Thursday, June 16, 2011

The ethics of baby Kaylee's life

With the chance of little Kaylee Wallace donating her heart to Lillian O'Conner, as had been hoped earlier this week, now seemingly passed, the ethical debate has taken off in earnest.

In a story in today's Toronto Star, I look at the ethics of transplants, and why donors and recipients are generally not known to one another.

"The death of one person needs to be separated from the need of an organ in another person," Bowman says. "Our system is going to be an ethical mess if we allow one to pull the other."

Linda Wright, director of bioethics at University Health Network, says allowing the families of dying patients to decide where organs will go would mean that some deserving patients may be left out.

"Because organs are so scarce and so valuable, the argument has been that we should give them to the person who needs them the most," says Wright, who stressed she is not talking about any case in particular.

Wright warns, however, that allowing donor families to decide who gets an organ is open to abuse, since we can never know the motivations of those involved.

Organs could end up distributed on the basis of race, religion or economic class, rather than need, says Michael Millis, director of the transplant centre at the University of Chicago Medical Center.

In a worst-case scenario, it could lead to organs being bought and sold, says Margaret Somerville, director of the McGill Centre for Medicine, Ethics and Law.

"You worry about some sort of scheme that might come up, some sort of payment for organs."

My colleague at the Star, Theresa Boyle, looks at the question of donation after cardiac death, or DCD.

"This case is really exceptional because heart transplants after (cardiac death) are extremely rare. There's really only minimal experience worldwide," Dr. Sam Shemie, medical director of organ and tissue donations at Canadian Blood Services, said yesterday.

The New England Journal of Medicine last year reported on three cardiac-death transplants involving infants at Denver Children's Hospital, touching off a debate about medical ethics. In each case, the heart was removed from a newborn suffering from severe brain damage less than two minutes after they were taken off life support. While the hearts saved terminally ill babies, questions were raised about whether the donors were really dead.

The Denver cases stirred debate about how long after cardiac functioning ceased should a retrieval team wait to ensure the baby's heart would not restart without intervention. While the chances of a successful transplantation improve the faster the heart is harvested, acting too soon can make retrieval seem like death by organ donation.

In a Canadian Press piece, Margaret Somerville and the University of Toronto's Trudo Lemmens reflected on the role of the media in the wrenching case.

The saga was being played out in real time on TV networks, news websites and in the pages of newspapers, with the names of all the players attached. The very public nature of the case concerns many medical ethicists who feel a deep sense of unease as they watch it unfold.

"These are not the kinds of decisions that have to be taken in the newspapers," says Trudo Lemmens, a professor of health law and bioethics at the University of Toronto.

"I guess one of the things you could ask is: Is having this media frenzy around this (case), is it a sufficient respect for that baby’s life and death?" wonders ethicist Margaret Somerville.

Their words seemed to bear themselves out this morning, when Kaylee's father Jason Wallace lashed out at the media.

Speaking to TV cameras in front of the Hospital for Sick Children, Jason Wallace lashed out at recent media coverage and hospital staff.

"The public's judging us, that we want our daughter to die in some way," Wallace said. "We're going through this.

"And now having the public now judge us that we're doing something wrong?"

In an interview with Sun this morning, the father vowed he wants his daughter to live.

"Forget people that think we're trying to euthanize our child," he said.

"This is BS!" He alleged Sick Kids staff told him to stop going public, saying one person told him, "you should keep your mouth shut and let your daughter die with dignity."

"Comments from this hospital saying things like we'll have to consider at some point in time how much money we're spending caring for your daughter," he said. "There is no issue whatsoever, I want my daughter to live."

Toronto Star reporter Emily Mathieu, who has led coverage of this story all week, gave us all a sense of the difficult week with a front-page story today looking at Kaylee's life and her parents' anguish.

They had nine months to prepare for the life of their daughter.

But, instead of sharing hopes and dreams for the baby's future, the parents have had less than two months to accept the fact their daughter was gravely ill and likely to die.

"We thought we were going to be able to have a normal life, take her home, do what a normal family would do," said her mother, Crystal Vitelli, 20. Kaylee's short life has been anything but normal.

She has spent her entire life in hospital and, on Tuesday, with the entire city watching, was taken off a respirator and was expected to die. In a nearby operating room, another critically ill baby was waiting for a heart transplant from Kaylee.

But Kaylee lived and last night, in a dramatic and emotional turn of events, her parents revealed that they were planning to take their daughter home to Bradford for the first time.


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