What does dying feel like? Medicine is 'just beginning' to know

'Medicine is just beginning to peek beyond the horizon'

Editor's note: This story was updated on May 7, 2019.

Death is inevitable, but scientists are just beginning to understand some aspects of dying, while others remain unknown, Jennie Dear writes in The Atlantic.

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Margaret Campbell, a nursing professor at Wayne State University, said that researchers often must use accounts about death from family and doctors, rather than patients themselves. "Roughly from the last two weeks until the last breath, somewhere in that interval, people become too sick, or too drowsy, or too unconscious, to tell us what they're experiencing," she said.

So "despite a growing body of research about death, the actual, physical experience of dying—the last few days or moments—remains shrouded in mystery," Dear writes. "Medicine is just beginning to peek beyond the horizon."

Modern-day dying

It's only in the last century that people have started dying slowly, Dear notes. Patients who have access to health care often die from chronic or terminal conditions, such as cancer or complications from diabetes, rather than from a sudden illness or workplace accident.

People who die more gradually often experience a period of days in which they lose their desires and senses in a particular order—a process that James Hallenbeck, a palliative care specialist at Stanford University, calls "active dying." Hallenbeck said, "First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch."

David Hovda, director of the UCLA Brain Injury Research Center, said the brains of dying people brains begin "to sacrifice areas which are less critical to survival." Their motor skills, inhibition, and executive functions decline, as does their ability to carry out complex planning.

Questions of pain and suffering

Dear writes that because many people lose consciousness or awareness near the end, it's difficult to know how much they're suffering.

David Hui, an oncologist and palliative-care specialist, said, "We generally believe that if your brain is really in a comatose kind of situation, or you're not really responsive, that your perception—how you feel about things—may also be significantly decreased" and that "you may or may not even be aware of what's happening."

Campbell said that some patients will inevitably experience pain when dying, while "there are some patients that just get really, really old and just fade away, and there's no distress."    

And a sound that some people associate with distress—the "death rattle" that patients make in the back of their throats when they get too weak to swallow or cough—likely isn't painful, according to researchers.

'Seeing the light'

While researchers can't ask the dead what dying feels like, they can turn to those who had a near-death experience. Many heart attack survivors say they had an "amazing experience in their brain" when they were unconscious, said Jimo Borjigin, a neuroscientist at the University of Michigan. "They see lights and then they describe the experience as 'realer than real,'" she added.

Borjigin said those feelings might be explained by a surge of neurochemicals in patients' brains just before death, a phenomenon she has observed in animal studies.

Hovda attributes dying patients' visions to different parts of the brain becoming "excited" as the brain "begins to change and start to die ... and one of the parts that becomes excited is the visual system. So that's where people begin to see light."

Death dreams

Hospice Buffalo CMO Christopher Kerr is leading new research in an effort to better understand the dreams and visions of those near the end of life, and whether those visions can have therapeutic effects.

The research is currently in its infancy and is focused on identifying and describing the deathbed experiences to determine how providers can support "a good death" for patients and their loved ones. Kerr's team conducted a primary study, published in the Journal of Palliative Medicine, based on interviews with 59 terminally ill patients admitted at Hospice Buffalo.

They found that patients said most of their dreams were comforting, but associated about one in five dreams with distress.

The researchers identified several common themes in the dreams and visions: discussions with loved ones, the importance of resolution or forgiveness, and the reassurance that those near death had been good to other people.

They also found that the patients' dreams increased in frequency in the days and weeks prior to their death, and that "patients' pre-death dreams were frequently so intense that the dream carried into wakefulness and the dying often experienced them as waking reality."

Unknowns

Yet while researchers have made progress in understanding death and dying, the final moments of death are still largely a mystery. Once patients no longer eat or drink and lose their vision, "most dying people then close their eyes and appear to be asleep," Hallenbeck said. "From this point on … we can only infer what is actually happening."

He added, "It's like a storm coming in. The waves started coming up. But you can never say, well, when did the waves start coming up? … The waves get higher and higher, and eventually, they carry the person out to sea" (Dear, The Atlantic, 9/9).

Next, get URMC's end-of-life conversation prompts

When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

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