I recently read Being Mortal: Medicine and What Matters in the End (2014) by Atul Gawande, a surgeon in Boston. He writes here about aging, balancing autonomy and security, assisted living and nursing homes, palliative care, dying, necessary conversations about dying and medical care, and death, including his father’s recent death.
These topics interest me, and Gawande’s writing — which he claims comes slowly and doesn’t flow easily — is clear and compelling, except for the middle section about nursing homes, the rise of assisted living, and the various forms assisted living can take, which I found dry, though pertinent. He’s best when talking about how doctors and patients avoid important discussions of hopes and fears, and how voicing these hopes and fears helps people (patients, families, doctors) make the best choices from among confusing medical options, especially when all of the options carry major and perhaps unknown risks and downsides.
The PBS Frontline show with Gawande on this topic is excellent. So is Diane Rehm’s conversation with Gawande about the book in Oct 2014.
I had one major quibble with Gawande (and others) philosophically, which I go into at some length at the end of this posting.
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Some ideas that seemed especially critical or revelatory to me (all bolding within quotes is mine for emphasis; italics within quotes are his):
For most of history, humans died before they reached old age; for all but the last couple hundred years, the average lifespan was 30 years or less. “Indeed, for most of history, death was a risk at every age of life and had no obvious connection with aging, at all.” A little mind-blowing!
And this was reassuring, given my longevity genes: Genetics have very little to do with longevity: Only 3% of how long a person will live compared with the average lifespan is explained by parents’ longevity, even though some of our other physical limits and features are almost completely tied to genetics, such as height (which is 90% determined by parents’ height).
We Wear Out: Like other complex systems, we don’t just shut down, we wear out. Simple devices “function reliably until a critical component fails, and the whole thing dies in an instant.” But complex systems, as we are, are designed with redundancy:
“We have an extra kidney, an extra lung, an extra gonad, extra teeth. Nonetheless, as the defects in a complex system increase, the time comes when just one more defect is enough to impair the whole, resulting in the condition known as frailty. It happens to power plants, cars, and large organizations. And it happens to us: eventually, one too many joints are damaged, one too many arteries calcify. There are no more backups. We wear down until we can’t wear down anymore. “
Also reassuring for many of us, since we can improve our balance and muscle strength: Falls: The risk factors for falling are poor balance, taking more than 4 prescription medications, and muscle weakness. “Elderly people without these risk factors have a 12% chance of falling in a year. Those with all three risk factors have almost a 100% chance.”
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Nursing homes and other care facilities — designed to appeal to residents’ children, not the residents themselves, and looking to avoid lawsuits — favour safety over autonomy. Most of us “want autonomy for ourselves and safety for those we love.” But then of course, “those we love” want autonomy.
“[O]ur 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.”
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Quality of life:
“The job of any doctor, [geriatrician Juergen] Bludau later told me, 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.”
My mom died in early December, from complications of Alzheimer’s, after being in a memory care unit and then a 24-hour-nursing room at the same facility for a couple of years. Her life and death remind me that “active engagement in the world” is a relative term; for much of her adult life, she seemed content to sit on her sofa and watch TV most of the day. She could still do this, and seemed to be content doing it, until her last days. I visited her three weeks before she died and she was still engaged by the TV, by me, by the staff, and by the stuffed animals she liked to touch. It concerns me that some people — family, friends, medical professionals — might apply a different interpretation of “active engagement” than is relevant to the experience of the patient.
“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. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: 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? And what is the course of action that best serves this understanding?”
This set of questions actually applies to life outside of medical treatment, too. I could ask these questions about my garden: What is my understanding of the current situation — the soil, the climate, the slope and aspect, the available water, etc. — and the potential outcomes? What pests, diseases, outcomes do I fear and for what growth, beauty, biodiversity do I hope? How much work am I willing to do? What actions should I take that align with my responses?
A medical system that actively inflicts harm: Gawande cites a 2010 study at Massachusetts General Hospital of patients with advanced cancer that showed that “those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
The main two models of doctor-patient relationships are paternalistic — I know best and you should confidently do what I tell you — and informative — here is all the information, data, statistics; now you make a good decision. But “neither type is quite what people desire. We want information and control, but we also want guidance.” Enter the interpretative type of doctor-patient relationship, where the doctor’s role is to help the patient determine what s/he wants. They ask questions, listen to you, and based on your answers, they suggest actions.
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The Difficulty of Medical Decision-Making
“People die only once. They have no experience to draw on.”
We don’t have control and we are not helpless:
“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 way in our lives. But the point is we are not helpless either. Courage is the strength to recognize both realities.”
Facts don’t go far enough to help us make decisions; they didn’t for Gawande’s dad or for his patients:
“In theory, a person should make decisions about life and death matters analytically, on the basis of the facts. But the facts were shot through with holes and uncertainties. [My father’s] tumor was rare. No clear predictions could be made. Making choices required somehow filling the gaps, and what my father filled them with was fear. He feared the tumor and what it would do to him, and he also feared the solution being proposed.”
“The options overwhelmed her. They all sounded terrifying. She didn’t know what to do. I realized, with shame, that I’d reverted to being Dr. Informative—here are the facts and figures; what do you want to do? So I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What tradeoffs was she willing to make, and what ones was she not?”
When my dad was diagnosed at age 73 with bladder cancer, he was blindsided, but soon he seemed to make really good decisions about his treatment and his life generally. I don’t think he told me all the details, but I gather that he was told from the outset that his cancer was likely to be fatal sooner than later. He opted for surgery and an urostomy bag. He was living in Florida then and requested visits from my sisters and me, who lived hundreds of miles away.
I spent a week with him between diagnosis and surgery, during which he asked me, as we wandered one afternoon among the citrus trees near his house, if I had any questions for him, anything I needed or wanted to talk with him about. As I’ve written elsewhere, our relationship as adults had been such that I really didn’t have anything pressing to discuss; we had covered those topics (including death and dying) over the years, on walks, hikes, at meals, in ordinary moments.
He also planned the hikes and trips he wanted to take, to places he had hiked dozens of times and knew intimately, and to Ireland, where he had never hiked but had long wanted to.
Eventually, perhaps when the cancer metastasied to his lungs, he made a few visits to Duke University Medical Center and took some oral chemotherapy for a while. Then he stopped that, requested my sister and me to visit again, fine-tuned his obituary (which he had written years earlier at my request), made cremation arrangements, and within about six weeks, died peacefully, three years after his diagnosis.
There were a few bumps in the road, but generally, his actions seemed focused on the questions Gawande suggests; he acted as much as possible, as much at it was in his control, in accord with his own hopes, fears, and goals, his awareness of what he wanted to avoid and what he wanted to do, how he wanted to live during in his remaining time, however long that might be. I appreciate the modelling.
The Peak End Rule and how it affects decision-making: Patients’ rankings of pain during a procedure are based on the average of just two moments: the single worst moment and the very end of the experience. The duration is not important in our memory, though it is in our actual experience:
The “experiencing self … endures every moment equally and a remembering self … gives almost all the weight of judgement afterward to two single points in time. … If the remembering self and the experiencing self can come to radically different opinions about the same experience, then the difficult question is which one to listen to. … 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. … 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. … Yet, we also recognize that the experiencing self should not be ignored. The peak and the ending are not the only things that count. In favoring the moment of intense joy over steady happiness, the remembering self is hardly always wise. … When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.”
Probably the most common evidence of this phenomenon — specifically, of a pleasurable ending transforming suffering to make it, in retrospect, seem to have been negligible and worthwhile — is in women who have more than one childbirth.
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This peak-end rule was an interesting finding for me, and also one of the hardest to wrap my head around as applied to dying. Similarly Gawande’s comments earlier in the book about what makes life (and therefore death) meaningful, which, as he makes clear, are not original or unique to him:
“The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. Loyalty, said Royce, ‘solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.'”
I recognise that this is the common idea, that a sense of purpose outside oneself gives life meaning. Yet it’s not a concept I fully understand.
First, “family” doesn’t seem like a higher purpose to me but rather an evolutionary and biological means of promulgating one’s own genetic material (and to a lesser and more unreliable extent, one’s values), and therefore very much focused on the self, and perhaps even a sort of denial of mortality, a belief that one lives on after death, biologically and otherwise, in the lives of others.
I understand better the idea of purpose involving the larger community or society, but I just don’t accept it either as a solution to “the paradox of our ordinary existence,” because I don’t feel there is a paradox to be solved — mortal beings are born, flourish (maybe), and die — or as an action or philosophy that gives life meaning, because living gives life meaning for me. Experiencing love, intimacy, fear, a tree, beauty, revelation, sunlight on a pond, fatigue, hope, compassion, enlightenment, disappointment, wonder, bewilderment, loneliness, the taste of an artichoke, the scent of the ocean, the feel of a cool breeze on a hot day, and so on, and expressing and sharing these experiences in many ways, seems like enough to me.
For me, the experiencing self is the one that seems reliable. It’s the one that lives in the only place we can really live, which is here, and now. The remembering self wants to distort the experience to make a satisfying story about it, complete with cognitive biases, and I distrust these biases and its sense of removal and distance from the experience.
Gawande says that “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;” and yet, when I am dead, does it really matter how I view my story? Or anything?
It seems that Gawande is focusing on the weeks, days, hours before the final unconsciousness as the most critical, a kind of assessing of one’s legacy, and perhaps in a book on dying, that’s appropriate, and in fact these studies that Gawande cites are clear that it’s the ending of the story that matters most to most people; and yet in some ways it seems pointless to me to consider the arc and ending of a story whose protagonist, who is also the narrator, is about to shuffle off this mortal coil, handing off the telling of their only story (their many stories) to friends and next of kin.
Speaking of handing the story off: It would annoy me (though hopefully I will be beyond annoyance) if, should I die after a long illness, the story of my death is immediately written in a way that would be anathema to me: “She fought a good fight. She lost her battle with X illness.” Or worse. I don’t want my death to be seen as a fight I lost, battling some imaginary enemy, when I see death as a natural progression; and I don’t want the ending, however if unfolds, whether I seem heroic or a whining misery, to colour all that came before. But how my perceived story will be told by others doesn’t concern me much — since, let’s face it, the storytellers will get it wrong, and anyway, they also will die, and soon in geological time.
More to Gawande’s point, how I myself view my story in my final months or moments — its arc or ending, its meaning as a whole — doesn’t seem important, either. For one thing, we all have much the same story to this point — born, learned, tried, failed, succeeded, hoped, feared, acted brave and cowardly, acted selfishly and compassionately, felt and thought things, took risks and played it safe, believed, doubted, had faith, despaired, ate and drank, laughed and cried, loved and hated, practiced violence and peace — and in the final analysis, it ends the same way for everyone, so far as we know. For another, I’d rather put the paltry energy I have in my final days into just experiencing the moments (until the time comes that I’d rather not experience the moments, as Gawande’s father felt in his last hours) rather than trying to craft or tell a story that satisfies me and seems coherent.
We will all be gone in the blink of an eye, from this Earth, at least, and then who knows?, and that thought gives me great comfort when I think about dying. I have no hope in the idea of anyone living on after me or of anyone remembering me; I take comfort in the knowledge that we will all die: our bodies, our ability to experience, our perceptions and memories of our experiences, our art and stories about these experiences. And all that will have been will be what we sense, what we feel, what we think, how we act, in the moments when we sense, feel, think, act.
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“I confess I do not believe in time. I like to fold my magic carpet, after use, in such a way as to superimpose one part of the pattern upon another. Let visitors trip. And the highest enjoyment of timelessness―in a landscape selected at random―is when I stand among rare butterflies and their food plants. This is ecstasy, and behind the ecstasy is something else, which is hard to explain. It is like a momentary vacuum into which rushes all that I love. A sense of oneness with sun and stone. A thrill of gratitude to whom it may concern―to the contrapuntal genius of human fate or to tender ghosts humoring a lucky mortal.” ― Vladimir Nabokov
I’m mortal, I will die, I am dying. That happens in time. And while I live, I escape mortality in moments of timelessness … by being absorbed … in that sensation of oneness that can’t help but be an outpouring of gratitude … when brushed by eternity, by “ghosts humoring a lucky mortal.”