Withdrawal of life sustaining treatment v profound religious beliefs in sanctity of life
3 June 2021
Alta Fixsler was born with catastrophic brain injury. She now two years old, currently a patient at the Royal Manchester Children’s Hospital Paediatric Intensive Care Unit on intensive life sustaining treatment. In this case the court was asked to decide whether it would be in Alta’s best interests for that life-sustaining treatment to be continued. The inevitable consequence of it being discontinued will be the death of Alta.
The parents are Chassidic Practising Jews and Israeli citizens. They emphasised the fact that being devout members of the Jewish faith meant that their faith was not simply a religion but also a way of life. Within this context, the parents took detailed rabbinical advice as to their religious duties and obligations in the context of Alta’s medical situation. They opposed the application brought by the NHS Trust and instead sought to take Alta to Israel for continued treatment and the exploration of long-term ventilation at home in Israel in due course or, if the court concluded that it is in Alta’s best interests for life sustaining treatment to be withdrawn, for that step to be taken in Israel.
Specifically, the Trust sought the following:
A declaration pursuant to the inherent jurisdiction of the High Court that it is not in the best interests of Alta for life-sustaining medical treatment to be continued, and that is it in her best interests for a palliative care regime to be implemented;
A specific issue order under section 8 of the Children Act 1989 determining that life-sustaining medical treatment should cease to be provided and a palliative care regime implemented instead.
Apart from artificial ventilation and nutrition, Alta’s intensive care required including regular suctioning of her airway and the taping shut of her eyes, since her inability to move her eyelids would lead to ulceration of the cornea. Alta receives the drugs Baclofen at the maximum dose to reduce the force of her spasms, Gabapentin, to reduce spasticity and pain resulting from spinal jerks and myoclonus, Trihexyphenidyl, to assist with dystonia and Diazepam, to assist with pain, spinal myoclonus and spasticity. In his statement, one of her doctors stressed that there was no better way available to manage Alta’s pain short of using sedative or analgesic agents to induce a state “comparable to general anaesthesia.” Her paediatric neurologist stated that
she has no real awareness or cognitive abilities at all, but has reflex / brainstem response to distress and pain only.
Whenever any of her care givers examines or handles Alta, the child goes into immediate spasms and shudders. The Guardian representing her described her experience of seeing Alta over a number of hours:
During interventions to suction her tracheostomy, administer medicine or general care such as moving and handling, or even hand holding she appears to experience this all as pain and discomfort. From my non-medical visual perspective, her body, particularly her upper torso, starts to shake, until seemingly the pain reflex passes…The nurses stay with her until the pain stops, though it did not seem that their touch made the pain end but was more of a human response…
The evidence furnished by Alta’s medical team indicated that the most critical structures for perception of pain (the receptors, the nerves, the spinal cord and part of the brain stem and thalami were all still present and therefore she could still perceive pain, despite lacking consciousness. According to their report
The experience of pain does not require significant cognitive function. The body can produce reflexes to pain, usually mediated via the spine, that do not require cognitive function. In my opinion, Alta frequently experiences pain and discomfort most or every day. She may not have the cognitive ability to respond to this by crying or thought, but her movements and the alterations to her cardio-respiratory markers indicate that she experiences pain.
Each of the clinicians and medical experts before the court, the expert instructed on behalf of the parents, considered that it was in Alta’s best interests to withdraw life sustaining treatment and move her to a palliative care regime in circumstances where, even with the intensive care required to sustain long term ventilatory support, Alta will never recover and will have a progression of increasingly debilitating symptoms.
In response to the parents’ application, MacDonald J noted that there was no evidence from the Israeli hospitals as to the treatment regime that would be implemented were Alta to be transferred to Israel. There was no dispute between the treating clinicians and medical experts that the increased need for movement, care interventions and changing environments associated with a transfer would cause additional discomfort for Alta in circumstances where she would not be travelling for medical benefit. Within this context the father informed the court in his statement that he and Alta’s mother had received rabbinical advice that it would be contrary to their Jewish faith to adopt a palliative care pathway. The Guardian observed that
Recognising the benefits and comforts that many people obtain from having religious beliefs by which they live their lives, these are not benefits and comforts which Alta has been able to enjoy. She is unaware of her faith and is not and never will be in a position to derive solace from enduring suffering because it is in accordance with her spiritual beliefs.
Rabbi Goldberg, giving evidence on behalf of the parents, was concerned about the spiritual consequences for Alta if it was not possible to for her to be buried in Israel:
“The majority of God fearing Jews would like to be buried in Israel. The first to come back [on the day of judgment] will be those buried in Israel. Those who are further away will have to go through suffering before coming back to Israel.”
The court has inherent jurisdiction to make an order in the child’s best interests arises where a child lacks the capacity to make the decision for him or herself, in the context of a disagreement between those with parental responsibility for the child and those treating the child (An NHS Trust v MB  EWHC 507 (Fam)).
The court has no power to require doctors to carry out a medical procedure against their own professional judgment, however much sympathy it may have for the parents. The presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong, but the presumption is not irrebuttable. The parents’ wishes, “however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship.” (Re A (A Child)  EWCA 759)
After a detailed consideration of the “best interests” test, and the authorities on the concept of “human dignity”, MacDonald J concluded that the Jewish belief system followed by the parents was only one factor to be weighed in the balance by the court when reaching a best interests decision. He was likewise not able to accept the submission that the assessment of Alta’s perspective should start from the assumption that Alta would share the values of her parents, of her brother, and of her wider family and community. Insofar as the parents’ Article 9 right to freedom of thought, conscience and religion was engaged in this case and should be accorded weight, the right to freedom of thought, conscience and religion may be circumscribed where this conflicts with the subject child’s best interests.
neither the parents nor Rabbi Goldberg are medically qualified and necessarily observe Alta’s responses from a lay perspective rather than a medical one. In such circumstances, I am satisfied that the evidence of the treating clinicians and experts should attract greater weight on the first question of the extent is Alta exhibits movements that, if she is able to experience pain, will cause her pain.
…the anatomical pathways that mediate the reflexive response pain are, to a greater or lesser extent, intact in Alta.
Interestingly, in the context of the current debate about the possibility of compulsory Covid-19 vaccination, MacDonald J referred to a US Supreme Court case on religious arguments around the “best interests” consideration:
[In] Prince v Massachusetts (1944) 321 US 158 the US Supreme Court held that parents’ rights to manifest their religion are necessarily circumscribed by the interests of the child in that:
“… neither rights of religion nor rights of parenthood are beyond limitation. Acting to guard the general interest in youth’s well-being, the state as parens patriae may restrict the parent’s control by requiring school attendance, regulating or prohibiting the child’s labor [sic] and in many other ways. Its authority is not nullified merely because the parent grounds his claim to control the child’s course of conduct on religion or conscience. Thus, he cannot claim freedom from compulsory vaccination for the child more than for himself on religious grounds. The right to practice religion freely does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death … [T]he state has a wide range of power for limiting parental freedom and authority in things affecting the child’s welfare; and that this includes, to some extent, matters of conscience and religious conviction …”
Unsurprisingly, the judge concluded that it would be in Alta’s best interests for life-sustaining medical treatment now to be withdrawn, and for a palliative care regime to be implemented and that the application of the Trust was therefore granted.