Academic journal article The Hastings Center Report

Knowing What's in Store

Academic journal article The Hastings Center Report

Knowing What's in Store

Article excerpt

In April, at a conference on caring for persons with advanced heart failure, I attended a presentation on the use of expensive new technologies like the implantable cardioverter defibrillator (ICD), which when implanted into the Chest or abdomen can detect abnormal heart rhythms and shock the heart back into normal rhythm. Clinicians were concerned about the quality of the ICD informed consent process; some patients who had the devices apparently did not realize that ICDs save lives by administering a powerful jolt of electricity, and they were totally unprepared for the experience when the ICD went off. Conference attendees suggested a project to develop patient education materials.

Giving patients information in a form they can use is a good idea, but a more basic problem also deserves attention: the inadequacy of the available information. This is a perennial problem in health care. A new drug or device must undergo clinical trials before it is approved, but the trials can include only carefully selected people, treated under a strict protocol. In other words, the trials provide ICDs in circumstances quite unlike those that prevail in routine care, and they largely exclude the kinds of people who will eventually be candidates for them.

We don't need information about every possible user in every possible setting before we give anyone access to ICDs. Nevertheless, once they are in routine use, we could and should develop information on what happens to the patients who get them. Yet we don't have the infrastructure in place to do this.

When I've raised this point over the years, in various contexts, I've emphasized that we need to understand a technology's benefits, harms, and costs in actual use to make ethical decisions about allocating scarce resources to it. …

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