A Muslim father’s faith is not a reason to keep him in a “persistent vegetative state,” according to a judge who has ruled that his life support should be switched off after eight months.
The 66-year-old former chef, who had a history of diabetes and heart disease, was taken to Whittington Hospital in London last December with severe pneumonia.
He suffered a cardiac arrest in hospital and although resuscitation was successful, he suffered multi-organ failure over the next few days and slipped into a coma.
As the father-of-seven, known as XY in the judgment, emerged from the coma with the withdrawal of sedation, his medical team said it was clear he was in a “prolonged disorder of consciousness (PDOC)”, a term which has historically been categorised as a “persistent vegetative state”, the court heard.
The judge, Mr Justice Hayden, said although the latter phrase is often used in evidence, it brings “great distress” to families and hoped it could be consigned to the past.
The Whittington Health NHS Trust asked the Court of Protection, a specialist family court, to rule that the ventilation and clinically assisted nutrition and hydration keeping him alive should stop as they were not in his “best interests”. The man’s children argued that that their father had a greater level of awareness than the doctors believed, taking videos which they said showed him making finger movements. They also said their father would not want his treatment to end.
Although he still had a capacity for reflex action, doctors told the court the man had no sentient function, meaning he could not sense anything.
The family’s case for keeping their father on life support centred on their Muslim faith. Mr Justice Hayden said the family went beyond the hope “for a degree of recovery that the medical evidence simply cannot sustain”.
He said: “They believe in the capacity of Allah to perform miracles. They further believe that questions of life and death lie entirely in the hands of Allah and not a doctor or a judge.”
All of XY’s seven children appeared in court at some stage during the hearing. His daughter said that the course proposed by the doctors would be contrary to Islamic faith, as understood by her father.
Mr Justice Hayden said: “She told me that the Quran decreed that ‘he who kills a man, kills mankind; he who saves a man, saves mankind’. This is also present in the Torah and has resonances in the Bible.”
However, the judge agreed that the “burdensome treatment of the kind contemplated here, can only be truly ethical where it can achieve benefit for the patient. Here, the treatment is futile.”
The court heard that relations between the man’s family and medical staff were amicable and each respected the other’s opinions.
“They have, in the most difficult of circumstances, forged a genuine, courteous and mutually respectful relationship,” the judge said.
However, the judge concluded that the family’s faith did not allow them an “alternative view”, namely that their father may already be lost to them at, or around the time, of the cardiac arrest.
A consultant in intensive care said the man’s physical existence was being maintained “solely by medical and nursing intervention”.
They concluded that the man was “extremely unlikely” to make any progression and would remain in his present condition. He is also vulnerable to infective complications generated by the various tubes attached to him, the judge said.
Another consultant said it was clear that the finger movements seen on the family’s video recordings “demonstrate a reflex response of no neurological significance, generated entirely within the spinal cord”.
“The consensus amongst all the doctors, both the instructed experts and the treating clinicians, is that XY’s prolonged disorder of consciousness, in consequence of his profound neurological injury, is irreversible,” the judge said in his ruling, published on Monday.
Mr Justice Hayden said: “XY is, and has been, remarkable man. He has had an unslakeable thirst for life and a striking generosity of spirit. He was, for many years, a chef who thoroughly enjoyed his work. He took pride in the quality of the dishes he prepared.”
He added: “The food he prepares for his family is a manifestation of his love for them. He was aware of each of his children’s favourite dishes and would prepare them, unbidden, when he thought they were needed. His delight in his 13 grandchildren has been every bit as great as that in his children.”
XY’s “extraordinary generous and kind disposition” was not confined to his family, the judge said as his local community was central to his life and he was quick to identify and help those in need. He attended the mosque daily, frequently five times per day.
The judge said: “His Islamic faith was profoundly important to him. I sense that his prayers were for others rather than for himself.
“He also did important humanitarian work providing water to remote villages in Bangladesh. It is not without poignancy that one of the central issues in this case is whether he now should be treated with hydration.”
Medics told the court that the man’s kidneys had shown signs of recovery and were “reasonably confident” that he might manage to breathe unsupported for a period of time, possibly even months, if provided with nutrition and hydration, his brain function would never recover.
The judge said: “This is a concept many families struggle with. The damaged cells are nerve cells (brain cells) known as neurons and neurons cannot regenerate… The family’s hope that XY could be given further opportunity to ‘recover’ was entirely forlorn.”
A consultant in neurological rehabilitation, who wrote three reports into the man’s care and reviewed the family’s videos, concluded: “The only opportunity that [XY] is being given is for a prolonged period of dying.”
The judge said a 2013 case, Baroness Hale in Aintree University Hospital NHS Foundation Trust v James, provided the clearest explanation of the test when considering a patient’s best interests.
That concluded decision-makers must look at the patient’s welfare in the widest sense, not just medical but social and psychological, which included the nature of the medical treatment in question, what it involves and its prospects of success, as well as what the outcome of that treatment for the patient is likely to be.
“They must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be,” the 2013 judgment states.
Agreeing with the trust’s decision, Mr Justice Hayden said: “There can be no doubt that from the medical perspective, continuation of the present treatment is contrary to XY’s best interests.”
The man is expected to die within weeks following the ruling which the judge made “with the deepest of sympathy to the family”.
Mr Justice Hayden said: “I do not believe, from all I have been told, that [XY] would wish those who he has loved to believe that he was still there with them, in any meaningful sense, when the awful truth is that he no longer is.”
Nicola Kohn, for the NHS trust, told the court that medical evidence was “unanimous” in indicating that XY “can have no meaningful interactions with the world”.
Fiona Paterson KC, representing the Official Solicitor on XY’s behalf in court, also agreed in written submissions that treatment should cease, meaning he could “be allowed a peaceful and dignified death”.
But XY’s family urged the court to allow treatment to continue, with his son arguing his father remains “here in spirit”.
Giving evidence, he said: “He is fighting. He is trying so hard and we believe through the power of love, support, and medical expertise, he may get better, but even if he does not get better, if he slowly deteriorates, we can accept that as well. But I cannot accept you taking him off the machine, knowing very well that will initiate the beginning of the end.”
He added that he believed his father would “100 per cent” prefer to live in his current state if the alternative was death.
However, in his ruling the judge said the family’s views were “irreconcilable with medical evidence” and that the belief that XY “would choose his present situation to afford comfort to them is based on their false premise of what his situation actually is”.
A spokesperson for Whittington Health NHS Trust said: “This was an extremely complex, difficult and upsetting situation and whilst opinions differed, all parties have the patient’s best interests at the centre of their minds.
“We’d like to pay tribute to the patient’s family for the conciliatory way they have engaged in what must have been an upsetting process. We will follow the court’s decision, working closely with the family as we enter the next phase of this patient’s care.”