Friday, February 06, 2009

octuplets and all :)

Here's a piece from today's Toronto Star (they're using quite a bit from an interview they did with me, so it's probably ok to dump it into my blog):

Patients have the right to help guide their own medical treatment, ethicists agree, but there are limits. And the case of a California woman who used a fertility clinic to have octuplets – on top of the six children she already has – goes way, way beyond any reasonable confines, they agree.

"This is the most bizarre case of patient autonomy I have ever seen," says medical ethicist Udo Schuklenk, a philosophy professor at Queen's University.

Schuklenk has been following the case with personal and professional interest since Nadya Suleman gave birth to the octuplets two weeks ago, months after visiting a fertility clinic telling the doctors there that she wanted to have more children.

"This is one where all the ethicists, for a change, seem to all agree."

Schuklenk says that whatever Suleman's motivation is in wanting more children, her doctors had a duty to refuse her request, calling it "irresponsible" for them to simply comply with her wishes.

"Somebody needs to slap these people," Schuklenk says. "A statutory body should seriously look into the conduct of the health care professionals in that clinic."

Some of the doctors' colleagues would seem to agree.

"This makes our jaws drop," Dr. Mary Hinckley, a physician with the Reproductive Science Center in San Francisco, told a local paper. "It violated all of our standards here in the United States."

A 2005 study by Toronto's Joint Centre for Bioethics ranked doctor-patient disputes over treatment plans the top ethical challenge facing medicine today, ranking above such issues as waiting lists and doctor shortages.

"Thirty years ago, the issue was when patients could say no (to a doctor). Now it's when can a doctor so no (to a patient)," says Jonathan Breslin, co-author of the report.

Such questions are not limited to fertility issues, but also to cancer or HIV treatments, the continued use of life supports, cosmetic surgery, what medicines to prescribe (or not prescribe), participation in other therapies, and more, the study says.

Last month, a study in the American Journal of Bioethics examined what might be the most extreme example of patients seeking medical care they don't need: people demanding that a perfectly healthy arm or a leg be amputated.

People with body integrity identity disorder become convinced that an appendage such as an arm or a leg should not be there, and demand that it be amputated to fit their image of themselves. Such a person believes he or she was meant to be, say, a one-legged person, but was born with two legs by mistake.

For those with the disorder, it can be very frustrating. If thwarted, they will sometimes injure themselves to force an amputation.

While the study's author, German ethicist Sabine Müller, comes out against cutting off healthy limbs, there is no consensus on the issue.

Schuklenk counts himself among those sympathetic to patients who, despite having two arms or legs, feel they really should have only one.

"That falls into the same category as transsexuals and sex change operations," says Schuklenk, adding that a generation ago, the idea of a man trapped in a woman's body was not as widely accepted as today.

Schuklenk is not aware, however, of a similar disorder driving women to have multiple children to fulfil their personal self-image.

And if Suleman did feel a need to have a lot of children, he points out, "she already had six kids."

Schuklenk is glad the paternalistic days when doctors had almost complete say about treatments are largely a thing of the past.

Patients have much of value to add to their treatment plans, he says. "Patients often know more about their conditions than their doctors."

That's because patients often have time to research their ailments in greater depth than a general practitioner who treats a variety of patients with myriad complaints.

Books, newspapers, the Internet and even television commercials have educated patients about their health, making them more informed when they go to the doctor.

But that can also lead to a greater sense of entitlement, Schuklenk says, and a growing tendency to treat doctors like any other service provider – there to take orders and not ask questions.

"They see something on TV and think, `That sounds like me.' So they go to the doctor and demand a prescription," he says.

Schuklenk fears that's what might have happened in California. The doctors, he says, had a responsibility to set aside benefits they might receive – fees and fame – and confirm that Suleman could afford to raise the children and had the emotional strength and family support to do so.

"In her case, the answer each time would be no, no, no," he says.

Breslin says the doctor-patient relationship also can often be the place where issues such as limited health care resources or long waiting lists are played out, complicating the relationship.

Shawn Winsor, a bioethicist at the Joint Centre for Bioethics, uses dispute resolution strategies much like those used in legal circles to navigate the often tricky waters of the doctor-patient relationship.

"It's about helping them through the process," he says. "In the end, the doctor-patient relationship is a collaborative one."

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