The Bell Tolls

Being Mortal: Medicine and What Matters in the End

Terminal illness, advanced aging, and the inevitability of death- sure to put a damper on any casual conversation, it comes as little surprise that disheartening topics such as these are normally avoided.  Drawing upon his experiences within the medical community and personal losses, Boston-based surgeon Dr. Atul Gawande emphasizes the harm in ignoring these issues of universal importance in his newest publication Being Mortal: Medicine and What Matters in the End. Gawande encourages his audience to lift the taboos surrounding the subject of death, seeing this as a means to improving society’s treatment of the aged and incurable. Writing as a surgeon, son, and journalist, Gawande’s Being Mortal provides a valuable glimpse into present-day medical approach to death and the defective institutions surrounding it.

Gawande recalls becoming absorbed by these matters ever since medical residency, when he witnessed firsthand the death of a patient. Although the fresh cadaver must have been an unpleasant sight, Gawande describes being unsettled for other reasons. His lack of mental preparedness for scenes like the one he just saw was unsettling. The man who passed had been considered terminally ill for years by medical professionals. He died filled with cancer, clotting blood, and countless other side effects from invasive, last-ditch efforts to prolong his life.

As a medical student, Atul Gawande had been taught only how to cure sick patients, not how to deal with situations in which death is inevitable. With this in mind, Gawande remembered a text he had studied in medical school – Leo Tolstoy’s 1886 novella The Death of Ivan Ilyich. The tale tells the story of Ivan, a man who falls victim to a serious illness.  Ivan’s illness deteriorates his physical and mental state, but his friends refuse to discuss the topic of death. Insisting that he just hasn’t found the proper cure yet, Ivan is left to die alone. The late nineteenth century is light years away from the present in terms of medical advancement. Doctors can now cure disease like they could at no other time in world history thanks to recent technological innovations. Why, then, has modern medicine not drastically changed its approach to treating the terminally ill? Distraught by the notion that the twenty-first century medical approach to death is no better, and perhaps worse, than it was in Tolstoy’s era, Gawande began his investigation of the improvements and shortcomings of our current system.

Detailing what could possibly be the furthest alternative to the modern American nursing home, Gawande gives an account of the final years of his grandfather, Sitaram. Living in close quarters with his children and grandchildren, Sitaram always received the support he needed to preserve his desired way of life well into old age. Until his death at age 110, Sitaram lived as independently as he wished. This included maintaining routines that would be unthinkable for a person of his age in the West, such as making daily rounds of his property on horseback and visiting nearby towns.

To some extent, until the onset of social security and pensions, elderly care in the United States resembled a multi-generational support network that individuals could rely on as they aged. It was not uncommon for one child, usually the youngest daughter, to remain at home as a source of dependency. Without familial support, older people unable to care for themselves were doomed to the poorhouse along with the mentally ill and drunkards, among others. Often underfunded, dilapidated, and inhumane, poorhouses were certainly not a favorable option, but the only option left for the elderly upon reaching a certain level of frailty. Catalyzed by the Second World War, the era of modern medicine resulted in a booming number of hospitals.  Those unable to care for themselves now fled to hospitals, and poorhouses emptied. Specialized units equipped to provide medical treatment for the elderly cropped up; these would become the first nursing homes.

Nursing homes provided a more hygienic environment for the old and sick and increased access to medical treatments. However, while they may offer certain benefits and be far more favorable than poorhouses, nursing homes were built upon a mission of curing those in an “extended period of recovery”; they have never been equipped to properly handle the emotional or spiritual needs of those at death’s door.  Exemplifying the major shortcomings of modern nursing homes, Dr. Gawande recounts the final decades of his wife’s grandmother, Alice Hobson. Prone to falls and detrimental mental lapses, Hobson, a widow, could no longer live independently. Relenting to the forceful encouragement of family members, Hobson abandoned her longtime home and relocated to Longwood House, a nursing home. The rigid structure of the nursing home was evidently detrimental to Hobson’s spirit.  Sacrificing her autonomy for the heavily-safeguarded environment of Longwood House, Hobson was stripped of the privacy and independence she so valued. Gawande’s final notes on Hobson describe her as a deeply depressed individual, linking the lack of emotional support provided by the nursing home to Hobson’s passivity towards her own death. “…The official aim of the institution is caring,” Gawande writes, “…but the idea of caring that had evolved didn’t bear a meaningful resemblance to what Alice would call living.” Alice Hobson’s unfortunate experience in Longwood House need not be the norm, argues Gawande. Advanced elder care must allow for a middle ground between safety and emotional well-being.

This balance cannot be attained unless one understands what makes life enjoyable and purposeful for the elderly, specifically for those unable to live independently. In an effort to better comprehend the perspective of those who are in the final stages of their lives, Gawande studies the work of Laura Carstensen, a Stanford psychologist. What Carstensen’s data illustrated is significant. Regardless of age and nationality, respondents confronting the reality of a near death condition (such as terminally ill HIV/AIDS patients and nonagenarians) most valued spending their time nurturing preexisting relationships and simple, everyday pleasures over expanding their social networks. Conversely, young and healthy subjects – those less affected by the notion of death – preferred to spend their time investing in new relationships and traveling.  Referencing the work of philosopher Ronald Dworkin, Gawande also emphasizes the importance of allowing the aged and debilitated to maintain autonomy. Permitting the elderly to “be the authors of their lives” would be a crucial difference between nursing home patient and a prison inmate.

Gawande provides the example of “assisted living” communities as proof that advanced elder care can successfully incorporate those simple, everyday pleasures that are missing from the more rigid institutions of hospitals and nursing homes.  In 1983, the first “assisted living” center was founded in Oregon by Keren Wilson. Some considered the experiment both risky and radical– unlike nursing homes, residents were allowed private rooms and free rein over their daily schedules. Nurses were there to help if needed, but for the most part, residents lived however they pleased. Despite the early skepticism, “assisted living” communities proved to be more, not less, beneficial for elders’ health. Similar establishments sprung up across the country to feed the sudden demand for assisted living. Although most assisting living centers shared the same core values as their hospital predecessors, they varied in both size and form. Keren Wilson’s unlikely success was soon to be followed by other notable experiments in elderly care, such as Bill Thomas’s work at Chase Memorial Nursing Home in rural New York.  Thomas, a graduate of Harvard Medical School and native to Upstate New York, was distraught by the lifelessness of Chase. Convinced that he could significantly improve patients’ spirits by simply introducing “life” to Chase, (in the form of children, plants, and animals), Thomas had the chance to test his theory thanks to a small state grant. Consistent with Gawande’s earlier observations, integrating Chase with the outside world and pulling back many of the nursing home’s stricter regulations drastically improved patients’ moods and health.

The manner of Dr. Gawande’s writing throughout the majority of Being Mortal is much like a reporter’s. As Gawande becomes familiar with the stories of people on the brink of death, he functions as not much more than a window into others’ lives.  His interjections are brief and directly related to the matter at hand. Upon the discovery of a dangerous and potentially lethal tumor in his father’s spine, Gawande abandons the role of rational doctor. Distressed, desperate, and ridden with denial about his father’s prognosis, Gawande now fills the role of “unreasonably hopeful family member” – the same kind of person he had become accustomed to dealing with in his medical practice.

Gawande, now confronted by his father’s crippling disease, must now contemplate the topic of death from a purely emotional perspective rather than one of medical ethics. It is at this point where the most challenging questions arise. No longer shielded by his position as accessory storyteller, Gawande now faces decisions that are not only ethically obscure, but personally agonizing.  Death, once considered a natural phase of human life, becomes an enemy to be defeated. Making the best possible decisions for his father’s health proves to be a risky numbers game, every new surgery requiring Gawande to wrestle with the success vs. failure rates of each procedure. Gawande looked to the writings of the late Stephen J. Gould, a famous Harvard professor and evolutionary biologist who outlived his prognosis by over fifteen years. Refusing to accept that his death would come so soon, Gould decided to aim for “the long trail of possibilities” at the end of the bell curve instead of focusing on its middle. Gawande began to do the same for his father, seemingly encouraged by Gould’s belief that there is a rational basis to being hopeful.

Perhaps due to his previous experience dealing with the mortally ill, Gawande proved capable of setting his personal convictions aside when considering father’s wishes. It was understood that a patient’s response to the all-important question (“What is important to you?”) must be treated as paramount in every medical decision made for that individual by others.  Gawande tells of Jack Block, a retired professor who sought surgery to remove a tumor from the spinal cord of his neck. The procedure carried a twenty percent chance of rendering Block quadriplegic. His family posed the question, “What is important to you?”, and Block responded, “Well, if I’m able to eat chocolate ice cream and watch football on television, then I’m willing to stay alive.” The medical team performing Block’s operation was instructed to remove the tumor at all costs, as long as they were confident Block could continue to eat ice cream and watch football. Jack Block’s case would be treated as a precedent when Gawande’s father underwent a similarly risky surgery years later. In the wake of his father’s diagnosis, it became apparent to Gawande that frank end-of-life conversations, such as the one held between Block and his family, are all too rare.  Modern medicine can stave off death like never before in history, yet we are left incredibly unprepared for crucial end-of-life conversations when death inevitably wins.

Being Mortal is first and foremost a call for change from one of the medical community’s most respected voices.  Despite his success as an author and impressive medical credentials, Atul Gawande approaches the topic of death in a way that is easily relatable and innately human. Ensuring the dignity and autonomy of the individuals, no matter how old and frail, is of primary importance to Gawande and remains a consistent theme throughout his book. Understanding this, Gawande’s disillusionment with institutions such as modern nursing homes comes as no surprise. Although Gawande urges for radical changes within certain subsets of the medical community, his reason for doing so – allowing everyone to be the author of his own life – is far from radical.