Survey says... you've come to the end

A paper in the recent edition of PLoS Medicine proposes a radical idea: a computer might be better at making end-of-life decisions than a patient's family. A trio of researchers led by NIH's David Wendler created a "population-based treatment indicator" from already-published surveys of patient preferences in end-of-life cases. Wendler and company then compared the predictive accuracy of the indicator against that of surrogate decision makers in hypothetical situations. The result: the decisions made by both surrogates and the algorithm matched that of patients about 78 percent of the time. The authors hypothesize that as more specific data on patient preferences are added to the indicator formula, it could become even more accurate at predicting a patient's wishes than his or her family.

But if such a system were to show up in clinical settings -- and that, of course, is an enormous if -- would it really be used to shed light on patient preferences? Or would its real use be as a way of making family members feel better about their decisions? The authors suggest such a possible use: "This approach might help to relieve some of the burdens associated with making decisions for incapacitated patients, while allowing family and loved ones to retain final decision-making authority." The converse could also be true. What happens if a family's decision conflicts with the computer? Should the clinician tell them? Has the family made the "wrong" choice?

Scientific American has more on the "population-based treatment indicator."

-Greg Dahlmann

Gandhi on Euthanasia

The Times of India received this letter concerning a recent series of stories on euthanasia in India. The subject is Mahatma Gandhi's view of euthanasia, and the writer included this interesting quote:

"A calf, having been maimed, lay in agony in the ashram and despite all possible treatment and nursing, the surgeon declared the case to be past help and hope. The animal's suffering was very acute.

"In the circumstances, I felt that humanity demanded that the agony should be ended by ending life itself. The matter was placed before the whole ashram. Finally, in all humility but with the cleanest of convictions I got in my presence a doctor to administer the calf a quietus by means of a poison injection, and the whole thing was over in less than two minutes.

"Would I apply to human beings the principle that I have enunciated in connection with the calf? Would I like it to be applied in my own case? My reply is yes. Just as a surgeon does not commit himsa when he wields his knife on his patient's body for the latter's benefit, similarly one may find it necessary under certain imperative circumstances to go a step further and sever life from the body in the interest of the sufferer".

[thanks Dominic Sisti]

Physician-Assisted Suicide: Is Vermont Next?

The State Legislature of Vermont may reconsider the issue of physician-assisted suicide in the upcoming session, the Brattleboro Reformer reports. A "Death with Dignity" bill, which would have allowed doctors to help terminally ill patients die, was introduced in the last session. Sponsored by a variety of representatives from all political parties, the bill never made it out of committee. Supporters of the bill have pledged to reintroduce the bill this month and continue seeking support for it. Dr. Robert Orr, president of the Vermont Alliance for Ethical Health Care and bioethicist at Fletcher Allen Health Care in Burlington, Vermont, testified against the bill in front of the legislative committee last fall: "It's not needed...We can do an adequate job of taking care of people at the end of life." The debate promises to continue and cross party lines. Currently, Oregon is the only state that has legalized physician-assisted suicide for terminally ill patients. -- Linda Glenn

Living Wills Do Not Work

The Hastings Center Report article on living wills' failure has drawn notice pretty much everywhere in the major media. Many others have made similar claims (e.g., here), but this piece is quite good and apparently timely as well.

Living wills have become one of bioethics' most embarrassing failures - an imaginative idea that has the support of the majority of bioethicists despite a total lack of support for their efficacy. From the start it has been clear to at least some of us that these documents just make things more confusing and litigious. An incredibly imaginative experiment, it is time to call living wills just that - an experiment, based on little data and thrust out into the medical community at large on the strength of a few prominent persistent vegetative state cases. Given the coverage of this most recent missive in the debate about how to handle patient wishes at the end of life, it will be interesting to see if hospital ethics committees continue to assert that living wills are a smart thing for patients to have.

It is high time for some legislative retooling of the Patient Self-Determination Act and supporting state legislation. The experiment has failed. Time to pull the plug.

Jon Eisenberg on the State of Schiavo: Not Good

The news is not encouraging from Florida on the most significant end-of-life case of the year.

Gov. Bush, the Schindlers and their supporters are now taking a two-pronged approach to forestalling the removal of Terri Schiavo's feeding tube despite the Florida Supreme Court's decision, and so far they have achieved success on both fronts. In the Florida Supreme Court case, Gov. Bush has obtained a 30-day stay of the court's decision in order to to give him time to ask the United States Supreme Court to take the case and issue a further stay. Meanwhile, the Schindlers filed a motion in the trial court asking the judge to hold a retrial on the issue of Terri Schiavo's wishes in light of the Pope's recent statement regarding tube feeding of PVS patients. According to the Schindlers, Terri, who was Catholic, would take the Pope's statement to mean she must remain on tube feeding. The judge denied the motion, citing a prior appellate court determination that Terri "did not regularly attend mass or have a religious advisor who could assist the court in weighing her religious attitude about life-support methods." However, the judge also issued an emergency stay of the feeding-tube removal until December 6, 2004, to give the Schindlers time to appeal this order. No doubt the Schindlers will file an appeal and ask for a further stay from the state Court of Appeal court pending the decision on the appeal. Thus, there are now two temporary stays in place. I think it doubtful that the Supreme Court will take the case and issue a stay, but I think it likely that the Court of Appeal will issue a stay pending its decision on the Pope motion, which will likely last for the better part of a year or longer.

CORRECTED Parents Fight to Keep Dead Son on Life Support

KSL, the NBC affiliate from Salt Lake City reports yesterday on a confrontation in a children's hospital between parents and doctors over whether or not a 6 yr old boy is dead. The parents maintain that he is alive and that there is hope for him to continue on a trajectory that KSL describes as "filled with miracles." The photos in the story are remarkable. Doctors declared "very" pronouced death meaning that there is internal decomposition; an injunction has been filed to stop action by the physicians. The story has not been mentioned in any of the listservs. CORRECTION - Armand Antommaria of Utah corrected us on our assumption that KSL is in St. Louis. Oops.

New INFOCUS Article Up

A new INFOCUS is now up at BIOETHICS.NET and it is pretty unusual for a bioethics journal. The piece, by Wong and colleagues, examines the way in which end-of-life decisions are measured. The analysis of the utility of "Q Methodology" for exploring influences on clinical decision making goes right at the issues in studies like SUPPORT, which attempt to make sense of how different kinds of "bioethics interventions" actually change decisions.

What Happens Next in Schiavo

Jon Eisenberg, author of several amicus briefs in end-of-life cases, reports by email today to the 60 of us who signed the Schiavo brief that:

The Governor's attorneys have announced that they will ask the United States Supreme Court to take the case. Meanwhile, the Schindlers have asked the trial judge to reopen the case and retry the issue of Terri's wishes because of the Pope's recent pronouncement against removal of feeding tubes from PVS patients. I'll keep you apprised of future developments.

Times Follows End of Life Cases

What keeps thisNew York Times piece on clinical and moral interventions at the end of life from degenerating into an "also-Schiavo" piece is that it really reads like a set of cases where bioethics conversations are both necessary and effective. Jessica Berg of Case (and our new Book Review editor along with Mark Aulision) comments.