Ed Madden, BL, looks at an England and Wales Court of Protection case in which the family of a seriously ill young man opposed a plan by an NHS Trust to put him on a palliative care pathway
In March 2022, the England and Wales Court of Protection delivered its judgment in a case in which a University Healthcare NHS Trust (‘the Trust’) sought a declaration that it was lawful and in the interests of a young man, ‘M’, to be put on a palliative care pathway, and for IV fluids and other artificial life-prolonging treatments to be discontinued. The application was opposed by ‘M’s family, including his parents and his partner.
When the case came on for hearing, the Court was told that until early November 2021, when he was admitted to hospital, the young man lived at home with his parents and girlfriend. He was said to be fit and well. Photos of him at the time show a happy and engaging individual.
At the beginning of the Covid-19 pandemic in March 2020, ‘M’ was furloughed from his job and subsequently made redundant. Around the same time, he attended a clinic for a ‘painful but apparently minor condition’ where he was found to have high levels of glucose and ketones in his urine, suggestive of diabetes type 1. He was advised that he should be admitted to hospital for investigation and treatment, but refused to follow that advice. Over the following months ‘M’ lost a great deal of weight.
Apparently, he believed that his blood results were affected by his diet. He tried to manage his health by going on a fruit diet and then a fully plant-based diet. Despite subsequently resuming a normal diet, the weight loss continued. He also developed what appeared to be a chest infection.
In early November 2021, ‘M’ suffered a cardiac arrest. His parents contacted the emergency services. When the ambulance crew arrived at his home, they administered CPR for an extended period until spontaneous cardiac output was restored. On admission to hospital, ‘M’ was found to be emaciated and weighed only 39kg. He was placed in an induced coma, intubated and ventilated. He also required inotropic support. When sedation was withdrawn twelve days later, he remained ‘in a state of disordered consciousness’.
‘M’ was diagnosed with type 1 diabetes mellitus, which was difficult to control. He was fed by nasogastric tube. CT and MRI scans evidenced hypoxic ischaemic damage to his brain and liver.
He underwent a tracheostomy in late November 2021 and had episodes of ‘hospital-acquired pneumonia’, which was treated with intravenous antibiotics. His condition reached a stage where the team at the hospital concluded that he should be registered as ‘DNR’. The family objected to that course of action.
In late January 2022, ‘M’ was transferred to the hyper-acute rehabilitation unit (RU) for assessment. His condition deteriorated following his arrival there. He developed an ileus, which gave rise to particular problems with providing nutrition. The clinicians decided that provision of enteral nutrition was no longer possible and that the focus of ‘M’s care should move to being palliative only. Following profound disagreement between the clinical staff and the family in relation to that decision, the Trust made the present application to the Court.
Having heard evidence from the treating consultants and from medical experts appointed by the Court, Mrs Justice Budd gave her judgment in the case. It was agreed that ‘M’ lacked capacity to make decisions for himself. The matter for the Court to determine was what was in the young man’s best interests. The judge described the medical evidence in the case as ‘unanimous, compelling, and overwhelming’. Tragically, ‘M’ was dying. If his current treatment continued, he would die within a few weeks. If instead he was provided with palliative care, he would die within days or even hours. The family struggled to accept that evidence.
While their views were sincerely held, and entirely understandable, they were not based on a rational assessment of what they were being told, or what was observable.
The evidence of the doctors was that to provide ‘M’ with nutrition, hydration, or any other active (as opposed to palliative) treatment was medically futile and, in some respects, burdensome. Initiation of total parenteral nutrition (‘TPN’) would put him at risk of infection and thrombosis; enteral nutrition would actively shorten his life by increasing aspiration of stomach contents. Hydration would lengthen his life a little, but would not lead to him being more comfortable.
The judge said that if ‘M’ were able to make decisions for himself based on the evidence that was before the Court, it was very difficult to see how he would make a choice to be given nutrition, whether TPN or enteral, when it would at best be futile, and at worst actively harmful.
It was easier to see how he might wish to continue to be hydrated, but that wish would be very unlikely to persist in the face of the very strong evidence that this would simply prolong his existence for a short while, without any benefit to him in terms of quality of life.
In any event, even if ‘M’ had capacity, he would not be in a position to insist on receiving treatment in the face of clinicians who considered it to be against their professional and moral judgment to provide it.
The judge decided that it was in ‘M’s best interests to receive the full palliative care package proposed. The benefits of that treatment strongly outweighed the burdens. In making the declarations sought by the Trust, the judge offered her profound sympathy to the family for the situation in which they found themselves; it was obvious that ‘M’ was ‘much loved and treasured by them all’.
In a postscript to the judgment, Mrs justice Budd said that she distributed her draft judgment to the parties the day following the hearing and that very sadly, ‘M’ died two days later before the care plan was put into action. She understood that the family was with him when he died.
Reference:  EWCOP 13