Within the pages of When Breath Becomes Air, one finds the at once inspiring and heart-wrenching account of a neurosurgeon, Paul Kalanithi, who succumbed to stage four cancer early in his career, and who brilliantly put pen to paper to reflect on medical ethics, on the humanity of medicine that can at times get lost in aggressive treatment, and on what it means to build a meaningful life. Such work speaks to that of Atul Gawande, whose Being Mortal likewise reflects on the role of modern medicine in shaping not only survival, but also the quality of life with which patients ultimately are left. Purpose, after all, is not universal, and indeed it is something with which Kalanithi grapples throughout his work of dually serving as physician and patient – whether to be a surgeon, a teacher, a writer, a husband, a father. Whether to be a writer for one year or a surgeon for five. With possibilities virtually limits where his intellectual capacity was concerned, within the confines of his illness, the choice was his, and as he notes, that feeling of purpose is itself fluid given the trajectory of his disease and the options before him.
Medicine is about healing, but it is multidimensional in working toward that end. Medical interventions almost invariably are accompanied by potential benefits as well as potential harms, thus leaving the patient to make some degree of cost-benefit calculus with respect to the decision whether to pursue treatment. Interventions can sometimes make us worse even en route to making us better. It can also, at times, be at odds with personal preferences for valuing quality of life versus longevity, a trade-off that is at the heart of deciding for oneself what it means for a life to be meaningful.
Indeed, for all the emphasis on saving human life, in some cases amid the needless to say important statistics and randomized controlled trials and the like, the human aspect of medicine is not always front and center amid discussions of longevity. And yet, buying one an additional five years is not always the goal if those years involve the notoriously difficult chemotherapy. Kalanithi writes:
“Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough. As a resident, my highest ideal was not saving lives – everyone dies eventually – but guiding a patient or family to an understanding of death or illness… For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved – their beloved whose sheared heads contain battered brains – do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love, all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery – or, sometimes more likely, no return at all of the person they remember. In these moments, I acted not, as I most often did, as death’s enemy, but as its ambassador. I had to help those families understand that the person they knew – the full, vital independent human – now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluid going in, others coming out, to persist despite being unable to struggle. Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I’d sought” (87-88).
The eloquence with which he writes on this subject is remarkable, though the substance is in some ways intuitive despite being an uncommon perspective to hear from within medicine.
While public trust in doctors has historically been high, the International Social Survey Programme (ISSP) survey of public trust in American physicians from 1966 to 2014 reflected a decline from 73% to 34% expressing great confidence in the U.S. medical profession, despite there not being a similar decline in trust in physicians’ integrity or honesty and ethical standards. Interestingly, a growing minority of Americans argue that doctors ought to do everything possible to keep their patients alive, though arguably it should remain on the patient’s terms. Perhaps surprisingly, the United States is tied for 24th place in ranking of the proportion of adults viewing doctors in their country as being able to be trusted. This is particularly problematic because medicine is a field in which there is extensive asymmetric information. In simpler tasks, one can educate oneself, become expert, fact check. Medicine requires rigorous training in medical school, residency, and fellowship, and thus there is a greater differential between patient and expert (potentially even, as Kalanithi writes, as a patient who is also a physician). This is all the more crucial a disparity when considering that people enter this system often at their most vulnerable (and under those vulnerable conditions, there can be adverse consequences of bad news being delivered poorly to patients).
This vulnerability makes all the more important the preservation of the human side of medicine, even if it requires a broadening of the understanding of what it might in fact mean to “do no harm.” The notion of being able to intervene with a medical “fix” is tempting, even if only a temporary fix as opposed to no fix at all, but as Gawande notes, having the different kind of conversation – one involving more listening than talking, considering of the broader set of options and priorities – is difficult, and is it a conversation for which many physicians are ill-prepared, but it is also essential to good patient care (certainly with respect to end-of-life care). There is perhaps no more painful example than that of cognitive deterioration due to such conditions as Alzheimer’s or dementia, with an intact physical body of an individual who is no longer recognizable.
There are several types of courage to which Kalanithi’s work speaks directly. The courage of a patient, who must by definition be patient in enduring tests, procedures, probabilistic outcomes rather than a definitive future, pain, and other unpleasantness that she can choose to endure, to rage against the dying of the light, or to, as in Longfellow’s “Thanatopsis,” wrap the drapery of his couch about him and lie down to pleasant dreams. There is the courage of the doctor in fighting in the face of medical uncertainty and uphill battles, but also the courage to know when to allow the patient to be in the driver’s seat, to find the optimal balance between professional command and humility. And the courage as human beings – patients, doctors, teachers, children, parents – to persist in the face of adversity as we so often do throughout our lives (whether with hurdles great or small), and to know at what point to accept the equally brave task of moving toward the next stage of life, or rather its completion. We are taught to fight, to win, to “beat it,” and that to do otherwise is to admit defeat. This is not a defense of preemptive defeat. But it is a defense of looking more broadly. Kalanithi’s work is a beautiful treatise on the macro-level concept of the meaning of life while digging into the important substance of the practice of medicine and patient care today, and the balancing of the competing goals with which practitioners and patients alike are faced.