A federal appeals court decided yesterday that terminally ill patients do not have a constitutional right to access highly experimental treatments for their (terminal) conditions, following a longstanding tradition among bioethicists that refuses to see terminally ill patients as disposable.
(Yahoo article here)
While a dissenting judge was appalled at the court's apparent willingness to interfere in what she considered a private choice to pursue life at all costs, I think the writer of the majority opinion and the FDA spokesperson who commented on the decision had the better view of the status, if you will, of terminally ill patients.
The FDA spokesperson was quoted as saying that the decision appropriately balanced the needs for public safety and access to as yet unproven treatments. In her view, then, the terminally ill patient is still a member of the public whose safety the FDA was founded to protect. Like all other patients, the terminally ill patient can be taken advantage of by researchers (whether unscrupulous or merely overoptimistic) and can be harmed by lack of proper scientific knowledge. Their desperate circumstances must not be seen as an excuse to forgo the normal protections and safeguards which are given to the general public (even if the same circumstances lead them to wish to forgo those protections themselves).
The writer of the majority opinion implied the same valuation of the terminally ill patient--their deaths could be hastened by an unapproved treatment, and that premature death would be as much a tragedy as if it were a non-terminal patient.
While the desire to extend every possible opportunity for a terminally ill person to be healed is laudable, it often goes along with a more sinister (and usually unarticulated) re-valuation of the place of the terminally ill person in society. Virtually every time it is proposed that rules, procedures, standards, and policies be different for the terminally ill patient, the difference is intended to mark a separation of the dying patient from the general public, even when the differences are intended to benefit the dying patient. These special policies and procedures proclaim, "The dying person is a different kind of person. The normal rules don't apply."
If this breaking of the "normal rules" meant an increased participation in the life of the community (as in some monastic orders, where the community rushes to the bedside of the dying brother or sister to be with him or her in death, even if it means that the liturgical practices of the community are interrupted), I would be for it.
But it never does, does it?