“Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely – that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.” Atul Gawande, Being Mortal.
Both narrative and informative, Being Mortal: Medicine and What Matters in the End, is Atul Gawande’s (@Atul_Gawande) in-depth exploration of end-of-life care. This highly acclaimed book brings readers to a heightened understanding of the complexities of aging and dying and the equal struggle physicians and patients undergo when making end of life decisions. Through historical references, personal observations, and citations from academic literature, Gawande encourages us to critically examine common notions about modern aging and terminal illness.
At the center of Being Mortal, is a reminder of the natural course of life and death, and the role of medicine during this process. Gawande begins the book by introducing the reader to Tolstoy’s, The Death of Ivan Ilyich, a book he was assigned to read in medical school, which is his only memory of discussing mortality during those early training years. Ivan was a man in his mid-forties, a social elite of his time who became suddenly ill. Gawande explains that what tormented Ivan most, was that no one spoke of dying – not his doctors, friends, or family. He wished to be cared and pitied above all else, yet those who surrounded him failed to acknowledge his suffering. The lack of compassion and honesty of death was the ultimate tragedy.
Through various narratives, Gawande paints a picture of what aging looks like in modern times. He compares the story of his wife’s grandmother, Alice Hobson, an elderly woman reluctant to give up living alone for the safety of assisted-living, to the story of his own grandfather, Sitaram Gawande, a man who aged alongside his multi-generational family in rural India. Gawande reflects that medical advances have allowed people to live longer lives than ever before in history, yet this progress is also responsible for a shift in the culture of dying – where death is most likely to occur between hospital walls, a mere medical experience. This is a change, Gawande argues, that we have not prepared well for.
Sharing his interviews with the elderly as well as experts in elderly care, Gawande highlights the importance of maintaining independence as one ages. In many of the stories, what individuals fear most as they age is not dying, but losing the things that matter most in their lives – their independence, their home, the ability to drive, and to be able to make their own choices for as long as possible.
Gawande refers to geriatrician, Dr Bladue, who describes that her obligation to her patients is no different than that of any other doctor.
“The job of any doctor… is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world.”
It is in this balance, Gawande believes, that we as a medical community have failed. No better than the doctors who surrounded Ivan Ilyich during his terminal illness, we are using medical advances to prolong life at the expense of letting the sick die with dignity. There always seems to be another treatment, another solution, until the body inevitably fails. In many examples, Gawande shows us that people at the extremes of old age can live happy, satisfying lives, if only granted a few basic liberties. He makes the case that older people actually can do well on their own, and can do even better when geriatricians are caring for them, and the focus is on retaining function rather than heroic actions to stave off disease.
A similar investigation of terminal cancer patients is also presented in Being Mortal. Cancer, unlike aging, can hit people at any time, as they are fully enjoying life, beginning a family, and in the midst of their careers. Perhaps nothing is more devastating than being diagnosed with a terminal illness at this time in one’s life. Gawande speaks of his own experience having end-of-life discussions with such patients. He and other physicians note that it is difficult to discourage a patient’s optimism, and so they often find themselves offering a possible solution rather than talking about the grave reality, even when the evidence says otherwise. In such situations, there is a pressure to pursue advanced care, despite the likelihood of complications and severe discomfort that will result from this decision. Here, Gawande introduces us to the better outcomes of palliative care. An approach with compassion at its center – patients with palliative support are more likely to avoid hospital visits; report more consistent days without pain or side-effects in which they can better plan how they are spending their time, and are even more likely to live longer than expected.
Relevance to Emergency Medicine
Gwande notes that he learned a lot in medical school, “but mortality wasn’t one of them.” His own uncertainty with how to handle end of life decisions both in his professional and personal life was the driving force behind Being Mortal. Gawande exposes his own doubts, in order to ask critical questions about how we are training physicians to care for the elderly and ill, and the culture that surrounds this most important and inevitable time in one’s life.
Being Mortal makes a strong case for the importance of compassion in medicine. When discussing the story of The Death of Ivan Ilyich, Gwande’s medical class all agreed they would act with more honesty and empathy if they were in a similar situation – this would come naturally to them. What they were concerned with was obtaining the medical knowledge to properly diagnose and treat. But what Gawande sadly notices many years later into his practice, was that we physicians often fall short of our promises from our training days to care compassionately for patients when we no longer believe we can medically cure them.
Perhaps, in emergency medicine, more than in any other field of medicine, there exists a strong and almost unbreakable mindset to do everything in our power to save a life. After all, we are the resuscitationists! Gawande notes that some of his most difficult cases are not the complex operations, but rather, deciding when not to operate. As emergency physicians, we can argue that deciding when to not be proactive and to not resuscitate is similarly as difficult. To recognize when comfort measures and compassion are what will be best for our patients is just as important as knowing when to intervene and act aggressively.
In Being Mortal: Medicine and What Matters in the End, Gawande opens our eyes to the opportunities to do better for our patients in their last stage of life. We can consider other treatment options and dispositions that are more in line with the care our patients need at this vulnerable time. We can better prepare ourselves and the next generation of physicians to have these difficult conversations so that our patients are listened to properly and are thereby able to make the right decisions for themselves. Although primarily focused on dying, Being Mortal is a story full of hope for a better way to live as we age and a more compassionate way to care for the most sick and vulnerable.
Google Hangout Discussion
- The author mentions that in some situations a more paternalistic approach to medical care is appropriate, although in general he supports a shared decision making model. When is a paternalistic approach more appropriate?
- Being Mortal presents many alternative living arrangements for older adults, though the nursing home is still a dominant model. What role should physicians play, if at all, in changing the status quo?
- In Being Mortal, many examples are given on how to conduct a critical conversation about end of life wishes. Do you think the book provided useful tools for both patients and doctors? Which conversations did you find most effective
- Gawande discusses the challenges Oncologists face with approaching end of life decisions? Is there, perhaps, an inherent conflict of interest between being “aggressive” and discussing death?
- What are the challenges to conducting an adequate goals of care discussion with family members in the ED when the patient is in extremis?
Prior ALiEM Bookclub selections featuring similar discussions:
- The Emperor of all Maladies by Siddhartha Mukherjee
- When Doctor’s Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen and Joshua Kosowsky
- How we Die by Sherwin Nuland
Frontline Special on Being Mortal Featuring Atul Gawande [Link]
Disclaimer: We have no affiliations financial or otherwise with the authors, the books, or Amazon.