Die Wise: A Manifesto for Sanity and Soul

by Stephen Jenkinson

The culture that spawned, educated, trained, subsidized, and employs us now binds us to the belief that knowing that you will die is as obvious and unworthy as another day at the office, but that knowing that you are dying is itself a death-dealing, suffering-engendering monstrosity that any and all have the right to withdraw from.

When people defend the right of the patient not to know that he or she is dying, and when people defend the right of parents to forbid their dying child to know that he or she is dying, they are without saying so buying in bulk the conviction that there is no merit, no benefit, no necessity, no moral obligation to know that you are dying, because there is no good in it. There is only more suffering in it.

When the time comes, most of those same people seem to hope for a quiet death, a dignified death, a painless death, a peaceful death. The dilemma for them and for me is that, being the children of a death-phobic culture, a quiet, dignified, painless, peaceful death is mostly a fantasy for us, because the business of dying itself is a torment, an affliction, a victimization, and a venal injustice.

If you begin by believing that dying is traumatic, the wheel of sedative salvation is already in motion.

Her husband was trying to die now in spite of, maybe because of, what we had done and were doing for him. What we probably shouldn’t be doing, I asked her to consider, was turning away from the results of us having done all we could do when it finally got so difficult, so unclear.

In practice terminal sedation is invoked to solve the problem of family impotence in the face of the intractable suffering of a dying loved one and caregiver impotence in the face of escalating pain when the Quality of Life scores are low and time continues to pass. It is invoked to solve the problem of dying in a death-phobic culture by limiting what dying asks of the dying person. It is the death-phobic culture’s solution to itself for dying people, meaning that it leaves unchallenged those things driving dying people to suicide while claiming to solve the problems that arise from extended dying.

Dying people, most of them in my experience, are heartbroken people who don’t know any longer, if they ever knew, how to be heartbroken. Their hearts were broken by the news of their disease and by how their citizenship in the Land of the Living slipped a little at a time without them having a vote on whether or how that would happen.

Their hearts were broken by the treatment options offered to them and by the outcomes of those treatments. They were broken by the confusion, turmoil, and quiet distance-making that befell their families, and they were broken by their own lives having come this. The answer a death-phobic culture has to the heartbrokenness of dying people is less heart, less brokenness.

That is what sedation and antidepressants are designed for, to compromise dying people’s capacity to suffer. This compromise is their great victory, to ratchet down sufferin...

There is such a thing as knowing how to b...

courtesy in the face of suffering is the broken heart capably broken.

Dying people are heartbroken because they are dying, surely, but much more so because they are our dying people, dying among us in a place that doesn’t believe in what is happening to them, in a place that doesn’t know what to do in the wake of what it has done, in a place bereft of the deep courtesy of the heart in times of trouble.

Euthanasia is not sanity in the face of madness. It is our particular madness’s prescription for sanity.

“I can’t go on” and “I’ll go on” are both true.

Living doesn’t always require the ability to live, or the willingness to, and dying isn’t the collapse of that ability or that willingness.

I have had the uncommon opportunity to sit in the middle of other peoples’ lives and see many of the truest things well before it is my turn to see them in my own experience.

Workers and patients alike take their cues not from guided meditation or from wizened elders long initiated in the ebbing of life but from a dreadful culturally driven understanding of what dying is and means, and what it does to people, and what should be done about it.

Most people, if the truth can be borne, die in a manner akin to the dying they have seen before their own, according to how they lived with those examples. They will die either in the centripetal sway of the deaths they’ve heard of or been witness to, which are often some form of “bad,” or they will die in some kind of headlong flight away from those examples toward a more personalized nightmare. The

I would tell you instead that there are ten thousand ways at least of not dying, and I have seen each of them, many times. The ten thousand ways of not dying are where the repertoire of personal style and snowflake uniqueness proliferates. We could say that almost everyone dying in a death-phobic culture, give or take, has his or her own way of not dying.

That is what I have seen, every day, on the job. That “not dying” is what gives almost everyone in the palliative care field work, and supporting that “not dying” is what exhausts the compassion and devotion that they bring to it. That is where the requests for a survival strategy come from.

More often than not, family members are relieved when we stop coming to their door or their mind, our faces and voices being harbingers and reminders both of sorrow and amnesia-worthy times.

So let’s wonder about this. You are a nurse working in a fairly large tertiary care facility in a small urban center. You are working on a ward that has some young patients. Your community is not large enough to warrant an institution specialized in pediatric care, nor is it large enough to warrant any kind of palliative care ward. It is the end of a typically long shift, at the end of a typically long work week. You have enough seniority to have escaped the night shift, but not enough to get you on days, so you are getting off work some time before midnight. You love what you do a lot of the time, you put up with the rest, and generally you are glad to be able to work at something you can believe in. Before writing your chart notes, you pass by each of the patient rooms you are responsible for. It has been a quiet night, thankfully, and you aren’t expecting much, so you have to stop and double back at the second to last door in the hall, the semi-private room on your left that for the moment has an empty bed on one side and a terminally ill eight-year-old girl from a small town on the other. She’d been admitted two days ago to be treated for dehydration and weight loss, and was waiting now to be stable enough to be discharged home again. Standing quietly at the doorway you can see in the half light from the hall the silhouette of that terminally ill eight-year-old girl, sitting on the edge of her bed, her back to you, staring out the window, the lights of the small parkin...

When I tell a story like that, and when I ask the question, “Now, what is your job?” the gears of good intent are stripped, and the simple striving for simple goodness has no purchase.

What is the truth that this girl and everyone else in her boat deserve? Is the truth that our vast med-tech arsenal isn’t vast enough, and never will be, to prevent what is happening from happening? Is it that our understanding of life doesn’t include our life ending? Is the truth that no one believes that a dying eight-year-old girl is having whatever is usually meant by “a full life”? Is it that she is proof positive that life is arbitrary, chaotic, random mayhem interrupted by seductive periods of nothing much happening? Is the truth that her parents don’t believe in what is happening to her, and don’t believe in any ability she might have to carry the knowledge of what is happening to her, and don’t believe that she can be a child and be dying at the same time? Is it that she will be lost to them, that someday not too long from now she’ll be home movies and teddy bears and a room upstairs too hard to visit, that she’ll be mostly past tense? What is the truth that is this eight-year-old girl’s right? What truth do the rest of us think we know?

Drugs and the acquired skill of pain control by physicians have gone far to guarantee that most people will not die addled by pain, but it hasn’t delivered sorrow-free or suffering-free dying.

I once heard a brilliant teacher say, “Suffering is the currency of stinginess.”

Suffering for most of us comes from not getting what we need and from not needing what we get, from the silent and purposeless void that opens up between what becomes of us and what we mean to become. The solution that so many conjure for themselves is to retreat into a kind of small “b” Buddhism, where striving is eschewed, where desire is demonized, where wanting for things to work out is the problem in a world that seldom works out, where your expectations of your people and your life are reigned in and minimized to the point where the disappointments—the sufferings—are minimal too.

This teacher saw it differently, I think. Suffering doesn’t come from having been born,

comes from an unwillingness in this culture to recognize how on the take we have been through the entire course of our lives here, how willing and able we are to wring from the world all we desire and require from...

To most of us the world is not alive in the way that we are alive, and the world doesn’t deserve the consideration t...

We worship in the Temple of Want, and the whole world—not just our small part of it—is there for the satisfaction of that want, just as most of our marriages and friendships are turned into need-gratification machines. When you worship in the Temple of Want your death is an insult, the ultimate, arbitrary frustration of your right to have things go as you deserve until you decide otherwise. The refusal to re...

If you have eaten today, as I have, be you vegetarian or vegan or what, a good number of living things of the world have died to keep you and me alive. Do the math on how many things have died to keep you and those you love alive through the course of your uneven, striving, care-worn lives—not just the things you have eaten, but all the consumption that has occurred in the name of delivering to you what you usually think of as the basic entitlement of living here and now, and all the consumption done in your pursuit of comfort—and you can have some feel for the enorm...

How many of us are willing for our death—not our successes or our surpluses or our conquests or our charities, or our good intent or our desire to be benign and take only memories and leave things pretty much as we found them, but our death—to be the occasion for something else to live?

How many of us die in a way that recognizes the extravagant debt that we have piled up by living as we have done? For how many of us is our death not the last violation of our personal volition but instead some just payment toward the debt we owe to what gave us life?

So many people I worked with died with the grudge of being owed something by life that they now won’t live to collect on. Their deaths were a theft and betrayal and rip-off for them, and their families and friends and communities all inherited the poverty, the stinginess, of that belligerent wound.

“Remembered happiness is agony,” wrote the American poet Donald Hall in the wake of his wife’s death. “So is remembered agony.”

These are the sufferings which are beggared and misapprehended and sedated as “existential death anxiety at the end of life,” which are psychologized and counseled as “trauma of separation and loss.” We cannot, though nothing seems compelling enough to make us see it, contain, control, limit, treat, anesthetize, or analyze that suffering to the point where dying people do not suffer it, and our continued impoverished take on what is happening when dying people suffer deepens and extends their suffering. The enormous use of sedation on dying people ploughs them under to the point where those of us in attendance can see no further evidence of suffering, and here we can say, “Mission accomplished.”

The problem, if we have to use the word, is in the eye. It is in the seeing, not in what is seen.

Most of the solutions we have for people’s suffering at the end of their lives are rooted in a grudge match with life and with the body. They serve the conviction that people shouldn’t have to suffer, and so the headlong pursuit is for an end to suffering. When this pursuit fails, and it almost always does, the next best solution is to limit or end the awareness of suffering, by resorting to antidepressants and sedatives. We should stop long enough to ask one of the dumb, simple questions that are gold at a time like this: Will—not should—will our people inevitably suffer as their lives end? If we answer “Yes,” then we need a second question: Are they suffering because they are dying? If we answer “Yes,” this is reflex and not contemplation.

The dilemma for nurses and for most palliative care workers is that the dying people they are trying to care for do not in the early and middle stages of being in palliative care believe that they are dying. How can you proceed with a plan of care predicated on the fact that the patient is dying with a patient who is as far as they are concerned not dying? You become the purveyor of comfort instead.

And you wait for dying people to figure out for themselves that they are dying, or you wait for them to crack.

Many workers bide their time with supportive gestures, encouraging talk, hopeful suggestions about what could be, while in the team meetings the rest of the story—the terminal part—is routinely told.

any encounter you may have had with someone who refused comfort or was unable to recognize or experience comfort might persuade you that it is indeed a skill.

What is intended to comfort you will most likely only do so if it resembles what has comforted you in the past.

What comforts is what is familiar.

Tourism is comfort provision,

How do you comfort dying people about their dying?

Most friends and family of dying people, most paid and volunteer caregivers of dying people, don’t comfort dying people about their dying. They realize early on that they don’t have much to say about dying that can, without risk of offense or disquiet, comfort anyone in the death room, not really. So they move on to topics that stand a greater chance of being comforting. They talk about what can be done instead of what cannot be done, of what is pleasant or positive or life affirming.

She’d no words for it. It was the same after World War I. Nothing like it had ever happened before. They had no words for it either.

By less dying I mean less awareness, less presence, less evidence, less to do.