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The Talking Cure: Atul Gawande Makes the Case for Humanism in End-of-Life Care

Many medical students made the choice to pursue their career path in their college years or even in high school, and nearly all doctors have chosen their profession by the end of their third decade. These are exhilarating years for young people. These are years where life can seem rich with freedom, opportunity, and, notably, with length. Dedicating a decade to medical training can seem like a choice that, though not easy, represents a worthy investment of one’s youth.

Atul Gawande makes this point in his latest book, “Being Mortal,where he cites sociological theory maintaining that youth and health are characterized by “opening outward,” welcoming both opportunity for change and sacrifice of one’s time as an investment in the future:

“In young adulthood, people seek a life of growth and self-fulfillment… We search out new experiences, wider social connections, and ways of putting our stamp on the world.” (288-289)

Undertaking the formidable labors of medical training embodies this embrace of the future, and thus as medical students, our life perspective can be markedly different from that of our elderly or terminally ill patients. Indeed, the same sociological theory proposes that people near the end of life share a common shifting of focus towards close relationships and the valued familiar aspects of their lives. However, when we as medical caregivers think about these patients, we often conflate proximity to end of life with a narrowing of human experience. We perceive this group as homogeneous in their priorities and their goals. Gawande counters that fallacy with the notion that people at the end of life are just like other people: you can’t know what they want until you ask them.

Most people feel uncomfortable thinking not only about death but also about the time in life immediately preceding death — whether that time is decades of old age or months in the case of previously-healthy younger people diagnosed with aggressive terminal illness. Gawande probes these topics with the kind of delicate curiosity and empathy I’d expect of an excellent social worker. He demonstrates the human impact of the often impersonal machines of elder care administration and paternalistic geriatric care with moving use of anecdote, like in the case of his wife’s grandmother, Alice Hobson, who moved to an assisted living facility when she became frail. While the staff’s vigilance kept her safe, her new living quarters “involved the imposition of more structure and supervision than she’d ever had before… When the staff became concerned that she was missing doses of her medication, they informed her that unless she kept her medications with the nurses and came down to their station twice a day to take them under direct supervision, she would have to move out of independent living to the nursing home wing” (209-210). Alice was unhappy and told Gawande that the facility just never really felt like home. This infantilization of a grown woman makes the reader recoil — of course Alice was unhappy being threatened with a forcible move should she not take her pills. Couldn’t the nursing staff have reached out to Alice about why she had missed doses? Couldn’t an offer to help her remember or an explanation of why the medications were important have deflected the need for such an ultimatum? There are lessons in patience and compassion to be taken from these stories.

No anecdote illustrates so well the importance of asking a person what matters to them when they are ill as the story of Gawande’s own father’s spinal cord tumor diagnosis. It was a jarring diagnosis for the previously healthy man in his early 70s. Gawande and his father sought opinions from two renowned neurosurgeons on how to proceed. While both offered surgery, the first grew resistant to the father’s many questions about the particulars of the case — he saw himself as an expert, “authoritative, self-certain, and busy with things to do.” This man could not or would not recognize the source of the questions — fear — and thus they couldn’t have a real conversation about the advantages and disadvantages of intervention, based on what mattered to the patient. The second surgeon, Edward Benzel of the Cleveland Clinic, engaged more deeply with Gawande’s father.

“Benzel had a way of looking at people that let them know he was really looking at them. He was several inches taller than my parents, but he made sure to sit at eye level. He turned his seat away from the computer and planted himself directly in front of them…He had that Midwesterner’s habit of waiting a beat after people have spoken before speaking himself, in order to see if they are really done” (601-602).

In exchange for his patience, Benzel uncovered what mattered to Gawande’s father — remaining fit to practice surgery. He was then able to explain to his patient that surgery could wait for a time because the risks of disability following surgery were great and the tumor was growing slowly, and what Gawande’s father wished for most was more time to enjoy his work. Many medical professionals are guilty of allowing this kind of humanism to fall victim to arrogance, paternalism, or simply the incredible busyness of their schedule. Many patients, less comfortable or less articulate than Gawande’s father, would follow their surgeon’s first recommendation even if they had serious reservations. Doctors possess a great deal of power in the doctor-patient relationship. Gawande demonstrates here that it is possible for doctors to give those patients facing life-threatening decisions dignity and self-determination simply by listening well.

Gawande’s last book, “Better,” explored simple, low-tech methods for improving surgical outcomes. In a profession where cutting-edge technology and beautiful facilities often impact fourth year students’ match lists, the idea of improving the fundamentals of medical care may seem quaint. But “Better” showed the benefit of this approach in the form of surgical outcomes data. “Being Mortal” adopts a similar argument: humanizing anecdote is shored up by hard data, and the most low-tech intervention there is — conversation — has a proven benefit. He cites a 2010 study from the Massachusetts General Hospital in which stage IV lung cancer patients were randomized to standard oncologic care and routine visits with a palliative care specialist, or just standard care. The palliative care consisted of conversations about goals and priorities for patients’ final months or weeks. Those receiving the palliative care stopped chemotherapy and entered hospice sooner — accompanied by decreased self-rating of suffering and living 25 percent longer than the control group. Several additional studies have reproduced these findings. Medical students are taught to use both evidence and humanism in practicing medicine, but sometimes these approaches can seem in opposition. Here Gawande uses the former to substantiate the latter, showing us how medicine at its best can progress.

Many problems in our current medical system — lack of health care for the poor, lack of access to abortion, stigma toward diseases of addiction and mental health — are purposefully sidelined from the public consciousness. Unless someone we love is directly affected by these issues, we distance ourselves out of ignorance, fear, a sense of powerlessness. Medical students, residents and attending physicians, alongside other medical professionals, perpetuate this larger attitude in their reluctance to take on discussions of difficult topics with their patients. But in “Being Mortal” Gawande shows us that one of the most fearful propositions of all – dying – can be made tangibly better by physicians when we begin a conversation about it with our patients. We can engage with the individual person to best understand how to make decisions with them rather than for them, at the end of their lives. Perhaps what we must take with us from this book is Gawande’s implicit suggestion that as the coming generation of doctors, we can not only follow this better way of caring for patients at the end of their lives, but we can use Gawande’s brand of evidence-based humanism to bring clarity to all manner of fearful experiences our patients may face.

Katelee Barrett Mueller Katelee Barrett Mueller (2 Posts)

Contributing Writer

Tufts University School of Medicine

Katelee Barrett Mueller is an eighth year MD/PhD student at Tufts University School of Medicine, with interests in clinical and translational research and narrative medicine.