Disclaimer: The views expressed are that of the individual author. All rights are reserved to the original authors of the materials consulted, which are identified in the footnotes below.
Introduction
When a child experiences great suffering through continued medical treatment and their condition is unlikely to improve, a court may come to find that it is in the child’s best interests to withdraw or withhold treatment. Such a case, while tragic, may be perceived as morally justifiable because the child’s pain is alleviated. Other cases, however, lie in a moral grey-area where the condition of the child is unlikely to improve but they are also unable to experience any pain due to the nature of their injury. This article seeks to explore some of the possible ethical justifications that may play into a decision to withdraw treatment in these circumstances by reference to the case of NHS Trust v Baby X [1]
NHS Trust v Baby X
In NHS Trust v Baby X, the court had to decide whether to remove a patient from artificial ventilation and begin palliative care. X was a child who had sustained “chronic, profound and irreversible brain damage” after an accident.[2]The extent of his injury was such that X was deemed to have “no consciousness or awareness of self or surroundings”. This meant that he could experience neither pain nor pleasure.[3]The question before the court thus shifted to whether treatment in the circumstances had become futile. The Trust argued in the affirmative and that remaining on ventilation was not in X’s best interests, while the parents argued that treatment ought to be continued. Ultimately, it was held that removing ventilation was in X’s best interests and would thus be lawful.
Value of life
Under this umbrella of considerations, John Keown identified three viewpoints: vitalism, the sanctity of life, and the quality of life.[4]Vitalism is the view that human life possesses “absolute moral value”, so it is never ethically permissible to fail to preserve life.[5]In the case of X, Hadley J noted that life could be maintained (if a tracheostomy took place) and that there was the potential that the child could be looked after at home by the parents.[6]The existence of such a possibility would therefore render the decision unjustifiable according to vitalism.
The “sanctity of life” principle, as understood by Keown, is more lenient, as it does not “[require] the preservation of life at all costs”.[7]This viewpoint necessitates deciding whether continued treatment is worthwhile by weighting possible benefits and burdens. While it may be simpler to determine that discontinuing treatment is worthwhile when it constitutes an obvious detriment to a patient, cases like X do not involve the same element of suffering. Keown argues that futile treatment may be justified on this basis, as “there is no reasonable hope of benefit”.[8]But if life may be prolonged, despite the fact that chances of improvement are negligible, how can continued treatment be deemed not worthwhile?
We can begin to find an answer in Hadley J’s judgement, where he states that the “preservation of life, however important, cannot be everything”.[9]One interpretation of this claim may be that an extension of life lacks meaning if there is no quality of life. A witness in the case opined that “Baby X no longer has the human instinct and desire to survive”.[10]
Where there has been a catastrophic injury, and the patient cannot interact with their environment in any meaningful way, isn’t the quality of life diminished in some capacity?
However, this doctrine should not be used to provide the core justification behind withdrawing futile treatment. As Keown warns, assessing the quality of life involves making a value judgement on human lives based on ‘discriminatory judgements’ and ‘arbitrary criteria’.[11]Therefore, we should turn elsewhere to find justification for withdrawing treatment.
Views of parents
To what extent should the parents’ views be taken into account in decisions to withdraw treatment? The parents in Baby X believed wholeheartedly that their child should be kept on ventilation in case there was a chance of possible improvement, despite medical evidence. One could argue that treatment should continue because the family members would otherwise suffer a significant detriment. Furthermore, the beliefs of doctors are not infallible, and advancements are constantly made in the medical field. Though rare, there have been cases of children showing signs of improvement when allowed to continue treatment.[12]
But this reasoning is greatly problematic. Firstly, the primary consideration of the court is the best interests of the child.
Therefore, the patient shouldn’t be treated as a vessel only existing for the comfort of family members, but as an individual in their own right who should be accorded respect.
This sentiment was seen in King’s College Hospital NHS Foundation Trust v Haastrup, where MacDonald J focused on what the child in question would have wanted, rather than what the parents wanted.[13]Secondly, although the court’s heavy reliance on medical evidence isn’t ideal, it is necessary. The court must take an objective approach towards cases and cannot afford to adjudicate based on near-miraculous outcomes. Thus, although many parents will naturally want the life of their child to be prolonged, the court must still determine what is in the best interests of the child- even if this means discontinuing treatment.
A “good death”
In his judgement, Hadley J referred to the importance of a “good death”.[14]But what is a good death? In the case of X, it was defined as a “death in the arms and presence of parents”, as opposed to being “wired up to machinery and…isolated from all human contact”.[15]The concept has also been echoed in judgments of similar cases; in Haastrup, MacDonald J linked a good death to the idea of human dignity.[16]Terms such as ‘human dignity’ and a ‘good death’ seem like nebulous concepts, but ultimately they seem to relate to intrinsically held feelings about the way most humans would prefer to pass. This seems to present the strongest justification behind the decision to withdraw futile treatment thus far.
Utilitarian considerations
In deciding how withdrawing futile treatment can be justified, we may also consider utilitarian considerations like resource allocation. In a publicly funded healthcare system, resources are finite. Therefore, one could argue it is more efficient to expend resources like equipment, time and money on a patient who has a greater chance of benefiting from treatment. However, judges are wary of bringing in policy considerations into the court. Not only would it be inappropriate as it would go beyond the limits of judicial process, it would also seem to detract from the best interests of the individual child. While the argument of resource allocation may well justify withdrawing futile treatment when looking at the bigger picture of our healthcare system, when discussing individual patients, the same cannot be said without seeming devoid of compassion.
Conclusion
The court is faced with the difficult task of having to decide what is in the ‘best interests’ of the child in question and time constraints mean that a judge cannot delve into unpicking ethical considerations. This article has attempted to explore some of the possible justifications behind a decision to withdraw futile treatment. It appears that no single consideration can provide a satisfactory answer but providing a peaceful, dignified death comes the closest to justifying withdrawal in futile treatment.
Shayahi Kathirgamanathan
Feature Writer
Medical Law & Ethics
SOURCES
[1] [2012] EWHC 2188.
[2] Ibid [2] (Hadley J).
[3] Ibid [12] (Hadley J).
[4] John Keown, ‘The Legal Revolution: From “Sanctity of Life” to “Quality of Life” and “Autonomy”’ (1998) 14 Journal of Contemporary Health Law and Policy 253; Shaun Pattinson, Medical Law and Ethics (5th edn, Sweet & Maxwell 2017) 18.
[5] Pattinson (n 4) 18.
[6] NHS Trust (n 1) [20] (Hadley J).
[7] Keown (n 4) 258.
[8] Ibid 259.
[9] NHS Trust (n 1) [25] (Hadley J).
[10] NHS Trust (n 1) [9] (Hadley J).
[11] Keown (n 4) 262.
[12] BBC News, ‘Tafida Raqeeb: Brain-damaged girl in High Court case out of intensive care’ (10 January 2020) < https://www.bbc.co.uk/news/uk-england-london-51055153> (last accessed 23 February 2020).
[13] [2018] EWHC 127 at [100] (MacDonald J).
[14] NHS Trust (n 1) [25] (Hadley J).
[15] Ibid.
[16] Haastrup (n 13) 109.
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