Judgments in best interests cases involving children often make for heart-wrenching reading. And so it was in Bolton NHS Foundation Trust v C (by her Children’s Guardian)  EWHC 2920 (Fam), a case which considered Royal College of Paediatrics and Child Health guidance, affirming its approach was in conformity with Article 2 and Article 3 ECHR. It also described, in the clearest terms, the terrible challenges facing C’s treating clinicians and her parents.
C is her parents’ only child. On an icy and stormy night in January 2015, her mother went into labour. Her parents tried to drive to the hospital but C was born en route, in the car. When C arrived at the hospital she was in a critical condition. She had suffered a brain injury due to lack of oxygen at birth. C has been in intensive care for all her life, receiving continuous, high-level medical treatment. Her treating doctors were concerned that this treatment was not in her best interests. C’s parents wanted treatment to continue.
In his judgment, Peter Jackson J set out C’s very significant medical problems, along with the intrusive and intensive treatment in place to manage these. For example, C has insufficient respiratory drive and needs high level respiratory support. She has been intubated for much of her life. She cannot swallow or protect her own airway and so has been fed by tube that delivers food directly to her small intestine. But this becomes blocked or dislodged with some regularity. And so, tragically, the list goes on. Sadly, the evidence from C’s treating clinicians was that she did not appear to gain any pleasure at all from her environment but, on the other hand, she did respond to painful and distressing stimuli. She did not open her eyes and was thought to be both blind and deaf.
In light of the parents’ views, that treatment should continue, a second and independent medical opinion had been obtained. The conclusions of those clinicians were equally bleak – there was no additional treatment that could be offered elsewhere and it was considered that long-term ventilation was not in C’s best interests.
Royal College of Paediatrics and Child Health Guidance
This year the Royal College of Paediatrics and Child Health has published updated guidance called ‘Making decisions to limit treatment in life-limiting and life-threatening conditions in children’, which C’s treating clinicians had used as assistance in her case. This very detailed document traverses the UN Convention on the Rights of the Child, the Mental Capacity Act 2005, the Equality Act 2010 and other legal sources, including Article 2 ECHR. Fortunately for the Royal College, Peter Jackson J found that the guidance was in conformity with previous court decisions on withdrawal of life-sustaining treatment and with Articles 2 and 3. Central to C’s case were the following, taken from the guidance:
“The principle of the sanctity of life is not absolute. Whilst Article 2 imposes obligations to give [life sustaining treatments], it does not impose an absolute obligation to provide such treatment if it would be futile and where responsible medical opinion is of the view that such treatment is not in the best interests of the patient” (referring to Re OT (a child)  EWCA Civ 409, R (Burke) v the General Medical Council  EWCA 1003 and NHS Trust A v Mrs B; NHS Trust B v Mrs H  Fam 348)
“[Life sustaining treatments] can lawfully be withheld or withdrawn for a patient who lack capacity in circumstances where commencing or continuing such treatment is deemed not to be in their best interests” (referring to Airedale NHS Trust v Bland  1 All ER 821).
Peter Jackson J’s Decision
Peter Jackson J started with the fundamental proposition that there is a strong presumption that it is in a person’s best interests to stay alive. But, this is not an absolute and there are some cases where it will not be in the patient’s interests to receive life-sustaining treatment. He referred to Aintree University Hospitals NHS Foundation Trust v James  AC 591, the first case to be decided by the Supreme Court under the Mental Capacity Act 2005. Aintree University Hospitals was another case involving withdrawal of treatment (in an adult), and the Supreme Court preferred to ask when it was in the patient’s best interests to give life-sustaining treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, then the court could not give its consent on the patient’s behalf and it would follow that withholding or withdrawing the treatment would be lawful.
Back in C’s case, it was reaffirmed that the ultimate determination of best interests is made by the Court and not by parents or doctors, though of course their views must be considered (more on C’s parents below). The best interests’ analysis must not be limited to medical matters. In Aintree University Hospitals the Supreme Court said that welfare in the widest sense must be looked at, “not just medical but social and psychological” .
Ultimately, Peter Jackson J was in no doubt that the Hospital’s application should be granted. That application was to progressively extubate C and not reventilate her if, as expected, she deteriorates. At that stage palliative care will be provided to ensure she dies with dignity and without further suffering. Peter Jackson J found that the benefits to C of continued treatment consists only in the prolongation of her life by intensive medical intervention while the burdens she has to bear are considerable and she has no quality of life beyond remission from pain and distress.
C’s Parents and Strong Judicial Words
The observations about C’s parents justify a few words. C’s parents had been visiting her twice a week. During those visits they did not engage with the medical staff and would rarely answer their calls. They had not meaningfully engaged with the Trust representatives or the Guardian in these proceedings. Peter Jackson J observed that C’s father was “exceptionally hostile to the treating team, expressing himself in the most vitriolic terms about the care she has been given, the doctors and nurses, the hospital and the political system generally” . There was a well-placed recognition that, in cases of this kind, disagreement or mistrust between doctors and parents was nothing unusual. But, according to Peter Jackson J “the level of antagonism expressed by the father towards those treating his daughter is beyond my experience.”
Of course, C’s parents were free to express their beliefs but, as recognised by the Court, they risk “depriving C of options that exist where there is a working relationship” . For example, it would not be possible to discharge C to a hospice for palliative care without agreement and close co-operation between parents, doctors and the hospice.
Reasons to Read this Case
This short judgment does nothing to change the law. While all best interests cases are undoubtedly challenging, this one was less fraught than some other cases. And that is precisely why it is case worth reading. It is a straightforward, comprehensible application of the existing law and it powerfully demonstrates the hugely difficult decisions that clinicians – and the courts – must grapple with, when the stakes could not be higher.