case in the UK is Bolam v Friern Hospital Management Committee. 6 Mr Bolam suffered injury as a result of electro-convulsive treatment which he had agreed to undergo. He sued the hospital and the case was heard by a judge and jury. The hospital had failed to warn Mr Bolam that he could suffer injury during the treatment. When it came to the allegation of failure to warn, the judge told the jury that the material considerations were, first, whether the hospital, in not warning Mr Bolam about the risks involved in the treatment, had fallen below a standard of practice recognized as proper by a competent body of professional opinion and, second, if good medical practice did require warning, whether Mr Bolam, if warned, would have refused to undergo the treatment. Moreover, the judge held that Mr Bolam had to show to the satisfaction of the court that, had he been warned, he would not have taken the treatment. 7 19. The judge instructed the jury: it is not essential for you to decide which of two practices is the better practice, as long as you accept that what the defendants did was in accordance with a practice accepted by responsible persons. 20. In other words, a doctor is not liable in negligence unless no competent doctor would do what he did. 21. The standard of care laid down in this case has generally been approved by higher courts. The decision implies that, when it comes to warning a patient about the possible risks involved in any course of treatment, it is for the doctors to decide what he or she needs to know. It was probably the prevailing view at the time that the medical profession should be in principle be trusted to make the best decision in the 6 [1957] 1 WLR 582. 7 At pages 582-3. 8 patient’s interests. So the general rule is, therefore, that doctors are not liable in negligence if their actions are in accordance with a body of professional body of opinion, even if not all doctors would have agreed with that opinion. 22. The rigour of the rule was modified in a case called Bolitho v City and Hackney Health Authority8 in 1998, so that the body of opinion supporting the doctor’s actions must be a reasonable and responsible body of opinion. A body of opinion that would not withstand logical analysis would not suffice. That is hardly a surprising qualification. With that exception, the low standard set by Bolam continues to apply generally in relation to clinical negligence. The policy behind it would appear to be to avoid discouraging the practice of medicine, or the development of new treatments, and generally to encourage the development of medical science. That policy is not seriously doubted even today. B. PATERNALISM AND PRACTITIONER-PROTECTING APPROACH IN THE LAW ABOUT DISCLOSING RISKS 23. For a long time, the low standard in Bolam was applied to the question of what information the doctor should have given to the patient, when he gave his consent to treatment, about the risks of proposed treatment. Doctors were, therefore, the gatekeepers to information about material side effects. So, for example, in Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital,9 a patient underwent surgery for persistent neck pain. This operation carried a 1-2% risk that there might be damage to the spinal cord. The doctors failed to inform the patient of this risk. She did suffer this damage as a result of the operation, and was left 8 [1998] AC 232. 9 [1985] AC 871. 9 severely disabled. Both the trial judge and Court of Appeal held that the surgeon had followed a practice accepted as proper by a responsible body of medical opinion at that time. They consequently found the surgeon not liable in negligence. 24. The House of Lords agreed. The members of the House of Lords expressed different reasons for their conclusions. Part of the reasoning was that the doctor was the judge of what information should be provided to the patient. It is enough for me to cite a passage from one speech, that of Lord Diplock. He considered whether it would be desirable for the law to move to an “informed consent” view, which arose from American and Canadian jurisprudence, but he concluded that that would not fit within the English law of negligence, and that the courts should not put themselves in the “surgeon’s shoes”.10 C. MID-POINT OF THE PENDULUM’S SWING: GREATER FOCUS ON THE IMPORTANCE OF DISCLOSURE 25. The English courts interpreted this decision narrowly, reflecting an awareness of the increasing importance which was in fact being attached to personal autonomy. The narrow approach is reflected in the decision of the House of Lords in Chester v Afshar.11 There, a neurosurgeon advised a patient to undergo spinal surgery, which carried a risk of causing cauda equina syndrome. The neurosurgeon did not warn the patient of this risk. The patient reluctantly had the operation and the risk occurred. The judge found that, had the warning been made, Ms Chester would not have undergone the surgery at the time she did, but he did not find she would never have undergone the surgery, nor that there was any way of minimising the risk. The judge 10 Page 984 -5. 11 [2005] 1 AC 134. 10