One typically thinks of advances in medical science and technology as unalloyed benefits. The ability to cure illness, mitigate pain, and make more accurate diagnoses are some of the uncontroversial results of medical progress. Yet as a new study of vegetative states demonstrates, such advances can raise ethical quandaries for physicians and the families of patients diagnosed as vegetative. The study, conducted in Belgium and published in the British medical journal, Lancet, showed that using the brain-scanning technique known as positive emission tomography (PETs) provided a more accurate neurological assessment than other devices, such as MRIs. The assessment provides more information about “minimally conscious” states, originally thought not to exist in such patients. Evidence from recent research demonstrated the existence of minimal consciousness in vegetative patients, but without the details that emerged in the Belgian study. It revealed that not only do patients who are minimally conscious have some level of awareness or responsiveness, but they may have some chance of improving to regain higher levels of consciousness.
Why does this new research pose ethical quandaries? Aside from the acknowledgment by a researcher in the Belgian study that the diagnostic technique is not ready for routine use, a bigger problem is uncertainty in its ability to predict significant improvement or recovery. This can lead to “false positives”–diagnoses that show minimal consciousness and a prospect of improvement in brain function when that will not occur. This situation produces uncertainty among medical experts and families hopeful that their loved one will recover cognitive function. As the Belgian researcher stated, “We shouldn’t give these families false hope.” In such circumstances, both physicians and families may be unlikely to remove life supports even after a significant time has elapsed, creating anguish about whether and when to “pull the plug.” Until recently, the problem of uncertainty was that of “false negatives”: diagnoses that patients in a vegetative state had no consciousness at all when, in fact, they may have been minimally conscious. With the new study, uncertainty about eventual improvement looms as a barrier to timely decision making. It is often the case that lingering uncertainty is worse for people who have to make decisions than receiving a bad prognosis that is definitive.
Some controversy still exists regarding the ethics of removing ventilators or artificial feeding from patients diagnosed as having no chance of recovery. Although families’ willingness to have life supports removed from their relatives is now more common than refusal, opposition remains strong among some religious groups. The new evidence may lead to changes in families’ agreement to terminate life-sustaining treatment. And while the use of PET scans for this purpose is not ready for prime time, as further studies confirm the results people may begin to demand this diagnostic technique on a routine basis.
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A minority of people in the US have advance directives (formerly called “living wills”)–instructions they make while fully competent about what they would want to happen if they lose decisional capacity. Yet among those of us who have executed such documents, the question arises: Should we consider revising them in light of this new research? The standard wording in some advance directives says: “I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment…if I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness” (this choice not to prolong life appears in the New York State template for the advance directive). Should such standard wording in forms provided by states now be amended to include mention of “minimally conscious states”? The other option in the form–the choice to prolong life–says: “I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.” If and when the use of PET diagnoses of vegetative states becomes an accepted health care standard, will that change the choice of people who make advance directives?
These questions lie in the future. But as many in the field of bioethics urge, it is better to begin thinking about and discussing future medical scenarios before they are upon us.
