Life sustaining treatment – whose decision?
31 January 2018
Kings College Hospital NHS Foundation Trust v Thomas and others [2018] EWHC 127 (Fam) – read judgment
Updated: The Court of Appeal has now ruled that doctors at King’s College hospital, London, could remove Isaiah from the ventilator that has kept him alive since he was deprived of oxygen at birth and sustained catastrophic brain injury. The judges also refused the parents permission to appeal against this ruling. McFarlane LJ said
This case is not about the parents or their hopes. It is and must firmly be about Isaiah and his best interests.
Parental love is to be cherished by society, particularly when a child is sick. But the “flattering voice of hope” is not always in best interests of the object of that love. So concluded MacDonald J in a recent ruling which has attracted considerable media attention. The judge concluded that it was not in the 11- month old boy’s best interests for life-sustaining treatment to be continued. He was satisfied on the evidence of the court, he said, that the boy, Isaiah, had
no prospect of recovery or improvement given the severe nature of the cerebral atrophy in his brain
and that he would remain “ventilator dependent and without meaningful awareness of his surroundings”
Perhaps with the Charlie Gard publicity in mind, MacDonald J was careful to emphasise the weight of the medical evidence as against the parents’ assessment of the boy’s condition. The publicity sparked by this case has led to visits to the child by other medical professionals. There are some forceful concluding remarks in this judgement about the inappropriate nature of these possible “clandestine examinations”. These are now a matter for the police.
The judge also rejected the argument that the court should hear evidence from “foreign” experts on the approach from which other cultures might approach this question in terms of its ethics and outcome. There was a “world of difference” between medical expertise from abroad and a foreign “expert” who simply takes the view that the medical or ethical approach to these issues in this jurisdiction differs from that in their own practice.
It would be extremely unfortunate if the standard response to applications of this nature was to become one of scouring the world for medical experts who simply take the view that the medical, moral or ethical approach to these issues in their jurisdiction, or in their own practice is preferable to the medical, moral or ethical approach in this jurisdiction.
Background
Kings College Hospital sought a judicial declaration that it was no longer in Isaiah Haarstrup’s best interests for doctors to continue life-sustaining treatment and that he should receive palliative care only. The case arose under the jurisdiction of the Family Court to make a decision on behalf of a child where those with parental responsibility cannot reach an agreement with the treatment team. Although the court is not bound to follow the clinical assessment of the doctors its assessment of the child’s best interests must be based on the medical evidence available.
Although there is a “strong presumption” in favour of the preservation of life, this presumption is not irrebuttable.
Isaiah Haastrup was born in February 2017 and delivered by emergency Caesarean section after rupture of the maternal uterus. He had slipped into the abdominal cavity and was found on delivery to be seriously deprived of oxygen and had no audible heart, no respiration, and no muscle tone. One of the experts explained that the child at this stage was
as near death as it is possible to get and still have heart action started by resuscitation. In former times, he would have been declared a stillbirth.
He was transferred to ICU where he remains to this day.
Arguments before the Court
For a while the child’s parents were reconciled to palliative care but considered on one occasion that his condition had improved. This was when he stopped absorbing the strong anticonvulsant and sedative medication for his continued seizures as a result of diarrhoea. But the medical evidence was that consequent to the reduction in medication the child suffered a “major seizure” and the dose was increased again. There was no evidence that the sedating drugs were responsible for the child’s depressed level of respiratory drive.
The father, who represented himself in this litigation, contended that the material put before the court by the medical team was the product of “cronyism and nepotism”. The judge rejected these allegations in their entirety as “unfair, unfounded and unjustified”. As to Isiaiah’s mother (the first respondent), the judge acknowledged her “manifest” love for the child.
There was plainly a strong religious component to the mother’s view of what should happen in this case. She made clear to me that she is a Pentecostal Christian and thus believes that it is not her right, or indeed anybody’s right, to say who should live and who should die. The mother told me that when “God wants to take a person, he will” and that we all deserve the chance to live.
She stayed away from some of the more “outlandish and unevidenced” claims alluded to by the father (who lives separately) during the course of presenting his case,including allegations of racism on the part of the medical team and attempts by them to visit harm upon his son.
The evidence from the child’s medical team was that the level of brain damage in a case such as his would not be compatible with a life where no connections, visual, auditory or emotional, could be made. Whilst someone at that level of unconsciousness could not be proved to suffer pain, there was no question that any pleasurable sensation could be perceived. Were the child to be put on mechanical ventilation and allowed to go home, as his parents wished, he would suffer from the necessary cleaning of the equipment, since he was unable to clear secretions that accumulate in the airways. As the court heard,
having the trachea sucked out if one is conscious is very uncomfortable and stressful experience
and it has to be assumed that the subject is not spared this stress even if unconscious.
Macdonald J granted the declarations sought by the Trust and rejected the respondent’s application for an adjournment for further consideration of the feasibility of a “home care” package. However, the judge has now granted a stay pending appeal by the family to the Court of Appeal.
Reasoning behind the Court’s decision
The Tony Bland case represented a turning point in the balance between preservation of life at all costs and the best interests of a patient. The focus should be on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it.
If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. (Aintree University Hospital NHS Trust v James [2013] UKSC 67 at [22])
More recently, in the Charlie Gard case, McFarlane LJ elaborated on the paramountcy principle in medical cases. The consideration of an individual child’s best interests
must apply even to cases where parents, for the best of motives, hold on to some alternative view (Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410)
The right to life under Article 2 of the Convention adds little to this debate. Although this provision imposes a positive obligation to provide life-sustaining treatment, that obligation does not extend to providing such treatment if that treatment would be futile in nature and where responsible medical opinion is of the view that the treatment would not be in the best interests of the patient concerned (R (Burke) v The General Medical Council [2005] EWCA 1003).
MacDonald J made clear that nothing in his judgment should allow further delay in the child’s treatment decision that characterised the Charlie Gard litigation (see our posts here, here. and here). No adjournment for consideration of specialist evidence was necessary, he said, as Isaiah did not have any form of blood disorder or cancer. Rather, he laboured under the effects of a “catastrophic neurological insult.”
As such, it was “plain” that the specialism of the preferred oncologist expert would not assist in this case, any more than evidence from different cultural practices abroad that were not sanctioned by the 2011 Guidelines for the Instruction of Medical Experts from Overseas.
Related posts:
General reading:
Admissions: a Life in Brain Surgery by Henry Marsh
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whatever way you dress it up it’s still g-men rubber stamping other g-men decisions/ dictats, which i find entirely unacceptable. same with anything from car repairs to financial decisions…you can take advice, seek opinions from as many people as you like…but ultimately it’s your decision…and in the case of a child it’s the parents’. ONLY time Courts need to become involved is when they disagree and that needs to be done quickly, within 24 hours or not at all as time is always a major factor here….like int he case of Charlie Gard…..they got ‘their way’ regardless simply because of the time delay. I’m also pretty sure that solely within the UK not EVERY single doctor would agree…..
But like with everything it just comes down who is prepared to be most violent. What all so called authority is derived from.
Having read the judgement and earlier media coverage on this very sad case there is one “second division” issue that concerns me. Rightly or wrongly some of the media have stated that at least one of the parents blames Kings for damaging the baby in the course of delivery and that legal proceedings against the hospital were in hand. If this is true it goes some way to explaining why the parents were deeply suspicious of the medical team and, indeed, any medic who might be seen as a member of the medical establishment. I would be pretty suspicious in these circumstances – and extremely vigilant for signs of any closing ranks for professional solidarity and financial reasons.
Was the possibility of litigation raised in the hearing? If so it is perhaps unfortunate that there seems to be no obvious reference in the judgement over and above the references in 20, 21 of the judgement to breakdown of trust.
It is to be hoped that Kings will learn lessons from this case because some of their medics do do need to improve their attitude to patients. I am aware of other breakdowns in trust and have my own mixed experiences of Kings. One of the advantages of publishing these judgements is that non-participants can use them to make progress in improving care in hospitals eg by raising cases at Governors meetings.
A related issue, which no doubt the excellent Transparency team will follow up, is the unfortunate effect of misleading and/or partial media coverage which in this case appears to have resulted in a number of “helpful” individuals coming out of the woodwork and making a bad situation worse. It is difficult to see, however, how one can prevent such mischief given the attitude of some editors.
A further thought concerns the well being of the judge. In an era when “snowflakes” pop up all the time one can only admire the strength of character of judges like Mr Justice MacDonald who have to deal with these terribly moving and difficult cases. One hopes that they have some kind of support behind the scenes, even if it is only a kindly phone call from the President.
Finally, last but certainly not least, one prays for the soul of little Isaiah and for his parents..