Let's talk about dying

At 88 and ailing, I refuse to live at any cost. I only hope that when the time comes, I'll have the courage to act

Published December 27, 2012 1:00AM (EST)

 A photo of the author, circa 1982.
A photo of the author, circa 1982.

“It’s better than the alternative, isn’t it?” Words spoken repeatedly when, during the course of a research project on aging, I asked people for their thoughts about the new longevity and their own aging. Sometimes it was said with a shrug of resignation, more often as an unquestioning statement – a certainty that living is better than dying. Each time I heard it, I wanted to ask, "Is it?" Often I gave in to the impulse, which almost always begot a confused and startled response: "You mean you think it's better to die?"

I’ve thought about that question many times in the years since then, and my answer today is an even more resonant, “Yes.” It isn't that I'm so eager to die, but I can't help thinking about how destructive our fear of death is -- how it compels us to live, even when "living" may be little more than breathing; how we have made living, just to be alive, the unqualified objective. For me, that’s quite simply not enough. No, that’s not right. It isn’t “simple” at all. But I do have a concrete plan to end my life when I decide it’s time – and the tools to implement it. Will I have the courage to do it?

I can almost hear some people shout, “Courage? Suicide is cowardice, not courage.” To which I can only ask: Does it take courage to live as my now-deceased husband did -- a 10-year slide into increasing dementia, so that by the time he died, from a fall that cracked his ribs and led to pneumonia, there was nothing left but a body that needed constant care? Couldn’t we just as easily call it cowardice?

At 88-going-on-89 and not in great health, what’s cowardly about my deciding to turn out the lights before putting my family through the same pain they’ve already lived through with their father and grandfather? What’s courageous about spending our children’s inheritance just so we can live one more month, one more year? Is it courage or cowardice to insist on staying alive at enormous social cost – 27.4 percent of the Medicare budget spent in the last year of life – while so many children in our nation go hungry and without medical care? Is it cowardice to decide not to live with the pain of an ever-diminishing self -- a body that’s always reminding us it’s there, a mind that forgets what it wants us to remember?

I ask my doctor to give me a prescription for pills that will make my death easy. He thinks about it, and then with a look I can’t read -- sheepishness? regret? – he says, “Sorry, I can’t do it.” Yes, I know there’s a law in California, as in most of the country, against assisted suicide. But when I push him, that’s not the reason he gives. Instead he tells me he’s spent his life saving lives, not taking them. I ask, “Did you ever wonder whether you were doing your patient a favor?” He sidesteps the question, and says, “Well, I don’t think you’re sick enough to die.” How does he know what’s “sick enough,” what it feels like to live in my failing body and mind?

I assure him that I don’t plan to take my life immediately; I only want to be in control of when it happens, to know I won’t have to leave it to people like him to make a decision that should be mine. “Why,” I ask, “do I have the right to make choices at every life stage until the last one? Why does an adolescent have the right to decide whether to continue in high school or drop out, to go to college or get a job? Why does an adult have the right to marry or stay single, to have children or remain childless, to retire at 65 or continue to work? Yet, I do not have the right to die.” But this time I can read his reaction, and I know the conversation is over, that more words are futile.

Still, I can’t let it go, so when I get home I send him a note that includes the statistics on physician-assisted suicide in Oregon – the first of three states to have legalized the practice and the only one that has a 15-year history to report. Those who opposed the law argued that the state would be swamped with suicides. I couldn’t imagine why that would trouble them – still can’t. But in truth, I didn’t expect that a decade and a half after the inauguration of the Death With Dignity Act, state health records would show only 935 prescriptions written for men and women who asked for drugs to allow them to take their own lives. And of those, only 596 actually took the pills. Last year alone – 2011 – just half of the 114 people who received such prescriptions used them.

My doctor sends back a brief note telling me he’s impressed with the numbers, but apparently not enough to accede to my request since we never talk about it again. More important, what do those numbers tell us? Why do so many people who ask for help in hastening their death fail to use the medication when they have it? The answer, I believe, lies in the word ambivalence -- a reality of our internal life Freud spoke of long ago. In my own inner world, my insistence that I want to die when I decide it’s time lies right alongside my contrary feelings about leaving this world, about never again seeing the people I love, never again writing another sentence.

Years before her death, Susan Sontag, a brilliant, accomplished woman whose words were always brimming with clarity and unflinching honesty, wrote of death as "an obscene mystery, the ultimate affront, the thing that cannot be controlled. It can only be denied." A denial she lived out to the last moments of her life when she insisted on pursuing aggressive treatments that her doctors said were “medically futile.” She was “not interested in the quality of life,” her son wrote after her death; she wanted only “to live no matter how terrible her suffering.”

Tears stung my eyes when I read those words, tears for this woman I had so admired. And I thought once again: courage or cowardice? Which do we call her willingness to submit to torture just to live another day, another week, another month? Is death, to use her words, “the ultimate affront . . . only to be denied?” Is there a line between courage and cowardice, or do they inevitably coexist? She had, after all, battled death to a temporary standstill twice before. Why shouldn't she try to do it again? How much of a chance justifies continuing the fight: 5 percent? 1 percent? At what point is the chance so small that it's not worth it.

I don’t pretend to know the answer for others, but I’m sure I know it for myself. My big question is only: Will I be able to translate that certainty into action? Or will I find – as has happened to so many others -- that each crossroad I come to doesn't feel quite bad enough until I've crossed over the line to that place where I'm no longer capable of making the decision? We’ll know the answer only when I can quell my cowardly fears enough to act. Not fear of death but of the process of dying -- the failure of my brain if I wait until I can no longer make the decision; the failure of the makeshift assortment of medications on which I must rely because this society says it’s illegal to take my own life, or for anyone to help me do it. Why at this advanced stage of old age do I have to add to my anxieties because we have neither social policy nor a culture that permits us to die when we say, “I’ve had enough”?

I write to a friend with whom I've been discussing these issues for some time and who's more on the side of fighting for every day of life than I am. "I don't think I'd ever give up the fight to live," he writes. "It's either that or nothingness, and who can tolerate nothingness? I simply can't imagine myself not being, it's impossible to conceive. It isn't just denial of death, it's an affirmation of life."

His reply puzzles me. How can it be an affirmation of life when someone is in constant pain, when the mind is no longer fully functional, when the body can't do for itself the basic things necessary to sustain life? True, I’m not there yet, but I know it’s coming. Why do I have to wait for that? What’s life-affirming about needing to have someone in my house to do the ordinary tasks of daily life? Or spending my last days in a nursing home? Is it affirming life or fearing death that drives us to submit to every indignity of old age, to fight for every breath?

"I actually don't understand what you're talking about," I write back. "Doesn't the quality of life mean something? If I'm tired and weak and worn out and hurting both physically and mentally, why would the idea of nothingness fill me with such anxiety. Why wouldn't it feel like a relief?"

He replies, "Okay, so for you the quality of life is what counts. But where do you draw the line? How terrible does life have to be to exchange it for eternal nothingness? If you can deal with that nothingness, you're a better man (pardon the gender confusion) than I am."

Then, in a postscript the next day, he writes, "I've been thinking about our conversation and, to tell you the truth, I think I'd change places with you if I could. Yours seems the easier road."

Which is easier, which harder? I don't know. What I do know is that death is the great unknown, the mystery we'll never solve and that, if we dare to look it in the face, offers only the terrifying realization of our helplessness. It signals the end – the end of possibility, the end of promise, the end of our very physical being -- and leaves behind only a vast unknowable emptiness.

Does this make life worth living at any cost? Most people say no, adding that their deepest wish is for "a good death," by which they mean one that's quick and painless. Tell any 70-year-old man that a friend died of a heart attack in his sleep, and it will strike both fear and hope in his heart – fear that he could be next; hope that if he is, death will come quickly and painlessly. The worst possibility, people say -- far more frightening than dying itself -- is a lingering death where pain is unremitting or they’re hooked up to machines that keep them alive to no purpose. I have no doubt they mean what they say, but ambivalence reigns in death as well as in life, and when the question arises, so do the fears and the conflicting feelings.

"I know what I want and what I don't want," a 78-year-old man suffering from congestive heart disease says to me. "I've told my family and my doctors: I want them to do what they can, but if they have to put me on machines to keep me alive, I don't want it. I don't want to be in a coma and a vegetable or anything like that unless there's a chance that I could come around and be normal again [emphasis mine]."

And in that "unless" we see his ambivalence. Even when we think we know what we want, our anxiety about it leaves us torn -- are at least wishing it weren’t so. We want to take control of our death, but how can we be sure that we -- or anyone else -- will know when the moment is right? So he hesitates, says "unless" as he tries to foreclose any mistakes, which leaves his doctors without a mandate and his relatives, already wishing to forestall his death, hesitant about making the decision to pull the plug. For who can know with absolute certainty that he'll never "come around and be normal again?”

Ask anyone who has had to make that decision, and you'll hear stories about how hard it is, even from people who are true believers. Ask any physician, and you'll hear tales of family conflict that testify to the difficulty. Speaking of a 76-year-old woman with a long history of diabetes and all the problems that attend that disease, her doctor says, "Her heart was giving out; it happens; there's not much we can do about it at that stage. We brought her back a couple of times, had her on life support, but it was pretty clear, even if she came to again, she wouldn’t make it, and I told the family so.

“It's a hard time for a family, even if they're together on the decision-making, but when there's a difference, it can break your heart and theirs. In this case, the husband said he was ready to pull the plug, but his daughter refused to go along with her father and screamed hysterically, ‘You can’t kill Mom; I won’t let you,’ and swore she’d never forgive him if he gave the order.”

My anger rises as I think about his story. Who was this daughter speaking for -- her mother or herself and whatever unfinished business she might have with her? What gives her the right to threaten her father when she'll go home to her life and family, while he’s left with what may be a long nightmare? Thoughts that are followed almost immediately by a cautionary voice that reminds me to be careful, that I have no right to judge how a person responds in such circumstances. The emotional temperature in a family, rarely fully stable, flares quickly when confronted with hard decisions, none more difficult or painful than the one that asks us to have a hand in the death of a loved one. Is this the time? Should we wait? There could be a miracle; it's happened before. In our fear and denial of death, hope triumphs over reality, and we give over both life and death to the technicians’ machines and the surgeons’ knives.

But what about those who believe in an afterlife where they’ll be welcomed by God, St. Peter -- or whatever hallowed one they pray to – and go off to an eternity of the peace, contentment and comfort that escaped them in life? I'm certain their belief helps them through difficult times, and I have sometimes envied the comfort believers find in their faith. But the evidence suggests that the faithful aren’t any more eager to let death take its course than those lacking in faith.

I think about my own mother – a believer -- who, in the years before she died, complained endlessly that she had lived too long, that she’d had enough, that there was no pleasure and no reason to keep on. "Why doesn't God take me?" she'd ask plaintively before she slipped over the edge and couldn't ask anything anymore. After hearing the same wish every time I visited, I decided she must mean it, and asked, "Mom, would you like me to help you die?" She looked at me angrily. "What, you want to kill me?" "No, I want you to live or die as you see fit, and you keep telling me you want to die. All I'm asking is if you want me to help." "God doesn't need your help,” she proclaimed; “He'll know when it's my time."

In fact, He did need my help. She died of the disease caretakers call "the old people's friend" – pneumonia – but not without an assist from me after I told her doctor to keep her comfortable but not to medicate her. Who, by the way, argued with me, said we can never be sure, that she could have some years left if I allowed them to medicate her. It made no difference to him that those years would be spent bedridden, in diapers, and wholly demented. In the end, he did as I asked, but not without making what was already a difficult decision very much harder.

“One way or another," writes Sherwin Nuland in “How We Die,” "the rescue credo of high-tech medicine wins out as it almost always does.” Recounting the words and feelings as a young physician after resuscitating a dying patient, Nuland continues, “Kneeling on that bed, doing CPR, felt not only pointless, but like I was administering final blows to someone who had already had a hard enough life. Why was I forced to crack this person's ribs? Why couldn't we let the patient die in peace?"

So where am I in all this? The answer is: ambivalent but believing I’ll overcome it when the time comes – perhaps when I finish this article and have nothing left to say. What if I do the deed before it’s absolutely necessary? I shrug at the question, “So what?” I’ll have descended into the nothingness I believe awaits me and maybe for the first time in my life will actually rest in peace. What if I’m wrong about that? Well, I’ve lived a life of many risks with no regrets, and I’m tired.

By Lillian B. Rubin

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Aging Assisted Suicide Life Stories Medicine Nursing Homes Psychology Real Families Right To Die