Saturday, May 28, 2016

258 candles-days 82-95

Yet again I've found myself caught up in the string of requirements and responsibilities, and as a result haven't been as attentive to this countdown as I should. Besides the demands of my profession, I've been at work on a sermon, delivered two weeks ago, and a wedding service, done one week ago. I'm posting the sermon below because it relates to the theme of this series: to care for others in this period of disturbing political me-firstism. 

A Good Death
A Sermon Delivered to Unitarian Church North
May 15, 2016

Almost everyone knows the word “hospice” by now. It’s an early 19th century French word that has gone from its original meaning of a way-station to our current usage as shorthand for a profession that provides comfort and dignity to people who are dying.
It stands to reason almost everyone must die in somewhat the same way. Wouldn’t you think? The Population ReferenceBureau, whose unenviable task it is to calculate these sorts of things, has determined that nearly one hundred eight billion people have been born and died in the six million years science estimates people have been crawling and hobbling around on the Earth. They have determined, through statistics, mathematics, algorithms, and observation, that there is a one hundred percent certainty that if you are born, you will die. That’s the trick about life: none of us gets out alive.

Amazingly, there is still some variation. There are as many unique ways to die as there are to live. Some of us die alone. Some of us surrounded. Some of us die by violence, some by our own hand, some by accident, and some by the slow accrual of time and entropy. Each of our deaths are as unique as our fingerprints or our dreams.

We long, all of us, once we admit to ourselves we will die, for a good death.  What is that? Well, that’s up to you. I have a friend who once expressed the wish that a nuclear bomb would take him out, squarely to the top of his head. He wanted to die fast and easy, having no wish to live in a post-apocalyptic anything or to watch his loved ones and friends die agonizing deaths. Another friend once said, if he contracted cancer or AIDS or something incurable, he planned to take out a platinum credit card and use it to travel around the world, succumbing just as the mail was delivering the bill to his home. I’m pretty certain credit card companies anticipate this kind of thing.

I used to think I knew how I wanted to die. I was once hiking the Appalachian Trail through New England and in New Hampshire I was on Mount Washington in the White Mountains. It’s a high, rugged mountain where erratic weather—snowstorms in August, winds in excess of a hundred miles an hour out of nowhere—is the norm. It collects at its alpine apex an annual average of nearly 100 inches of rain and snowmelt, so it is covered with magnificent waterfalls and ravines fed by runoff from the Lakes of the Clouds.

I was at one such ravine on the Ammonoosuc River on the western slope, lying on a hump of dirt and grass that jutted out above the cataract and afforded an excellent view downward toward Vermont and lower Canada. I was taking a photo of my hiking partner who had straddled another, higher rock jutting out from that hump when I felt the rock I had planted my foot against suddenly give way and I slid. In my mind I went shooting off the hump and straight down the ravine. It was a long way down and I saw the trees and brush and birds in glorious detail. My feet struck slick boulders just before they accordioned to my chin. In reality I’d only slid about three feet, but it was enough. And in my mind, just as I’d hit those rocks I thought, “This is a fine death.”

I’m not so certain now that’s how I’d like to go. Working with hospice patients I often talk about good ways to die. Some would have liked to die immediately and unknowingly, like from a bullet or getting hit by a bus. Others are glad to have had the opportunity to talk with relatives they hadn’t connected with in some cases for decades. Still others, of course, curse the length of time it can take a sick person to die. Many people lose their faith in a personal, loving God when they find their breathing and cognition outlasting, sometimes by months or years, their ability to move without pain or to communicate simple things like “eat,” “sleep,” “toilet.”

I suspect that my mother, who died six years ago next month, had what most of society would call a good death. She had breast cancer the last fifteen years of her life, and those were hard years, but that isn’t what killed her. No, my dad woke up one morning to find she wasn’t in the bed next to him but face down on the floor in the living room. Mom had a habit of getting up in the night to sit in her recliner for a few hours’ respite after her back began aching. The coroner ruled that she had stood up from her chair, maybe a little too quickly, and had a heart attack. She was dead, he claimed, before she hit the floor.

Sometimes I describe hers as a good death because in those final fifteen years our family and her friends had the opportunity to see her and speak with her, reminisce with her, and tell her what she meant to us. Sometimes people can’t believe that I’m as comfortable with her death as I say I am, but there was nothing left between us, no words unspoken, no undelivered messages. I had loved her, she had loved me, and we let one another know how deeply we felt, and then she died. There’s another sense too in which it was a good death and that’s the lengths to which I discovered, to my surprise and probably his too, how good a caregiver my father could be to her. I’ll never forget the image of him, during my visit the winter before she died, dressing her for an outing in the cold, adjusting the scarf around her neck just so and bundling the top button of her coat gently under the scarf so the wind wouldn’t whip under it.

We all want, whether we admit to it or maybe more importantly when we do not, a death that’s good, whether it’s “good” in terms of its painlessness, its ease, its meaningfulness, or its message. But the truth is no one can give us that. Especially not in the way most of us mean it. For most of us, a good death means we die painlessly, unknowingly, in our sleep. Without prolonged illness, without having felt pain, without even knowing we were ill.

That happens shockingly rarely, the percentage hovering around 4 or 5. This means of every hundred people, four or five will die in such a way. To give you a better idea of this, imagine one hundred of us are qualified to apply to Princeton—top-notch grades, excellent application essay, impressive recommendations, sound extracurricular and community activities. All one hundred of us are capable and deserving. Five of us will get in.

If it’s any consolation, neither will most of us die in a violent manner, not from terrorist attacks or stabbings or violent accidents, shark attacks, lightning strikes, air crashes, radiation poisoning, falling through the ice, or someone intentionally dropping an electric fan into our bath. Most of us will die in the hospital or at home—in an interesting turn, after a century of many if not most people dying in hospitals, often separated from family and friends, there is a resurgence in the way most people used to die, at home in their bed—of the complications from disease, usually heart disease or cancer.

How will we die? Well, again, there are at least as many variations on the act of dying as there are in living, but there are characteristics that can be called constants in the same way I suppose that school education is a constant. That is, some of us go through twenty or more years of schooling, some no more than sixteen, some twelve, some six or seven, and some have no formal schooling at all. But even by its absence, we know that schooling is common.

There’s a booklet I like to give to families when we admit someone into hospice called Gone from My Sight: The Dying Experience. It was published in 1986 by Barbara Karnes, a hospice nurse, and has gone through many revisions. It presents what most people experience during their final days in a non-sensationalistic, understandable manner, using plain language. I caution patients and their families there is no timetable to death. The periods Karnes refers to are a general outline of when some things happen. They may not happen at that time. They may not happen in that order. They may not happen at all.

Karnes characterizes One to Three Months Prior to Death as a period of Withdrawal. It’s not unusual for those first glimmers of our actual mortality—“This is it”—to send us into a spiral of separation from everyone and everything else. We may become irritable or serene. We are slipping into a cocoon, and there’s no room for children, grandchildren, or other loved ones. We’ll peep out at them, even enjoy their presence for a while, but really we’re focused on ourselves.

We sleep more often and longer. Little naps here and there, several a day. It may seem as if we’re bored but our interior life has taken on great interest. We don’t feel the need to communicate with other people. Karnes writes, “Words lose their importance; touch and wordlessness take on more meaning.”

We may stop eating. This is often very hard for families to understand or accept; in many cultures there’s still a certainty that so long as we’re eating, we’re alive. “If only she’d eat she’d feel better.” But nothing tastes good. Or only certain things—sourballs, ice cream, bacon, citruses—taste good. Meat is usually the first to go, and then other hard-to-digest food like vegetables. We’ll stick with soft foods longest, but eventually we’ll stop eating those too.

At One to Two Weeks, people begin to show signs of disorientation. We sleep even more often. Longer periods, deeper naps. It’s almost like hibernation, some patients say. We may talk to people who aren’t there and about events no one recognizes. We start picking at imaginary threads or hairs, our arms or legs seem agitated and move without our volition.

Our blood pressure goes down, our pulse goes up. Or it may seem to stop altogether. We sweat a lot more and when people hug us they remark afterward how clammy we feel. We want the windows open as we’re burning up or more blankets because we just can’t get warm. Our skin changes color, we seem pale and flushed, blue like we’re freezing. Our extremities are often blue because the heart is no longer pumping the way it used to and blood can’t reach there. It might be harder to breathe so we need oxygen. We might breathe faster, like we’re always racing. We’ll hack and cough but nothing comes up.Finally, at One to Two Days and in the Final Hours Before Death, we may have a surge of energy, what hospice workers call a “spike.” We’ll sit up all night talking, drinking, and laughing with friends who’ve come by. We want a plate of fried potatoes and a rare steak and we eat every bite. Loved ones look at this and say, “He’s over the worst,” and we are, but not in the way they mean it.

We get more restless but take to our bed. We collapse. Breathing is slower, less regular, sometimes stopping altogether for nearly a minute. We sound congested, loudly congested, the way we did as kids with a croupy cough. Our eyes are open but we don’t see anything or recognize anyone. We might respond to sounds or voices or movements but we can’t identify them and we’ve stopped responding at all, except for an occasional grunt or moan. We aren’t in pain, usually, it’s just the air moving around our lungs and throat.

Our hands and feet turn purple; the heart can’t pump blood that far anymore. Joints become blotchy and because we’re lying down blood starts to pool on the underside of our arms and legs, our backs, our buttocks. We stop responding altogether.

In the Final Minutes Before Death, there is often the sort of gasping you see when fish are out of water—it’s called Cheyne-Stokes Breathing—and we can’t be awakened or roused. This is often the hardest for family present because they can see the end and they want to be there but this experience can last for hours. Sometimes, when they can’t hold off going to the bathroom any longer, we take that opportunity we’re alone to finally just stop.

We all die and we all die in our own time. It may sound sad and it may seem sad but it isn’t to the person undergoing it. It’s just what they’re going through and they’re beyond any consideration of whether they want to do it.

I’d like to read to you the narrative I wrote after the death of one of my patients to help make this as personable as possible.

I visited a patient whose decline was dramatic after a period of relative energy. Inside a week she had gone from sitting in a wheelchair and actively participating in life to being bed-bound and sleeping nearly all the time. She was unconscious when I arrived so I took her hand while the RN who'd got there before I had went through her paces. She said, "I'll be surprised if she lasts the day."

The nurse left about 20 minutes later. We were waiting for one of her daughters to arrive and I said I'd stay with her until she came. But a half hour after the nurse left she became agitated, having difficulty breathing, and opening and closing her eyes without seeing. Her dyspnea was a series of quick, almost urgent, shallow breaths, as if she can't catch it. I talked to her, letting her know I was there with her and she wasn't alone. She could be scared, I said, but I was with her and wouldn't be leaving until she was finished. She lay on her back, swallowing great gulps of nothing. I held her hand more tightly and reminded her of my presence.
There was no great shudder. No death rattle. No final words of wisdom. One moment she was breathing, which I could see from the gentle rise and fall of her chest. Then she stopped. But then she started again. This went on a few times, the shallow intake, the rise, the wheeze out, the fall. Until finally, she stopped. From my seat I could see the flutter of her carotid artery. I watched that pulse slower, until it too stopped. I touched my fingers to it but couldn't be positive if I felt it still or if it was the throb of my own pulse. After about a minute I pressed her eyelids closed and they stayed that way and I stepped out to ask a nurse to check her. 

I have seen other people die, but it was always with the safety of distance. This time I had held her hand and felt her life slow until I couldn't feel it at all. I don't know exactly what I felt. It wasn't fear or anxiety or even relief at its conclusion. What comes nearest I think is humility. I felt humble in the face of what happened, struggling to hold her one hand while she held a plush chipmunk in the other, and keeping the live flower her daughter had placed in her hair from tipping and rolling off her pillow. My entire role came to, "I'm here." There seemed nothing else that needed to be done.

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