Atul Gawande, MD, MPH is an award-winning writer, surgeon, and Harvard professor. His diverse background provides him with unique insight into the complex world of health policy, ethics, and medicine. This knowledge is beautifully integrated Being Mortal: Medicine and What Matters in the End, a moving reflection on life and death from the perspective of someone who can speak as a medical professional as well as a human being struggling to understand the journey we all take as we face choices towards the end of life.
How the book is organized:
The book is divided into eight chapters, plus an introduction and epilogue. Each chapter includes personal stories illustrating the different stages of aging, illness, and letting go. While the first five chapters focus on aging and the last three explore cancer, the book should be read as a whole.
Gawande opens by reflecting that mortality was not addressed in medical school. “Our textbook had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise” (p.1). So begins the insightful exploration into the hardest questions that are rarely addressed openly and honestly in society– What does it mean to live a good life and to die a good death? Given that we put our lives in the hands of doctors, how is it that they are not prepared to talk to us about what happens at the end?
1 - The Independent Self:
As we age we face changes to how we navigate life, and people struggle to continue living independently. Support options vary worldwide, especially as modern societies value independence for all family members and people have gone their separate ways. How do we as a society balance the desire for independence as we age with the eventual need for more help? Where will that come from, what will it look like, and who will provide it?
2 - Things Fall Apart:
While in the past we anticipated health to have a clear downhill trajectory as we age, medical progress has enabled people to live longer and go through many ups and downs with treatments. Thus, we are faced with a need to redefine how we view and how doctors can support aging. Ironically, Gawande shares that as people are living longer, the field of geriatrics is less appealing to medical professionals. He writes, “What geriatricians do – bolster our resilience in old age, our capacity to weather what comes – is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept that we are not” (p. 46).
3 - Dependence:
The natural process of aging has been medicalized and institutionalized, and Gawande visits different nursing homes to explore residents’ loss of agency and individuality. He reflects that “This is the consequence of a society that faces the final phase of the human cycle by trying not to think about it. We end up with 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’re weak and frail and cant fend for ourselves anymore” (p. 76).
4 - Assistance:
Family care is the primary alternative to institutions for elderly care, a fact that is very hard for caregivers who have their own children, work, and responsibilities. For some individuals, assisted living is a welcomed balance because it aims facilitate independence along with necessary support to continue to thrive. Gawande speaks to the woman who created this model that emphasizes the feeling of home, one that has gained huge momentum and popularity.
Additionally, Gawande shares research on the evolution of emotions and life satisfaction over time. He writes that as people age, their focus narrows but they do not necessarily become less happy. On the contrary, “they found living to be a more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led” (p.95). This is because our life situation shapes what possibilities we see ahead, subsequently shapeing our experience of the world and our emotional state. When we are healthy we see endless possibilities but when ill, “the future ahead of you as finite and uncertain – your focus shifts to the here and now, to everyday pleasures and people closest to you” (p.97). How can these insights be integrated into existing care options to help people who are aging find the balance between being safe and healthy as possible while also having opportunities to lead a life full of pleasure?
5 - A Better Life:
This chapter highlights that people need more in life than the physical ability to keep their bodies moving. Gawande points out that, “making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. The routine solutions haven’t yet become well defined” (p.137). The reader meets an administrator who brings purpose and life into the nursing home environment with the introduction of plants, animals, and children. Spontaneous relationships develop as both staff and residents step out of their comfort zones of predetermined expectations. These changes improve the physical and emotional wellbeing of the residents remarkably.
“All we ask is to be allowed to remain the writers of our own story,” Gawande writes, “That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our characters and loyalties... The battle of being mortal is the battle to maintain the integrity of one’s life – to avoid becoming so diminished or dissipated or subjugated that who are becomes disconnected from who you were or who you want to be…” (p. 140).
6 - Letting Go:
Shifting attention in this section to cancer patients of all ages, Gawande asks the key question – “How can we build a system that supports people at the end of their lives decide that they have had enough treatment?" (p. 155). As a doctor he realizes that he cannot even clearly state if someone is dying or not given that there are always more treatments to try. Gawande finds that palliative care is growing in popularity as people are starting to see the value in releasing endless interventions and the possibility of subsequently experiencing a more relaxed, nourishing, and comfortable life following that decision.
Opting for hospice is a brave and difficult decision that could benefit from the guidance of doctors but which often is lacking that support. Gawande writes that this is because they view death as the enemy that needs to be defeated, not surrendered too. Unfortunately, “…the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end” (p. 187).
7 - Hard Conversations:
Gawande’s experience takes a more personal tone as his father is diagnosed with cancer. The reader follows the family as they navigate treatments and medical advice in the same way we all do – with uncertainty, hesitancy, and confusion. He describes our reality, where “a monumental transformation is occurring… we’ve begun rejecting the institutionalized 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 be the patient, and I, the clinician, agree to try to fix you, whatever the improbability…” (p. 193).
The ease at which the necessary and difficult conversations occur is impacted by the physician’s style of communication – paternalistic, informative, or interpretive. Eventually, the Gawande family embraces hospice care and they witness the relief that comes with facing the fear of too little treatment and engaging in these hard discussions.
8 - Courage:
As humans we are constantly balancing our need to have control over our lives with the reality that we are somewhat helpless. Facing aging and illness takes courage and Gawande identifies two kinds. “The first is the courage to confront the reality of mortality – the courage to seek out the truth of what is to be feared and what is to be hoped… but even more daunting is the second kind of courage – the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most” (p.232).
In this personal reflection, Gawande shares how helping his father was the most privileged and difficult experience. The Hindu rituals his family perform in India to honor his father connect him more deeply to generations before him who have grappled with the same life stages. Through this experience he has internalized how medicine should shift focus to supporting well-being in the broadest sense of the word, not just prolonging life at all costs, stating “I never expected that among the most meaningful experiences I’d have as a doctor – and, really as a human being – would come from helping others deal with what medicine cannot do as well as what it can” (p. 260).
Conclusion and Recommendation:
Being Mortal could easily be required reading simply for being human. The thoughtfulness, sensitivity and expertise Gawande conveys in an accessible and simple way is incredible. He gracefully negotiates this difficult and I strongly recommend this book not only to those facing breast cancer treatment themselves but also to family, friends, and medical providers.
Throughout the book, personal stories and scientific research provided well balanced and engaging insight into the topic, as well as specific tools. One hospice nurse shared a list of five key questions that can help facilitate the discussion when it is time to make big decisions regarding treatment (p. 182):
- What is your understanding of the situation and its potential outcomes?
- What are your fears and what are your hopes?
- What are the trade-offs you are willing to make and not willing to make?
- What is the course of action that best serves this understanding?
Later, when there are few viable treatment options and there is suffering -
- What would a good day look like?
I am familiar with these conversations because I personally had to navigate being a caregiver for my mother who passed from uterine cancer, less than two decades after recovering from breast cancer. Despite her poor prognosis, it was not until her final weeks that my cousin, a medical bioethicist, facilitated an open and honest conversation about end of life preferences and hospice. I am grateful that she supported us through this because I had felt abandoned by our medical team as my mother gradually was disqualified from different studies and drug trials. From careful monitoring and communication we were left to fend for ourselves with decisions about continuing care or letting go.
In the end, thanks to my cousin, my mother had one peaceful week in hospice care before passing away surrounded by family. Just as Gawande cherished his ability to be by his father’s side, I too felt the depth of meaning that this experience holds. He writes, “Technological society has forgotten what scholars call the 'dying role' and its importance to people as life approaches its end. People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is among life’s most important, for both the dying and those left behind” (p.249).
May we all fulfill our dying role in this life and help to facilitate the opportunity for others to do the same.
Review by Helaine Alon, ZBC Communciation Manager