This is futile?

Mr. R is a 92-year-old man with advanced dementia who presents after suffering a pulseless electrical activity arrest due to an aspiration event while at his nursing home. He was resuscitated by paramedics at the nursing home with return of spontaneous circulation, and brought to the medical ICU. Against all odds, he was extubated five days later and was back at his non-communicative baseline. Less than 24 hours later, he had another pulseless electrical activity arrest due to an aspiration event and was returned to the medical ICU. In the medical ICU, Mr. R’s course is closer to the norm than the exception. For every young mother intubated due to acute respiratory distress syndrome from influenza or pneumonia, there seem to be 20 older patients with advanced cancer, advanced dementia, or some other chronic process advanced to the point of multi-system organ failure necessitating irreversible intubation, sedation, and inability for the patient to speak with family and loved ones. For house officers rotating through the medical ICU, these patients can be emotionally challenging. Every day, it is the house officer’s job to monitor and treat the failing physiologic functions of these critically ill patients and to discuss their never-changing prognosis with their ever-hopeful families. Often, the concept of medical futility is raised. In a seminal 1990 manuscript,¹ Schneiderman, Jecker, and Jonsen define futility as “any effort to achieve a result that is possible but that reasoning or experience suggests is highly improbable and that cannot be systematically produced.” They proposed that physicians should regard a treatment as futile when they conclude that it has been useless over the last 100 cases – derived either from reported empiric data or personal experience. Of course, they continue, the definition of “useless” is relative, and the principle of autonomy demands that patients be allowed to decide what outcomes they find meaningful. But they add that some situations should be regarded as universally futile, “the clearest” being “continued biologic life without conscious autonomy.” Some, though not all, of my critically-ill patients in the medical ICU seemed to meet this “clearest” of cases. They were extremely unlikely to have any chance of waking up and deciding for themselves whether they wanted to live or die. But talking to those patient’s families made me wonder if this was really such a clear case after all. It came down to a question of who had ownership of a patient’s death. Whose autonomy were we talking about? Once a patient is no longer in a position to make his or her own decisions, should we worry about what they would have wanted, or what his or her family actually wants? As residents, we put ourselves in our patients’ shoes. We cannot imagine any circumstance where we would want to live unconscious, unknowing, and attached to life-support machines. So we want for these hopeless cases what we would want for ourselves – a death free of the medical apparatus. Perhaps if we could talk to these patients, they would want the same. But maybe death doesn’t belong to the dying patient, or to the dying patient’s doctors, but rather to the family. After all, five minutes, five days, or five months after the officially declared time of death, the patient will be dead, and the doctors will be off taking care of other critically ill patients, but the patient’s family may still be trying to make sense of the finality of the death of their loved one. So maybe, as it becomes apparent that a patient will never have conscious autonomy ever again, our responsibility and mindset as physicians should shift. Maybe an intervention will not have an appreciable effect on how long the patient lives, or the patient’s quality of life, but it will help the patient’s family members live with the finality of their loved one’s death. Is such an intervention futile?  Maybe yes, in the strictest definition of the concept, but perhaps not so to the family. This question is, of course, complicated by the scarcity of resources and the millions of dollars spent on critically ill and dying patients. But rather than thinking just in terms of futility and of the ethical imperative not to harm our patients, maybe we should also think about these end-of-life decisions from the standpoint of those who survive.  

1. Schneiderman LJ, Jecker NS, Jonsen AR. Medical Futility: Its meaning and Ethical Implications. Ann Intern Med 1990;112:949