Words&Dirt

I have spent the last two months going through the approval process to volunteer at my local hospice center. As a supplement to the excellent training I’ve received, I thought Atul Gawande‘s Being Mortal would be a useful companion as I learn to support dying people and their loved ones. As a surgeon, public health expert, and accomplished writer, Gawande is perfectly-situated to provide readers with an engaging and heartfelt journey into the history and current state of our medical understanding of death, as well as the intimate ways that medicine and death have intersected in his personal life.

In the sensitive realms of elder and end-of-life care, Gawande’s main point of critique is that the American medical system has refused to accept the true nature and grave implications of death. This has led to an overmedicalized, technologically-driven process that not only stifles most people’s ability to confront death on their own terms, but also tends to worsen their quality of life. Here’s how he articulates the problem:

I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answer to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering…Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might actually live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers. (8-9)

The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet––and this is the painful paradox––we have decided that they should be the ones who largely define how we live our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.

That experiment has failed. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done. (128)

Although Gawande doesn’t downplay the seriousness of this collective failure, he’s neither cynical nor fatalistic about how we got here and how we can improve. Like any good physician, he’s eager to consider new possibilities, especially when they have a chance to increase the well-being of those in his care. To this task, he brings an effective combination of institutional analysis and psychological framing.

Gawande’s brief history of how people die focuses on the American experience, but also draws from several other countries, primarily India (he is the son of Indian immigrants). Gawande explains various medical theories about the aging process, and also recounts how America created nursing homes, which he characterizes as “institutions that address any number of societal goals––from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly––but never the goal that matters to the people who reside in them: how to make life worth living when we are weak and frail and can’t fend for ourselves anymore” (77). Concern with giving people a “life worth living” is scattered throughout Being Mortal, revealing Gawande’s commitment to this age-old philosophical question.

Rejecting our inadequate and dehumanizing solutions to the “problem” of death, Gawande seeks out individuals and organizations who are trying something different. The highlights include how Keren Brown Wilson created the first assisted living facility in Oregon, Bill Thomas’s introduction of animals at Chase Memorial Nursing Home, and the increasing use of hospice care as an alternative to risky or experimental treatments that are likely to create undue suffering in a person’s final stage of life. Gawande’s depiction of hospice is particularly positive, overturning the common misconception that accepting hospice care means “giving up.” “The lesson seems almost Zen,” he writes, describing the encouraging outcomes for patients who favor palliative and hospice care: “You live longer only when you stop trying to live longer” (178).

Given my personal interest in psychology, I was even more interested in Gawande’s exploration of the mental models we use to think about, communicate, and integrate death into our societal and personal narratives. His humanistic approach is rooted in humility, focusing on creative adaptation and graceful acceptance in the face of nature’s inevitable terminations. He advocates for a medical paradigm shift away from “fixing” or “curing” and toward forms of pragmatic management that give dying people their best possible chance of having a good day, everyday, for the rest of their lives. I was captivated by his analysis of the relationship between Abraham Maslow‘s hierarchy of needs and Laura Carstensen‘s socioemotional selectivity theory:

Our driving motivations in life, instead of remaining constant, change hugely over time and in ways that don’t quite fit Maslow’s classic hierarchy. In young adulthood, people seek a life of growth and self-fulfillment, just as Maslow suggested. Growing up involves opening outward. We search out new experiences, wider social connections, and ways of putting our stamp on the world. When people reach the latter half of adulthood, however, their priorities change markedly. Most reduce the amount of time and effort they spend pursuing achievement and social networks. They narrow in. Given the choice, young people prefer meeting new people to spending time with, say, a sibling; old people prefer the opposite. Studies find that as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present more than the future. Understanding this shift is essential to understanding old age. (93-4)

How we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, you believe you will live forever. You do not worry about losing any of your capabilities. People tell you “the world is your oyster,” “the sky is the limit,” and so on. And you are willing to delay gratification––to invest years, for example, in gaining skills and resources for a brighter future. You seek to plug into bigger streams of knowledge and information. You widen your networks of friends and connections, instead of hanging out with your mother. When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid––achievement, creativity, and the other attributes of “self-actualization.” But as your horizons contract––when you see the future ahead of you as finite and uncertain––your focus shifts to here and now, to everyday pleasures and the people closest to you. (97)

I was also delighted to discover the words of Josiah Royce––a lesser-known American philosopher whose work has greatly influenced me––in these pages:

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.” In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential. (127)

Gawande artfully weaves Royce’s concept of loyalty into his philosophy of death, and even taps into the human need for transcendence that Maslow hinted at and that Scott Barry Kaufman later illuminated in his exceptional book, Transcend. This all syncs up beautifully with my foundational values and recent vocational pursuits.

I didn’t find much to criticize in Being Mortal, but in my view there is a rather obvious lacuna in Gawande’s text. He doesn’t mention anything about the role that pharmaceutical and insurance companies play in influencing end-of-life care, either positive or negative. Given the massive size and impact of these industries on all aspects of American healthcare, I would have liked to know his views on whether they are making the situation better or worse. My personal experience and biases lead me to assume that drug and insurance companies are, on the whole, probably more of an obstacle to good care than anything else. If that’s true, it would be nice to get validation from an expert. And if not, I’d be happy to have my assumptions challenged. Perhaps Gawande didn’t want to go there for political or economic reasons, or just didn’t feel like it was his place to comment. Or maybe he has covered this in other writings? Whatever the case, I think this omission makes Being Mortal less informative and comprehensive than it could have been.

One last quote before I go:

A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals––and millions of them are seizing the opportunity. But this is an unsettled time. We’ve begun rejecting the institutionalized the version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase. However miserable the old system has been, we are all experts at it. We know the dance moves. You agree to become a patient, and I, the clinician, agreed to try to fix you, whatever the improbability, the misery, the damage, or the cost. With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time. And that would include me, whether as a doctor or simply a human being. (193)

Gawande’s contribution to this “monumental transformation” is commendable. Since Being Mortal was published in 2014, I have noticed a growing sea change in the areas he is trying to improve. We still have a long way to go, but with time and a lot of hard work, we can all play a role in helping people die with dignity and compassion, attended by loved ones, and knowing that their stories and cherished loyalties will live on in those left behind.

Rating: 8/10