Law at the limits of life: adults, incapacity and precedent autonomy

Law at the limits of life

Adults, incapacity and precedent autonomy

[T]he principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so… To this extent, the principle of the sanctity of human life must yield to the principle of self-determination… and… the doctors’ duty to act in the best interests of his patient must likewise be qualified… Moreover the same principle applies where the patient’s refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it…

Airedale NHS Trust v Bland [1993] 2 WLR 316 at 367F–G (Lord Goff)

3.1 Conflicts in the clinic: the case of Terri Schiavo

English law has encompassed a variety of complex situations concerning the treatment of – and removal of treatment from – incapacitated adult patients. However, the world’s attention was most recently captured by a case from another jurisdiction, in which the conflicts were particularly acute. The case, concerning Terri Schiavo, provides a useful starting point, since it illuminates the main areas of legal (and ethical) contention that can arise, including in our jurisdiction.

On 25 February 1990, Mrs Schiavo, who was 26 years old, collapsed in her home in Florida, suffering severe hypoxia (deprivation of oxygen) for some minutes. She had been dieting and may have been bulimic: her husband Michael later won a malpractice lawsuit against the obstetrician treating his wife’s infertility who had failed to diagnose bulimia as its cause. On arrival at hospital, Mrs Schiavo was intubated and ventilated. Given her inability to swallow, a percutaneous endoscopic gastrostomy (PEG) tube was also subsequently sited.

Four months after the injury, Mrs Schiavo was judged incompetent and Michael was appointed her legal guardian, to which his wife’s parents, Mary and Robert Schindler, did not object. Terri had not appointed a surrogate decision-maker (proxy or attorney) and neither had she formally executed an advance directive indicating her views should she lose the capacity to make treatment decisions for herself.

Within a year of the injury, Terri Schiavo was diagnosed as being in a persistent vegetative state (PVS). PVS is a disorder of consciousness in which the patient is wakeful but unconscious. The condition tends to be labelled as permanent when it has persisted for more than one year, although other terms have recently been proposed, such as ‘post-coma unresponsiveness’ and ‘unresponsive wakefulness syndrome’.1

The family worked with each other and with a range of health professionals – including physical, speech and occupational therapists – in an effort to rehabilitate Mrs Schiavo, but to no substantial effect. After his wife contracted a urinary tract infection, Michael requested a ‘do not resuscitate’ order,2 seemingly having concluded that his wife’s condition would never improve and that further treatment or intervention was no longer warranted. The Schindlers resisted this conclusion; from here the relationship they had once enjoyed with their son-in-law deteriorated considerably.

In stark opposition to his in-laws, Mr Schiavo felt that the nutrition and hydration being provided to Terri by tube should be stopped. Around this time, he voluntarily relinquished his guardianship role, preferring that the court provide an independent judgment as to what should happen.3 In January 2000, a hearing was held to determine Mrs Schiavo’s condition and, in the absence of a specific advance directive executed by the patient herself, to determine what her wishes would have been with regard to life-prolonging treatment. Both sides presented witnesses, with Mrs Schiavo’s parents arguing that their daughter had been a Roman Catholic, who would have shared the Church’s opposition to the withdrawal of treatment, on the basis that this could be interpreted as ‘euthanasia’. Michael argued that his wife had made verbal statements to the effect that she would not want her life continued in this condition. Having confirmed that Mrs Schiavo was in a PVS, the judge preferred Michael’s view, and ordered that the PEG tube be withdrawn.4 In what became known as Schiavo I, the Florida Appeal Court confirmed this decision:5 in line with Florida law, it found there was ‘clear and convincing evidence’6 that Mrs Schiavo would choose ‘a natural death’ over continued treatment.

The Schindlers continued to resist the position taken by their son-in-law and the courts. They unsuccessfully petitioned to have oral feeding instated,7 and also failed to have Michael removed as guardian,8 when they argued that his decision to move Terri to a different hospital was a waste of funds.9

On 24 April 2001 Terri’s feeding tube was withdrawn, only to be reinstated on 26 April, amidst a flurry of legal activity (known as Schiavo II) in which new arguments were heard about Terri’s apparent wishes and her medical condition.10 The latter issue then became the focus of Schiavo III, when the appellate court granted the Schindlers’ wish that their daughter’s situation be re-examined. Five medical experts were to be appointed: two nominated by Terri’s parents, two chosen by her husband, and one independently assigned by the court.11

After conducting new tests plus a review of the evidence to date, three of these experts (all neurologists) confirmed that Terri was in a PVS; the remaining two (a neurologist and a radiologist), who were appointed by the Schindlers, concluded that she was in a minimally conscious state (MCS) and could benefit from alternative rehabilitation techniques. A disorder of consciousness distinct from PVS or the locked-in state, the patient in a MCS retains limited conscious awareness.12 Six hours of videotape of Terri was provided to the judge, who ruled that she was indeed in a PVS and unlikely significantly to improve. Mindful that ‘medicine is not a precise science’, Judge Greer was nevertheless particularly critical of the Schindlers’ experts.13 In what became known as Schiavo IV, the Appeal Court upheld Judge Greer’s decision to authorise the withdrawal of the feeding tube, finding that he had reached his conclusion according to ‘a cautious legal standard designed to promote the value of life’.14

On 15 October 2003, the feeding tube was withdrawn for the second time. However, within a week, it was back in place, when Florida’s Governor, Jeb Bush, passed ‘Terri’s Law’, according to which he had authority to intervene. Further litigation ensued, regarding the rights (or lack thereof) of Terri’s family in relation to this new law and, moreover, its constitutional validity. Almost a year later, the Florida Supreme Court found the law to be unconstitutional.15

By the beginning of 2005, Terri Schiavo’s case was known internationally. Her parents continued to petition the courts, in particular seeking a swallowing therapy and a functional magnetic resonance imaging (fMRI) test,16 which Judge Greer declined to permit, since he doubted the appropriateness of the experimental therapy and the accuracy of the medical evidence provided.17

On 18 March 2005 Terri’s feeding tube was withdrawn for the third and final time. At this point the legal picture became even more confusing, as the United States Congress intervened, with what became known as the ‘Palm Sunday Compromise’, according to which jurisdiction over the Schiavo case was passed from the state to the federal courts. President George W. Bush flew back from a vacation to sign the Bill into law in the small hours of 21 March. The legal saga effectively ended in the Supreme Court, with its ruling that the Schindlers had exhausted their legal options.

Terri Schiavo died on 31 March 2005, surrounded by police officers, who were present to ensure that no attempts were made to provide her with food or fluids. The autopsy ruled out bulimia and cardiac arrest as the causes of her death, which was certified as ‘undetermined’.18

3.2 Best interests, incapacity and precedent autonomy

Terri Schiavo’s case, and the substantial litigation it initiated, is undoubtedly remarkable, but the issues at stake are uncomfortably familiar across the (developed) world. Acute dilemmas like these respect no geographical boundaries: wherever life-sustaining techniques and technologies exist, legal and ethical anxieties attend questions concerning their initiation and continuation. Such questions were first considered by a court in the case of Karen Ann Quinlan, who (like Schiavo) was in a PVS.19 The New Jersey Supreme Court authorised the removal of a ventilator at the request of Ms Quinlan’s father, who was empowered to decide on the basis of his daughter’s assumed wishes. Ms Quinlan unexpectedly survived the withdrawal of ventilation, and lived for another decade before succumbing to pneumonia. Throughout this period,she continued to receive nutrition and hydration via a feeding tube. As we saw in Mrs Schiavo’s case, it is usually the discontinuance of this life-sustaining measure which is at issue in these difficult cases. Thus, the parents of Nancy Cruzan took three years to convince the American courts that their daughter would not want this life-support to continue.20 Two decades later, in Italy, Eluana Englaro’s father saw a successful end to 17 years of attempting to persuade the judges, during which time – again, as in Schiavo’s case – there was political intervention from the highest levels, including by the Italian prime minister Silvio Berlusconi.21

Despite the geographical spread, there are clear similarities in the ethical and legal principles at stake in these cases,22 which (as the statement from Lord Goff quoted at the beginning of this chapter attests) English law also shares. As with children, a central consideration will be the best interests of the patient. But many of these cases introduce another concept, through which we might give substance to that assessment or which we might see as a stand-alone concept. This concept can be described as ‘precedent autonomy’, which here encompasses two types of decision: the ‘advance directive’ (‘living will’ or some other alleged synonym); and the appointment of a proxy decision-maker (surrogate or healthcare attorney). In either case, the autonomous person is seeking to make provision for a future in which his or her autonomy has been lost. Before we consider what it means to lose autonomy in English law and how one might attempt to provide for such a future, we will first trace those cases in which the decision to treat (or not) turns on the perceived best interests of the incapacitated adult. The jurisprudence begins, as will we, with patients in a PVS.

3.2.1 Best interests and the persistent vegetative state

In April 1989, aged 17, Anthony Bland was trapped in the crush of people at the Hillsborough football stadium disaster. He suffered a punctured lung, which resulted in his brain being deprived of oxygen. Like Terri Schiavo one year later, Anthony was ultimately diagnosed as being in a PVS, and as such – despite following sleep-wake cycles – he was judged to be unaware and insensate, and highly unlikely ever to recover. After three years, his doctors and his family decided to approach the courts for a declaration that it would be lawful to discontinue life-support, including nutrition and hydration, which was being provided to Anthony via a naso-gastric tube. The case, Airedale NHS Trust v Bland [1993] 2 WLR 316, reached the House of Lords, where permission was granted.

Deprived of the power to decide on a patient’s behalf,23 the Law Lords focused on the legal duties of the doctors. According to the majority, artificial nutrition and hydration (ANH) – or, in today’s terminology,24 clinically assisted nutrition and hydration (CANH) – is a form of medical treatment. Medical treatment is intended to benefit the patient; it is directed at serving the patient’s ‘best interests’. The Bolam test,25 according to which reference may be made to a responsible body of medical opinion, can guide this assessment. Here, a responsible body of doctors agreed that existence in a PVS did not benefit the patient and that further treatment or care could be considered ‘futile’.26 Anthony Bland was to be considered alive, both clinically and legally, and although English law recognised the sanctity of human life, the Lords held that this was not an absolute principle.27 Neither could it be complained that the doctors would be murdering Anthony Bland: the mens rea (or ‘mental’ element) of the offence – the intention to end life – might be present, but the actus reus (or ‘physical’ element) was not. Stopping feeding amounted to an omission, which would only be culpable where there was a duty to feed. The necessity to feed (which arose from Anthony’s inability to consent or refuse on his own behalf28) had gone and so, accordingly, had the justification for doing so. The duty – perhaps even the entitlement29 – to treat was therefore absent, so there was no prospect of criminality, a point which was subsequently confirmed when a Reverend Morrow attempted (unsuccessfully) to obtain a summons charging Anthony’s doctor with murder.30

Despite its familiarity and influence, the Bland ruling is not easy to pin down. The essential message seems to be: although doctors will owe a duty to treat their patients, the withdrawal of life-sustaining treatment in the form of CANH will not be unlawful where a body of responsible medical opinion finds continued treatment not to be in the patient’s best interests, which means that they are released from the duty. The Law Lords certainly found the case challenging, calling on Parliament to consider the issues,31 and instructing that future such cases should come before the courts, at least ‘until a body of experience and practice has been built up’.32

Although there were varying estimates of between 170 and 1500 PVS patients in the UK,33 it was a year before the Court of Appeal considered the next case, which concerned a dislodged gastrostomy tube. Frenchay NHS Trust v S [1994] 1 WLR 601 was unusual, given its urgency, the lack of independent medical opinion and the uncertain diagnosis. Upholding the decision not to reinstate the tube, Sir Thomas Bingham MR held that S was in a PVS and that the Bland guidelines had been followed as far as was practicable. He felt that the urgency of a case might sometimes preclude a thorough investigation or even time to come to court, although he noted that it remained the judge’s task ultimately to determine the best interests of a patient like S.

Hinchliffe, from the Official Solicitor’s office, doubted that Frenchay would recur, given the requirement – confirmed in a Practice Note [1994] 2 All ER 413 – for an independent medical report.34 As this and subsequent Practice Notes stated,35 the diagnosis had to be made according to the most up-to-date criteria.36 The court had also to hear evidence (where available) of the views of the patient and the patient’s next-of-kin. These latter views need not be determinative, as Ward J indicated in Swindon and Marlborough NHS Trust v S [1995] Med L Rev 84, in which he considered whether surgical reinsertion of a feeding tube was warranted for a patient being cared for at home. Sir Stephen Brown P also had cause to consider the issue in Re G (persistent vegetative state) [1995] 2 FCR 46, since G’s wife supported the withdrawal of ANH, but his mother did not. He concluded that the treatment could be withdrawn: the mother’s view was relevant but not decisive and this was certainly not ‘equivalent to euthanasia’ as she claimed. Brown P directed that these cases could be heard in open court, in view of the public interest questions at stake, but that anonymity should be preserved (including beyond the patient’s death).37

1995 proved to be ‘a busy year’,38 with the courts confirming that ANH could be withdrawn from two patients referred to as B and another dubbed C (whose case was widely publicised, since his condition resulted from an anaesthetic accident39), and that ventilation could be removed from Daniel Coe. The following few years tended to see one or two cases a year coming before the courts (W and D in 1996; L in 1997; MM in 1998).40 Although their task remained difficult, the judges’ approach was by now relatively settled. However, the cases did sometimes introduce new features: for example, in one case from 1995, the court referred to the supportive opinion of the patient’s flatmate, as well as her family’s views.

Yet, while the law appeared increasingly clear, the clinical picture was – and is41 – not always so. Reports of recovery from PVS and misdiagnosis featured in the medical42 and the popular press.43 After the ‘near miss’ of Frenchay, the courts again narrowly avoided these issues in 1995, when an independent expert found that a patient known as G had sufficient capacity to be able to indicate her desire to continue living. G’s family had supported the withdrawal of treatment, recalling G’s previously expressed wish that her life not continue in such a state.44

By 1997 the dilemmas could no longer be avoided. However, despite the patient in Re D (medical treatment) [1998] 1 FLR 411 failing to satisfy two of the diagnostic criteria for PVS, Brown P found her to be lacking any ‘real possibility of meaningful life’,45 and he ruled that it would be lawful not to reinsert her feeding tube. He did not think that this extended the law.46 The President then reached the same conclusion in Re H (a patient) [1998] 2 FLR 36: despite retaining some rudimentary awareness and thus failing to meet the PVS guidelines laid down by the Royal College of Physicians, it was in H’s best interests that life support be withdrawn.

1998 also brought the Human Rights Act and a challenge to the reasoning developed in Bland and its progeny. In NHS Trust A v M; NHS Trust B v H [2001] 2 WLR 942, Butler-Sloss P ruled that the Act did nothing to affect the legality of withdrawing life-support from PVS patients. Article 2, the right to life, would not be violated by the withdrawal of life-support where treatment was futile or not in the patient’s best interests, as determined by a responsible body of medical opinion.47 Article 8, which was seen to protect ‘the right to personal autonomy’,48 would only be violated where what was proposed was contrary to the incompetent patient’s best interests;49 thefamily’s views might be relevant here,50 but the patient took priority and, in any event, the family members and the doctors happened to agree that treatment should be stopped in the present case. There could also be no objection on the basis of Article 3: not only did responsible medical opinion support the proposed course,51 but the patient in a PVS was not sensate and so could not be aware of suffering any inhuman and degrading treatment.52

Shortly after this ruling, Butler-Sloss P had cause to consider another apparently doubtful case, NHS Trust A v H [2001] 2 FLR 501, in which (as also occurred in Terri Schiavo’s case) a neurologist had thought that minimally conscious state (MCS), rather than PVS, was the more appropriate diagnosis. However, other eminent experts found no evidence of awareness (and the neurologist’s opinion appeared also to change), which led the judge to conclude that H was indeed in a PVS. Noting the support of H’s carers and family (who also felt that H herself would not have authorised ongoing treatment), Butler-Sloss P ruled that the (perishing) PEG tube need not be replaced. She further opined that the trust might have considered attending court ‘rather sooner’ than it had.53

After H came G, who had been unresponsive in the nine months since she had sustained severe anoxic brain damage following surgery. Relying wholly on the evidence of one medical expert as to G’s condition, the court in Re G (2002) 65 BMLR 6 decided that nutrition and hydration could be withdrawn. Like H, G had (reportedly) also declared that she would not wish to live in such a condition and her family supported the Trust’s application to court. This was also the case in NHS Trust v I [2003] EWHC 2243, where Butler-Sloss P concluded that the patient should be permitted ‘to die with dignity’,54 rather than continue to exist ‘in a twilight world’.55

Trust A, Trust B, Dr V v Mr M [2005] EWHC 807 – in which the withdrawal of ANH from M was authorised at a time when Terri Schiavo’s plight was before the American courts and assisted dying was before the English Parliament – is particularly notable for the clarity Hedley J sought to bring to the court’s calculation of a patient’s best interests:

Considering this last dimension, Hedley J candidly admitted that the case before him ‘stands close to concepts of euthanasia, and stands close to the fence which divides natural consequences from deliberately brought-about death’.57 The judges, he argued, should ‘stand sentry at the fence’ and assume responsibility for these questions of life and death, since ‘the court, as a publicly accountable body, is the proper repository of this responsibility rather than doctors and rather than the family’.58

The courts would soon acquire new responsibilities, since 2005 also saw the passing of the Mental Capacity Act, which was to come into force in 2007. The Act provided a new framework for the (non-)treatment of incompetent adult patients, including a revitalised Court of Protection. Central to the Act is the best interests test,59 which is given statutory expression for the first time (for adults). The precise variables that should make up the calculation are not given, although the Act does instruct that, ‘so far as is reasonably ascertainable’, reference should be made to the person’s ‘past and present wishes and feelings’, the ‘beliefs and values’ that would be likely to influence their decision, plus ‘any other factors’ they would be likely to consider if they were capable.60 A decision to withdraw or withhold life-sustaining treatment in a patient’s best interests would remain lawful, provided it was not ‘motivated by a desire to bring about… death’.61 As a Practice Note and the accompanying Code of Practice made clear, there remained the requirement to come to court (now the Court of Protection) when the removal of CANH from a patient in a PVS was contemplated.62

The 2005 Act evidently did not abandon the prevailing jurisprudence and,of course, there was still work for the judges to do before the Act came into force. In the next case, An NHS Trust v D [2005] EWHC 2439, numerous members of the patient’s family disagreed with the doctors, who wished to withhold CPR, antibiotics or other ‘invasive steps’ from D, who they felt was likely to die within a year.63 D’s family detected some awareness and communicative ability in D, which the doctors interpreted as (only) reflexive. Siding with the doctors, Coleridge J ruled that D:

While D’s case differed from many of its predecessors in concerning interventions other than CANH, a more marked variation was to come with B NHS Trust v J

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