Pediatricians seek law on care wishes

Pediatricians seek law on care wishes
Most provinces don't have laws requiring anyone to follow the advanced directives for the treatment of very sick children
By JOHN MINER

After suffering through two failed transplant operations and living on dialysis, the 12-year-old London patient had had enough. She wanted to end her treatment for kidney disease and be allowed to die.

It was a wish her parents, particularly her father, and her doctor had difficulty accepting.

"I thought I could do more," said Guido Filler, chairperson and chief of pediatrics at London Health Sciences Centre Children's Hospital.

The Canadian Paediatric Society is calling on provinces and territories to pass laws to require doctors, hospitals and others to follow the directives of parents and minors who are very sick or dying.

At present, most provinces don't have legislation that requires third parties -- including emergency services and schools -- to respect the advanced directives of parents and children, said Ellen Tsai, chairperson of the society's bioethics committee.

Advanced directives can include instructions not to resuscitate a child or to end a particular treatment.

"Legally they don't have any status. Someone could choose to follow them because they believe they are the wishes of the child or the parent or they could just say, 'I am not obligated to follow that.' Our default stance is often to try to save the life of the child," Tsai said.

The CPA is calling on physicians to discuss treatment options with parents and seriously ill children at an early stage and regularly throughout treatment. Decisions should be reviewed and revised regularly as the medical condition evolves and palliative care options should be part of discussions where appropriate, the society says.

LHSC has followed a policy of consulting with parents and patients for several years, said Filler. One of the key concerns is determining if the patient is mature enough to understand their situation, he said.

In the case of the 12-year-old, there was a careful evaluation of whether she was competent to understand her decision, a process that involved a team of health-care workers and took about a year, Filler said.

"All of that assessment came to the very, very clear decision that she was not depressed and she was competent and her decision was accepted against the will of her parents. Her father had a huge difficulty with it and I as her physician had a huge difficulty with it, but I actually provided her palliative care," Filler said.

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