Law at the limits of life: children, welfare and best interests

Law at the limits of life

Children, welfare and best interests

2.1 Conflicts in the clinic: the case of Charlotte Wyatt

Charlotte Wyatt was born on 21 October 2003, three months prematurely. She was brain damaged and had severe problems with her lungs, heart and kidneys. In the first 10 months of her life, Charlotte had to be resuscitated three times. The medical opinion was that she would be unlikely to see or hear, would not develop neurologically and that her existence was, to her, intolerable. By September 2004, she was almost completely reliant on a head box, which supplied her with oxygen, in order to survive. Portsmouth NHS Trust, which was responsible for Charlotte’s care, approached Hedley J in the High Court for a declaration to the effect that it would be lawful to withhold artificial ventilation should Charlotte suffer a fourth crisis. Charlotte’s parents, who were hoping for a ‘miracle born of divine intervention’,2 contested the application, arguing that she should be given the chance of life (perhaps even the chance to return home) and they made their position known in the national media.

At the first hearing in October 2004, Hedley J ordered that it would be lawful, in her best interests, for the paediatricians to decline to intubate and ventilate Charlotte, although CPAP (continuous positive airway pressure) could be administered in order to keep her airways open and ease her breathing, unless this caused her visible distress.3

A few months later Hedley J was asked to stay these declarations, in view of perceived improvements in Charlotte’s condition.4 Her reliance on the head box, for example, had slightly declined and she could spend periods outside of the box, albeit with the support of a face mask. Yet, despite such improvements, Hedley J felt that the orders could remain. He recorded the court’s ‘delight’ at Charlotte’s improvements and emphasised the strong presumption in favour of preserving life.5 However, the doctors’ duty was still to act in the best interests of the child ‘as and when any crisis might arise’ and Charlotte’s condition implied that she would be unlikely to ‘survive such aggressive or invasive treatment’.6 Indeed, he was concerned that the removal of the orders might encourage ‘wholly false expectations’.7

The doctors did not expect Charlotte to survive the winter, and yet in April 2005 Hedley J was observing: ‘in dealing with a child you can rarely be certain. Children do not stand still; they develop or regress’.8 Charlotte certainly seemed to have developed well: her oxygen requirements had further declined and she had become increasingly responsive to her environment and stimuli. But, as the judge put it, ‘her neurological condition remains about as bad as it could be’.9 Medical experts still maintained that Charlotte would not be able to withstand invasive efforts to deal with a respiratory crisis, given her severe chronic lung disease coupled now with malnutrition, which resulted from ‘her low tolerance of food’.10

Hedley J was again persuaded that artificial ventilation should not be offered. The chances of such ‘futile aggressive treatment’ restoring her to her current condition seemed slim and would most likely either threaten her chance of a peaceful death or return her to an ‘intolerable’ existence.11 He decided that an anticipatory declaration could be made, given the intractable (and seemingly ‘volatile’) nature of the disagreement between the parents and the health care team,12 and the fact that the nature of the crisis was ‘fairly precisely anticipated’.13 He felt his declarations should nevertheless remain subject to review and, if or when the crisis came, it would remain the doctors’ decision, in consultation with the Wyatts, to determine what ought or ought not to be done.

Charlotte was still alive in September 2005, when her parents went before the Court of Appeal, in which Hedley J’s decisions were upheld.14 Delivering the judgment of the court, Wall LJ undertook an exhaustive examination of the law pertaining to best interests, including that concerning incompetent adult patients, with the aim of providing guidelines for future judges that were ‘as clear and as simple as is consistent with the serious issues which they engage’.15 He felt it was ‘nearly always a matter of regret’ when cases like the present one had ‘to be conducted in a courtroom, rather than a hospital or a consulting room’.16 When that happens, however, the test is indeed the best interests of the child. This test involves examining the issues ‘from the assumed point of view of the patient’ and working from the (rebuttable) presumption that life should be preserved.17 Medical, emotional and other welfare issues are included in the consideration and the court should undertake a balancing exercise, which might involve drawing up a ‘balance sheet’ of harms and benefits.18 Like Hedley J, the Court of Appeal felt that the notion of ‘intolerability’, whilst a ‘valuable guide’ to making the assessment, ‘should not be seen either as a gloss on or a supplementary guide to best interests’.19

Each case had to be decided on its specific facts and, turning to this particular case, Wall LJ felt that Hedley J had proceeded appropriately in issuing ‘permissive, not mandatory’ declarations, which were amenable to review, and he noted that the Trust was also keeping its decision not to reventilate Charlotte under review and that this would be ‘discussed with her parents before it is implemented’.20 Wall LJ discouraged any belief that ‘open-ended’ declarations should be sought or that the court should be viewed as a ‘general advice centre’ since it is ‘not the function of the court to oversee the treatment plan for a gravely ill child. That function is for the doctors in consultation with the child’s parents… The court’s function is to make a particular decision on a particular issue’.21 Although he disapproved of the Wyatts’ occasionally ‘less than helpful’ conduct (such as reporting the doctors to the police), he recognised the strain they were under and was encouraged by the news that their relationship with the Trust was improving. He hoped, then, that a treatment plan could be agreed at the next hearing.22

The case thus returned to Hedley J, with the trust now seeking a declaration to the effect that the doctors would have the final say in the event of a further dispute with the Wyatts. Hedley J felt that a ‘novel’ declaration of this sort was not required.23 A doctor is obliged to act in the best interests of the patient, working ‘in partnership with the parents’.24 There may be occasions when parents and doctors disagree, on reasonable grounds, and in such situations the final decision might rightly be left with the parents.25 Yet, clinical judgment can comprise an intellectual dimension and a ‘professional conscience, intuition or hunch’,26 and the clinician cannot be compelled to act contrary to his or her conscience (although another professional might not be so troubled and might thus be willing to act). This, thought Hedley J, provided sufficient protection for Charlotte’s doctors.

Four months later the case was back before Hedley J for another (and, for our purposes, final27) hearing.28 Charlotte had been able to return home for visits but her condition had now deteriorated considerably: she had developed a cough and was apparently suffering from a viral infection. Intubation and ventilation looked likely to be the only available intervention if her condition continued to decline, and her parents (who had by now separated) felt that this would lead her to recover, although the doctors unanimously felt it would be futile and contrary to her best interests. Hedley J issued another ‘permissive and not mandatory’ declaration that ‘at the moment the decision arises to be taken the medical authorities are required to use their best judgment in Charlotte’s best interests as to whether they desist’ from intubation and ventilation.29 By the end of 2009, Charlotte had reportedly been out of hospital for two years and living in foster care, where she was learning to walk.30

2.2 Best interests, welfare and the law

Charlotte Wyatt’s case, whilst remarkable, is but one in a substantial body of jurisprudence, which has its roots in the criminal law and yet which has grown to occupy a distinct field of medical (or, more broadly, health care) law, gaining sustenance from family law, tort law and human rights law along the way. The central question in cases like Charlotte’s is whether life-sustaining measures can be withdrawn or withheld from a patient incapable (currently or perhaps ever) of expressing their views on the matter. Distinct jurisdictions are available, depending on whether the patient in question is an adult or child, and the judges have also developed specific bodies of case law, relative (for example) to the disorder with which the patient is afflicted. Particularly notable are those rulings pertaining to the more severe disorders of consciousness, specifically the persistent vegetative state (PVS).31 Yet, despite the existence of such distinctions, the standard which is used to determine the outcome in all of these cases is essentially the same: the decision turns on the ‘best interests’ or welfare of the patient.32 It is instructive, therefore, to consider in some detail how the courts have interpreted and applied this standard across a range of cases in which the denial of pills, tubes and even cups and spoons is in issue. We start, in this chapter, with those rulings concerning critically ill minors, which extend from newborns like Charlotte Wyatt to older children and adolescents like David Glass, whose case opened the previous chapter.

2.2.1 Criminal beginnings?

The law that governs Charlotte’s case can be traced back to reports, many emerging in the 1970s, that treatment was routinely being withdrawn or withheld from severely disabled neonates. In 1973, R.S. Duff and A.G.M. Campbell reported that 43 of the last 299 consecutive deaths in the special-care nursery in which they worked were as a result of the denial of treatment.33 As they summarised in 1980:

All of the 43 babies were afflicted severely by one or a combination of conditions: congenital anomalies, prematurity, birth injuries, and assorted acquired maladies. Even with maximal, heroic treatment, most had a very poor chance of survival beyond a few hours or days. Thus, treatment, often abusive and always expensive, also seemed futile. In addition, all were believed to have a bleak or hopeless outlook regarding quality of life. These facts coupled with concerns about financial and other family burdens prompted parents, physicians, nurses, social workers, clergymen, and others involved in deciding care to view treatment as imprudent. As we knew was common practice, life was preferred to the end for most and death was accepted for a few. There were some inescapable feelings of doubt about the decisions in both cases.34

Duff and Campbell were not alone: for example, other professionals revealed that 23 of 24 babies at one centre had been sedated and denied food, with the result that all were ‘pushed into death’,35 while an unnamed paediatrician wrote in The Lancet of offering parents ‘some help in hastening the end of a life’.36

The issues first came before the courts in 1981, when, in Re B (a minor) (wardship: medical treatment) [1981] 1 WLR 1421, the Court of Appeal considered the future of Alexandra (B), a newborn with Down’s syndrome and an intestinal obstruction. Surgery could remedy the obstruction, but it would otherwise prove fatal. Although there was some disagreement among her doctors, Alexandra’s parents believed that the operation should not be performed. Ewbank J concurred, but his decision was reversed by Templeman LJ, who felt that the judge had been overly concerned with the parents’ wishes, when his duty was to consider the child’s best interests. Authorising the operation, Templeman LJ stated that the court must:

… decide whether the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die, or whether the life of this child is still so imponderable that it would be wrong for her to be condemned to die.37

Alexandra was likely to be severely mentally and physically disabled, but (as Templeman LJ regrettably put it) she would not be a ‘cabbage’.38 He left open the possibility that a different conclusion could be reached where ‘severe proved damage’ meant the child’s life was ‘bound to be full of pain and suffering’.39

Following the ruling, Glanville Williams, the renowned criminal law scholar, speculated that a murder charge might result from any case not fitting Templeman LJ’s exception.40 Certainly, there was prior precedent which confirmed that failure to fulfil a duty to care for a dependent could result in a homicide conviction.41 Indeed, investigations were mounted in response to concerns expressed by special interest groups such as the Society for the Protection of Unborn Children and Life about the practices of doctors, including Drs Garrow and Jolly.42 However, it was ultimately to be Dr Leonard Arthur who came before a court.

R v Arthur (1981) 12 BMLR 1 involved a paediatrician who had prescribed an appetite suppressant (dihydrocodeine) and ordered ‘nursing care only’ for a newborn rejected by his parents. John Pearson – who, unlike Alexandra, had been born with apparently ‘uncomplicated’ Down’s syndrome – died 69 hours later. When evidence emerged suggesting that the baby might have died from natural causes, the charge was reduced from murder to attempted murder. The prosecution alleged that the case notes and treatment chart, along with the administration of the appetite suppressant, evidenced an attempt to kill. The defence contended that this was a (passive) ‘holding operation’, revocable if John’s mother changed her mind. Furthermore, it was claimed that the administration of the drug was not evidence of an intention to kill: it had been directed at the relief of distress.

Summing-up, Farquharson J noted that selective non-treatment was ‘accepted by modern paediatric thought’,43 and he made repeated references to Arthur’s good character and ‘noble motives’.44 But, he admitted, ‘[t]here is no special law in this country that places doctors in a separate category and gives them extra protection over the rest of us’.45 He saw the law as distinguishing between, on the one side, unlawful practices such as murder and, on the other, lawful practices including administering analgesics (even if death might result) and refraining from sustaining the life of a child with an ‘irreversible handicap’. It was for the jury to decide where Arthur’s case fell; if Arthur’s conduct amounted to a ‘holding operation’, ‘then he would not be guilty’.46 After deliberating for only 124 minutes, the jury returned to acquit Arthur. The Attorney General saw no need to refer the case to the Court of Appeal, since he perceived no conflict with established principles of homicide law,47 and the Director of Public Prosecutions announced that no similar prosecutions were being considered.48

2.2.2 Civil proceedings?

Dr Arthur’s trial was effectively the last time that such a case would be heard in the criminal courts.49 Taking their prompts from Re B, the civil courts led the way thereafter, starting with Re C (a minor)(wardship: medical treatment) [1990] Fam 26. C, who was four months old, was hydrocephalic, blind and probably deaf, with severe cerebral palsy of all four limbs. Without sedation she cried as if in pain. Medical opinion was unanimous that there was no chance of improvement. On the central issue, the Court of Appeal agreed with Ward J that treatment could be withheld from C, since treatment was not in her best interests. C’s best interests, as understood in the light of Re B, were the paramount consideration. However, Ward J had ‘failed to express himself with his usual felicity’ when he gave leave ‘to treat the minor to die’; this ‘misleading phrase’ was removed, as were references to the specific treatments that might be withheld (such as naso-gastric feeding and antibiotics).50

In C’s case, the courts exercised their inherent (or wardship) jurisdiction, which meant that C was made a ward of court. Many of C’s successors followed the same course, despite the fact that the year in which C’s fate was determined – 1989 – also brought the Children Act. This Act sought to provide a comprehensive framework for tackling a multitude of issues pertaining to children, including medical treatment. Central to the Act is the welfare principle, according to which the welfare of the child ‘shall be the court’s paramount consideration’, and the court shall have particular regard for (inter alia): the ascertainable wishes and feelings of the child concerned (considered in the light of his or her age and understanding); the child’s physical, emotional and educational needs; age, sex, background and any characteristics which the court considers relevant; any harm the child has suffered or is at risk of suffering; and how capable the parents and other relevant parties are of meeting the child’s needs.51 The Act empowers a court to make a variety of orders, such as the ‘specific issue order’,52 in circumstances where ‘it considers that doing so would be better for the child than making no order at all’.53 The Act also introduces the notion of ‘parental responsibility’, which encompasses ‘all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property’.54 It is the person with such responsibility who may, for example, consent to medical treatment on behalf of a minor.

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