The Catholic Herald reported in last month’s issue on the case of a young woman, Sudiksha Thirumalesh, 19, who died from a degenerative disease, mitochondrial depletion syndrome, aggravated by Covid, after a long dispute with the NHS Trust in charge of her care. Her condition meant that she needed dialysis and ventilation. She declared that she wished to live and wanted to continue dialysis. And, astonishing as it seems, the Trust argued and the Court of Protection agreed, that she did not have the mental capacity to make decisions – because she disagreed with her doctors. This was despite two experienced psychiatrists finding that she did have the capacity to make decisions.
Sudiksha had hoped to travel to the US to join clinical trials for nucleoside therapy which was, she felt, her only chance of life, but she was unable to raise the £1.5 million needed for the attempt because of a court order that meant that even her name could not be disclosed, nor the identity of the NHS Trust which was in charge of her care. She was damned by trying to live and barred from attempting to find a cure. Quite how doctors could argue that the very attempt by a bright young woman to prolong her life was evidence of mental incapacity is hard to conceive. What the case also demonstrates is the inhumanity of a system which, by its insistence on anonymity for all the parties in these cases, prevented her from having one last chance at treatment in the US. Britain does not have a written constitution which enshrines the right to life but it has a long religious, philosophical and legal tradition which acknowledges that every individual has the right to seek to survive.
This is not the only case where the courts have been invoked to prevent individuals and parents claiming life-sustaining care. In Nottingham, doctors have urged a High Court judge to allow a little girl, Indi Gregory, to die by switching off her life support, even though her parents argue that the child should have the chance of life and that she is not suffering undue pain. In such cases, it is not enough simply to invoke the medical omnipotence of her doctors. There should be better provision for mediation between patients and doctors, and emphatically, parents should have the right to obtain a second opinion from a specialist. Equally emphatically, individuals and parents of sick children should have the chance to seek treatment overseas. Denying them even the hope of treatment on the basis that the NHS knows best is not kindness; it is both despotic and cruel. The NHS portal for patients has the curious title, Patients Know Best – except, it would seem, in matters of life and death.
