The family of a 19-year-old Christian woman from the U.K. is speaking out after a court prevented her from seeking life-saving experimental treatment abroad.
Sudiksha Thirumalesh died last week and her family is finally sharing her plight after a lengthy legal battle with the U.K.’s socialized healthcare system – the National Health Service – stopped them from revealing her name publicly or sharing her story, according to Christian Concern.
Sudiksha, publicly known by only “ST” for over a year due to a court ordered muzzle placed on the family, was suffering from a rare genetic mitochondrial disease. The disease caused chronic muscle weakness, loss of hearing, and damage to her kidneys, making her dependent on regular dialysis and other intensive care.
Despite her illness, Sudiksha was fully conscious and able to communicate saying she wanted to “die trying to live”.
She requested permission from the Court of Protection to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment to help her, but the court denied her request.
“A judgment from Mrs. Justice Roberts in the weeks before her death disturbingly said that Sudiksha did not have the capacity to make such decisions after the NHS lawyers argued she was ‘delusional’ for disagreeing with the hospital’s view that her condition was hopeless and she had to be put on an end of life pathway. The ruling was made despite two psychiatrists providing evidence to the contrary,” reads a statement from Christian Concern.
The family, Thirumalesh Chellamal Hemachandran, Revathi Malesh Thirumalesh, and her brother Varshan Chellamal Thirumalesh, spent all their savings on legal fees to stop NHS from pursuing efforts to end her life.
The court ruled in favor of NHS, which pursued a palliative care plan. She died a few days later.
“Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her,” the family said in a statement. “We seek justice for Sudiksha today, and for others in her situation.”
They added, “We are deeply disturbed by how we have been treated by the hospital trust and the courts. We have been gagged, silenced, and most importantly, prevented from accessing specialist treatment abroad for Sudiksha. Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering.”
“We want to thank the medical practitioners who did their best for Sudiksha. To those few clinicians who seemed only to care about Sudiksha dying, we forgive you,” they continued. “We are a Christian family who believes in life, love, and forgiveness.”
A court judge will decide next week if the family is allowed to name the hospital, the hospital trust, and the clinicians involved in their daughter’s situation.
“This profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the Courts. There is an urgent need for a more open and transparent system. Justice is done in the light and not behind closed doors,” said Andrea Williams, chief executive of the Christian Legal Centre.
“We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence,” she continued. “This case should be a wake-up call for the government to set up an urgent Public Inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases.”
Sudiksha’s case is similar to the widely reported cases of Charlie Gard, Alfie Evans, and Archie Battersbee. In all these cases, NHS asked the Court of Protection to authorize the removal of life-saving medical treatment.
The 19-year-old’s case differs in that she was conscious, able to speak, and had instructed her lawyers to argue that she should be kept alive. She gave her parents Lasting Powers of Attorney to make decisions on her behalf.
Despite that, the court approved NHS’ palliative care plan.
Sudiksha died from kidney failure, just days after the hospital refused to continue dialysis.