Can we choose when we die?
The man had promised his fiancée that he would walk her down the aisle. Thus, on the recommendation of the doctor who was treating him for advanced lung cancer, the wedding date was brought forward by two months.
“He was a man of his word,” said Charles von Gunten, the oncologist who treated him. It took tremendous energy for her bedridden patient to dress for the occasion, being held in a hospice, and escorting her daughter down the aisle in a wheelchair, von Gunten says.
That evening, after the reception, the father of the bride passed away.
You may have heard some version of this story before. A parent clings to life until a child arrives. Or against medical odds, someone lives to see the birth of a grandchild. Or family members sit beside the bed for two days and the loved one dies when they go out for lunch.
Can people choose when they die?
Lizzy Miles, a hospice social worker in Columbus, Ohio, sees him all the time. Miles’ own great-aunt died “the second her chaplain walked into the room,” she said. Her great-aunt, of great faith, had been unresponsive and inexplicably alive for days. Looking back, the family thinks they were waiting for the chaplain.
“All these things happen [often] enough that those working in the field are not surprised,” says von Gunten, a pioneer of palliative medicine in the 1990s and editor of the Journal of Palliative Medicine.
One theory is that a hormonal stimulus can keep us hanging on until a special event or the arrival of a loved one. “What people will do for each other in the name of love is extraordinary,” von Gunten said. “I think it’s a gift when it happens.”
But there are limits. To be clear, there is no scientific evidence that we can control when we die. If we could want ourselves dead, there would be no right-to-die movement or legal battles over euthanasia.
Felice LePar, an oncologist with Alliance Cancer Specialists in the Philadelphia area, also thinks people can have some influence on when they die. LePar warns families that patients sometimes die quickly after deciding on hospice; this, despite the absence of any change in their state of health.
“We can’t understand everything,” she says. “Some people decide they’re just done living.” Other times, when reviewing lab tests, she wonders how a patient can still be alive.
“My rule of thumb is when someone says ‘I think it’s soon’, I listen,” von Gunten says. “They tend to know more than me” about when they die.
Few scientific studies have explored our last moments of life. Protection and respect for the deceased figure is part of this. Death is considered sacred in all cultures, and it’s difficult to get ethics review board approval for such studies, von Gunten says.
Questions about potential harm to attendees and trespassing arise, Miles adds. “Do we bother people while they’re dying to ask questions?” she says. “It’s a tender moment for people.”
Sociologist Glenys Caswell from Nottinghamshire, England, who describes herself as an expert in death studies, has studied people who die alone and points out that it’s not always sad.
“We all want different things in dying as we do in our lives,” Caswell says. “Some [who are dying] don’t want people to be busy for them or wanting to be alone when they’re not feeling well. Others don’t want to hurt their families.”
Hospice nurses Caswell interviewed during his research believe we have some control over death after seeing many patients die after loved ones leave the room. “Hearing voices may be what kept them alive,” Caswell says. When the family leaves, they can relax and let go, she says.
Waiting to die until people leave the bedside can be a protective gesture to spare loved ones who may not be doing well, Miles says.
“This seems to happen most often when the patient is a parent,” she wrote in one of her Pallimed blog posts. His mother died when Miles took a short break to shower. The social worker says she felt guilty about this for years, but learned to respect what seemed to be her mother’s choice and personality. “Don’t project your own beliefs about what makes a good death,” says Miles, whom she advises others who are going through this.
LePar says people with terminal illness often think more about the people they leave behind than about themselves. They do what they think their family wants, she said, and don’t want to be a burden.
That’s why standard advice often involves giving a loved one permission to die. “This reassurance can help people on both sides to let go in peace,” von Gunten said.
“‘You did what you had to do. We’re fine,'” Caswell suggests as an example of what to say.
Miles sees things differently, however: “If it’s fear that keeps a patient from lingering, telling them it’s okay to let go can put unnecessary pressure on them to leave before they do. be ready.”
How well do people in a state of non-responsiveness know what is going on around them? The researchers used electroencephalography to measure the brain response of dying hospice patients to voices and sounds, before and after they lost consciousness.
The study found evidence that the brain responds to sound stimuli, supporting the idea that patients can tell when someone is in the room. However, the researchers could not confirm whether the patients understood what they heard or were able to identify voices.
Hospice workers refrain from calling people “unconscious,” preferring the term “unresponsive,” Miles writes on his blog. Even end-of-life patients seem to be aware of what’s going on in the room, she says. Tiny gestures – the blink of an eye, a swallow or a turn of the head – can be an answer. One patient began to breathe along with the music she was putting on, “almost as if he was conducting,” she recalls.
I am convinced that my father could hear me dying despite his appearance of deep sleep. He shook my hand once and there was an upward tilt of his head when I said I would take care of my mother. Then, a funny raised eyebrow when I said I would write about him.
More convincingly, I had regularly updated my father on my brother and sister-in-law’s trip to be there, as I received messages in texts – the flight delay, the rental car line, traffic. Within 15 minutes of my brother’s arrival, my father died after standing unresponsive for 16 hours.
“It’s impossible to know, let alone prove or disprove,” Sam Parnia says of whether we can influence the time of our death. Parnia is an expert in the scientific study of cardiac arrest and death and an associate professor of critical care medicine at New York University’s Grossman School of Medicine.
What Parnia is sure of from his research is that death is not a fixed moment and is not well understood. Parnia has studied thousands of testimonies from people who have been revived after being thought to be dead. They consistently described feeling aware, clear-headed, and aware of what was happening after their heart stopped.
“Calling the time of death when the heart stops beating and the body and brain stop functioning reflects social convention rather than science of what is happening biologically in the body,” says Parnia. “Studies have shown conclusively that our brain cells do not die for many hours after we die.”
Von Gunten advises people to behave as always with the dying – not to be afraid that they will break if you hold them, for example.
“You don’t have to keep the kids quiet and the lights don’t have to be dimmed,” he says. “Whispering outside the door is the worst thing you can do if that person still wants to know everything.”
Ideally, the dying person will have talked to family and friends about their end-of-life wishes beforehand, Caswell says. Who do you want by your bedside, or do you prefer solitude? Do you want to listen to a cherished symphony in your final hours or have someone read a favorite poem? It’s a tough conversation to have, but everyone benefits from this openness, Caswell says.
Dying is the last thing you do in life. Why shouldn’t it be exactly how you want it, and maybe even when you want it?