Die Wise: A Manifesto for Sanity and Soul

by Stephen Jenkinson

Everything we do and don’t do makes a wake, a legion of waves and troughs that pound the shores at the edges of what we mean, grinding away on the periphery of what we know. They go on, after the years in which we lived our individual lives are long passed. If we don’t learn that simple, devastating, and redeeming detail of being alive—that what we do, all the jangle of our declarations and defeats, lasts longer than we ourselves do, that the past isn’t over—then the parade of our days stands to indict much more than it bequeaths. This is something that we have to learn now. Many of us count on our best intent winning the day or getting us off the hook of personal or ecological consequence. It hasn’t, and it won’t.

“Ah look, there’s my life going by, trailing everything I meant and didn’t mean, the end of it clearly in view.”

I saw that as a culture we have a withered psychology of coping and accepting where we might once have had a mythology and a poetry of purposed, meaningful dying. This poverty was the constant companion and chimera of almost every dying person I worked with. I discovered that few wanted to die well, fewer still, wisely. Most didn’t want to die at all, and they spent their dying time refusing to do so.

Dying wise is the Rhythm, the Story, around which human life must swirl.

I am asking all who read this to forego their normal hope for a plan, a grand scheme to fix what’s wrong to kick in after thirty pages. It won’t happen here. That is a big part of why it is the way it is at the end of our lives, this problem-solving reflex. It is that way with most relationships in trouble: We instinctively try harder to do more of what we’ve been doing that got us into trouble, trying to fix what we are hardly willing to learn.

How is it that what seems so inevitable and so natural to us about our lives ending is so foreign to most of the world’s peoples? What is it like, really, to die in our time and place?

Whose death is it, anyway? It is all of our deaths, one death at a time, until our time comes.

DYING WISE IS AN ACT OF LOVE. It carries an abiding faith in life, it carries love for the world, and it asks that same faith and love of those who attend to it when it comes. Dying well is not the end of parenting, but the fullness of parenting, not the end of a marriage, but the last great act of a married life. Dying well is a bequest that you leave to those you love, probably the only thing that in the end will not be eaten by moths, apportioned by lawyers, or bought for quarters in a yard sale. Dying well is the way you could be known by those you won’t live long enough to meet, the way by which they might feel loved by you after you die. DYING WISE IS SPIRITUAL ACTIVISM.

Seeing the end of your life is the birth of your ability to love being alive. It is the cradle of your love of life.

Dying is not what happens to you. Dying is what you do.

Dying is not a time for not dying.

How we die is ripples in the river of life, little signs for others to come; that we die is the shore that the river of life obeys.

That is one of the things that can make dying so hard: looking around and realizing that everything you see, including the poorly built buildings and the questionable souvenirs, will outlast you.

The more you pursue being saved from the drudgery of going through your days, the ordinariness of being around, the venality of physical limitation or vulnerability, the more is taken from the physical world to provide you that salvation and the more remote you will be from what grants you your security. That is an ecological and spiritual fact.

Gone, if it was ever there, is the option of doing little, of under functioning, of opting for nothing when wrestling with illness and death in the presence of a remarkable range of options that doesn’t include doing nothing.

This considerable focus on the body, the treatment of dying as primarily a physical reality, and the preoccupation with pain and symptom, all of it is carried on in broad daylight with the general willingness and compliance of everyone in the treatment stream, usually with the full support and encouragement of everyone who loves the one who is dying.

For an information-flooded, competence-addicted, novelty-enamored culture, any chaos and randomness that carries us off is insulting, unbecoming, and a terror. We all know the stock response: We can’t just stand there and do nothing. Refusing to use all the med-tech options at hand has become tantamount to doing nothing.

But when that receded religious sense meets dying after dying has been reduced to a largely physical, metabolic event—and that is what I saw most working days—the going is very rough for all concerned.

Of all the teaching requests I have received from palliative care organizations over the years, one concern dominates. I have been asked over and over again to teach how to help dying people “find meaning at the end of life.” I am sure this is because people in those organizations are routinely sitting beside dying people and staring with them into the void of what is to be, and they sense the shudder running through all those for whom dying is the end of meaning, the annihilation of meaning, the anti-story. Many of these professionals are working without such a narrative, without the ordering, meaning-making story that a religion can provide. The second most common teaching request I get? “Teach us how to survive doing the work.” This tells me that storylessness is contagious.

They were in that wretched time trying to be the parents they knew they should be, no doubt. No doubt too their beliefs about what happens to you when you die, and after, and what dying is like, and what it does to you now and later, and what you should believe when you are dying, none of them came from anything they knew or learned about dying and death during the course of his long illness. During the time when they could have and should have been learning about dying and death, he was not dying. He was in treatment. None of what they knew or believed came from any hard and fast experience with dying, even though he had been dying for some time. Most of it came from stumbling across dying in the fitful, haunted, death-phobic early years of a new century in a place that knows dying mostly as what happens to your body, not from what dying is and means and asks of you when you are an eight-year-old boy or the parents of one.

The preoccupation with pain and symptoms is not a conspiracy of medicine foisted on an unwilling, unsuspecting public. It speaks to a poverty of options in its philosophy, not its tool kit. It is carried on with the general willingness and compliance of everyone in the treatment stream, with the full support and encouragement of pretty much everyone up and down the line. It is not a deliberate thing, not a decided thing, nor is it something more practitioners would necessarily defend if asked to do so. Practitioners want to believe that the kind of care they provide derives from the convictions and the motivations they bring to the job. But the dicta of the workplace are entrenched, and we have the technology, and technology is more and more dictating to us all how dying should properly be understood and managed.

More and more, medical technology has become—maybe by default, because so many of us have no other—the story of our dying.

The religion of medical technology goes like this: Dying is what we can do about dying. Palliative medicine is a creation of rapid med-tech innovation unaccompanied by any similarly rapid innovative practice wisdom guiding its use, governed by the unimpeachable human-centered conviction that dying is a manageable metabolic even...

Listen carefully to any dying person, and you will find in the early days of their dying that most fear pain above all else. This is their nightmare scenario: a resolute, intractable pain, swelling to a crescendo mainly at night when everyone who could do something about it is asleep, the solitary hell of a pain-filled solitude. So they welcome any promise, any attempt to control that pain and make it livable while they die.

Here is what I have seen, over and over: dying people in the early and middle stages of their dying, still fairly healthy considering everything, their dying no longer unknown, no longer questioned, their symptoms fairly well managed, their pain fairly well controlled, utterly terrified, unspeakably riven by dread, numb when they are not panting with the horror of it, up many hours of the night with a raw, unspeakable, pain-free or pain-managed terror. This makes them prime candidates for sedation or antidepressants. Here’s why: Their terror should have been quelled by having their worst fear managed. Yes. Of course. It should have done.

almost every dying person has had their life extended.

turns out that More Time is almost never its own reward. When something happens that routinely, it stands to reason that by sheer force of exposure most people working in palliative care or in the medical community or in the helping professions could be relied upon to answer well when a dying person asks, “What should I do with my More Time?” But that’s not what happens. The question is rarely asked and very rarely answered to anyone’s satisfaction.

More Time bears no resemblance to anything most people have lived.

More Time is a fantasy of the resumption of a life interrupted.

But More Time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known sh...

For the first time in their lives they will live knowing that they will die f...

There is more death than there has ever been, and for certain more death than there has to be. More days were given to them by others, but more dying they will have to do on their own.

Their families plead for the palliative medicine system to do something and it does, and those families live months and years in the inarticulate, insubstantial purgatory of not knowing any longer how to have a dying person in their midst, with little good guidance on how to do so.

Dying people answer research questionnaires to determine their quality of life, but neither they nor most people around them are willing to ask for quality of death, or advocate for one, or make one, or imagine quality of death

as the last privilege of a dy...

“Well,” he said, “it seems to me that where you come from, everybody wakes up every day expecting to live.”

you begin to die when you see your own death. Your own death: It isn’t something that is prompted by bad health, not necessarily. It is something you can see in another person’s death, or in the death of a star, or the last stubborn falling leaves of November, or in the grayed exoskeleton of a crayfish on the beach of your spring break vacation, or in the proper final withering of every idea you hatched at age fourteen and defended ever since against any evidence to the contrary about what love should mean or do or feel like, or how long it should last, or why.

In a death-phobic culture, palliative care has come to be the kind of care motivated by compassion and concern that masks or conceals dying.

It isn’t dying that really kills you, in other words; it is knowing that you are dying. Knowing, for a culture like ours, is where the real pain and suffering are generated. This is one of our great, mobilized fears, and it prompts the cone of silence that descends whenever dying needs talking through.

We believe that knowing is the beginning of our dying, hence our investment in distraction, in not knowing, in the compassion of the shroud.

Everyone seems to know that everyone’s job is to keep the faith that there is nothing inevitable about the person they love’s terminal diagnosis prevailing.

families seem to know that their first obligation, the ultimate expression of their love for the dying person, is to challenge anyone who proceeds as if that person is dying. Likelihoods are idle speculation. Changes can un-change. Being willing to consider that the gathering evidence of diagnostic precision, that timetables of tested probability and mounting symptoms might, when taken together, require the family to change its thinking is heresy. It is betrayal. It is giving up. And Thou Shalt Not Give Up. One

It is only to say that their training predisposes them to see dying in terms of what they can do about it, not in terms of what dying might ask of them.

Dying is what you do. It is not what is done to you. While the disease process is doing what it is doing, you are doing what you are doing, so the language teaches. This

Fear’s voice will say, “We can’t let that happen. You know what it’ll be like if that happens.” The truth is that you don’t know what it will be like if that happens. The feared thing, almost always, is the thing that hasn’t happened yet. That is where fear lives, in the not yet, the not now, the not me. Fear is full of uninformed anticipation masquerading as heightened awareness. Fear knows enough to mobilize, stir, run, and fight, but it knows next to nothing about the feared thing. Fear is not knowledge.

Most people’s reaction to the news of their death shows clearly that they did not know that this would come to them one day. You can see in many that they feared that this is what was happening to them, but there is nothing in their reaction or in their premorbid way of living that bears the mark of having known this all along.

Because people do not know that they are going to die, because dying is what you do and not what happens to you—and only because of that—it is possible for people not to die. And many, many do not die.

What could this mean, that it is possible not to die? It means that if dying is what you do, it is more than possible that you will not do it. You may be afraid to do it. You may refuse to do it. You may not know how to do it. You may not know that it is something you do instead of something that happens to you. Any or all of these together could well end up in you not dying. Your metabolism will cease of course, and so will mine. Our hearts will slow and ebb and flutter and go quiet altogether. Our kidneys, spleens, and livers will no longer clear our systems, and our bodies will go septic and shut down. Our lungs will heave shallowly and then barely and then not at all. Even our brains, because of all this, will slowly stop knowing that this is what is happening. But this is our body doing what it knows how to do when it cannot continue as it once did. This is our body being itself at the end of its days, but we are doing none of it. Most of this will happen regardless of what we do or refuse to do. All of this taken together is not what dying is. It is what our bodies do at the end of our bodies’ lives. It is not what we are doing. It is at most a negligible part of what dying is. The rest—what this book is about—might be done, and it might not be done. It is more than possible not to do it. Most of the people I have worked with in the death trade have, at least at the outset, refused to do it. They do not spend their dying time dying. They spend it—I mean spend it, her...

Seeing death as a pacifying victimization, as an affliction from the great beyond, as just desserts from an unjust life or, as it is often talked about these days in some religious circles, a nonevent, an illusion, an automatic transition: None of this comes from what dying is like or from knowing death well. All of it comes from our kind of death. It comes from our refusal to die, from enthroning sudden death as the savior of our last days.

Why is it so hard to die? Why do we have to learn how to do it? Why, if dying is so common, is it so much a mysterious, troubling thing among us?