The problem isn’t so much that in the end, we die. It’s in all the time leading up to the end. Not death, but severe decline is what puts fear in our hearts. A long debilitating illness or just aging that cuts us off progressively (regressively, come to think of it) from all that we love.
We all peak physically at some 30 years of age, but robustness and increased life satisfaction can persist for decades longer as we go about building our lives, hopefully coming to accept our aging and its limitations with equanimity and often, good doses of humor.
But the decline does march on, as inexorable as fall following summer.
At a certain point, we stop running, then hiking, then walking without assistance, then walking altogether.
We stop driving long distances, then at night, then at all.
No more foreign travel, then it’s no to flying anywhere, then no more leaving our town, our house, and finally our room (except to the doctor’s or the hospital).
Eyesight, hearing, taste, smell, even the basic dignities of dressing and grooming and bathrooming oneself can leak away, like a miles-worn, slowly deflating tire that can no longer be patched.
And finally, if we are not first taken by the mercy of illness, we may experience—or worse yet, fail to even note the experience—of losing our cognition, our awareness of a Self interacting with other Selves, with whom we have a past that provides context, ballast, and meaning to the present.
These are the things we dread and against which we seek to employ sufficient counter-measures to help us retain a sense of dignity, agency, acceptance.
And these are the basic issues on the table in Dr. Atul Gawande’s best-selling 2014 book, “Being Mortal: Medicine and What Matters in the End.”
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Gawande is a longtime physician/cancer surgeon and gifted writer whose work has graced the pages of The New Yorker magazine for many years. He specializes in first-person reports from the operating room and office, most always with a combination of flesh-and-blood clinical detail and the deeper backdrop of the persons involved in the encounter, beyond the flesh that is yielding to his cold scalpel.
His is a deeply humanist sensibility that grapples publicly with the medical, psychological, and ultimately the spiritual issues swirling underneath and around his chosen profession.
In training his authorial voice here strictly on the multiple complexities and heart-rending decisions attending the end of life, Gawande hits upon one of the vital issues in every life, but particularly of this time, given the sheer demographic facts of some 70 million Baby Boomers (born between 1946-1964) being alive last year, representing some 22%-26% of the current population.
Not seeing our own decline with the clarity that others—including our loved ones—do, we tend to dally too long with delusions of self-sufficiency, forestalling the kind of sober planning that can truly maximize what can remain of our independence…
And whatever the books informing them about “Aging Backwards,” “Dynamic Aging” and “Quantitive Medicine” that will… “Reverse Aging and Chronic Disease,” we know, courtesy of an only slightly macabre webpage called “The Baby Boomer Death Clock,” that one of them is dying every 19 seconds in America, and the pace will only be picking up before it declines again when there are fewer Boomers left. (If it makes you feel any better, or you’re a Millennial or Generation X, there are death clocks devoted to those cohorts as well.)
The bulk of the much smaller Silent Generation (born 1924-1944), are now gone, but many Boomers are still caring for and seeing to their end those who remain.
That includes Gawande, who uses the decline and death of his own physician/surgeon father as a touchpoint throughout his book.
Although these demographic facts have far-reaching implications for our society and economy, let us leave that discussion for another day. What concerns Gawande in “Being Mortal” is much more the often tortuous decisions and experiences the dying have in trying to forge their way to the death they have always pictured as an ideal: peaceful, pain-free, expeditious, all accounts and relationships squared away, and, in the recurrent phrase of seemingly every obituary ever written that wasn’t about a homeless person or someone who died suddenly: “surrounded by family.”
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Gawande launches into “Being Mortal” with a harrowing account of a patient suffering from advanced, incurable prostate cancer whose choices as he neared death were all wrong. In his 60s, Joseph opted for an 8 ½-hour surgery that would cure nothing and, if a raging success, would give him at best a few months to live after a brutal recovery time.
At worst—which is what happened—all the surgical suffering was for naught as he died faster and with more discomfort than he would have otherwise.
Joseph’s choice, however, was reflective of a culture and medical industry that is, even decades after the Hospice movement was firmly established, with death-with-dignity and even assisted suicide laws now on the books, still fundamentally about death denial. Gawande laments how little of his own medical training and that of doctors still today focuses on dying, medical proportionality, limitation.
We’ve all seen it—surgeries, extended ICU stays, long stints on ventilators for 90+ year-olds—all to squeeze out days, weeks, perhaps a few more months of pronounced infirmity.
It’s a kind of madness, really—and an expensive one at that. No one witnessing that all-too-common scenario at a younger age wants it for themselves in projecting their end, yet that’s where far too many wind up.
Why?
Years ago, one of my clients was a senior “Medicare advantage” health plan that catered only to 65-year-olds and above. One of the truisms emphasized to me by the staff was that when preparing marketing and member materials, our photographs had to show attractive 50- to 55-year-olds because virtually everyone pictures and feels themselves as 10 to 15 years (and more) younger than they actually are.
This is true for me today when interacting in work or social situations with even those still in their 40s, most of whom I feel and mix with as seeming peers. Then at one point or other through the meeting or clinking of glasses at the brewpub, a moment of clarity suddenly intrudes and I remind myself, “Dude, you could be their dad.”
No, Denial is not a peak in Alaska. But it exerts a powerful influence as we move into advanced age, aided and abetted by slower, less acute cognition and less general feedback from the world around us as we sink, almost unconsciously, into rituals of comfort and ease that remove us, inch by inch by foot, from the world’s demands.
Not seeing our own decline with the clarity that others—including our loved ones—do, we tend to dally too long with delusions of self-sufficiency, forestalling the kind of sober planning that can truly maximize what can remain of our independence if we but see our situation for what it is.
“We rarely pay more than glancing attention to how we will live when we need help until it’s too late to do much about it,” Gawande writes. Later in the book, about a later stage of dying, he adds, “I am leery of suggesting that endings are controllable. No one ever really has control.”
To which I responded in my own notes, “Amen to that.”
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Other chapters in “Being Mortal” chronicle truly empathic and mold-breaking communities and services for elders, the severely infirm, and the dying. Gawande introduces us to visionaries who view even the last stage of life not as a disease, but as another turn of a steadily turning wheel, in which universal desires for dignity, recognition and some measure of autonomy must be regarded as just as legitimate as they would be at any other age.
That doesn’t mean any spouting of “You’re only as old as you feel” bromides, but it does mean respect and actual listening to the needs, fears, and fervent desires of the aged and dying, and a regard for them as self-determining-as-possible adults rather than children whose every moment is externally controlled.
Cumulatively, I’ve spent a lot of time in senior communities and nursing homes over the years, and if I ever wind up in one there’s one thing I know will get my dander and energy up enough to want to strangle someone: When a perky nurse’s aide goes all sing-songy in a chirpy voice, “How you doing today Honey, you look soooo handsome, would we like some breakfast now?”
Gawande quotes Keron Brown Wilson, a founder of the assisted living model who was inspired by her mother’s suffering a debilitating stroke at 55 years old. With Mom ensconced in nursing homes she hated, Wilson, 19 at the time, went on to get a Ph.D. in gerontology and established an assisted living community focused on what residents still could and wanted to do for themselves. A place where her mom, she said, “would be Jessie again, a person living in an apartment instead of a patient in a bed.”
Then he tells the tale of Bill Thomas, a physician and medical director of a nursing home in upstate New York with 80 severely physically disabled or demented elderly patients, all of them consigned to the basic lifeless oblivion reflective of so many such facilities.
Thomas’s revolutionary-at-the-time idea was to put plants in every room, plant a vegetable garden on the premises, and allow dogs, pets and birds to cohabit with residents.
Odors, excretions, seeds splayed about and floors soiled: all of it was sure to happen. But what also happened: residents springing to life, with finally some sense of purpose to their lives in caring for other living things. A reason to get up and look forward to the day.
Not so complicated.
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All that said, no one I have ever talked to fathoms themselves in a nursing home, ever. “Take me out back and put me down like you would your old dog,” is a common variation on the basic sentiment that people are extremely averse to institutions and the kind of cattle warehousing that often tries to pass for “compassionate care.”
Hence the often heroic efforts, often first by spouses, and then dutiful daughters (mostly) and sons to care for their aged parents in their own homes, where they arrange, if resources allow, for 24-hour caregivers, make frequent stops at the doctor’s, the physical and occupational therapists’, perhaps even the casino on a special birthday outing.
Anything to avoid institutions, however humane they may work at being.
The daughter of one of Gawande’s 92-year-old patients, all out of other options, has to assign her extremely reluctant, fiercely independent but now helpless father to such a facility and observes that though it was “clean” and “actually one of the nicer ones,” it also “had the people in their wheelchairs all slumped over and lined up in the corridors. It was horrible.”
The question is not whether we would want such a scenario for ourselves. No one would.
The pertinent question is whether, given no other choice, we would accept such a scenario, or would instead opt for assisted suicide in one of the eight jurisdictions where it is currently legal in the U.S.—California, Colorado, District of Columbia, Hawaii, Montana, Oregon, Vermont, and Washington.
“Everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost,” Gawande writes.
And with the tendency of the medical profession to just keep on treating and for doctors to wildly over-estimate—by an average 530%, according to one study—the remaining lifespan of their terminal patients, we get the specter of debilitated, miserable people with little to live for, hanging on by virtue of their biological programming and the ever deeper toolbox modern medicine can employ to beat back death.
Leave it to a novelist, Philip Roth, whom Gawande notes approvingly, to frame the reality for many infirm elderly: “Old age is not a battle. Old age is a massacre.”
So when we have reached the massacre stage, either physically, emotionally, cognitively, or all of the above, what do we do? Some of us fight on, or our families and doctors fight on for us if we allow them.
I know what I hope to do. Deliberate as I mostly am by nature, this is one area where I would hope to “get out ahead” of the proverbial train by arranging for my assisted suicide while I still have enough cognition for my decision to pass muster with the still somewhat restrictive laws circumscribing the decision.
This can be easier said than done, of course, given the human penchant for denial discussed above, and the difficulty of accurate self-assessment, especially as one ages.
And there is the question of where our “line” is. What debilitation and indignities will we endure in this life while still gleaning enough from other pieces to consider it worth living?
“If I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive,” an emeritus professor of psychology tells his daughter when discussing how far to proceed down a trail of radical surgery for his cancer that threatens to leave him a quadriplegic.
That’s one bar, and it assumes cognition and a capacity for attention and aesthetic pleasure that represents a linchpin of consciousness and what we know to be a Self.
My own bar would perhaps be a variation on the professor’s: If I could still read, or listen and understand books on tape and music, had a room with a view and the opportunity to be wheeled outdoors to smell grass and observe trees and maybe, with really good hearing aids, enjoy the sound of birds, I’d probably be willing to abide a great deal of physical incapacitation. (Incontinence and chirpy nurse’s aides calling me “Honey” excepted…)
But if my current—“normal,” everyone assures me—battle with short-term memory were to turn into a forgetfulness not just of songs and book titles, capital cities, and what I had for lunch yesterday afternoon, but causes me to pause wondering who is looking in on me when I open the door to a longtime beloved friend, or has me momentarily unable to conjure the face of my mother or name of my daughter, or remember where I was living 10 and 30 and 50 years ago, in other words, if memory itself, not just of extraneous data, but the very foundation of my own history, my own Self, my own life, were to begin abandoning me: Then and there is where the true and final battle would be joined to preserve that Self’s last, emphatic measure of dignity by arranging to end its biological existence, its life as both he and the precious people who had shared it with him now over and done with by any measure he held to be sacred and true.
How about you?
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“Sublime” would be the word that applies here, though it doesn’t quite do it justice…
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Wow so much to ponder here. That is a powerful subject to write about. What are your thoughts on the religious aspects of that subject? Many believe our purpose here on life is not about us, so in that realm how do we really know when our life on earth should really end?
Thanks, Lisa. Since my own religious sensibility does not include God as a being who makes rules and dictates courses of action, I don’t see self-determination at the end of life as anyone’s business but my own (in consultation and loving communication with family and friends, of course). But in the end, it’s me (I hope) who decides whether to take that chance on the dangerous surgery that could extend my life, or cut out all but palliative measures, or refuse food and water to hasten my end, or sign the advance directive that allows the hospital to not hook me up to a ventilator. These decisions on when life “should” end are made every day across the world. The opposite approach—to try to save every life and every day that we can in an all-out effort to forestall death—can be seen as a form of playing God, refusing to let nature take its course, and it has led to untold misery—along with unsustainable expense. Where the lines are drawn, though, is tricky, and they can be very different for different people. I only know what feels right for me and for the things I value in this life.
Thanks for this, Andrew. For the last year my wife Katie and I have been caring for her demented mother and her mother’s nearly demented husband. It has been an eye opener. Now both 88 years old, each having been hospitalized, endured weeks of rehab, moved in and out of three “retirement homes”, they have been predominantly miserable. We are their only nearby relatives so it has not been easy on us.
We are currently on a four day reprieve from caregiving, visiting two of our kids in Los Angeles. We’ve attended our son’s classical guitar concert in Beverly Hills and met our daughter Molly’s new boyfriend.
When I think of how my last weeks, months and years may play out, I think of our children, everyone’s children, and our planet, overburdened with humans. I have enjoyed more than my share of blessings in my 67 years on one of the most desirable spots on the planet. I am becoming more and more comfortable with my personal “self-unimportance” and the dignity that might accompany knowing when to get off the stage. I plan a personal water and hunger fast prior to the onset of dementia or when I can no longer communicate with my fellow travelers in a meaningful way. The trick will be in knowing when I’ve reached the right time but I’ll try to err a bit sooner rather than later. Time will tell…..
Seems to me that close vigilance, unwavering honesty and remaining capacity all have to work in concert in those end days for us to direct an outcome consonant with our values and desires, Al. No small trick, for sure, but it can and has been done.
On the somewhat flip side, recently visited with a 103-year-old cousin of a friend of mine, oldest person I have ever met, still living in her own assisted living unit. Still sprightly and self-aware, so much so that she expressed almost non-stop frustration about her struggle for everyday words, for keeping her train of thought going from one sentence to the next. Obviously intelligent and wanting to be engaged, and all the more frustrated with the challenges to being so. At one point she exclaimed rather loudly: “What am I still doing here? This is RIDICULOUS!” We laughed, but uneasily…
The question is whether lack of desire to go on anymore is enough to cause a winding down of the life force, or whether she would have to take more forceful measures such as you describe, to overcome the persistence of her biology and finally bring the curtain down on her life. She is clearly ready for it to end, but her body is not cooperating. Taking charge of one’s body to force the issue is an issue for our times, one that has many prisms!
Thanks for engaging in this discussion and drawing from such direct and current experience to do so.
A VERY pithy post and comments Andrew – gets right down to the core of our existence, something that our society is just beginning to come to grips with… This brings to mind my mom’s demise, being a fiercely independent woman, who even bought long term care insurance (which hers turned out to be essentially bogus, reading the fine print w/a lawyer would have no doubt helped), but because assisted suicide (death with dignity) was not an option, she spent the last few years of her life in a skilled nursing facility, body used up and her mind long gone not recognizing anyone/anything. This care gobbled up every last dime from the sale of her home in WA – almost timing it to the last few bucks (a kind of cosmic alignment given she was always concerned about saving and having enough $ etc being a child of the depression). I am absolutely certain it would have driven her completely up the wall had she been conscious, both the indignity of the process personally and the idea of spending all that money when she was not “present” to derive any benefit from it…The whole deal felt so wrong, yet there were no villains here other than our collective social/medical blind spots surrounding death and dying, the caregivers were by and large kind and generous…
Her experience is in such stark contrast to a dear college friend’s recent death from ALS in which he worked closely with both hospice and the WA death with dignity group. This support allowed him to leave this world surrounded by his wife, brother and a couple close pals – so ready to let go and having very consciously chosen and planned exactly how his end would come… it was obviously very sad, yet felt so right. Certainly, the rapid pace of ALS is quite different from the glacial coming undone of my mom’s end, but notions of choice/death with dignity, consciously dying and such were not possible options for her… we are making progress I think, thanks to the open minded, open hearted reflections of folks like Gawande and yourself!
Thanks for the post my friend – love Atul Gawande’s thinking/writing – appreciate your musings on Being Mortal, prompting we readers to engage this most necessary, if unsettling, topic.
Kevin, just one among many sobering stats I didn’t get to in this post but which Gawande cited: 25% of Medicare spending is for 5% of people in their final year of life, and most of that is in their last couple of months. Medicare cost $583 billion in 2018 (14% of the federal budget!), so that meant nearly $146 billion spent on the last year of life—much, though certainly not all—in situations like your mother’s. When I think of all that could be done with that amount of money—for young people, for schools, for libraries, for universal coverage, ad infinitum—it makes a strong case for us getting out of the way when and as life gets to a certain helpless, unrewarding point. Not Sarah Palin’s “death panels” by any means; I know many quite elderly people living fruitful, satisfying lives, and none of this is meant to skooch them along. But just like your mom, the thought of perhaps hundreds of thousands of precious health care dollars going to support me when I don’t know down from up and could care less to find out fills me with a kind of dread.
No matter how much we say, “You can’t put a price tag on human life,” we do it all the time; if money were no object we’d have at least an urgent care clinic at the end of every block and a nurse in every home. Every budget reflects a determination of a cost-benefit ratio, and clearly, such a lopsided dispersal of health care dollars as we have now for often questionable, unhelpful purposes should require at least our very careful consideration. I’d much rather leave a useful inheritance to my heirs and/or a bequest to charities than I would wasting away in a nursing home hallway with my head on my chest, the dubious privilege for which I and my insurance would be paying many thousands of dollars a month.
Thanks for sharing this poignant, somewhat tragic tale of your mom’s, which mostly affirms Gawande’s point about “control” being an elusive goal indeed for most of us at the end of life.
And then there are the devoted loved ones who insist on life-prolonging measures in hopes of…a miracle? That the ailing person will be strong and healthy again? In hopes that they will never, ever have to say goodbye?
It’s unfathomable. It seems a kind of torture masked as caring, and self serving…even while I acknowledge how very hard it can be to let go.
It’s even harder when there are no clear directives and family members are in a quandary of how to proceed.
So, face your worst fears and enable your best hopes: write your wishes down, file and share them with all appropriate parties. It won’t make you young again, but may save you and others a great deal of both physical and emotional pain.
Thanks for the practical reminder, Angela, on having “the talk” with children, loved ones, clergy, doctors…and getting it all down on paper. If, for some reason my own papers get lost, I’m thinking my loved ones can refer to this post, since I hear everything on the Internet is supposed to live forever! (Even if I don’t…)
This is such a timely discussion. Thanks to everyone who contributed. I’m taking care of my own Mom, whose mind is present but not at all what it once was. Our care at home has slowed her decline of mind and body, but it means I have little time to tell my story here.
Suffice it to say, years ago we talked to Mom about her willingness to suffer and spend time in institutions in order to stay alive longer. It is up to me to interpret her intent now as her condition changes. None of this is easy, but there is a satisfaction that maybe, just maybe, our family can get this right.
As for my end, I’ve learned that you need a strong, loving person who will carry out your wishes, because the odds are you will not be able to do it. You need to repeat–clearly–to your circle what you want and what matters to you about the end of life. And you cannot depend on doctors because their goals are not your goals, even the best of them.
Finally, thank goodness for all the strangers, neighbors and others who support us in our care for an elder. Even little things matter. For instance, today a lady in a car blew me and my Mom a kiss as she drove by, as I wheeled Mom in her wheelchair on a walk in the sun.
Joan, I’m so glad you wrote this. Every single situation is different, with its own contours, relationships, functional levels of the parent, length of the situation calling for their care. I think we’ve learned a lot about the road in general, but in most every circumstance, those involved wind up drawing their own maps, not quite like any other one. Just more evidence of how unique every human being and relationship is.
And yes, those seemingly minor items of a person extending themselves by blowing you and Mom a kiss. So little effort, really, but such rich rewards for all parties. The little things are actually such big and precious things!
Found so much value from your post! Thank you!!
Thanks ever so much for stopping by and letting me know, Joana—much appreciated!