September 27, 2006: Perspective
with death, learning about life
By Virginia Morris ’81
Virginia Morris ’81 is the author of Talking about Death and How to Care for Aging Parents. She lives in Sag Harbor, N.Y., with her husband and two children.
When I was five months pregnant, my siblings and I returned to our childhood home to care for our father. Prostate cancer had moved into his bones, and he was now fading away, disappearing before our eyes.
He lay in his king-size bed, and we tended to him like new parents. We adjusted his pain medications, arranged and rearranged his pillows, and gave him sips of cool limey water. We smoothed back wisps of white hair, cupped his big hands against our cheeks, and buried our faces in the familiar warmth of his neck.
During those final weeks together, my family cried a lot, but we also laughed and reminisced. With our words, we took my father back to a sailboat rocking over the waves along the coast of Maine, to the pine paths of our lake house, and to the edge of our own pool where his five squealing children would beg him to jump. He always did it the same way: straight down, feet first, holding his nose and puffing out his cheeks, then disappearing until one foot slowly rose from the depths, which brought on a chorus of giggles. We sat on his bed and told him about the people who had called, we laughed at reruns of old TV shows, and we sang silly songs he had taught us on long car rides. (And, I suppose I must confess this here, in the days before he died, my father, Class of ’36, woke from the depths of morphine and cancer to sing “Old Nassau” one last time.)
When our time together was up, we told him he was safe, that we’d be fine, that he’d lived his life well, that we’d take care of our mother, and that we would never, ever, forget him. We told him that he could go. And, so very sadly for us, he did. With one last gurgling breath, my bold, driven, stubborn, gentle father lay back on his pillows and was gone.
Three months later I gave birth to his namesake, Jack. He came from my belly with a huge gasp of air and his naked body was laid on my chest. I put my face to his neck, breathed in deeply, and closed my eyes. A life ended, a life begun. None of it was easy, but I wouldn’t have missed either experience for the world.
What struck me, having these two events juxtaposed like this, was that people had so much advice about delivering a baby — what to eat, how to breathe, what medications to avoid — but they were eerily silent on the subject of death. No advice. No comments. Not a word about it. It was as if by not mentioning it, they could make it go away.
I was still thinking about this inconsistency a few weeks later when I returned to work. I had to finish the last chapters of a book I was writing on aging parents, which meant I had to interview people about death. What I heard were not stories of laughter and tears and reminiscing, but tales of agonizing deaths and lasting regrets. What I heard was, “He wouldn’t have wanted it like that. ... I don’t know how it happened. ... ” And I heard it over and over and over.
Despite any advance directives written or promises made, the vast majority of people die exactly as they don’t want to: hooked to a web of tubes and machines, distanced from those they love, in pain, afraid, and alone. This is obviously horrendous for the patient, but it is also a nightmare for family members and other loved ones, as this is their final gift, their send-off, and it is the setting for their ensuing grief.
I had to find out, Why do we die like this? So once I finished the book on aging, I set out to learn about death.
Most doctors, and the health care system as a whole, are abysmal at dealing with death. But what I discovered, after several years of research, is that we — the loved ones — are largely to blame. We say with confidence that we will “pull the plug” when “it’s time.” We know what we need to do. We won’t let our father/wife/sister/son suffer a long and agonizing death. But standing there, at the bedside of someone we love, with our hearts breaking into a zillion pieces, the decisions are suddenly far more complicated and the emotions far more acute than we ever anticipated. We have no experience, no role models, no preparation for this. And so, in a fog of pain and denial, we gasp, “Do something. Don’t let him die.” We say, “It’s not time. We’re not there. Not yet.”
Medicine has delayed death, but it also has complicated it enormously. These days we are not simply deciding whether to “pull the plug” when all hope is gone. No, more often than not, we are deciding whether to proceed with surgery, antibiotics, transfusions, dialysis, an experimental round of chemo. We are weighing odds and possibilities and unknowns. We are no longer deciding if life is viable; we’re deciding if it is desirable.
And so we wait because we’re not “there,” not yet. But there is no black-and-white line between living and dying, no obvious moment when we should switch tracks from invasive, life-sustaining treatment to comfort care. We wait to be “there,” and in waiting, we end up exactly where we didn’t want to be.
If we are going to help the people we love through this passage so that they find comfort and reassurance in their final days, we need to learn something about how death occurs today — the choices that arise, the possibilities that exist, and the obstacles that frequently stand in the way. We also need to talk about death, to find out what our loved ones mean when they say, “Pull the plug when I’m there,” what they fear, hope for, dread, and believe. What would they find unbearable? What would they find comforting? What do they think about hospice care, experimental procedures, pain? In other words, how do they want us to make decisions when it’s our turn to stand at that bedside?
I wrote a book on death in the hope that people would flip through it — now, while they and their loved ones are still healthy — and they would learn something, anything, that might one day change the way they handle death. But in the process, something astonishing happened.
You might think that a person who spends a lot of time studying death would get depressed. Suicidal, even. But death is an odd thing. Sure, it’s scary at first. It’s unsettling and painful and it makes you cry. You desperately want to think about something else, anything else. For a while, every headache is a tumor; every mole, melanoma; every phone call, a disaster. But then, as you learn more, as you listen to people and cry with them and, yes, even watch them die, you stop worrying so much about death and start living life. Suddenly, it doesn’t matter if cobwebs lace your ceiling or cellulite speckles your thighs. All that matters is that your kids are fine, that you can still call your mom, and that your spouse, despite all his annoying habits, holds you at night.
It sounds corny, I suppose, but it’s true. Death is sad, but it also reminds us of what’s important. It reminds us to love fully and forgive quickly and laugh easily. It reminds us that life is not a trip to some place, but the voyage itself. Learning about death isn’t dangerous or scary. Learning about death teaches us about life.