Dying to Live: What Are the Side Effects of the Modern Hospital?

3500 words

Written by R-J Heijmen

This essay comes from the inaugural issue of The Mockingbird. To order a copy, click here. To subscribe to the magazine, click here.

My two sons have never seen a dead body. Of course, this is only partly true. They’ve seen innumerable dead bodies on the myriad screens which occupy so much of their lives. But it’s not quite the same, is it? A collection of pixels which disappears shortly after hitting the ground—nameless, storyless bits of code ceasing to exist—is not the same as an expired hunk of beloved flesh.

Come the think of it, I’ve never seen a dead body either. Or have I? I vaguely remember a twitching leg left exposed by a not-quite-large-enough sheet of white on a 7th Avenue sidewalk near Carnegie Hall. Was it a dream? If not, I was about 12 years old at the time.

Another occurrence comes to mind, though again as if in a mist. I was in my second floor apartment in Paris during a college year abroad when, through the open window, I heard a sharp yell, followed by a thud on the street below. Peering over my small balcony, I saw a young man sprawled and motionless in the road, pedestrians beginning to gather round him, looking down and pointing up to a floor above mine. I just now verified with my wife (whom I was dating at the time) that this actually happened. Perhaps the trauma of the event, or its incompatibility with the rest of my life narrative, has caused my brain to file it away under “miscellaneous.”

And while my sons may have never seen a dead body (nor has my wife), they recently attended their first funeral, a thirteen year-old boy at their school having lost his battle with cancer.

When I consider my family’s close encounters with death—an accident, a suicide, a tragic disease—they are linked by their exceptionalism.  In Woody Allen’s Annie Hall (1977), Alvie Singer opines that “life is divided into the horrible and the miserable. That’s the two categories. The horrible are like, I don’t know, terminal cases, you know, and blind people, crippled. I don’t know how they get through life. It’s amazing to me. And the miserable is everyone else.” Put in these terms, all of the deaths to which we have been witnesses were horrible. They were in the realm of the exceptional, the unusual, rather than the quotidian, the simply miserable.

In my experience, many (perhaps most) people don’t have an intimate experience with death until one of their parents passes away, and given the average American life span, this may not occur until well into their middle life. This is an exceptional set of circumstances in the sweep of human history, and while we may rightly rejoice that death is not the close companion it once was, it may be that the chasm that has opened between us and the experience of dying has some unfortunate consequences.

***

In his excellent 2010 essay for The New Yorker entitled “Letting Go,” Dr. Atul Gawande outlines a problem that has arisen in contemporary American culture.In the past few decades,” he writes, “medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.” We have gotten so used to living, Gawande writes, so used to fighting and resisting, that we have forgotten how to undergo that most universal of human processes. And this deficiency has a dark side:

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were…admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.

In other words, our ignorance of how to die well, our discomfort and lack of experience with even the idea of death, our fight-it-at-all-costs attitude and actions, drastically reduces quality of life both for the dying and for those who love and care for them.

Reading Gawande, I was reminded of Barbara Ehrenriech’s experience with breast cancer as chronicled in her book Bright-Sided: How Positive Thinking is Undermining America. After becoming frustrated with the unrelenting positivity-cum-denial of internet forums for cancer sufferers, she tried an experiment.

I post a statement on the Komen.org message board, under the subject line ‘angry,’ briefly listing my own heartfelt complaints about debilitating treatments, recalcitrant insurance companies, environmental carcinogens, and, most daringly, ‘sappy pink ribbons.’ I receive a few words of encouragement in my fight with the insurance company, which has taken the position that my biopsy was a kind of optional indulgence, but mostly a chorus of rebukes.

The discomfort with death is so total, the taboo so complete, that even the mere mention of the most appropriate possible emotions is summarily squelched. One must always keep living and, in order to do so, set aside any thought of the inevitable alternative.

***

It wasn’t always this way. On a recent weekend away from our kids, my wife and I rewatched Little Women (perhaps Winona’s Ryder only unembarrassing performance, next to Edward Scissorhands), based on Louisa May Alcott’s 1868 novel. The story revolves around four sisters growing up in 19th century New England. When one of them is struck with a disease from which she clearly will not recover, she is not rushed to the ER or exhorted to keep fighting. Beth is kept at home, in her own bed. All of her family and friends come to her side to speak and receive final words. When she meets death, she meets it not as an exceptional or “horrible” event, but as something usual, even if “miserable.” Death, for her, is part of life, and not distinct from it. Beth dies as she lived, in the same space surrounded by the same people.

To be sure, the drama of the moment described above has a Hollywood sheen, but it is, in fact, an accurate depiction of the experience of “common” death for the vast majority of human history. Philippe Aries, in his wonderful little book Western Attitudes Towards Death, describes the process of dying which was rehearsed time and time again over the centuries leading up to our own. Using the epic French poem Le Chanson de Roland as a template, he writes:

One awaited death lying down… Thus prepared, the dying man could carry out the final steps of the traditional ceremony… The first step was to express sorrow over the end of a life, a sad but very discreet recollection of beloved beings and things… After the lamentation about the sadness of dying came the pardoning of the always numerous companions and helpers who surrounded the deathbed…[the dying man granting] forgiveness for any harm he might have unintentionally [suffered]… Now it was time to forget the world and think of God. The prayer had two parts. The first was the culpa (“God, by thy grace I admit my guilt for my sins…”)… The second part of the prayer was the commendacio animae, a paraphrase of a very old prayer borrowed from a Jewish synagogue… At this point came absolution, indisputably the sole religious, or rather ecclesiastic (for everything was religious) act. It was granted by the priest… After the final prayer all that remained was the wait for death, and there was no reason for death to tarry… He said [his last prayer] and never again uttered a word.

Gawande, too, in the New Yorker piece, comments on these time-honored (until recently) traditions surrounding death:

Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 Medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours.

As a society, we may have attained a greater span of life than our forefathers, but in reading these descriptions of deaths gone by, one cannot help but feel that we have lost something in the process. We have gained length of days, but have we lost some of their quality, in both life and death?

***

When I appraised my wife of the topic on which I would be writing for this article, her reaction was twofold: “Well, that sounds like something I would have no interest in reading!” and “Why would I want to think about death? It’s so depressing!” How encouraging she is. And of course, quite correct. Death is something to avoid, to deny, as Ernest Becker says, at all costs. It is the final defeat, the ultimate mark of our utter powerlessness.

When I visit dying people, usually in the hospital (more on that later), I can’t escape the impression that they resemble, more than anything else, infants. They are small and weak, helpless and in need of constant attention: sleeping, drooling, toothless, hairless, swaddled, cradled, diapered. We enter this world dependent and exit in the same way, and all of our efforts at mastery in between are, at the end, revealed for the hollow charades they always were. “Truly I tell you,” Jesus says, “unless you change and become like little children, you will never enter the kingdom of heaven”(Matt 18.3), and apparently we have no choice in the matter.

So, if talk about death is depressing and to be avoided, why do it? Well, to paraphrase (and perhaps subvert?) one William Wallace, I’m not sure that we can ever truly live until we embrace that we will one day die. In Christian circles, we often say that Easter comes by way of Good Friday. You have to go through the “valley of the shadow of death” to reach the Mount of Transfiguration. You can’t leapfrog death on your way to resurrection. As Bono puts it, “always pain before the child is born…why the dark before the dawn?”

Specimen #41 by Michael Mapes

Specimen #41 by Michael Mapes

Practically speaking, I find that remembering death, seeing death, thinking about and embracing death, lowers the anxiety that surrounds so much of my living. “Remember man, that dust thou art, and unto dust thou shalt return.” These are the terrifying, and yet profoundly liberating, words of Ash Wednesday. You’re not that important. Your children aren’t that important. Where you live and what job you have and where your kids go to school and what kind of car you drive and whether or not you’re able to pay your bills or achieve any career success or manage to get anyone to think highly of you or read your depressing and poorly written essay isn’t that important. Now, don’t you feel better?

The theologian Gerhard Forde has written that it is God’s work, and hope, to take us unhappy little gods and make us into true humans, and I can think of no better way to accomplish this than to bring us in touch, regularly and powerfully, with our own mortality. When I think of my children, about the happiness and freedom I so desperately want for them, there seems no more potent possible prescription than exposure to ordinary, miserable, inevitable death. Struggling with your homework? Your friends? Your love life? Don’t worry, it’ll only hurt for a minute, and it will all be over soon. I’m only slightly kidding.

When I perform baptisms, I sometimes (when I’m feeling courageous) remind the parents that we have gathered together in order to put their infant to death, or at least to acknowledge that their perfect little bundle of joy is, in St. Paul’s words “dead in (its) transgressions and sins” (Eph 2.1). Water is, Biblically speaking, a symbol of death (think Noah, Jonah, Charlton Heston at the Red Sea), and to submerge, or even sprinkle a person is to be reminded that we are all dead men walking, and that our only hope for life lies in a Power greater than our own. Perhaps one of the chief jobs of parenting ought to be habituating our children to the reality that they are not, naturally speaking, immortal. It might create greater anxiety in the short-term, but the long-term benefits could be great.

Of course this will never happen. Our thirst for glory & godhood (since the Garden) is such that, left to our own devices, we will ignore, avoid and deny death at all costs, as Gawande so potently describes. Thus, hospitals.

***

I must say that, in general, modern medicine is a very great good. I have, at times, foisted a rather morbid parlor game on my friends and family (I’m generally a pretty peppy person, I promise) in which we discuss who among us would still be alive were it not for modern medicine. Here’s a sample rundown:

Me: dead at 28, appendicitis

My wife: dead at 26, in childbirth (possibly earlier, UTI)

Oldest son: possibly died in childbirth

Youngest son: never born due to death of mother

Brother #1: appendicitis

Brother #2: adrenal disorder leading to cardiac arrest

Brother #3: sepsis (or amputation or arm) resulting from compound fracture

Isn’t that fun? Modern medicine has saved many, many lives. This point was driven home on a trip to Ethiopia during which I noticed that peasant children were, counterintuitively, more warmly dressed the older they got. When I inquired about this, it was explained that parents were wary of devoting too many resources before a child had established their survivability.

***

There’s no doubt as to the benefits of the medical care we in the developed world enjoy. That being said, there may well be a line that we have crossed, a transition from affirmation of life to denial of death, which has served to impoverish, rather than to ennoble. I will quote Aries in my defense:

From the Early Middle Ages until the mid-nineteenth century, the attitude toward death changed, but so slowly that contemporaries did not even notice. In our day, in approximately a third of a century, we have witnessed a brutal revolution in traditional ideas and feelings, a revolution so brutal that social observers have not failed to be struck by it. It is really an absolutely unheard-of phenomenon. Death, so omnipresent in the past that it was familiar, would be effaced, would disappear. It would become shameful and forbidden.

Of course, Aries is talking about death in a hospital, or nursing home, or anywhere else that is separated from the habitats of the living. Death has become an outsourced event in which the dying are surrounded by those they never before knew or loved. When visiting the hospital, I am often struck by the presence of caregivers who do not even speak the same language as those they care for, and no doubt are minimally compensated—a measure of death’s shamefulness, devaluation and marginalization.

There have been further subversions of previous and hallowed practice, as Aries notes. It has become “a technical phenomenon obtained by a cessation of care…a decision of the doctor and the hospital team.” At the time of death, the patient has usually been unconscious for quite some time, so that there is no opportunity to perform the traditional rites. In Gawande’s words, there is never any “chance for you to have said goodbye or ‘It’s O.K.’ or ‘I’m sorry’ or ‘I love you.’” The trauma and ignorance of death has become a vicious cycle, bad experiences fueling fear fueling more bad experiences.

I recently had a teenager in my office who was still seeking closure for the death of a long-deceased relative. She had been a young girl at the time and her parents, not wanting to cause their daughter harm, had thought it best to keep her away from the hospital room. Ten years later, she still craved the resolution that only seeing the body could have brought.

Aries is familiar with this pattern, writing that, when death finally does come, the inclination of the medical establishment seems to be to “reduce to a decent minimum the inevitable operations necessary to dispose of the body. It is above all essential that society—the neighbors, friends, colleagues, and children—notice to the least possible degree that death has occurred.” When my wife and I suffered a miscarriage, we debated whether or not we wanted to see our daughter’s body, but when we inquired, we were told that it was against hospital policy.

Thinking through the current state of affairs surrounding our attitudes towards and treatment of death, one cannot help but agree with Aries when he declares that the “combination of phenomena which we have just analyzed is nothing other than the imposition of an interdict. What was once required is now forbidden…death has become a taboo.” Indeed, what other explanation can there be? We don’t talk about death, we don’t acknowledge it, we don’t see it, we send people away to suffer it, and when death occurs we do our utmost to ensure that it has the least possible impact on our “normal” lives. One wonders, if we were to be visited by some alien race, whether or not they would even notice that death is a part of our lives, or whether people would seem to simply disappear.

How has this come to pass? Aries, in agreement with Ehrenriech, diagnoses the disease behind the symptoms as the modern need for happiness,

the moral duty and the social obligation to contribute to the collective happiness by avoiding any cause for sadness or boredom, by appearing to be always happy, even if in the depths of despair. By showing the least sign of sadness, one sins against happiness, threatens it, and society then risks losing its raison d’etre.

Aries’ analysis is a compelling one, and as you consider, dear reader, your own experiences (or lack thereof) with death, you may well be convinced. Andre Dubus III, in a recent interview on the Diane Rehm show, put it this way:

Dubus III“I think that in America…we’ve been sold a bill of goods. We think we’re supposed to be happy all the time, especially if we’re successful.”

Rehm: “It’s in the constitution!”

Dubus III: “Yeah. ‘Life, liberty and the pursuit of happiness.’ And I think that’s done us a disservice.”

Or, to quote Steve Martin in L.A. Story: “I was deeply unhappy, but I didn’t know it because I was so happy all the time.” We are a deeply death-denying culture, but we don’t know it because we’re so alive all the time.

For my part, I cannot help anymore but view hospitals, at least in part, as monuments to our fear, idols to which we sacrifice ourselves and those we love on the altar of “happiness.” I don’t know about where you live, but in my neck of the woods there is a furious medical building boom. The nicest, newest, biggest construction is invariably a “health” facility of some sort, and as I walk their marbled halls, through soaring wood-paneled atria, I think of those who have given their life savings, their homes, their chances to say “I love you” or “I’m sorry” or “I forgive you,” for the sake of a few more horrible weeks. Our fear of death is, both individually and collectively, killing us.

***

What is to be done? Gawande suggests surrender. Medically speaking, this means hospice care for the dying, as opposed to a prolonged fight. He confesses that “like many people, I had believed that hospice care hastens death,” but then goes on to make a startling, and quite important point:

Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer…

You live longer only when you stop trying to live longer. Is it so great a jump to drop the adjective from the sentence and say simply, “You live only when you stop trying to live”? This may be the greatest point I have attempted to make: that true life happens when we stop managing it. Time is gained, and enjoyed, when it is held a bit more loosely. And part of this “letting go,” if I may again quote Gawande, is to face death directly. I am writing this in the season of Advent, the weeks leading up to Christmas, and perhaps this is the greatest earthly gift that faith can offer: the permission to, without shame or fear, admit our mortality, and find that, in accepting our death, we may also receive anew the gift of our life.

R-J Heijmen lives in Houston, TX with his beautiful wife Jaime and their two strapping sons Jackson and Spencer, where R-J is an Episcopal priest at St. Martin’s Church. R-J’s passions include Super Mario Galaxy, road trips, body surfing, The New Yorker, and Richard, his Estoril Blue 1999 BMW M3 Convertible. 

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