Mary Jane Pierce case raises many issues: ethicist

A prominent medicalbioethicistsays the case of Mary Jane Pierce is "complex and unusual" because it raises a multitude of ethical issuesin one tragic situation.

Dr.EikeKluge, a professor of biomedical ethics at the University of Victoria, and theformer director of Ethics and Legal Affairs for the Canadian Medical Association.says these issues make the case particularly difficult to assess.

"It's very difficult, but it's very difficult in any case, particularly when you're dealing with someone who is so severely affected," Kluge said. "The issue is complicated by the fact that we're dealing with a First Nations child. The issue is complicated further by the fact that the parents have disabilities."

"The ethical issue really is, no matter what the parents or anybody else feels, it iswhether it's in the best interests of the child to keep the child alive," he said.

Child born prematurely

Mary Jane Pierce was born prematurely at 25 weeks, and has been in hospital since she was born, with multiple serious health problems, including brain bleeding, cerebral palsy, infections and severe seizures. She remains on a ventilator at B.C. Women's Hospital.

• Parents of baby Mary Jane Pierce win temporary injunction to keep her on life-support

Her parents, Michelle Arnold and Justin Pierce, both 21, say they were pressured last Friday into signing temporary custody of Mary Jane over to the care of an agency under the province's Ministry of Children and Family Development.

According to an affidavit from the parents' lawyer,doctors planned to remove Mary Jane's ventilator on Tuesday morning, but a last-minute injunction prevented that.

It's not clear why social services became involved in the care of Mary Jane, but Justin Pierce told CBC News the ministry did not consider him and the child's mother to be fit parents to care for a daughter with disabilities, as they have epilepsy themselves.

Pierce says he and his wife have their epilepsy under controland sufferperhaps one or two seizures per year.

Many ethical implications

Mary Jane's parents have been told she has little to no brain function, but her father said he's seen her open her eyes and respond to various stimuli.

"She'll grab your finger. You tickle her foot, she'll kick you. She definitely has a lot of response. If you talk to her she'll definitely open her eyes and look at you," Pierce said.

But Kluge says those responses could mean very little.

"A good case is the TerrySchiavocase," he said. "She reacted when stimulated. Andneurologically, medically, it's very well established that these are reflexes and they do not signify awareness."

"Even when someone is brain dead but kept biologically alive, there will be a nervous response to tickling, to other stimuli. This is completely automatic."

"As a parent you want to see your child alive.You will attempt to do whatever you can to keep your child alive.- University of Victoria professor Eike Kluge

Pierce said Mary Jane is being treated with cannabis oil, with the hospital's permission, which has helped reduce her seizures.

For Kluge, that treatment raises further ethical issues in itself.

"Using cannabis oil, is in fact an experimental treatment, which brings in another ethical issue: namely, do parents have the right to apply experimental treatments to their child without, without, in fact, the treatment having been approved by a duly-appointed ethics review board?" he asks.

Kluge also worries that Mary Jane's First Nations ethnicity could be a factor in determining her treatment because of two recent cases in Ontario.

The cases of Makayla Sault and a girl known simply as J.J. set a dangerous precedent, hesays, because they could set a precedent for culture to trump medical science in some cases.

"It allowed for parents to provide health care which normally would not be considered acceptable under normal circumstances, simply out of respect for First Nations culture," Kluge said. "The reason that's an ethical concern is it seems to make First Nations or ethnic extraction a determinant of what is ethically appropriate. Which, strictly speaking, from an ethics perspective, is not true."

Court next step

B.C. Women's Hospital and Health Centre has declined to discuss specifics of the infant's care.

The Ministry of Children and Family Development said it could not comment on the specifics of the case, but said in general, "a delegated agency would work with the family to make the best possible decisions."

Kluge fears it may be emotion, not medical science, which is guiding the decision making in this unusual case.

"It doesn't happen a lot, but it does happen, and it's understandable that it happens because as a parent you want to see your child alive," he said. "You will attempt to do whatever you can to keep your child alive."

In order to make the right choice for the child, Kluge says a few questions need to be answered: what is her brain status? Is she likely to recover? Has the medical team made an appropriate decision? And are more medical opinions needed?

The parties will return to court on August 21.