by John D. Lantos, MD
Pullman and Hodgkinson present a case that, it seems, should have been an easy one. A competent adult makes a simple request to discontinue a medical therapy. Further, it was a therapy that he’d already tried so personal experience informed his preference to discontinue therapy. His request was repeated over time. He was determined to have adequate decisional capacity. So why did both the physicians and the bioethicists consider this to be a difficult case?
There are certain cases that lead to such dilemmas. They are cases in which emotions tug us in one direction and reason tugs in another. The best example of this type of situation is the difference between withholding a treatment and withdrawing the same treatment. Bioethical principles suggest that these two actions are ethically equivalent. Legal precedent shows that the law treats them as comparable actions. Yet both health professionals and families say that the two actions feel very different. Another example is the difference between withdrawing life-support in a patient who is awake and alert compared to withdrawing life-support in a patient who is unconscious. If the diagnosis and prognosis are the same, then the fact of consciousness does not change the legality or morality of the action. But they feel very different.
Many studies show that it feels different to turn off an implanted mechanical device than an external device. Huddle and Amos Bailey report that “[s]ome cardiologists have suggested that reluctance to deactivate pacemakers may stem from a sense that the pacemaker has become part of the patient’s ‘self.’” This is true even in situations that should be easier than the one described by Pullman and Hodgkinson, that is, in situations where the patient is terminally ill and has refused other life-prolonging treatments. Bevins shows that, even in terminally ill patients, “many clinicians remain reluctant to honor a request to deactivate a patient’s pacemaker.” Whitlock and colleagues compared clinicians’ experiences and showed that the deactivation of pacemakers caused greater moral distress than the withdrawal of other cardiac devices.
Of interest, it is not just health professionals who have such emotional responses. Kramer and colleagues studied patients’ and families’ attitudes about the deactivation of pacemakers. They report that “patients viewed deactivation of implantable cardiac defibrillators and pacemakers as morally different from other life-sustaining therapies such as mechanical ventilation and dialysis.”
One can only imagine what the responses would have been to a case such as the one presented, in which the patient was not terminally ill, had consented to the implantation of the device, and did not accept the fact that de-activation would lead to a higher risk of death. It seems likely that most clinicians and most patients would have had a strong negative emotional response to such a request.
The general response to such feelings has been to present rational arguments about why such emotions should not guide decisions, actions, or policy. That sort of response is amply illustrated in the Open Peer Commentaries to the case. Those responses have been characterized by Margaret Little as a bureaucratic model of morality by which “[r]eason is responsible for coming to the moral verdicts; it then passes its report on to the will, motivation, or emotion which then does or does not issue the appropriate response.” Importantly, by this view, emotions are not only unnecessary to the process of arriving at correct moral judgments. They are detrimental. Little writes of this view of emotions, “At best, they are irrelevant distractions, like so many pains and tickles. At worse, they are highly distorting influences.” Little argues against this view and suggests, instead, that emotions are crucial to an understanding of what any moral dilemma is truly about. “Possessing appropriate affect,” she writes, “turns out to be a necessary precondition for seeing the moral landscape.”
Nussbaum sounds similar themes and suggests that emotions cannot be separated from reason because emotions are the result of reason. She writes, “Human emotions are not simply blind surges of affect, stirrings or sensations that arise from our animal nature and are identified by their felt quality alone. Instead, they themselves have a cognitive content.”
How do these ideas about the role of emotions inform our view of the case presented by Pullman and Hodgkinson? I think it is a case in which the emotional responses were right and reason was wrong. The emotional responses told people that something was just not right, although, by the bureaucratic model of morality, those feelings were discounted and ordered to defer to reason. The net result was that the patient made a bad decision, one that he himself eventually regretted and one that left him worse off than he was before. As a result, he made a bad decision that left him worse off than he was before. Even he seemed to realize that it was a bad decision. In addition, his bad decision was costly for the rest of us, both in terms of the direct health care costs of treating his preventable cardiac events and in the long term cost of his ongoing health needs. Only a bioethicist whose passion for reason was so strong that it blinded him to the important role of emotions would think that our guiding principles would have been sufficient in this case.