The issue of when it is acceptable to remove a brain-damaged patient from life-support has again come before the courts – this time in the case of a baby whose parents wanted to persevere with treatment.
In NHS Trust v Baby X & Ors  EWHC 2188 (Fam) (30 July 2012) Mr and Mrs X’s baby son was born in 2011. In 2012 he suffered a catastrophic accident that resulted in chronic, profound and irreversible brain damage. Neither parent was in any way culpable: it was “nothing more nor less than a wholly unforeseeable disaster” (para 2). The staff of the hospital had concluded that it was no longer in X’s best interests to remain on artificial ventilation because no improvement was to be expected.
The parents opposed that view on three grounds: that X should be given every chance to improve, that they believed that signs of improvement were discernible and that the tenets of their faith (unspecified, presumably to help preserve their anonymity) prevented their consenting in the present circumstances to a course which would almost inevitably lead to death. They made it clear – and Hedley J accepted (para 4) – that those views were their own and not the result of pressure from family, community or religious leaders:
“They come from a faith tradition in which the obligations of parenthood are clear: they are to give lifelong care to X whatever in fact the burden cast upon them of doing so may be. They were, however, able to appreciate the distinction between their duties as parents and the assessment of what actually is in their son’s best interests” (para 16) and “whilst their religion permits a parent in certain circumstance to consent to the withholding or withdrawal of treatment, even though death ensues, no such circumstance arise in this case…” (para 18).
In Wyatt v Portsmouth NHS Trust  1FLR 554:  EWCA Civ 1181 (12 October 2005), Wall LJ, giving the judgment of the Court of Appeal, had identified (at para 81) six “intellectual milestones” on the road to a decision in such situations:
- the judge must decide what is in the best interests of the child;
- in doing so, the child’s welfare is a paramount consideration;
- the judge must look at it from the assumed point of view of the patient;
- there is a strong – but not irrebuttable – presumption in favour of the course of action that would prolong life;
- “best interests” encompass medical, emotional and all other welfare issues; and
- the court must conduct a balancing exercise in which all relevant factors are weighed.
In the present case Hedley J set out the problem as follows (paras 23 to 25):
“… The legal route is marked with milestones and the lodestar of decision making identified. The next task is to the address the issue of X’s welfare.
That assessment must be the court’s independent assessment but it must be one that looks at all relevant issues from the assumed point of view of the patient; a necessary but necessarily artificial exercise in some ways it may be thought. Yet it is rightly so required for X is a human being of unique value: body, mind and spirit expressed in the unique personality that is X. It is important that “quality of life” judgments are not made through other eyes for “quality of life” may weigh very differently with different people depending on their individual views and aspirations. A life from which others may recoil can yet be precious.
At the same time preservation of life, however important, cannot be everything. No understanding of life is complete unless it has in it a place for death which comes to each and every human with unfailing inevitability. There is unsurprisingly deep in the human psyche a yearning that, when the end comes, it does so as a “good death”. It is often easier to say what that is not rather than what it is but in this case the contrast is between a death in the arms and presence of parents and a death wired up to machinery and so isolated from all human contact in the course of futile treatment.”
For reasons which he set out in detail (para 28), he concluded (para 29) that X should in future be treated on the basis of palliative care only. He stressed, however, that that was not an order of the court but a declaration that so to treat X would be lawful as being in the baby’s best interests. The treating team had to satisfy themselves that that remained the case when they decide to withdraw ventilation and/or decline any other aggressive, invasive treatment.
Comment: In such a tragic situation comment is almost superfluous: such cases must always be fact-sensitive and the facts in this one speak for themselves. However, there is evidently a degree of controversy within the medical profession about the weight that should be given to the religious views of parents in such circumstances. A paper in the Journal of Medical Ethics by two consultants and the chaplain at the Paediatric and Neonatal Intensive Care Unit, Great Ormond Street Children’s Hospital – which has only recently been picked up by the press – expresses concern that:
“… deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen.”.