End-of-Life Disputes: Who Should Decide?

The repercussions from the Terri Schiavo case have just begun. That is so, of course, because the main issue remains undecided: what the state should do when a person’s guardians and loved ones are in dispute over what should be done in dire medical situations if the individual has left no clear, written instructions.

The question, of course, will be whether the issues are best handled at the state or federal level. I am inclined to favor state autonomy in the matter, even though the Florida courts and legislature seem to have dropped the ball on this one, the latter in creating laws too ambiguous to handle the sorts of difficult cases they were evidently meant to deal with, and the former in refusing to consider many issues brought up in the appeal.

The worst job, however, clearly was done by the lawyers engaged by Terri Schiavo’s parents, in failing to bring up important matters during the original court proceedings, which allowed the appeals court to ignore the arguments later. (It is important to note, however, that the Florida courts did not have to ignore these arguments but chose to do so, albeit with perfectly good legal justification).

The role of government in these matters ought to be quite clear: to adjudicate conflicts between competing interests. In all such cases, clarity in the laws is essential.

My preference is that such decisions be made as close to the source as possible. (I should note here that I was not one of the writers who called for congressional action in the Schiavo case.) First, there is the choice to be made by the individual. In this case, that means a well-written living will or similar document. Failing that, the decision should be made by the person’s guardian, if any, and immediate family. The problem in the Schiavo case, of course, was that there was no agreement among the family on what Terri’s wishes would have been, nor on what was best for her.

If no consensus can be reached among the family, then of course the government must intervene. The medical community, in my view, should not be the actual decision maker, and should follow two rules: first, do no harm (which precludes any active participation in euthanasia in any form); and second, execute the wishes of the individual or family. If the family’s wishes conflict with the first rule, the person should be removed from medical care and the agreed-upon treatment should be administered.

To do otherwise would risk corrupting the medical profession severely.

Of course, given the publicity surrounding the Schiavo case, the press is on for federal legislation.

An article in today’s New York Times noted, “some Democrats, prodded by advocates for the disabled, say Congress should consider whether [a law allowing the federal courts to review disputed cases like that of Terri Schiavo] is needed.”

On the ABC-TV program This Week with George Stephanopoulos, Massachusetts representative Barney Frank (D) said, “I think we should look into this and very possibly legislate it,” although he had opposed the more narrowly targeted law Congress passed regarding the Schiavo case. Frank said, “I think Congress needs to do more. Because I’ve spoken with a lot of disability groups who are concerned that, even where a choice is made to terminate life, it might be coerced by circumstances.”

The Times article noted that the two groups pressing for legislative action on the matter— Christian conservatives and advocates for the disabled—have not gotten along very well in the past, and are taking conflicting approaches: “it is unclear whether Christian conservatives and disability rights advocates can agree on what action Congress should take. Tony Perkins, president of the Family Research Council, a Christian conservative group, said on Sunday that his organization was working with states to urge them to pass measures that would prevent the withdrawal of nutrition from patients like Ms. Schiavo.

“Mr. Perkins said state action was ‘the preferred route,’ adding, ‘In certain circumstances there may need to be some federal action, but I would not advocate a broad brush stroke of the federal government to try to prevent this from happening again.’

The approach that Perkins suggests is the right one, in my view. A broad federal law—or worse yet, an overarching Supreme Court decision based on emanations from the penumbra of the Constitution—would surely be a classic illustration of the adage that hard cases make bad law. And this was a very hard case indeed.

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One thought on “End-of-Life Disputes: Who Should Decide?

  1. “The medical community, in my view, should not be the actual decision maker, and should follow two rules: first, do no harm (which precludes any active participation in euthanasia in any form); “

    That’s fine, but make sure you don’t then bemoan how barbaric it is to dehydrate someone to death as you’ve already precluded the more humane options.

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