Being Mortal: Illness, Medicine, and What Matters in the End - Atul Gawande
Read 03.30.17
““Our ultimate goal, after all, is not a good death but a good life to the very end.””
Dr. Gawande's criticisms against modern practices, specifically those concerning old age, were eye opening and stimulating. I find the concept of death to be unacknowledged throughout most of our lives, at least until it comes knocking on our door years later. As a result, I am truly lost in how to approach this matter, especially as someone in his early twenties.
Dr. Gawande mentions the human desire for autonomy, through which we create meaning in our lives. And I agree, a life without autonomy would not be worth living, even in consideration of the impact death carries. Additionally Dr. Gawande's provides insight into the current state of medical care and the ethical conflicts around the cost of treatment that may go beyond financial consequences. However, outside his explanations and presentation of the future direction of medicine, I must admit I am left confused— a weird combination of feeling both full and empty of meaning simultaneously.
His recommendations to other medical practitioners are concrete. Be more human. Actually discuss the circumstances with their patients instead of being a mere informer of the facts and holding their stance as an authoritative figure with a mission to state the cold truth.
But what about to other readers? I wonder how Dr. Gawande wishes his readers to proceed with their lives given the information he's provided. Perhaps he wishes us to live a meaningful life. Perhaps he wishes us to be more aware of death and in turn, live a meaningful life. I feel as if the answer is simple and present in my head but I cannot articulate it accurately. I'll take more time to think about it.
As always, my favorite quotes are below:
"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 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." (9)
"Those of us in medicine don't help. for we often regard the patient on the downhill as uninteresting unless he or she has a discrete problem we can fix. In a sense, the advances of modern medicine have given us two revolutions; we've undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course." (29)
"Equally worrying and far less recognized, medicine has been slow to confront the very changes that it has been responsible for— or to apply the knowledge we have about how to make old age better." (36)
"Decline remains our fate; death will someday come. But until that last backup system inside each of us fails, medical care can influence whether the path is steep and precipitate or more gradual, allowing longer preservation of the abilities that matter most in your life." (44)
"But the dismal finances of geriatrics are only a symptom of a deeper reality: people have not insisted on a change in priorities. We all like new medical gizmos and demand that policy makers ensure they are paid for. We want doctors who promise to fix things. But geriatricians? Who clamors for geriatricians? 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 the 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 we are not." (46)
"It is not death that the very old tell me they fear. It is what happens short of death— losing their hearing, their memory, their best friends, their way of life." (55)
"From World War II onward, the picture shifted radically. Sulfa, penicillin, and then numerous other antibiotics became available for treating infections. Drugs to control blood pressure and treat hormonal imbalances were discovered. Breakthroughs in everything from heart surgery to artificial respirators to kidney transplantations became commonplace. Doctors became heroes, and the hospital transformed from a symbol of sickness and despondency to a place of hope and cure." (69)
"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 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 the here and now, to everyday pleasures and the people closest to you." (97)
"So this is the way it unfolds. In the absence of what people like my grandfather could count on— a vast extended family constantly on hand to let him make his own choices— our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about." (109)
"Culture has tremendous inertia... that's why it's culture. It works because it lasts. culture strangles innovation in the crib." (120)
"Royce called this dedication to a cause beyond oneself loyalty. He regarded it as the opposite of individualism. The individuals puts self-interest first, seeing his own pain, pleasure, and existence as his greatest concern. For an individualist, loyalty to causes that have nothing to do with self-interest is strange. When such loyalty encourages self-sacrifice, it can even be alarming— a mistaken and irrational tendency that leaves people open to the exploitation of tyrants. Nothing could matter more than self-interest, and because when you die you are gone, self-sacrifice makes no sense." (126)
"As our time winds down, we all seek comfort in simple pleasures— companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being. Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile." (127)
"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 in 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." (128)
"Whatever the limits and travails we face, we want to retain the autonomy— the freedom— to be the authors of our lives. this is the very marrow of being human... This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. 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 you are becomes disconnected from who you were or who you want to be. Sickness and old age makes the struggle hard enough. the professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people's choices, in the name of safety, but to expand them, in the name of living a worthwhile life." (140-141)
"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. death is the enemy, But 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 want 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." (187)
"Our responsibility, in medicine, is to deal with human beings as they are. People die only once. they have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come— and escape a warehoused oblivion that few really want." (188)
"Scholars have posited three stages of medical development that countries go through, paralleling their economic development. In the first stage, when a country is in extreme poverty, most deaths occur in the home because people don't have access to professional diagnosis and treatment. In the second stage, when a country's economy develops and its people transition to higher income levels, the greater resources make medical capabilities more widely available. People turn to health care systems when they are ill. At the end of life, they often die in the hospital instead of the home. In the third stage, as a country's income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness, and deaths at home actually rise again." (192)
"In the end, people don't view their life as merely the average of all of its moments— which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people's minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self— which is absorbed in the moment, your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Why would a football fan let a few flubbed minutes at the end of the game ruin three hours of bliss? Because a football game is a story. And in stories, endings matter." (238-239)
"I am leery of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their own way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one's story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone's lives." (243)
"We are running up agains the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial process that prolong their lives and giving them the right to stop the natural, internal processes that do so." (244)
"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 wisdoms 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, observes argue, among life's most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people's lives and then stand oblivious to the harm done." (249)
"Being moral is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be." (259)
"We've been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. those reasons matter not just at the end of life, or when debility comes, but all along the way." (259)
"If to be human is to be limited, then the role of caring professions and institutions— from surgeons to nursing homes— ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person's life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking." (260)
"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." (260)