Pippa Knight: when is a child's life worth sustaining?

Paula Parfitt with her daughter Pippa Knight(Photo: SPUC)

The recent Court of Appeal decision, that five-year old Pippa Knight should have her live-sustaining ventilation removed, now appears due to be implemented following the Supreme Court's refusal to consider any further appeal.

Her mum, Paula, had argued that Pippa could be discharged from a children's intensive care unit to continue her treatment at home. However, the Court of Appeal upheld the earlier High Court judgement which ruled out this option, partly in view of the burdens imposed by her treatment.

Pippa has no consciousness, being in a so-called "Persistent Vegetative State". She is unable to breathe unaided, and probably has no ability to experience either pain or pleasure (para. 32 of the judgement).

The burdens of her treatment include deep suctioning of secretions and "anaesthetic bagging" to introduce oxygen into her lungs under pressure (something which could not be carried out in a home setting). These measures are necessary to counteract blockages caused by secretions and to treat the "desaturation" in her oxygen level, which occurs every one to four hours (paras. 39-42).

If transferred home, Pippa "would need a tracheostomy and gastrostomy ... artificial nutrition and hydration, therapies to protect her bones and muscles, 24 hour nursing care, ventilation, suction, cough assist, turning, proning, and bagging. Prolonging her life by long term ventilation at home would prolong those burdens" (106c). This home-based care would require "a team of between 12 and 15 qualified nurses working in shifts" (49d).

Pippa's mother thought her condition would improve if only she could be cared for at home, but the judge dismissed this view as contrary to unanimous medical opinion (106e). He also found that, since home care would fall far short of hospital standards, it could lead to a "chaotic death" depriving Pippa of dignity in a way that treatment withdrawal in hospital would not.

There is a point of comparison here with the 2018 case in which ventilation was withdrawn from 15-month old Alfie Evans. Doctors from the Bambino Gesu hospital in Rome, to which Alfie's parents were trying to have him transferred, advised that "during the travel Alfie may present continuous seizures due to stimulations related to the transportation and flight; those seizures might induce further damage to brain". The judge concluded that "The journey, self-evidently will be burdensome. Nobody would wish Alfie to die in transit."

In Pippa's case, it was held that any benefits of a return home would have been to her family, but not to Pippa herself (104), since she would have no awareness of them. As the judgement explained, "the assessment of best interests has to be made from the point of view of the child. Pippa's condition renders her unaware of the benefits she brings to others" (85).

The judge recognised Pippa's mum's belief that life-sustaining treatment was "God's law" (56a, 71) but, as far as Pippa herself was concerned, he found that it was not possible to "impute to her any particular ethical, religious, or other values and beliefs" (68), adding:

"In an adult or older child the concept of dignity might be linked to their exercise of autonomy and be a crucial factor in determining what is in their best interests, but that factor does not apply in the case of a young child like Pippa, whose values, beliefs, and wishes cannot reliably be ascertained or inferred" (86, 88).

This factor did, however, apply in the 2019 case of five-year old Tafida Raqeeb, who was allowed by the court to continue receiving ventilation, against the hospital Trust's wishes. The court was satisfied of her "wish to follow a parent's religious practice", having heard evidence that she "had begun to follow Islamic practices, ... with her small prayer mat, encouraging her brother to come and pray with her".

Courts do not generally seem to be influenced by the religious beliefs of parents separately from those of their child. In An NHS Trust v MB [2006], the judge also refused to permit withdrawal of ventilation from 18-month old MB, but said, "I have the utmost respect for the father's religious faith and belief, and for the faith of Islam which he practises and professes. But I regard it as irrelevant to the decision which I have to take and I do not take it into account at all."

But if the court had been able to impute religious values to Pippa, as in Tafida's case, could this have possibly made a difference to its decision?

Comparison with a faith perspective

To compare the court's approach in Pippa's case with reasoning drawn from one faith tradition, we might take last year's Vatican document Samaritanus Bonus, which critiques a utilitarian perspective in which "a life whose quality seems poor does not deserve to continue. Human life is thus no longer recognized as a value in itself" (section IV).

This document insists that essential care for both adults and children includes not only nutrition and hydration but "proportionate respiratory support" (V.2, V.6), while also quoting from a 1995 encyclical of Pope John Paul II to reject the use of disproportionate treatment:

"In the specific case of aggressive medical treatment, it should be repeated that the renunciation of extraordinary and/or disproportionate means 'is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death' [Evangelium Vitae, para. 65] or a deliberate decision to waive disproportionate medical treatments which have little hope of positive results" (V.2).

Even methods to administer nutrition and hydration can sometimes "become disproportionate, because their administration is ineffective, or involves procedures that create an excessive burden with negative results that exceed any benefits to the patient" (V.8).

Reference was made to this principle in the case of Alfie Evans, where the judge quoted with approval a 2017 statement by Pope Francis explaining,

"It is clear that not adopting, or else suspending, disproportionate measures, means avoiding overzealous treatment; from an ethical standpoint, it is completely different from euthanasia, which is always wrong, in that the intent of euthanasia is to end life and cause death".

Looking further back, the same principle was also mentioned by the Court of Appeal in 2000 when it decided that conjoined twins Jodie and Mary could be surgically separated:

"The Archbishop [of Westminster] points out that in Roman Catholic moral theology one is justified in declining 'extraordinary' treatment where the prospective benefits of treatment do not clearly warrant the burdensome consequences it is likely to impose".

It seems reasonably clear from the judgement in Pippa's case that her treatment, owing to the burdens involved, was in effect considered disproportionate, although the court did not use that terminology.

Where the decision contrasts with Catholic teaching, though, is in the other criteria applied by the court, based on guidance issued by the Royal College of Paediatrics and Child Health (RCPCH).

Current RCPCH guidance and its consequences

This guidance allows life-sustaining treatment to be withdrawn not just because of the burdens it imposes, but on two other grounds, both under the heading "Limited quality of life", namely the burdens of the patient's underlying condition and the "Lack of ability to ... derive benefit from continued life".

The Court of Appeal indicated its approval of these criteria in 2017, when refusing to allow nine-month old Charlie Gard to be moved to America for experimental treatment.

Both these two further grounds were also invoked by the judge in Pippa's case.

The fact that Pippa's condition involves serious burdens cannot be denied. Any disability can be looked on as a burden, particularly from other people's perspectives. The RCPCH guidance elsewhere makes the important point that, as the courts have also recognised, "quality of life that could be considered intolerable to one who is able-bodied may not be intolerable to one who is born with disability or has developed long-term disability" (2.3.6).

This vital principle should surely exclude any judgement about the burden of another person's disabling condition which allows withdrawal of life-sustaining treatment, especially given that (as we mentioned earlier) "the assessment of best interests has to be made from the point of view of the child".

Yet the judge held that "Both [Pippa's] ongoing condition and her necessary treatments ... constitute burdens upon her person notwithstanding her lack of conscious awareness" (76).

So, significance was attached to the burdens of Pippa's ongoing condition, though not (as we have seen) to the potential benefits of home care (104, 105, 106d), despite the court's recognition that Pippa had no conscious awareness of either.

From any rational perspective, such quality-of-life value judgements authorised by the RCPCH guidance, when based on the burdens of a disabled person's condition rather than of their treatment, appear incompatible with the same document's rejection of "ableist" thinking.

Judges – and indeed doctors where cases never reach a court – are thus left with the task of reconciling the ultimately irreconcilable.

Turning to the second of the two additional grounds for withdrawal, namely the rather chilling and potentially elastic concept of a "Lack of ability to ... derive benefit from continued life" (3.1.3, p14), we again run up against an apparent contradiction in the RCPCH guidance and - again possibly as a consequence - in the court's judgement.

This guidance articulates the legal principle of the "sanctity of life", whilst going on to permit withdrawal of treatments from children in (for example) Persistent Vegetative States for whom "[e]ven in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them" (p14).

The judgement noted that "The law recognises the inherent value of Pippa's life ..." (84), and also cited as authority a previous judgement containing the statement,

"There is an innate dignity in the life of a human being who is being cared for well, and who is free from pain" (79).

This principled dictum certainly applies to Pippa.

Although the "presumption that life should be preserved" was regarded as "an important factor weighing in favour of continuing [Pippa's] long term ventilation" (71), the judge also looked for - but could not find - any other benefits of treatment (88, 90, 103), such as conscious awareness by Pippa of her environment or experiences, communication, and the pleasures of life including an "ability to enjoy childhood" (64, 72, 76).

But if, as a matter of law, life is considered to possess a "sanctity" (or "inherent value") in any sense, why do we need to look for additional benefits to justify its continuation?

There is after all, a clue in the term "sanctity".

Admittedly, the sanctity of life is not "an absolute" under UK law (as the Supreme Court stated in leading case Aintree Hospitals v James [2013]), insofar as it can be outweighed by other factors such as the right to autonomy. Whilst disproportionate burdens of treatment can more reasonably be seen as another such factor (as in Vatican teaching), it is harder to understand why an absence of any extra "benefit[s] from continued life" should also need to be weighed in the balance along with life's sanctity.

Where the "sanctity of life" is juxtaposed uncomfortably by the RCPCH with permission to withdraw life-saving treatment from a child unable to "derive benefit from continued life", doctors and courts are again left to square the circle.

According to the Vatican's interpretation of "God's law" in Samaritanus Bonus, when rejecting disproportionate treatment we "accept the limit of death as part of the human condition" (section I).

This approach can at least lay claim to rational consistency, and avoids the tortuous mental gymnastics in which doctors and the courts seem forced to engage by the RCPCH's current guidance.

Perhaps if the disproportionate nature (in the court's view) of the burdens of treatment had been the sole criterion in Pippa's case, the outcome may not have been any different. It is, of course, impossible to say.

But there is no escaping the conclusion that, as the Vatican document would put it, Pippa's life has been treated as one "whose quality seems poor" and so - at least partly for this reason - has not been allowed to continue.