After my sister died in March of 2018, I was desperate to make sense of what happened. A close friend of mine recommended I read the book Die Wise by Stephen Jenkinson. I also watched the documentary about him called Griefwalker.
Jenkinson is a Canadian who worked in the “death industry” as a director of palliative care in Toronto’s Mount Sinai Hospital. He has come to understand the perverse incentives that keep dying people alive, which stem from our inability to accept that death really happens. Die Wise helped me understand why my sister received barbaric medical treatment after her cancer diagnosis.
High-tech health care has become an undeclared war on dying itself.
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. Gone is any real questioning of treatment at all. The treatment options are debatable, but treatment is not.
When someone is diagnosed with a chronic illness that could lead to death, modern medicine insists on an immediate intervention that is often aggressive. Doctors may even use military terms against the illness like “hit it hard,” “attack,” and “go on the offense,” which insinuate that your body is a war zone, but even if you win the war, what damage will you body sustain? As I saw with cancer treatment, the destruction is tremendous. Surviving the war leaves you with far less than you had than when you first started, on top of the psychological trauma of wondering when the disease will return.
Because most people want to live, and have never deeply considered the fact that they will one day die, they quickly fall under the spell of the medical industry. Yes, the disease must be “attacked” and my body must be ravaged so I don’t die, because being alive is better. No monetary cost or bodily side effect should serve as an obstacle to “living,” but that living will not be the same as before.
More and more, medical technology has become–maybe by default, because so many of us have no other–the story of our 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 event that should be managed, animated by the root conviction that If you can, you should.
If you get diagnosed with cancer, you must do something, because this is your one life and you need to live it; you need to fight! But now the doctors—the new priests—have you, and you are essentially donating your body to the medical industry. The machines and the tubes and the infusions and the side effects are now a daily feature of your existence. In essence, it’s a completely new life, but the aggressive something that is being done is often Potemkin intervention that merely enriches the doctors while extending your suffering.
What if the doctors, who are financially invested in you receiving treatment to pay their expensive mortgages, student loan bills, and BMW car payments, massage the truth about your true odds, and give you false hope that prevents you from accepting that death is on the near horizon? What if doctors know for a fact that you are dying, and you have practically no chance to survive beyond a few painful years, but refuse to tell you, and instead use mealy-mouthed code words that a family member has to painstakingly decipher as if they were uttered in a foreign language?
Once you give your body over to the doctors, they will mutilate it. They will slice and dice, pump you full of drugs, and then pat you on the hand to say you are doing great when you don’t even recognize the new life you have.
Within the health care regime the language often changes when a patient is tacitly acknowledged to be a dying person. Professionals will start talking with patients and families about “quality, not quantity.” They will talk of “palliative radiation,” of “comfort-giving measures.”
When someone is dying in the movies, a doctor often says, “I’m sorry but nothing else can be done. I recommend you get your affairs in order.” This doesn’t happen in real life. Instead, doctors repeat the word “comfort,” which really means that they want you to be comfortable with dying—but without telling you that you’re dying! They will be more than happy to fill you up with morphine and anti-depressants so you never have to be consciously aware of that fact.
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.
A doctor may not tell you that you’re dying, but your body knows. It can’t continue with “life” as it were, to enjoy the same things and go to work like everything is okay, which is what dying people are encouraged to do. This conflict leads to intense anxiety and terror that a doctor immediately wants to hammer away with psychoactive drugs.
In a culture that hides death, not only with humans but also with the animals we kill to produce our food, there is no secular superstructure or process to understand how we die. We’re at a loss of what to do when it comes to death (we don’t even know what to say to someone who is being affected by it), when death should be in our awareness not long after we’re born.
More Time means more time to live their dying. It means more symptoms, more drugs for the symptoms, more drugs for the side effects of the first drugs, more weakness and diminishment and dependence to go along with more time with the kids or the grandkids, or walks in the park with the dog. That’s not all it means, not necessarily, but More Time almost always means more dying.
More Time almost never looks or feels or goes the way people imagine it will when they are bargaining for it. 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 shadow of the inevitability of their dying. For the first time in their lives they will live knowing that they will die from what afflicts them.
By being given More Time, they have been given more death.
Modern medicine gives the illusion that death—and the pain from death—can be escaped, but instead, doctors merely distribute the pain and suffering over a longer period of time, if not outright increasing it. Medical treatment is a devil’s bargain where you receive more time to live, but at an immense financial, physical, and emotional cost. While I would never tell a friend or relative to just let cancer or heart disease ravage them, they need to be aware that they will still be ravaged, just at a slower pace, while receiving a false sense of hope that life can return to what it was before the disease.
[The patient’s] problem was that he was still alive. Because of the treatment he’d received his life had been extended far beyond what the disease dictated, but he gained that additional life knowing that he would die in the foreseeable future of the disease he was being treated for anyway. He had bargained for months of illness and an hour of death, but instead got an eternity of wakeful agitated, motionless, unremarkable, endless, symptom-riddled, ordinary dying.
Instead of the old nightmare of uncontrolled pain and unexpected death, we have a new nightmare of controlled pain and an unexpected wish to die, a wish that can’t be accounted for by worsening symptoms and can’t be soothed by reassurances that no one will be allowed to suffer. They are suffering. Dying people are suffering a torment we once thought would only come to those in the hour of their death. Now the hour of death is months long, sometimes longer.
The deciding moment is when you become ill. Your body, existing in corrupted flesh due to Adam’s fall, has decided to die. It will always happen before you expect, and you will refuse to believe in your body’s judgment. You will blame all sorts of environmental causes and bad luck, but the body, your flawed biological shell, will win. Treatment is just rearranging the chairs on the deck of the Titanic, and you will suffer mightily before it’s done. By saying this, I’m not advocating for you to abstain from medical treatment, but the costs of treatment must be understood before the disease comes, because when you’re ill, and doctors are dangling the possibility of a successful treatment or “cure” above your head, you will not be able to make a sound decision on what to do.
Dying is a natural thing, and left to its natural self each living thing knows how to die. The body has the genius of a natural thing, and it knows how to obey the accumulation of time, wear and tear, disease and symptoms. It knows how to stop. But med-tech, not in any sense a natural thing, knows how to subvert the way disease and symptoms have of keeping and marking time, and in doing so it subverts the body’s knowledge of how to stop.
You will refuse to listen to your body, to nature, to God’s plan. Besides, how will you really know it’s your time? Is refusing antibiotics for a skin infection that then becomes deadly sepsis what God has in store for you? How do I know God’s will? At what point are we being silly in refusing treatment and at what point are we extending our dying time? These questions and boundaries have to be decided before the disease comes, which means you have to think of your death and pray to God for wisdom while you’re perfectly healthy.
Personally, I don’t believe I would treat cancer that I’m diagnosed with if it’s beyond Stage 2, when it has spread from the original tumor, though to know for sure, I would essentially have to become a doctor myself by being able to decipher medical scans and understand treatment plans and their costs, and the only reason I know of the intricacies of cancer treatment is because of what happened to my sister. With death shoved behind closed doors, most people will not know the truth of how the medical industry handles death until they experience it firsthand, yet the cost of learning that experience is high. Most of you will choose the “cope, hope, and dope” option that the medical industry offers you, and I don’t blame you for that.
…extraordinary energy and vitality given in this culture to the project of not knowing that we are dying, and because of the unhesitating willingness of caregivers of all stripes to collude with this refusal to know through the usually clumsily crafted projects of positive outlook, hopefulness, and live-instead-of-die advocacy, and because the etymology of the verb “to palliate” comes closer to “to conceal, to cloak” than it does to “to help.”
The woman was referred to an outpatient palliative care service without being told what it meant to be in palliative care.
Palliative care is given to patients who are not expected to live. They are given treatments that are meant to reduce pain and increase comfort, but not always: my sister was given both radiation and chemotherapy in her last days at tremendous pain even though, in hindsight, I believe the doctors knew there was little hope in her recovery. Regrettably, it was me who helped persuade my mother and father that we should go ahead with these futile treatments. My sister wanted to live, and I didn’t want her to die, and the doctors didn’t seem wholly pessimistic, but those treatments only made her dying time that much more difficult. The doctors withheld her true odds, and allowed all of us to make the wrong decisions when it came to her final days.
Everyone knows that everyone else is going to die. Each person does not know that he or she are going to die. They do not know they are dying when they are, which is why they need to be told. There are many working in the death trade today who will vehemently defend this not knowing as a fundamental right of all people. This is compassion to them.
You don’t possess the belief that you will one day die. You’re an educated person who knows that all living beings must die, but your own death is so abstract, so off in the distance, that you don’t truly believe it will happen to the extent that it’s worth thinking about now, but by not doing so, you delegate responsibility for your life to a medical industry that has its own interests which only slightly overlap with yours. You will panic when you are diagnosed with an illness, make sure all medical options are explored, and pursue an aggressive treatment plan that takes an immense physical toll on you, and yet you will remain ever so hopeful to extend your living time that you still refuse to accept your death, as proximal as it may seem to the doctors who are treating you.
When Finding Meaning is your hammer, it turns dying into a desperate kind of scavenger hunt, a last-gasp lunge at holding back the tide of Meaninglessness that our cultural poverty on this issue prescribes to us in our dying time.
If you haven’t been deliberately making meaning in your life by the ways you’ve lived it, then your time of dying is going to be a hard, hard proving ground, a tough, under-the-gun place to do so.
If you do accept death, what meaning can you find in a culture that conceals it and pretends it doesn’t happen, where the only institution of our culture that attempts to put death into context—religion—is all but gone? Even when you’re alive and healthy, you flounder at finding meaning that transcends the material. That is only amplified during your dying time. The context and meaning must already be in place for death to make sense, but since I know very few people who understand their existence while healthy, dying will be an exceedingly painful affair.
[Medicine] has turned the epic life drama of dying into the treatment of symptoms, the treatment of side effects of the treatment, the treatment of side effects of the drugs, the treatment of secondary, escalating symptoms, the treatment of secondary side effects, and so on.
The medical industry distracts you from death, postponing your acceptance and understanding of it. You will be so busy with doctor appointments, treatments, management of side effects, and listening to encouraging words of hope from loved ones and support groups that death never stops being an abstraction.
In a death-phobic culture like our own, knowing you are dying is not as healthy as hoping you aren’t dying while you are. When hopeful people are dying, and when dying people are hopeful, they buy a house on a street called Not Now, in a town called Not Yet, according to a Freedom 55 investment plan called Anywhere but Here. They become fighters, and the obligation they hold their families, friends, and caregivers to is that there be nothing but positive, upbeat, hopeful talk around them, no matter the diagnosis, prognosis, symptom buildup or failing strength, phantom capacity or fugitive alertness, until they themselves give the unequivocal signal that they have given up hope.
It is not dying that is traumatic; it is dying in a death-phobic culture that is traumatic.
In addition to the medical industry, there is also the health charity industry that acts as a cult to recruit you and your family to the “cause” of fighting, finding cures, and having hope, all while they lop off 50% of your money in “administrative” costs, and all you’re left with is colored ribbons made in China that you eventually toss into the trash when you realize how hollow their compassion really was.
Physicians, counselors, and families are all unhinged when a dying person wants to die before they are able to.
“I’m dying.” Don’t be negative. “I want to die.” You’re depressed.
If I get a terminal disease, and choose not to get treatment, please don’t ask me to fight, and please don’t send me your apple cider vinegar cure. Let me die! When the doctor lists my treatment options, and advises me to take a drug which will napalm my body, and that it’s my best option, I will tell him to let me die! When a family member says that I need to fight for them, so they don’t suffer the grief from my absence, I will thank them for their love and say let me die! No one, including myself, allowed my sister to die. She had to fight when she was beyond the strength to do so, when it was not fair to her. Trusting the doctors when it came to my sister’s care was perhaps the biggest mistake I’ve made in my life.
Our fear of dying is an inherited trauma. It comes from not knowing how to be at home in the world. It comes from having no root in the world and no indebtedness to what has gone before us.
As we become more rootless, more disconnected from our families, ancestors, and homelands, dying becomes that much harder. We don’t know why we lived, so how can we know why we’re dying?
Dying is enormously hard. The labor of it–and it is labor, of the same kind as that which brings life into the world–is relentless, demanding. The shock of having to see your days as numbered in the dozens, of seeing your body heading out of town, of seeing yourself as mostly passed, these are in some ways ruinous and costly encounters with the way it is.
But it’s going to happen. No amount of medicine or miracle cures will stop it, and attempting to delay your death simply extends your dying time so that you die longer, so that your body rattles for longer. Today is the time to face death, while you’re healthy to face it, not when you get sick.
If you are not born with the instinct for dying well, you have to learn it. I wish you every success in finding someone who is good at it and is willing to teach you. You have to learn how to die, or you probably will not die wisely or well.
People die the way they live, mostly. That could be grim, or it could be, in a quiet and unexpected way, great news. It means that you can begin to learn how to die well long before your turn comes. It means that you can practice it in all the mundane corners of daily life. It means there’s nothing to wait for. There’s no one to give you the news. Getting up again the next morning, until you can’t: That’s pretty much all the news you’re going to get to keep you in the know. Being able to eat again, until you can’t: That’s the news. Everyone else’s dying and death before yours is the news washing up on your shore.
One downside of this book is that it’s written in a poetic style that is quite wordy. It’s not a typical nonfiction book that lays out a recipe for action; instead, it is more of a gentle ballet that connects you with Jenkinson’s heart and his experiences. While the book will help you understand death in relation to medical care, it does not help much with death itself. Instead, it talks about how death is done in the modern era, and why it is so difficult. Nonetheless, I believe this book is important to read, especially if you or a loved one have just been diagnosed with a terminal disease.
If there’s one thing I learned from Die Wise, it’s that I shouldn’t count on anyone to tell me I’m dying, especially a doctor. They won’t tell me. My family won’t tell me, and will give me hope where none exists because they don’t want me to die. I will have to expose myself to death in a way that has been shielded from me and listen to my bones when my time is near, and be ready to experience death as purely and consciously I can, just like I have experienced everything else in life, because while I may not want death to come, it will come on its own timeline, not my own.
I wish I read Die Wise before my sister died. I would have understood that all her treatments simply prolong her dying time and that cancer “remission” is still a form of dying, albeit at a much slower pace, because the cancer is still there, waiting until it can start a new offensive. I would have been able to decode the “comfort” that doctors promised her, and how when they said it’s “helpful to try” a drug, what they were really saying is that we’ve arrived at the end of the road, and that it’s time to die. I lament that my sister had to die so painfully and confusingly for me to learn how I could die wisely when my time comes.
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