I think this sums it up exceptionally well.
[quote=“Daniel Henninger, WSJ, 06/11/2003”]
opinionjournal.com/columnist … =110003735
Let Patients Decide
Iranian twins left the world a big idea.
BY DANIEL HENNINGER
Friday, July 11, 2003 12:01 a.m.
The doctors for the conjoined twins Ladan and Laleh Bijani said that the odds of their surviving surgery to separate their heads were about 50-50. The number of times this procedure had been done successfully was–zero. So one suspects that “50-50” are the standard odds medicine distributes when the true answer is, not much. Ladan and Laleh Bijani knew this. But they had arrived at that place known only to others who have been brought there by nature’s cruel ferryman–people with failing hearts, cancer, AIDS and other ailments that most people are happy they have little reason to understand.
The attempt in Singapore to separate the large vein the twins shared didn’t work. Ladan and Laleh are dead, and headlines have said a debate is “raging” over whether the surgery should have been tried. I’ve read those stories, and while one can find specialists who wouldn’t have performed the operation, few people in medicine are saying the twins should have been stopped from tendering their lives to a team of 100 medical professionals. Almost everyone has said: Their choice.
That’s worth some thought.
In the realm of medicine at the edge, as here, there is constant struggle among various parties to capture control of the decision over who gets the final call on what procedures may be done, or forbidden. Should that fall to the surgeon or scientist who conceived the procedure, or to an oversight panel of doctors, ethicists and lawyers? Or a government agency, such as the FDA, whom the politicians down the street will hold responsible if a highly publicized medical failure happens? Or should the sick person decide?
I hope that the Bijani case, in which Ladan and Laleh made the call, stands as a benchmark in the debate over risk, reward and regulation in medical practice and experimentation. Publicity has its purposes, and what the publicity here made clear is that Ladan and Laleh Bijani were smart. Law-school graduates, they undeniably had the cognitive skills to understand what they were getting into. Whatever paternalistic instinct exists in the ethical community to trump individual autonomy–and that impulse is strong–it was trumped by the Bijanis’ evident ability to perform the complex moral calculus at play here.
This autonomy might not have been so readily conceded had the twins been semi-literate farm girls. But the Bijani case now stands as a globally arrived at consensus that if you, the patient, know what you’re getting into, then you should control the green light, not others. It may sound like simple common sense to confer autonomy on the person most at risk, but the world hasn’t come easily to this sensible conclusion. The more common practice has been to default most of the responsibility to agents and authorities other than the patient.
In the U.S., one of the most contested, long-running battlegrounds over who decides has been the artificial heart. Unlike the great rarity of conjoined twins, heart failure contributes to more than 700,000 deaths each year, but heart surgeons and artificial-heart developers have struggled with the FDA over heart-implant protocols and permissions for 30 years. This is no Frankenstein project done in the labs of quacks but a very public, if difficult, area of leading-edge science. In the past, at least two prominent heart surgeons, Drs. William DeVries and Jack Copeland, have threatened to simply disobey FDA prohibitions rather than not operate on a dying patient.
Patients have earned themselves a seat at the decision-making table for risky medical therapies only recently. I think any history of this subject would show that the group most responsible for this shift was AIDS patients. The homosexual community, like the Bijanis, was smart, young and well-informed. More important, unlike the elderly afflicted with Alzheimers, they had the energy and publicity skills to stage extravagant death pageants outside the FDA’s drab, fortress-like building in suburban Maryland. The issue was simple: We’re dying and don’t have 10 years to wait for drug developers to erect a paperwork mountain of proof.
It may seem self-evident that a human being at death’s door, for whom medicine’s conventional wisdom has failed, should have authority over what to do next, when what to do next doesn’t include giving up. But it is also inevitable that when medical experiments fail, such as clinical trials whose first purpose is knowledge rather than therapy, they can do so catastrophically, as with Jesse Gelsinger’s death in a gene-therapy trial at the University of Pennsylvania. Then the power of decision shifts away from patients and back to review boards and regulatory combines.
Now we have before us these two delightful young women, who though healthy as that word is normally understood, wished to live as free-standing beings. After they died, Michael Wilks of the British Medical Association said: “They were both, presumably equally, determined they wanted to take the risk, and were highly informed, and I don’t think there is any argument against it. To my way of thinking a consistent desire to take that risk is to be applauded.” It remains to be seen whether our overseers in the political and regulatory towers will applaud this sense of the public mind. But it looks like the world has cast its vote on the informed decision taken by Ladan and Laleh Bijani in their 29th year: Your choice; go for it.
The simple principle of entitling adult individuals with a real voice in the course of life is a powerful idea (and that includes Iran). If Ladan and Laleh put this notion solidly in the world’s collective mind, their legacy may prove larger than the stark drama of this past week.
Mr. Henninger is deputy editor of The Wall Street Journal’s editorial page. His column appears Fridays in the Journal and on OpinionJournal.com[/quote]