Denial

“The need for denial exists in every patient at times.” -Elizabeth Kübler-Ross, On Death and Dying

One of the things I’m endeavoring to do with this Substack is to share parts of my memoir, “The Dead I’ve Known,” about hospice nursing. I’m looking for an agent as I revise, and re-revise, and re-re-re-revise. This is the first section from the first chapter and an introduction to Elisabeth Kübler-Ross, aka The Death and Dying lady.

Chapter 1

I didn’t know much about Swiss psychiatrist Elisabeth Kübler-Ross before I became a hospice nurse, but I knew her work—almost everyone who has had someone die in the last fifty years has been exposed to some element of it. In 1969, Kübler-Ross published her first book to international acclaim. It was called On Death and Dying and it was hailed, then and now, as a new way to speak about death and hospitalization, and as a counterpoint to the explosion in medical science and technology that had fundamentally altered the medical establishment since the dawn of the twentieth century. It was the beginning of the movement that would lead to hospice care, a movement that prioritized dignity and the elimination of suffering above all else.

Kübler-Ross’s book was a conversation starter. It was a novel way of thinking about dying, of course, but also about living—what people really needed versus what people actually received, especially in the hospital setting. It was a nudge toward a new way of caring. It offered a blueprint for dying in the modern age, and for grieving too, and though it was not perfect, it was something.

Later, the Five Stages of Dying, as her theory about the psychological, emotional parts of the dying process became known, was co-opted into a model for grieving for those left behind. That was not its original intention. Rather, it was a framework for understanding the phases that the dying patient himself went through as he moved from diagnosis of a terminal illness to death. It has come under scrutiny in the intervening years as too stringent and linear, both for its original purpose and for the process of grieving for which it was adapted, but it was never meant to be a definitive, rigid accounting of what happens to a body or a mind as it is dying—like so much in medicine, it was more art than science, developed by Kübler-Ross and her friend, a hospital chaplain, over the course of their many extensive interviews with dying people.

Those interviews Elisabeth conducted (she always wished to be called Elisabeth) might represent the most attention given to dying patients and to their feelings in the history of modern medicine. That it was important to understand what dying patients experienced, psychologically, was a radical notion—they were dying, after all. What could it matter?

But it did matter. It mattered to the patient, and to his family, and to his caregivers. Elisabeth knew that the dead never leave us. They hang around, in our hearts and minds and in other ways, too. Understanding them and treating them with respect is no empty exercise. We ignore them at our peril.

Sometimes Elisabeth’s five stages happen over the course of weeks or months. Sometimes each stage takes years, as it did for Elisabeth herself at the end of her own life. Sometimes they take moments only. They can occur in different orders, or in slightly different iterations. The world holds billions of souls, after all. They don’t all die in precisely the same way. Still, there is a pattern, and Elisabeth wanted to understand it.

The first stage that Elisabeth identified was one that she observed to occur almost universally: denial. Patients faced with a terminal diagnosis or condition protest that there must be a mistake in the records, someone must have confused the x-rays or CT scans. They think, in response to the doctor’s assertion that they have a certain cancer or some other ticking time bomb of a disease, “Surely it can’t be as bad as all that.” They seek second opinions, third opinions, fourth. They wait for the great mix-up to be explained.

Anger comes next, with the patient lashing out at anyone who might be to blame, whether it be incompetent doctors, negligent nurses, faulty genes, an uncaring God, or themselves. They think, “If only I had been permitted to see the doctor sooner” (and maybe that’s true). They say, “If only I’d been warned properly.” Sometimes their anger has no rational target. Sometimes they are just clenched fists and set jaws walking around looking for a punching bag. Anyone will do—the doting wife or husband, the nurse who is a stranger.

The next stage is bargaining. The patient thinks that if he changes his ways, the diagnosis will go away. He thinks that if he begins to eat healthy, stops smoking, starts exercising, starts taking vitamins, perhaps he can reverse his fate. Or maybe he believes that God will work with him, grant him a reprieve if only he can figure out the right words to say. He’ll do anything. He’ll strike any deal. He’ll right all the many wrongs he’s committed over his life, he’ll make it count, he promises. Just let him live.

When the bargain doesn’t pan out, there is depression. The patient sinks low. He asks, “Why me?” He withdraws from his family and friends. He sees no point in the things he used to love, and even if he has the energy and stamina to pursue them, he chooses not to. He is too sad to be angry, too miserable to look for a deal with the universe. My own grandmother used to sit in a chair in the living room, her head in her hands, the television switched off for months before she died. I’d visit with my small children and she’d smile weakly and then shoo me away nearly as soon as I’d arrived. Her sadness was all that she could see. It felt like a waste to me, a catastrophic waste of time, time she could have been spending getting to know her new grandchildren, telling her lonely granddaughter the secrets of her long life. But she could not. The depression had her. It was too late for both of us.

Finally, there is acceptance. The dying patient comes to terms with his prognosis and with his fate. He understands that this is happening whether he likes it or not and he wants to speak frankly about what plans should be enacted upon his death. He sees his life clearly, and he acknowledges that he has run out of time. He says, “I know I am dying.” He instructs his wife on how to ready the yard for spring, where the extra light bulbs are located in the basement, how to program the thermostat. It happens even in patients whose minds seem to be long gone. I had a demented patient once who had not made any kind of sense for weeks as she succumbed to her illness. A few days before she died, in the middle of a haze of agitated, garbled speech, she sat up, looked her daughter clearly in the eye and said, with flawless diction, “I have loved being your mother.”

We may not be privy to acceptance. Patients may not speak it out loud. They may not even be able to speak, by the end—it may happen in the patient’s own heart, only. But in Elisabeth’s understanding, acceptance was extremely important. It allowed for a good death, meaning a peaceful death, with as little physical and emotional suffering as possible. It was the key to a good death.

In Elisabeth’s early drawing of her model there is a long, horizontal line that runs parallel to all the other stages because it exists continuously alongside them: Hope. Elisabeth understood hope to be present throughout a patient’s traversal through the process of dying. Elisabeth believed that hope was vital to preserve even as she advocated forcefully for physicians to speak the truth to their patients about their terminal prognoses—an uncommon practice at the time, when doctors would obscure the severity of a diagnosis, or simply omit mention of it altogether from a discussion of the patient’s symptoms. In some cases, they might outright lie to keep a patient in the dark about the truth. Those doctors were also trying to preserve hope, but they were doing it all wrong. Hope, in Elisabeth’s view, did not mean a wish to survive or to conquer or “beat” an illness. What she saw as crucial was the hope to endure—to feel that death was something manageable, something that wouldn’t break us, or anyone, but might, somehow, better us, make us more whole. Hope that the next week or day or moment would come, and we would meet it, either in this world or in some world, some existence beyond our knowing. It was hope that when the body no longer went on, the soul might. It was hope in meaning, in the idea that one’s existence had been important, valued. It was hope to be understood.