If you read books or listen to podcasts on spirituality, you are bound to be told – many times ad infinitum – that “we are spiritual beings having a human experience.” I usually wince with dismay when I hear such twaddle repeated over and over. Not that it’s in the category of a Trumpian “big lie,” which is obviously a big lie in its own wrong; I actually believe that I am an eternal being who has dipped into the illusion of time in order to learn certain lessons, such as being able to tie one’s shoelaces without assistance, until I can be sprung from this temporal prison. It’s just that I have a pedant’s revulsion whenever I encounter such pap. It’s the same category as another spiritual bromide, such as “there are no accidents.” You’ve heard that one, too, right? To which I am wont to counter, “except for chance events, errors, mistakes and random mayhem.” Yes, I admit it: I am an unrepentant curmudgeon when it comes to spiritual clichés.
Nature and I are two.
Man can’t live on bread alone; he also needs a beverage.
I don’t believe in the afterlife, although I am bringing a change in underwear.
But what will be of more interest to us in what follows is suggested by some of Woody’s quips about death. For instance:
I am not afraid of death, I just don’t want to be there when it happens.
There are worse things in life than death. Have you ever spent an evening with an insurance salesman?
I don’t want to achieve immortality through my work. I want to achieve it through not dying.
Clearly, Woody is not keen on death. He says that he is firmly “against it.” Most people would doubtless agree and would rather not think about it. If you are under sixty, you probably would rather think about other things, such as orgiastic sex. In which case, you might not want to bother reading the rest of this blog.
But we are actually not going to talk about death so much as what happens when you get old and have to face the prospect of death. This is when your telomeres begin to shorten, when you start developing tumors or cancer or heart disease, when your body has begun to betray you and you live in fear and chronic, often severe, pain. In other words, we are talking about your future, and mine. We are talking about the disease from which none of us will recover – aging.
I’m afraid this will make for rather grim reading – until the end. And there won’t be much more humor to leaven the load. But there will still be the occasional zinger, as in this famous remark of Bette Davis: “Old age is no place for sissies.” If you live long enough, though, you will be living in that place. Let’s check it out before we get there.
For years I resisted reading this book, despite its excellent reviews and the urging of my cousin, Cliff, a retired cardiologist, who assured me it was a “terrific” book. But having spent forty years consorting with the once nearly dead who had reported their NDEs to me, I figured I had already devoted enough of my life thinking and writing about about death. But, truth to tell, I was just like everyone else when it came to thinking about dying itself. Frankly, I would rather not – die. Or even think about what my later years might entail if I ever should find myself heading toward that final abyss. After all, despite my infirmities and decrepitude, I am actually in pretty good health. I had never had a serious disease, I was still enjoying life and had continued to write and keep as active mentally as I could. I had been extremely lucky, especially compared to many of my friends who were far worse off than I was or who had already kicked the bucket. What me, worry?
But like many elderly people nowadays, I live alone, and as I am now heading toward 87, I had to admit that I could no longer pretend that I was invulnerable to what are often loosely and playfully called “the ravages of age.” Indeed, no male member of my immediate family had ever lived to 87. How long could I really expect my good luck streak to continue? Most oldsters like to think they will die peacefully in their sleep after a happy life. But, face it, that is as rare as winning the lottery, a delusional wish-fulfillment. You may not die like Tolstoy’s fictional character, Ivan Illich, by screaming in agony for three days before your death, but if you were to read Gawande’s book of horrors, you would quickly learn that you are not likely to enjoy your descent toward death once your body begins to fall apart, as it will.
So, in the end, I figuratively girded my loins, and delved into Gawande’s book. In fact, I was already familiar with Gawande. I’d been reading his work for years, mostly in The New Yorker, for which he’s long been a staff writer. But as a writer and medical scholar, he has had a very distinguished career. He has been awarded many literary prizes, is a MacArthur Fellow, and is on the faculty of Harvard. He is widely and deservedly recognized as one of the most outstanding writer/physicians in America. So I knew I would learn a lot from this man.
In cultures with traditional extended family structures, old people are not warehoused into nursing homes as they tend to be in our modern culture. But with the rise of isolated nuclear families in our own time, many old people are effectively deposited into nursing homes where strangers care for them and family members may visit only occasionally, if at all. Or, since increasingly old people, especially women, live by themselves, they may become ill, which creates still other problems. One way or another, the situation of old people can often be fraught with risk or even greater peril – complete abandonment.
But here’s what makes it worse, as Gawande points out. In former times, people didn’t live to a great age. During ancient Roman times, for example, the average life expectancy was about thirty years. Even in the Middle Ages, it was rare to live beyond one’s fifties. And when people did die, they tended to die quickly. Even in George Washington’s time, dying could come overnight, as it did for him. On December 13th, 1799, he suddenly became ill. By the next night, he was gone.
Being interested in classical music, I can’t help thinking of all those famous composers that never made it out of their thirties. Schubert, for instance, died at 31, and Mozart, Mendelssohn, Chopin, Carl Maria von Weber, and Henry Purcell never lived to see forty.
But now, thanks to advances in sanitation, diet, and medical technology, people can live to very advanced ages, which means that, relatively suddenly, our country and most others in the developed world, are struggling to support vast numbers of older people who can no longer live independently. Enormous amounts of money have to be expended, especially in the last year of elderly people’s lives, to house and take care of them. They become, as sociologists put it, “surplus populations.” And since most families can no longer take care of their own, institutions arise to warehouse the old until they die. Thus, we have seen the rise, especially since the middle of the last century, of the obscenity of nursing homes.
Of course, there are many caring people who work in such places, but these are poorly paid jobs, and for many, it is “just a job.” How many of us dream that one day we will wind up in such a dismal and depressing setting, being taken care of by a succession of strangers, when we have lost all agency over our own fate? But this could indeed be your fate one day, my friends. This is how your life could end when you are sick, infirm and perhaps demented. It could happen to me, too, of course, but I would be tempted to say, “over my dead body!” Truly, I would rather die than to end up in such a place, wouldn’t you?
Have you ever visited such “homes?” I have. During the last years of my mother’s life when I was still teaching at the University of Connecticut, I had to place my mother, then in her early 80s, in such a home in Berkeley. I would visit her as often as I could, and once I was able to move back to California, I was able to visit almost weekly until she died.
I am an only child from a very small family, and in all the years she lived there – she died when she was nearly 89 – no one else ever visited her. (Sometimes, however, my girlfriend at the time, would accompany me.) What you would have seen if you had been with me is fairly typical of such homes. You enter and you see a long corridor of people strapped into their wheelchairs, drooling or cursing of just sitting there, mute and absent. Many are demented, of course. My mother shared a room with a succession of women she didn’t know, some of whom would rave during the night, she told me.
My mother was beginning to lose her hearing, but she was still, until the near the end, mentally competent. She could no longer walk, so on nice days I would push her wheelchair around the neighborhood (fortunately, the streets were flat), or take her out in back and read to her (she liked to listen to short stories by Chekhov) or play gin rummy with her. But she couldn’t read, didn’t want to listen to the radio or watch TV. She didn’t even like to be touched. She mostly remained quiet and just stayed in her bed. She had no life. The place had no life. My mother wasn’t mistreated. The staff, so far as I could tell, were kind and caring people. But, still, I felt absolutely dreadful every time I had to leave, seeing her there in her bed, lying passively, not even able to say or wave goodbye. I would kiss her on her forehead and say I would see her again next time until there was no next time.
Gawande, who in preparation for writing his book, spent a great deal of time in places like those in which my mother vegetated and died, came away with the direct knowledge of how much such institutions fail to serve the needs of the people in their care. At the outset of his book, he offers an almost savage indictment of the failures of modern medicine:
But in his travels, Gawande didn’t just wander through the often soulless and depressing interiors of nursing homes; he also spent a lot of time seeking out experts in the field of death and dying, such as elderly geriatricians (apparently themselves a dying breed), but especially innovators who are trying to change the culture of such institutions so that they would become much more than joyless prisons for people who were suffering and merely marking time, as my mother did, waiting for the end to come.
Many of these pioneers have come up with ingenious solutions to enliven the daily lives of the residents of these homes, and some of the stories Gawande recounts in his book are very inspiring and hopeful – and often hilarious. I only have space to relate one such story, but it shows what is possible if one has imagination, pluck and perseverance.
The administrators thought he was nuts. Besides, this would never fly. There was no way they could get such a wacky plan approved, much less funded. But Bill Thomas was the kind of guy who would not be denied. He proved to be incredibly dynamic and persuasive. And in the end, he was able to accomplish everything he had in mind.
Once the animals came into the home, there was of course pandemonium and confusion, but ultimately most of the residents were delighted. The animals were a big hit and the residents’ spirits were uplifted. Many were brought out of their shells of isolation, as Gawande relates:
“People who we had believed weren’t able to speak started speaking," Thomas said. "People who had been completely withdrawn and nonambulatory started coming to the nurses’ station saying, ‘I’ll take the dog for a walk.’” All the parakeets were adopted and named by the residents. The lights turned back on in people’s eyes.
Researchers studied the effect of this program for two years. The findings? The number or prescriptions was half that of conventional nursing homes. The need for psychotropic drugs, like Haldol, decreased. Total drug costs fell 38% compared to other similar homes. Deaths fell 15%. In short, Thomas’s plan was an improbable but undeniable success.
Suffering is inevitable, of course, especially for the old and infirm and those afflicted by incurable illnesses, but ways are being found to mitigate that suffering by paying compassionate attention to the special needs and goals of people who find themselves, as many of us will one day, dealing with intractable illnesses as they approach and often yearn for death.
Gawande himself, as gifted a surgeon as he is, is very forthright about his own shortcomings as a physician when it comes to learning how to be with the dying. Doctors, after all, are not trained to deal with the dying; they often don’t know how to talk to or be with such people, and sometimes lose interest in them once they feel they can no longer help them. Doctors are taught to fix things, but you can’t fix death. If you regard death as the enemy, then the enemy always wins in the long run. It’s understandable that many doctors would prefer to ignore or slight the dying in order to attend to the living.
But Gawande in the course of doing his research for his book and talking to so many people has come to learn a lot about how to be with the dying, and he has advice for his fellow doctors, which he sums up in three questions they should be sure to put to such people:
What are your biggest fears and concerns?
What goals are most important to you?
What tradeoffs ae you willing to make, and what ones are unacceptable to you?
The dying don’t just want technical information, which often just confuses them, anyway. How do they know what’s best for them? No, they want doctors to listen to them, to their fears, to understand their goals, to engage with them, and not just to offer their “expert opinions.” In short, doctors need to learn to shut up at such times and listen. That can make all the difference, as Gawande notes: “People who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”
And eloquently concludes:
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 conversation in ways that transform the possibilities for the last chapters of everyone’s lives.
Gawande is the son of two physicians, and his father was a distinguished urologist, a man of immense energy, as healthy as “a Brahma bull,” Gawande says, but in his seventies, he finally begins to learn that he, too, will have to face his mortality. Always healthy, he becomes sick and then gravely ill. The last pages of this incredibly moving book become even more poignant when Gawande has to deal with his own father’s illness and, ultimately, with his death. I found this part of the book very tender, sad, and yet so aptly fitting, as if everything that Gawande had learned in conducting the research for his book could at the end be distilled as his final gift to his beloved father. What a beautiful tribute to a loving father from a loving son.
A Personal Postscript
Gawande does not seem to be a religious man. I gather that like most physicians he has a secular outlook on life. His concern throughout the book is of course on questions of mortality, and not with what may come afterward. But I, who have mostly been concerned in my work with what happens at the point of death and with what people realize at that liminal transcendent moment, have a different point of view. What struck me in reading this book is how desperately people cling to life, and how, even when they long to die, their families often urge their doctors “to do everything possible” to preserve their lives of their loved ones, even if that only serves to prolong their agony.
In one of my previous blogs, I recounted the case of the world-famous psychiatrist, Irvin Yalom, who resisted to the last his wife’s desperate pleas to be allowed to die because of unremitting pain from terminal cancer. She wanted death, but her husband desperately didn’t want her to leave – to leave him.
I wish people could know that when facing death, despite the pain, there is no reason to fear. I suppose I am guilty of resorting to a cliché of my own when I say that through my work, I have learned that “death is not a dead end.” Maybe I should write a book called “Being Immortal” and send a copy to Woody Allen while there’s still time. For I really do believe that we are eternal beings, and that we are all destined to return to our true home once our life on this plane ends. Maybe this, too, is something that those who attend the dying might want to keep in mind. After all, anything that could ease our own fears of dying may also serve to reassure those about to make their final passage to whatever may lie beyond this mortal life of ours.
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What another amazing message! Ken, thank you once again for writing such an insightful, thoughtful exhortation really on how to live with dignity throughout the entire life cycle.
ReplyDeleteWhen I was seventeen, I was driving a tractor through an almond orchard here in northern California. It was August , hot, dusty, miserable, and noisy. I hated it. I remember the moment I said to God, "What is worth doing in life because this 'aint it!" I heard as clearly as I'm writing now, "Go visit the seniors in the retirement homes." I had no idea what I was doing so I bought some stationery in case anyone wanted to dictate a letter to a loved one. I asked to borrow the car and drove to Chico. In those days, there was no rules or policies about entering such a convalescent hospital which is where I started. I just walked in and made my way to the first door with a resident. "Hi. My name is Brian Kraemer. I'm here to visit people. Would you like to visit?" The elderly woman immediately invited me to sit down and we became good friends.
Thus began a now forty-one year love affair with seniors. I have enjoyed several thousand grandmas and grandpas, mostly grandmas because the grandpas die earlier, but I have adopted many of them and they me. I play piano for them. I listen to them. I ask them questions. I treat them with the love and respect they deserve. I remind them that they are the same women and men they've always been even when they can't speak anymore, can't hear well, see well, control their own bowel functions. They are the same amazing human beings with profound life stories and I want them to know that I know this is true. I have seen many tears as I do nothing more than reassure them that they are the same person they've always been.
I remember one gentleman whose wife was talking baby talk to him because he had a stroke and she thought he had lost his mental faculties. When she wasn't around, I reminded him of all the amazing things he had done for others and I knew he was the same man and understood everything I was saying. Though he couldn't talk, tears flowed down his face as I did nothing other than reassure him of my own understanding of his wholeness in a broken body.
I have had so many seniors, disabled by strokes, pound on the arm of their wheelchairs after each song I play on the piano. They want me to know that they appreciate me and they appreciate the memories that these old tunes from the thirties, forties, fifties, and so on bring back. "Don't sit under the apple tree with anyone else but me..." These seniors may be looking terribly ragged in these aging bodies, but they are the same imaginative five-year-olds, playful teenagers, voluptuous young adults, and so on that they've ever been. They haven't lost anything. The thing we need to remember more than anything else. Though they are becoming physically feebler and feebler, they are adding experience after experience and literally becoming more whole. A ninety-four year old woman is not just ninety-four. She is every age, every moment of every age, she has ever been all at once. When we behold a ninety-four year old woman we are beholding a gold mine of experience and knowledge and wisdom. The wise search for the gold in there and these seniors love being simply seen for the richness of who they are.
I have to share one more story before I go...I was in my early twenties and I had been visiting these senior centers and convalescent homes for a few years. A nurse asked me if I would visit a particular woman who she said "was not doing well."
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I walked into the room and this elderly woman was whimpering like a frightened animal. She had an oxygen mask on her face and she just kept making this whimpering sound like she was so afraid. I walked up to her and said, "Hi. My name is Brian. I come to this home to visit people. May I visit with you?" She nodded her head yes and I stood at her bedside telling her a little about where I grew up and nearby I lived and why I was there.
ReplyDeleteShe couldn't talk, but obviously she understood everything that was going on. I asked her, "May I pray for you?" She nodded her head yes. I put my hand on her hand and said a simple little prayer, nothing particularly religious or flowery, just simple, "God, please bless this woman and help her to not be afraid. Please take good care of her and help her feel better." That was it, short, sweet, sincere, from a child basically. I then asked if it was okay for me to sing a few songs for her. Again, she nodded yes. I sang "Jesus Loves Me, This I Know," "Jesus Loves the Little Children," "In the Garden," anything I could remember by heart and while I did so, I knew it was the right thing to do to run my fingers through the hair on her forehead. I sang and just kept running my fingers through her hair. She closed her eyes and got that look that cats get when they are petted. Within a few minutes, her breathing got quieter and quieter and she fell asleep.
I stopped at the front desk and told them that she was asleep now and I would come back in the morning to find out how she was doing. When I returned the next day, I was told that she had "passed in her sleep." I still get tears in my eyes when I think about that precious time she and I had together in the closing hours of her life. I cannot tell you how meaningful those moments were when two human beings met together in a sacred moment and were kind to each other. I hope to God, and I mean it, I hope to God that someone walks into my room, prays for me, sings to me, holds my hand, and runs his or her fingers through my hair when I am on that final journey into further realms of adventure.
I think it's so important to trust that so much is going on for all of us all the time that we don't even begin to understand or appreciate the wonder of it all. When someone is in that final transitional period we call "dying" it is entirely possible, I think even likely, that that person is being nurtured, held, supported, guided, comforted by beings other than ourselves. We have midwives in this realm. I believe with my whole heart that they have midwives in other realms as well and these midwives help us through the process of first inverting, flipping over in the uterus, and then beginning the process of transition. We will soon ask ourselves, "Why was I so afraid?" We have done this infinite times and will continue to do so. "You must be born again," Jesus said. I think he may have meant exactly what he said. "You must be born again."
With this, I wish you a wonderful day. I feel as if we have eaten breakfast together and now I must continue on this journey. It is a wonderful privilege to know you, Ken, and as much as I know you are going to enjoy moving onto other realms, I personally am enjoying every day you remain here with me and with all of us. You even hinted at another book today! I will forgive you if you break your claim to having completed your final book, "Blogging Toward Infinity," which I'm enjoying by the way and recommend to everyone. Peace always.