Bedside vigils are a delicate chapter in the provision of palliative care, one in which offering music, reading aloud, holding hands or just talking to the unresponsive patient can feel like the care of sickness.
But is it? Do the dying hear us? Or are we really just talking to ourselves? That's what a recent study by researchers from the University of British Columbia set out to learn.
The authors spent over three years trying to identify and then study terminally ill patients willing to make an extraordinary parting gift: the granting of permission for researchers to place a high-density EEG skull cap on their head during a precious final hour of their life, then play tones, provide instructions and monitor if the brain still processes language.
"This was a persistent question that came up among the families who were in the palliative care wards and hospices," said Lawrence Ward, an experimental psychologist at the University of British Columbia who co-authored the study with psychologist Elizabeth Blundon.
Their paper, "Electrophysiological Evidence of Preserved Hearing at the End of Life," was published last month in the journal Nature --Scientific Reports, and is the first of several findings to be published from the research. Ward first learned of this question from one of his co-authors, Dr. Romayne E. Gallagher, a palliative care physician at the University of British Columbia.
"The question always was 'can my loved one hear me?,'" Ward said. "'I'm sitting here telling them how much I love them, is anything getting through? Is it comforting them?' The physicians and nurses often said 'hopefully it is, but truthfully we don't know.'"
"These people are basically in a coma," he adds. "They have reached the 10% (brain function) level, which is just above death on the scale that hospices used. I was skeptical that anything would be going on in brain like that."
Blundon identified 13 subjects willing to take part. They had to be lucid when they agreed to the experiment, neither agitated or suffering from dementia. Most were middle-aged or older cancer patients. Newly diagnosed patients were reluctant to participate. All were in hospice.
Who, you might ask, agrees to hear audiotones from a researcher while on their death bed?
Ward calls the research subjects "just amazing people," adding that "they gave us a gift that was only theirs to give."
"Most of these people had been ill for quite some time, and they had become used to the idea that they were dying, if that's possible. They were also generally intellectually curious, and really into life, which is ironic, because they were dying."
- Lawrence Ward, experimental psychologist
After research setbacks, Blundon ended up with just five Vancouver-area hospice patients able to provide data over a two-year period. A preliminary session had shown each participant an auditory exercise they would be asked to take part in when their condition diminished. All participants were eventually studied within the final 12 to 24 hours of their life, one just six hours before dying.
The study took an hour. After placing headphones on the unresponsive patient, Blundon told the subjects they were going to hear a series of five tones, and to silently count in their mind the series in which a tone had changed. They had previously given the same test to the patient upon enrollment, so the patient had already once understood and performed the task.
The psychologists chose the task because brain researchers have charted the brain system activity that corresponds to performing the tasks. They had already conducted a hearing screening in order to set hearing levels. All five, the authors concluded, showed evidence of understanding language while unresponsive.
"This is consistent with the trope," they wrote, "that hearing is one of the last senses to lose function when a person is dying, and lends some credence to the advice that loved ones should keep talking to a dying relative as long as possible."
Besides its effect on family visits in hospice, there are practice findings raised by the results. These include the advice that nurses not take hearing aids out of dying patients when they become unresponsive, a common practice.
"I would always recommend, given our results those of others, that if there is any doubt whatsoever, that you continue to act as if the person is aware and can hear you even though they can't respond," Ward says.
"Tell them you love them. Hold their hand. Keep letting them know that you and other people are there to support them and to love them," he says. "If you truly want to love and support the person, then just keep loving and supporting them until they die. It can't hurt, and it can only help."
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August 30, 2020 at 08:00AM
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