Court orders treatment for disabled teen to avoid ALL ‘death sentence’

Blood cancers

By Geir O'Rourke

25 Mar 2024

A hospital in NSW has won a court case ordering it to provide life-saving treatment for acute lymphoblastic leukaemia to a teenager with extensive disabilities, against the wishes of her parents.

It’s the second decision in as many months by the NSW Supreme Court weighing the views of doctors against those of a minor diagnosed with cancer or their relatives.

The present case involved a 14-year-old girl, identified as OL, who was diagnosed with Pre-B-cell ALL following blood tests earlier this month at a hospital in rural NSW.

Doctors gave her a life expectancy of two to four weeks in the absence of their proposed chemotherapy regime, which was expected to take upwards of two years but carrying a 90% chance of survival.

However, the patient’s parents sought to oppose the treatment, saying it would be intrusive and debilitating to the point of requiring regular physical restraints or general anaesthetic in view of her existing medical problems.

Her medical history of disabilities included SCN8A gene-related drug resistant epilepsy, developmental and epileptic encephalopathy (DEE), severe developmental delay and autism spectrum disorder level 3.

The case was heard by Justice Michael Elkaim, who agreed the treatment would be “very difficult”, given the girl’s developmental age of approximately 18 months and her challenges with behaviour and communication.

“The mother would prefer there to be no treatment for the leukaemia,” he said in findings handed down last week (link here).

“She would prefer her daughter receive palliative care and be allowed to die at home.”

“Her wishes are not based on any religious or cultural belief. They are derived completely from her love for her daughter and her desire to avoid further suffering to an already medically challenged child.”

He noted evidence tended to the court that therapy would involve six to eight months of intensive treatment, requiring the girl’s family to stay near the hospital, and an estimated 58 general anaesthetics over two years as well as pain relief, a lumbar puncture and prescription of behaviour modifying agents.

But even this estimate was likely to be conservative, according to the mother, who said her daughter tended to pull out cannulas from her arm and remove gastro nasal tubes and would need restraint whenever she was treated or examined.

Nevertheless, not ordering treatment would be a “death sentence”, when the girl would otherwise be expect to live for decades more, concluded Justice Elkaim in his ruling.

“No medical opinion doubted that she would die within about four weeks,” he noted.

“In my view I have little alternative but to make the orders sought,” he said.

“As onerous as the treatment will be for OL (and her mother) it is treatment that will hopefully return her to her pre-leukaemia condition.”

“OL is not in a vegetative state. Returning to her previous condition will allow her to continue the life that she had already, with all its complications, embarked upon.”

The matter returns to court in June for a progress report on the teenager’s treatment.

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