Ethical dimensions of enhancement technologies

Questions of consequence in biomedical ethics

I have worked in the field of bioethics for 20 years at two major academic medical centers. During that time, certain questions arise with a remarkable level of frequency. In a few instances, however, the consensus view of the most appropriate ethical response to certain questions has evolved. We will consider three of those questions in this column.

1. What should a physician do when she believes a patient is making a “wrong” decision?

For at least the last four decades in the U.S., the predominant principle of biomedical ethics has been respect for individual patient autonomy. The concept of the patient as an autonomous moral agent is in stark contrast to the prior history of Western medicine when the reigning paradigm of the physician-patient relationship was paternalism. The doctrine, or principle, of informed consent was fashioned in the crucible of the courts and only thereafter came to be recognized by the medical profession as having an ethical dimension arising out of the fiduciary nature of the physician-patient relationship.

Arguably the most important contribution of bioethics to the practice of medicine was illuminating the fact that decisions about patient care, because they can dramatically impact the lives of individuals, are not purely matters of objective medical science. Invoking two other core bioethical principles, beneficence and nonmaleficence, determinations as to when and under what circumstances a particular medical treatment or intervention will provide greater benefit than harm are value-laden, and the relevant values that must be taken into account are those of the patient as much as, if not more than, those of the physician.

Because the preferred model for the physician-patient relationship in this age of autonomy is shared decision-making, old style “doctor-knows-best” hard paternalism is unacceptable. If a patient willingly cedes decisions about treatment to the physician – a circumstance which actually should give physicians pause – this is nevertheless an exercise of autonomy. However, a form of soft paternalism, in which the physician more fully engages with the patient who possesses decisional capacity yet nevertheless seems to be making an irrational choice, is not merely acceptable but ethically obligatory to insure that the patient understands and appreciates, to the fullest extent possible, the nature and likely consequences of the decision. If, after this exercise of due diligence by the physician, the patient stands firm, then the physician’s duty is to respect that choice or refer the patient to another who will.

2. If I discontinue life support at the request of a patient or a surrogate decision maker am I ethically (and legally) responsible for the death of the patient?

Inherent in this question are two critical and complex elements – causation and intent. As technology in critical-care settings advanced in the latter part of the last century, two phenomena became manifest. One was an unrealistic expectation of the lay public that these developments in medical science would allow us to defy our mortality and ultimately heal the mortally ill. The other, in stark contrast, was that people would, against their wishes and best interests, be hopelessly and indefinitely tethered to artificial life support by physicians in thrall of the technological imperative. Out of this cauldron bubbled up the toxic stew of “medical futility,” a topic which could consume an entire column or, indeed, series of columns.

The pendulum has actually swung in recent decades from a situation in which physicians were viewed as inflicting medically futile measures on unwilling patients to one in which patients or families seek to compel unwilling physicians to continue life-sustaining measures on patients whose conditions are beyond the powers of medicine to cure or even ameliorate. When physicians in these circumstances broach with patients and/or families the discontinuation of life-sustaining interventions and shifting the focus of care to palliative measures, they are not manifesting an intent to kill the patient, but rather to facilitate a natural death unburdened by medical interventions that are no longer conferring a benefit, but rather a burden on the patient.

Nevertheless, a small but highly respectable minority of bioethicists challenge the prevailing view that physicians are not causally linked to the death of their patients when they withdraw life-sustaining measures because the patient dies of the underlying disease. Such a conclusion, they maintain, is nothing more than a “moral fiction.” Their thesis is based upon an understanding of causation providing that if “but for” the discontinuation of the intervention the patient would not have died when and as she did, then the act of discontinuation constitutes the factual cause of the patient’s death. This conclusion does not warrant the view that the physician’s conduct was wrongful if the discontinuation was based upon the informed and voluntary consent of the patient or the patient’s proxy.

3. Do I have an ethical responsibility to disclose medical error?

In 1999, the Institute of Medicine report “To Err is Human” brought to wide public attention how pervasive medical misadventures are, noting that the annual mortality rate from preventable medical errors in hospitals exceeds that from automobile accidents. The traditional approach to such situations, in which physicians routinely took their marching orders from institutional risk managers and defense attorneys, was “never apologize, never explain.” This “duck and cover” approach, as one prominent commentator recently noted in the New England Journal of Medicine, “unbalances the ethical compass of today’s physicians,” who have been trained and enculturated in the informed consent/shared decision-making paradigm. A patient’s right (ethical and legal) to know, and hence the physician’s duty to disclose information that is essential to understanding the important aspects of one’s medical circumstances, has now passed beyond any reasonable dispute.

Fortunately, there is growing evidence that truth-telling on the part of physicians, even in the event of injury-producing medical errors, does not constitute an admission against interest. Over the last decade, a number of health-care institutions have implemented “communication and resolution” programs, in which patients and/or families are promptly notified of medical misadventures and engaged in discussions concerning what happened, how it happened, what will be done to reduce the risk that it will happen again, and to provide reasonable compensation when appropriate to the circumstances. The data on the outcomes of these programs offers a striking example of “doing well by doing good.” Rather than, as most skeptics feared, increasing the number of liability claims, both paid claims and median payments declined substantially.

All three of these topics and their evolutionary development in our social and professional ethics reveal how both accurate information and clear communication are absolutely essential to good medical practice and sound ethical decisions.

Columnist Ben A. Rich, J.D., Ph.D., holds the UC Davis School of Medicine Alumni Association Endowed Chair in Bioethics