If bioethics has central or recurring questions, this is surely one of them. And, of course, the problem, or question, often is restated to: who decides if this life is worth living? The confounding elephant in the room is that families often have more hope than care providers, and the evidence is mixed on whether either party is particularly accurate in projecting the future.
Hannah Arendt in her book The Human Condition described in detail how humans must make choices without knowing outcomes. Everyone (except neurologists) loves the stories about people coming out of comas and persistive vegetative states. Neurologists are not fans because it admits to an inability to predict—even being right 98% of the time isn’t enough.
Obstetricians face this problem constantly, but with different stakes. We know fetal heart rate monitoring is far from perfect, but none of us would ignore a bradycardia of several minutes. Maybe this baby is actually dying, and we aren’t going to take the chance. When is non-existence acceptable in my specialty? Only when the pregnant woman has decided it is so.
At both ends of life, non-existence, the ultimate existential question, is left to patient and family values, because there is no cultural/societal consensus. Inuit tribes expected the elderly and infirm to walk out into the ice when times got tough, and food was scarce. Our culture rejects this, but medical students often question why we keep alive an individual with no hope of recovery and little or no awareness of their surroundings or condition.
I am not a utilitarian, and I am not defending any of Peter Singer’s views. But I still wish that we did not prolong suffering, or pour resources into a life without awareness of its own self. Families struggle with these decisions, and often choose the conservative choice thinking that hope is better than non-existence. Those of us in medicine tasked with keeping these fragile physiological flames burning often ask ourselves whether we are doing harm or good. Until we reach (if ever) a societal consensus, we should share with decision makers our moral ambiguity and sense of regret when we support their loved ones against our better judgment. Is this enough? Perhaps not, but we are not yet even doing this with consistency.
The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.