For The Dying, A Chance To Rewrite Life (2024)

Kate Frego pins the turban of her mother, Aida Essenburg. Before Essenburg died in July of this year, she sat down with a dignity therapist to record the history of her life in what became a 50-page document. Courtesy of Kate Frego hide caption

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Courtesy of Kate Frego

For The Dying, A Chance To Rewrite Life (2)

Kate Frego pins the turban of her mother, Aida Essenburg. Before Essenburg died in July of this year, she sat down with a dignity therapist to record the history of her life in what became a 50-page document.

Courtesy of Kate Frego

For several decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that can help people cope with the reality of their death. One of these therapies asks the dying to tell the story of their life.

This end-of-life treatment, called dignity therapy, was created by a man named Harvey Chochinov. When Chochinov was a young psychiatrist working with the dying, he had a powerful experience with one of the patients he was trying to counsel — a man with an inoperable brain tumor.

"One of the last times that I went into his room to meet with him, on his bedside table was a photograph of him when he had indeed been young and healthy and a bodybuilder, and it was this incredible juxtaposition of these two images," says Chochinov.

So in the bed there's his patient — this skeleton of a man — very pale and weak. On the bedside table, there's this portrait of a glistening, muscled giant. And Chochinov says that sitting there, it was very clear to him that by placing this photograph in such a prominent position, the man was sending a message: This was how he needed to be seen.

As Chochinov continued his work with the dying, he confronted this again and again — this need people have to assert themselves in the face of death. And he started to wonder about it.

"Why is it that how people perceive themselves to be seen should have such a profound influence? How does that make sense? What does that mean?" Chochinov says.

So he tried to answer those questions. As a psychiatrist at the University of Manitoba in Canada, he did study after study trying to tease out exactly what troubled people most about dying. What he found was that what people found most assaulting and annihilating was this idea that who they were would completely cease to exist after their death. And so Chochinov decided to do something about it.

"If the idea of having something that will outlast even you matters for patients that are near the end of life, then we need to do something that will create something that will last beyond ... the patient," he says.

A Patient's Narrative

The something that Chochinov decided to create was a formal written narrative of the patient's life — a document that could be passed on to whomever they chose. The patients would be asked a series of questions about their life history, and the parts they remember most or think are most important. Their answers would be transcribed and presented to them for editing until, after going back and forth with the therapist, a polished document resulted that could be passed on to the people that they loved.

Chochinov named this process dignity therapy, and for the past 10 years he has used it with the dying. And one of the things that has struck him about the process is this: The stories we tell about ourselves at the end of our lives are often very different than the stories that we tell about ourselves at other points.

"When you are standing at death's door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth," Chochinov says.

Some people at that point choose to reinterpret lives, while other choose to frame their life as a warning. For example, Chochinov says he was doing the therapy with an alcoholic who had lived a very troubled life. Chochinov wants his therapy to help people come to peace with their lives, and he was trying to get the man to remember some good times. But the man was having none of it.

"I remember him saying, 'I don't want to talk about Christmas — I don't remember many very happy Christmases, and that's not why I'm doing this,' " says Chochinov.

Chochinov says people who are troubled sometimes use the narratives to formally ask their families for forgiveness. But this guy wasn't even doing that.

"He was way past being forgiven," says Chochinov. "He simply wanted his grandchildren to know who their grandfather was so they could choose a better way."

Rewriting A Life

But do these stories have to be true in order to be therapeutic? To find out more, I got in touch with Kate Frego, whose mother, Aida Essenburg, passed away on July 1. Before she died, she sat down with a dignity therapist to record the history of her life. It became a 50-page document.

In one section, she writes: "It was on the other side of the river, on the Fort Gary side, that's where I met my husband. We'd go there and sit around or go paddling ... now we'd say we 'hung out.' He was a very nice person. I don't think he ever swore in his whole life."

Frego says that after her mother's death, she and her sister rushed to the hospital to retrieve this document — they were just so curious. Sitting on the floor in her mother's empty living room, Frego says she started to read.

"Mom had spoken about this document we would see after her death several times, in slightly mysterious terms," says Frego. "And she always kind of laughed about that, as it if were a bit of a joke she was playing on us."

But one of the first things Frego realized was that there would be no earth-shattering headlines or dark revelations. Instead, she found the opposite: Often in the story, Frego says her mother "just dramatically underplays something that I know was actually much larger and much more meaningful or painful or upsetting to her."

Consider, for example, her mother's recounting of a visit she made to her sister who lived in a different town. She wrote: "She was quite well, we had a lot of fun and a wonderful visit."

But it happens that Frego was on that visit, so she knows that it was not really wonderful. Her mother's sister was very sick and so disoriented that Frego and her mother spent most of their time essentially trying to put out fires.

She says they found out "some really unfortunate things about family members that were taking advantage of my aunt. We had to correct those things, and we had to deal with her and her bank accounts, and get her to eat again."

Was Frego's mother's version a deliberate distortion of the truth, brought on because she was facing death? A whitewashing or attempt to bend the narrative of her life in a more positive direction? Frego doesn't think so. She believes that the fact that her mother was so close to death just changed her interpretation of things.

"It wasn't an intentional blurring; it really was her giving us her take on things and where she was at the time," says Frego. "She was telling us that she chose to remember the happy parts of it. And truth is the way we perceive what's happening to us, how we interpret it."

An Urgency To Change

So it wasn't a lie — it was a genuine re-evaluation, which apparently is pretty common.

"When you face death, it's like facing a wall, and it forces you to turn around and look at the life that you've lived," says William Breitbart, a psychiatrist at Sloan-Kettering Cancer Center in New York. He's been trying to develop new psychotherapies for the dying. He says that many people have the wrong idea about the dying process.

"The prevailing mythology is that you die the way you live, and you can't change yourself in any way," says Breitbart. "The fact is that the last few months of life — because of the awareness of death — create an urgency that facilitates growth and change."

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This, he says, is why something like dignity therapy can be good. Though there's no evidence that it relieves depression or anxiety, he thinks it can help us change in the very last moment of our lives. After all, he says, we've all lived imperfect lives.

"All of us fail, and the process, the task of dying, is to relieve ourselves of this guilt, whether it's forgiving yourself or asking others to forgive you," says Breitbart. "Or to remember your life slightly differently. But that's the task of dying."

As for Frego, she says she's developed a strange relationship to the document her mother put together. Since her mother's death, Frego says she's actually carried the document around with her. She has the story of her mother's life, always at her side, knocking around in the bottom of her bag.

For The Dying, A Chance To Rewrite Life (2024)

FAQs

Why does the jaw drop when dying? ›

At the moment of death, all of the muscles in the body relax (primary flaccidity ). The eyelids lose their tension, the pupils dilate, the jaw may fall open, and the joints and limbs are flexible.

What does a dying person think about? ›

Hope at the End of Life

While they may have stopped hoping for a cure or for a long life, they may still hope to mend relationships with loved ones and die peacefully. Keeping the truth about dying from the one who is nearing death could rob them of the chance to reflect on their lives and fulfill their final wishes.

What are the 4 obvious signs of death? ›

Overt clinical signs of irreversible death (e.g., rigor mortis, dependent lividity, decapitation, transection, decomposition)

How long can a person hear after death? ›

Scientifically speaking, when a person dies, their body's functions, including hearing, cease gradually. Hearing, like other senses, depends on a complex system involving the brain, nerves, and sensory organs all functioning together. After death, no they can not hear.

Does the dying know they are dying? ›

But there is no certainty as to when or how it will happen. A conscious dying person can know if they are on the verge of dying. Some feel immense pain for hours before dying, while others die in seconds. This awareness of approaching death is most pronounced in people with terminal conditions such as cancer.

Is a dying person scared? ›

People who are dying can feel scared that they will be left alone to die, without anyone to listen to them or look after them. It is important to allow them time to talk. Don't change the subject, even if one of you starts crying. Crying is a very normal reaction and can release a lot of feelings and emotions.

What happens in the last 5 minutes before death? ›

Facial muscles may relax and the jaw can drop. Skin can become very pale. Breathing can alternate between loud rasping breaths and quiet breathing. Towards the end, dying people will often only breathe periodically, with an intake of breath followed by no breath for several seconds.

How do you know death is hours away? ›

In the hours before death, most people fade as the blood supply to their body declines further. They sleep a lot, their breathing becomes very irregular, and their skin becomes cool to the touch. Those who do not lose consciousness in the days before death usually do so in the hours before they die.

What shuts down first when dying? ›

The digestive and respiratory systems begin to shut down during the gradual process of dying. A dying person no longer wants to eat as digestion slows, the digestive track loses moisture, and chewing, swallowing, and elimination become painful processes.

What is end of life mandibular movement? ›

Minutes from dying

Their breath may become very shallow and just the lower part of the jaw moves, known as mandibular breathing. Or, they may have significant pauses between breaths — up to a minute (apnea). They may appear as though they are opening and closing their mouth without actually breathing.

What happens to your face when dying? ›

They might close their eyes frequently or they might be half-open. Facial muscles may relax and the jaw can drop. Skin can become very pale.

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