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Sunday, 2 August 2015

It's never too early to start thinking about your own death


There is a mid-fifteenth century German woodcut called "Triumph over Temptation" that depicts a man lying on his deathbed. The denizens of heaven and hell surround him, fighting over his mortal soul. Demons with twisted porcine faces, claws, and hooves reach toward the bed to drag him down to the fiery underworld; above him, a horde of angels and a floating crucified Jesus pull a tiny version of the man (presumably his soul) upward to heaven. In the midst of all this commotion, the dying man looks positively blissed-out, filled with inner Zen. The little smirk on his face tells the viewer what he is thinking: "Ah yes, death. I've got this."
The question is: how do we get to be that guy? The one who is facing his own death with complete calm, ready to get on with the moving on? The woodcut represents a popular genre in the late Middle Ages: the Ars Moriendi, or the Art of Dying. Ars Moriendi were instruction manuals that taught Christians how to die the good death, repenting mortal sins and allowing the soul to ascend to heaven.
This view of death as an "art" or "practice," rather than an emotionless biological process, can be tremendously empowering. There is no Art of Dying manual available in our society. So as a mortician who's worked with the dead and the grieving for seven years, I decided to write my own. It is intended not only for the religious, but also for the growing number of atheists, agnostics, and vaguely "spiritual" among us. For me, the good death includes being prepared to die, with my affairs in order, the good and bad messages delivered that need delivering. The good death means dying while I still have my mind sharp and aware; it also means dying without having to endure large amounts of suffering and pain. The good death means accepting death as inevitable, and not fighting it when the time comes. This is my good death, but as legendary psychotherapist Carl Jung said, "It won't help to hear what I think about death." Your relationship to mortality is your own.
I recently sat next to a middle-aged Japanese man on a flight from L.A. to Reno. He was reading a professional magazine called Topics in Hemorrhoids, complete with a large-scale photographic cross section of the anal canal on the cover. Magazines for gastroenterologists do not mess around with metaphorical cover images of sunsets or mountainscapes. I, on the other hand, was reading a professional magazine that proclaimed "Decay Issue!" on the cover. We looked at each other and smiled, sharing a tacit understanding that our respective publications weren't for popular consumption.
For me, the good death includes being prepared to die, with my affairs in order, the messages delivered that need delivering
He introduced himself as a doctor and medical school professor, and I introduced myself as a mortician trying to engage the wider public in a conversation about death. He said, "Well, good, I'm glad you're talking about this. By 2020 there will be a huge shortage of physicians and caretakers, but no one wants to talk about it."
We know that media vita in morte sumus or, "in the midst of life we are in death." We begin dying the day we are born, after all. But because of advances in medical science, the majority of Americans will spend the later years of their life actively dying. The fastest-growing segment of the US population is over 85, what I would call the aggressively elderly. If you reach 85, not only is there a strong chance you are living with some form of dementia or terminal disease, but statistics show that you have a 50-50 chance of ending up in a nursing home, raising the question of whether a good life is measured in quality or quantity. This slow decline differs sharply from times past, when people tended to die quickly, often in a single day. Postmortem daguerreotypes from the 1800s picture fresh, young, almost lifelike corpses, many of them victims of scarlet fever or diphtheria. In 1899, a mere four percent of the US population was over 65 — forget making it to 85. Now, many will know that death is coming during months or years of deterioration. Medicine has given us the "opportunity" — if you want to call it that — to sit at our own wakes.
But this gradual deterioration comes at a terrible cost. There are many ways for a corpse to be disturbing. Decapitated bodies are fairly gruesome, as are those dredged from the water after several days afloat, their green skin sloughing off in strips. But the decubitus ulcer presents a unique psychological horror. The word "decubitus" comes from the Latin decumbere, to lie down. As a rule, bedridden patients have to be moved every few hours, flipped like pancakes to ensure that the weight of their own bodies doesn't press their bones into the tissue and skin, cutting off blood circulation. Without blood flow, tissue begins decay. The ulcers occur when a patient is left lying in bed for an extended period, as often happens in understaffed nursing homes.
Without some movement, patients will literally begin to decompose while they are still living, eaten alive by their own necrotic tissue. One particular body that came into the preparation room at Westwind, the crematory in Oakland that was my first job in the death industry, I will remember for the rest of my life. She was a 90-year-old African American woman, brought in from a poorly equipped nursing home, where the patients who weren't bedridden were kept in cheerless holding pens, staring blankly at the walls. As I turned her over to wash her back, I received the ghastly surprise of a gaping, raw wound the size of a football festering on her lower back. It was akin to the gaping mouth of hell. You can almost gaze through such a wound into our dystopian future.
We do not (and will not) have the resources to properly care for our increasing elderly population, yet we insist on medical intervention to keep them alive. To allow them to die would signal the failure of our supposedly infallible modern medical system.
The surgeon Atul Gawande wrote in a devastating New Yorker article on aging that "there have been dozens of bestselling books on aging but they tend to have titles like ‘Younger Next Year,' ‘The Fountain of Age,' ‘Ageless,' ‘The Sexy Years.' Still, there are costs to averting our eyes from the realities. For one thing, we put off changes that we need to make as a society. . . . In thirty years, there will be as many people over eighty as there are under five."
As I turned her over, I received the ghastly surprise of a gaping, raw wound the size of a football festering on her lower back
This is a problem my plane seatmate, the gastroenterologist and medical professor, encounters afresh every year, as he meets a new crop of students terrified of their own mortality. Even though the elderly population continues to soar, he has fought for years to implement more classes in geriatrics, and is repeatedly denied. Medical students just aren't choosing geriatric care; the income is too low, the work too brutal. No surprise, medical schools turn out plastic surgeons and radiologists by the boatload.
Gawande, again: "I asked Chad Boult, the geriatrics professor now at Johns Hopkins, what can be done to ensure that there are enough geriatricians for our country's surging elderly population. ‘Nothing,' he said. ‘It's too late.'"
I was impressed that my doctor seatmate (and bit of a kindred spirit, really) took such an open approach. He said, "I tell dying patients that I can prolong their lives, but I can't always cure them. If they choose to prolong, it will mean pain and suffering. I don't ever want to be cruel, but they need to understand the diagnosis."
"At least your students are learning that from you," I said, hopeful.
"Well, OK, but here's the thing: my students don't ever want to give a terminal diagnosis. I have to ask, ‘Did you fully explain it to them?'"
"Even if someone is dying, they just . . . don't tell them?" I asked, shocked.
He nodded. "They don't want to face their own mortality. They'd rather take an anatomy exam for the eighth time than face a dying person. And the doctors, the old guys, guys my age, they're even worse."
My grandmother Lucile Caple was 88 when her mind shut down, even though, technically, her body lived on to the age of 92. She had gone to the bathroom in the middle of the night and fell, hitting her head on the coffee table and developing a subdural hematoma — medicalspeak for bleeding around the brain. After a few months in a rehabilitation center, sharing a room with a woman named Edeltraut Chang (whom I mention only because hers was the greatest name ever assembled), my grandmother came home. But she was never the same, transformed by her brain damage into something of a loony tune — if I may throw around another fancy medical term.
Without medical intervention, Tutu (the Hawaiian word for grandmother) would have died shortly after her traumatic brain injury. But she didn't. Before her mind was blunted, she had insisted, "For heaven's sake, don't let me ever get like that," yet there she was, stuck in that depressing place between life and death.
After the subdural hematoma, Tutu would tell long, fantastical stories to explain how she had fallen and hurt herself. My favorite was that the city of Honolulu had commissioned her to paint a mural at the entrance to City Hall. While leading her merry team of painters on an artistic quest up a mangrove tree, a branch had broken and she plummeted to the ground below.
One evening Tutu thought my father, whom she had known for 40 years, was a maintenance man attempting to make off with her jewelry. My grandfather, who had died several years prior of Alzheimer's, would pay her postmortem visits to share classified information from the beyond. According to Tutu, the government had assassinated Grandpa Dayton to cover up the fact that he alone knew the structural reason the levees had failed after Hurricane Katrina.
mortician quote
Tutu was what you'd call a "tough old broad." She drank martinis and smoked until the day she died, yet her lungs remained as pink as a baby's bottom (results not typical). She grew up in the Midwest during the Depression, forced to wear the same skirt and blouse every day for an entire year. After she married my grandfather, they lived all over the world, from Japan to Iran, settling in Hawai'i in the 1970s. Their house was one block away from mine.
After the accident, Tutu spent her remaining years living like the Queen of Sheba in her retirement condominium downtown. She had 24/7 care from a Samoan woman named Valerie, who bordered on sainthood. Even toward the end of Tutu's life, as my grandmother slipped further and further into the fog, Valerie would get Tutu out of bed every morning, bathe her, dress her (never forgetting the pearl necklace), and take her on outings about town. When Tutu wasn't well enough to leave the house, Valerie lovingly propped her up with her cigarettes and left CNN on the television set.
The unfortunate truth, and one of the reasons why openly acknowledging death is so crucial, is that most people who linger into extreme old age are nowhere near as lucky as Tutu, with her good retirement plan, devoted caretaker, and TempurPedic adjustable memoryfoam bed. Tutu is the exception that proves the tragic rule. Because this ever-growing geriatric army reminds us of our own mortality, we push them into the shadows. Most elderly women (our gender represents the distinct majority of elderfolk) end up in overcrowded nursing homes, waiting in agonizing stasis.
By not talking about death with our loved ones, not being clear through advanced directives, do not resuscitate orders, and funeral plans, we are directly contributing to this future . . . and a rather bleak present, at that. Rather than engage in larger societal discussions about dignified ways for the terminally ill to end their lives, we accept intolerable cases like that of Angelita, a widow in Oakland who covered her head with a plastic bag because the arthritic pain of her gnarled joints was too much to bear. Or that of Victor in Los Angeles, who hung himself from the rafters of his apartment after his third unsuccessful round of chemotherapy, leaving his son to discover his body. Or the countless bodies with decubitus ulcers, more painful for me to care for than even babies or suicides. When these bodies come into the funeral home, I can only offer my sympathy to their living relatives, and promise to work to ensure that more people are not robbed of a dignified death by a culture of silence.
Even with the knowledge that they may die a slow, grueling death, many people still wish to remain kept alive at all costs. Larry Ellison, the third wealthiest man in America, has sunk millions of dollars into research aimed at extending life, because, he says, "Death makes me very angry. It doesn't make sense to me." Ellison has made death his enemy and believes that we should expand our arsenal of medical technology to end it altogether.
It is no surprise that the people trying so frantically to extend our lifespans are almost entirely rich, white men. Men who have lived lives of systematic privilege, and believe that privilege should extend indefinitely. I even went on a date with one of them, a PhD candidate in computational biology at the University of Southern California. Isaac started his graduate career in physics, but made the switch once he discovered that, biologically, man does not have to age. Perhaps "discovered" is too strong a word. "I had the idea that, using the principles of physics and biology, we can engineer and maintain a state of indefinite youth. But when I realized that there were other people already working on it, I was almost like, fuck it," Isaac explained to me over our organic chicken sandwiches, revealing not a trace of irony.
Though he had seriously pursued rock stardom and considered writing a great novel, Isaac now waxed poetic on mitochondria and cell death, and the idea of slowing the aging process to a snail's pace. But I was ready for him. "There is already overpopulation," I said. "So much poverty and destruction, we don't have the resources to take care of the people we already have on Earth, forget everyone living forever! And there will still be death by accident. It will just be even more tragic for someone who is supposed to live until 300 to die at 22."
Even with the knowledge that they may die a slow, grueling death, many people still wish to remain kept alive at all costs
Isaac was entirely unmoved. "This isn't for other people," he explained. "This is for me. I'm terrified at the thought of my body decaying. I don't want to die. I want to live forever."
Unsurprisingly, I completely disagree with Isaac. I see death as a good thing. Death might appear to destroy the meaning in our lives, but in fact it is the very source of our creativity. As Kafka said, "The meaning of life is that it ends." Death is the engine that keeps us running, giving us the motivation to achieve, learn, love, and create. Philosophers have proclaimed this for thousands of years just as vehemently as we insist upon ignoring it generation after generation. Isaac was getting his PhD, exploring the boundaries of science, making music because of the inspiration death provided. If he lived forever, chances are he would be rendered boring, listless, and unmotivated, robbed of life's richness by dull routine. The great achievements of humanity were born out of the deadlines imposed by death. He didn't seem to realize the fire beneath his ass was mortality — the very thing he was attempting to defeat.
The morning I got the call about Tutu's death, I was in L.A. at a crematory, labeling boxes of ashes. After almost a year driving the body van, I had recently moved to a job at a mortuary, running their local office. I was now working with families and coordinating funerals and cremations with doctors, the coroner's office, the county death certificate office. The phone rang, with my mother's voice on the other end: "Valerie just called. She's hysterical. She said Tutu's not breathing. I think she's dead. I used to know what to do, but now I don't. I don't know what to do."
The remainder of my morning was spent on the phone with family members and the funeral home. It was exactly the same thing I did at work every day, except this was my grandmother, the woman who had lived a block away when I was growing up, who had put me through college and mortuary school, and who called me Caitipie.
While they waited for the morticians to arrive, Valerie laid Tutu's corpse out on her bed and dressed her body in a green cashmere sweater and a colorful scarf. My mother texted me a picture. "Here's Tutu," it read. Even through the phone, I could tell Tutu looked more peaceful than she had in years. Her face was no longer screwed up in confusion, struggling to understand the rules of the world around her. Tutu's mouth hung open and her face blanched white, but she was a beautiful shell. A relic of the woman she once was. I still treasure this picture.
On my flight to Hawai'i that afternoon I had one of those somnial visions that live between dream and nightmare. I was at the funeral home to see Tutu, and I was led into a room where her emaciated body lay in a glass coffin. Her face was decomposed, bloated and black. She had been embalmed, but something had gone horribly wrong. "Is she to your liking?" the funeral director asked. "My God, no! She isn't!" I cried, and grabbed a sheet to cover her. I had told them not to embalm her, and they had done it anyway.

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