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The best interests test at the end of life on PICU: a plea for a family centred approach
  1. D Inwald
  1. D Inwald, Paediatric Intensive Care Unit, 7th Floor, QEQM Building, St Mary's Hospital, Imperial College Healthcare NHS Trust, Praed Street, London W2 1NY, UK; David.Inwald{at}imperial.nhs.uk

Abstract

Approximately 80% of deaths in paediatric intensive care units occur as a result of a decision for limitation or withdrawal of life sustaining treatment, which in English law must be made with reference to the best interests of the child. However, as factors included in the best interests assessment depend on the subjective view of the decision maker, the test is not objective. Furthermore, the test is individualistic, in that only the child’s interests are considered, ignoring the interests of others. Additionally, there is an element of absurdity as only those who are alive can be said to possess interests and any decision resulting in death will result in loss of all interests along with loss of life. These criticisms could be largely addressed by taking into account the interests of others, particularly the interests of close family members.

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In 2005, 14 022 children under 16 years old were admitted to a paediatric intensive care unit (PICU) in the United Kingdom. Of these, 701 (5%) died.1 Of these deaths, up to 80% occurred as a result of a decision to apply a “do not resuscitate” order or to limit or withdraw life sustaining treatment.2 Reasons given by health professionals for such decisions include expectation of imminent death, poor quality of life, poor prognosis, “disproportionate burden” from therapy and “lack of benefit”, or futility.3

Whatever factors sway health professionals, in English law, decisions to limit or withdraw life sustaining treatment must be made according to the best interests of the child. Any quality of life consideration is subsumed within this test. However, the best interests test is not without difficulties. As factors included in the test depend on the subjective view of the decision maker, it is not objective. Furthermore, the test is individualistic, in that only the child’s interests are considered. Additionally, there is an element of absurdity as only those who are alive can be said to possess interests and any decision resulting in death will result in loss of all interests along with loss of life.

This paper will first examine the current state of English law, looking at how the present concept of best interests developed. It will then look at two contrasting cases, which illustrate some problems with the best interests test, and examine criticisms of the best interests test in more detail. Finally, it will argue that these criticisms could be addressed by considering factors other than the narrow interests of the child, particularly the interests of close family members.

THE BEST INTERESTS TEST

Although the Children Act 1989 demands that the “ascertainable wishes and feelings of the child” should be considered in any decision relating to a child, most end of life decisions on PICU are made without reference to the opinion of the child. This is because, in general, children on PICU lack capacity. There are a number of reasons for this, including age, underlying medical condition and the drugs necessary for sedation on PICU.

As the child lacks capacity, someone else, a proxy, must make the decision on the child’s behalf. In English law, each of the parents, subject to some conditions, is empowered as a proxy with “parental responsibility”,4 including the right to give consent to and to refuse medical treatment, including life sustaining treatment.

However, in England and Wales, the Family Division of the High Court has overarching authority in any decision regarding a child, although this authority is usually only exercised if the child is a ward of court, or if there is a disagreement between the parents or between the parents and the clinical team as to the best course of action.

The basis upon which the court decides is defined by the Children Act 1989, which requires that “the child’s welfare shall be the Court’s paramount consideration”.5 This is known as the welfare or paramountcy principle and puts the child’s welfare first in such decisions. Although the “child’s welfare” is understood to mean the child’s best interests, the term “best interests” does not actually appear in the Children Act.

Furthermore, in English law, parents as well as the courts should make decisions with the welfare of the child as the paramount consideration. As Lady Justice Butler-Sloss, the previous President of the Family Division of the High Court, has stated, “A space in which parental decisions are final undoubtedly exists, but it exists subject to … the Children Act 1989”.6

However, as Jonathan Herring, an academic legal commentator, has pointed out, “The law makes no attempt to ensure that everything that adults do in relation to children on a day-to-day basis promotes their welfare”.7

Even in life and death decisions, there is usually minimal supervision by the courts. In most cases, parents make decisions for whatever reasons they deem appropriate, often with medical advice but without court interference. Only a tiny number of cases are referred to the courts.

THE BEST INTERESTS TEST AT THE END OF LIFE

The leading case in English law is Re J, in which Lord Donaldson said “a balancing exercise (should) be performed in assessing the course to be adopted in the best interests of the child…”.8 Later cases have led to refinements and additions to this definition. The best interests assessment must now encompass “medical, emotional and all other welfare issues”.9 In making an assessment, the judge should “draw up a balance sheet … to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses”.9 Since Charlotte Wyatt’s case was heard in the Court of Appeal, “potentially contentious glosses” such as “intolerability”, a factor which was alluded to in some of the earlier end of life cases,10 should no longer be used, as they tend “to restrict the broad exercise of the judicial discretion involved in balancing the multifarious factors in the case”.11

This case law definition of best interests along with the Children Act 1989 constitutes the current test which judges must apply in cases which come before the courts.

The advantage of the best interests test is that the court attempts to reach an objective, balanced view, using the available evidence, to determine what course of action would best serve a particular child’s interests. Although the best interests test is thus attractive, and often extremely useful (particularly in cases of neglect or child abuse), it has a tendency to unravel in the context of end of life decisions, as demonstrated by the contrasts between the following two cases.

APPLICATION OF THE BEST INTERESTS TEST IN CHILDHOOD IN ENGLISH CASE LAW: TWO CONTRASTING EXAMPLES

In Re C,12 C was a 16-month-old child with spinal muscular atrophy (SMA) type 1 and normal cognition. She was ventilated in a PICU and had been ventilated for some weeks before the High Court hearing. Her doctors had concluded that it was not in her best interests to continue ventilation and that when ventilation was withdrawn it should not be reintroduced in the event of further respiratory arrest. The parents did not agree. In the Family Division of the High Court, the President, Sir Stephen Brown, held that as in Re J, the decision whether to treat was dependent upon the exercise of the doctor’s professional judgment and should be based on the child’s best interests. He ruled that: “it is in the best interests of C that she should now be taken off the ventilation presently being administered and that it should not be reimposed or restored if she should suffer a further respiratory arrest”.

In contrast, in the more recent case of An NHS Trust v MB,13 the High Court ruled that it was in the best interests of M, a 2-year-old child with SMA type 1, which appeared to be indistinguishable in severity and prognosis from C, to continue to be ventilated. Mr Justice Holman ruled that it “was not currently in the best interests of M to discontinue ventilation with the inevitable result that he would immediately die. It was positively in his best interests to continue with continuous pressure ventilation and with the nursing and medical care that properly went with it”.

Mr Justice Holman’s best interests assessment directly contradicted the unanimous medical opinion that it was in M’s best interests that the ventilation be withdrawn and he be allowed to die, probably “very quickly”.

What could be the explanation for such disparate conclusions in two such similar cases?

One possible explanation could be that the facts of the cases were different. For example, the cases were distinguished based on the fact that the periods of ventilation in the Re C case were only “intermittent”, whereas in An NHS Trust v MB, the child was receiving continuous mechanical ventilation and had been for some time. However, this interpretation appears to be the result of a misunderstanding of the word “intermittent” in “intermittent positive pressure ventilation” (IPPV). At the times of their hearings, both children were continuously mechanically ventilated via an endotracheal tube. C had been ventilated for a period of some weeks prior to the hearing, whereas M had been ventilated for a much longer time. Both NHS Trusts were seeking declarations of lawfulness to withdraw that support and not to reintroduce it in the event of a further deterioration. Thus the clinically relevant facts seem to have been identical – terminal respiratory failure due to SMA type 1 in two conscious children of similar age with normal cognition.

A second possible explanation is the change in the diagnosis and treatment of SMA since the case of C was heard in 1998. A previously unrecognised disease entity, SMA with respiratory distress (SMARD) has now been identified, clinically and genetically distinct to classical SMA type 1, although the prognosis seems to be similar.14 More importantly, some centres (mostly outside the UK) are now advocating long-term ventilation, sometimes via a tracheostomy, in even the severest cases of SMA.15 However, neither of these factors were mentioned in An NHS Trust v MB and do not appear to have impacted upon the judgment.

The final, and most likely, explanation is that there were different subjective interpretations of the situations by the judges. It has already been demonstrated that apparently identical clinical facts were interpreted differently. There was also a differing interpretation of the best interests test.

In Re C, the court made an assessment of best interests based on the medical experts’ advice that treatment was futile and concluded that C was “approaching death”. In its own assessment, the court also relied heavily on (and endorsed) the 1997 edition of the RCPCH withholding or withdrawing lifesaving treatment in children: a framework of practice, which stated “the paediatric neurologist might reasonably withhold ventilator care in a child with progressive respiratory failure from anterior horn cell disease”.16

In contrast, in An NHS Trust v MB, the judge refused to accept that the child was dying, although the clinical circumstances appeared to be identical to those in Re C. Once he had decided that the child was not dying, the interests based approach forced the judge to the conclusion that ventilation should not be withdrawn, as “the burden or disadvantage (of withdrawing ventilation) would … be the inevitable immediate death and loss of whatever benefit M currently gains from life”.

One reason for the differing conception of best interests in the two judgments may be the differing context of 2006, when An NHS Trust v MB was heard, as compared to 1998, when Re C was heard. Following the Bristol heart scandal, the Alder Hey organ scandal and Dr Shipman, neither judges nor the general public are prepared to continue to subscribe to the notion that “doctor knows best”. Indeed, judges have become increasingly willing to challenge medical opinion. In such a climate, perhaps it is hardly surprising that in the case of M, the judge placed more weight on the views of the parents than on those of the doctors, albeit in the name of the best interests of the child. Furthermore, although the parents’ interests were not mentioned in the judgment, which focused entirely on the child’s interests, it is clear that the case would not have come to court were it not for the parental intervention. Thus, the parents’ interests became a decisive factor in the judgment.

The contrasts between the two cases highlight a number of problems with the “objective best interests test”.

Firstly, the best interests assessment is not the objective test it purports to be – the interpretation of the facts and the application of the test by the judge may be extremely subjective. In the academic legal literature, the best interests test is also often criticised for being vague and subjective. Ian Kennedy has pointed out that the “best interests test” encourages a loose approach to decision-making17:

It allows lawyers and courts to persuade themselves and others that theirs is a principled approach to law. Meanwhile, they engage in what to others is clearly a form of ‘ad hocery’. The best interests approach of family law allows the courts to atomise the law, to claim that each case depends on its own facts. The court can then respond intuitively to each case while seeking to legitimate its conclusion by asserting that it is derived from the general principle contained in the best interests formula.

Secondly, in end of life decisions, the focus on best interests, both outside and inside the courts, has become overwhelming. In the 2004 edition of the RCPCH Withholding or withdrawing lifesaving treatment in children: a framework for practice,18 the term “best interests” is mentioned 18 times, “quality of life” twice and futility not at all. Additionally, since Charlotte Wyatt’s case was heard in the Court of Appeal, “any potentially contentious glosses on the best interests test”, such as “intolerability”, can no longer be used.

This focus on interests obliges the judge to come to the absurd conclusion that it is in the child’s best interests to be dead in order to allow withdrawal of life sustaining treatment. “Absurd” is used here in the strict sense of the word – inconsistent with reason or logic. As only those who are alive can be said to possess interests it is not logical to use a test based on interests to come to a decision resulting in death, which will result in permanent loss of all interests along with loss of life. As Mr Justice Holman said in An NHS Trust v MB, “the burden or disadvantage (of discontinuing ventilation) would, in this case, be the inevitable immediate death and loss of whatever benefit M currently gains from life”. Furthermore, if a child is insensate or bordering on insensate, it could be argued (as Lord Mustill argued in Tony Bland’s case19) that such a child has no interests at all. The concept of quality of life is necessary to remove this element of absurdity. However, in the case of a child without capacity, quality of life can only be properly understood in the context of the child’s family.

A final criticism of the best interests test is that it tends to direct the decision maker to do what is best for the incompetent individual, no matter how marginal the benefit or what the interests of others are. In other words, the test is too individualistic – it recommends only the child’s interests are considered. Other people’s interests are ignored, particularly those of parents and siblings, or are only considered in so far as they impact on the interests of the child. This criticism has also been made by academic legal commentators. For example, Helen Reece has argued, “the paramountcy principle must be abandoned and replaced within a framework which recognises that the child is merely one participant in a process in which the interest of all the participants count”.20

CONCLUSION

Children on PICU are not (and often never will be) autonomous and their interests, rather like those of a newly born baby dependent on breast milk, are impossible to separate entirely from those who are usually responsible for their care. However, the current best interests test considers the interests of the child in isolation.

One solution, which has been proposed by Herring, is to adopt a “relationship-based welfare approach”, in which the child’s welfare is understood in the context of a parent–child relationship, “preserving the rights of each, but with the child’s welfare at the forefront of the family’s concern”.7

However, Herring does not consider the interests of siblings and perhaps, therefore, he does not go far enough. Currently, in end of life cases, the interests of siblings are often ignored as the debate focuses on the parents and the child. An extension of Herring’s proposal, to consider the interests of siblings as well as parents when there are life and death decisions to be made, would mean that in such cases children’s welfare would be understood as we understand children’s lives – in the context of a family. Perhaps this could be called a “family-based welfare approach”. Such an approach is not an argument to ignore the interests of the child, nor is it an argument to allow parents to have the final say in all decisions relating to their child. It is, however, an approach which recognises that the interests of a young child are difficult to separate entirely from the interests of other close family members and that in end of life decisions the quality of life of that child can only be properly understood in the context of his family.

Admittedly, such an approach may not make the welfare assessment any more objective than the current best interests test. However, it will make it less individualistic, as other close family members will be considered. It will also make it less absurd, as a decision to withdraw life sustaining treatment for a child will be made on the basis of that child’s quality of life considered in the context of his family, rather than on the flawed logic of the current best interests test.

If the “family-based welfare approach” were adopted as the test at the end of life in PICU, it would be the job of the courts in controversial cases such as An NHS Trust v MB to ensure that the interests of the child, the parents and the siblings are all properly considered and weighed. It is a matter for further debate as to whether, in scenarios in which resource allocation becomes a significant issue, families should be considered as part of a wider society of other families and individuals whose interests should also be taken into account. To paraphrase John Donne, “no child is an island”.

Acknowledgments

I thank Penney Lewis, Genevra Richardson and Simon Nadel for their helpful comments.

REFERENCES

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Footnotes

  • Competing interests: None.

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