The dining room of the West Island Palliative Care Residence is, improbably, a rather cheerful place. When my sister Katharine lay dying, it was presided over by a budgie named Blueberry, who hopped from perch to floor to swing to wall and gabbled at all and sundry.
Monique Séguin, was one of Katharine’s nurses. She’s a middle-aged woman with curling dark hair who had seemed bossy to us in our overwrought emotional state. She shooed us out of Katharine’s room one afternoon so that my sister could rest. I even began writing a letter to her at the time, saying that it was none of her business, that no one who was about to sleep forever needed to sleep in the interim. I never gave the letter to her, and I’m glad of that. Hospice nurses and doctors see their patients differently than most families—brand-new to the dying experience—can see their beloveds themselves.
''He said he felt himself for a few seconds to be not in this world but elsewhere . . . ‘I am going,’ he said, and departed a few minutes later.”
Nurses like Monique have become passionate advocates of creating a hushed, listening space around the dying, because they have learned from experience that the men and women in their hospice beds undergo subtle transformations in awareness and mood.
Resting her elbows on the wooden dining room table, Monique tells me that most of the people she’s cared for over the years have come to know, at a certain point, exactly when they will die. For the nurses, this certitude is uncanny. “We all know we are going to die . . . one day,” said Teresa Dellar, executive director of the residence, in the Montreal Gazette. “This is different.” Within roughly seventy-two hours of the end of their lives, many dying people in hospice settings begin to speak in metaphors of journey. They are not being euphemistic. They are far beyond the task of making everyone feel better. They often haven’t said a word in days, and then suddenly they say something focused on travel. They sincerely want to know where their train tickets or hiking shoes or tide charts are.
Monique offers me an example. “We had a patient who was agitated. It was a Friday evening. She keeps saying, ‘I want to go shopping.’ In life, she was a real shopper. I said, ‘When do you want to go shopping? She said, ‘Monday.’ I said, ‘Fine, let’s go shopping Monday.’ For me, she was telling me ‘I’m going.’ And actually, she died that Monday evening.”
To families, a desire to go shopping on Monday would have been delusional talk, febrile mutterings of no importance. Far more significant to them, perhaps, would be the anticipated deathbed confession, something for which they had a cinematic sense—a whispered “I love you” or “Take care of the children” before the head falls back onto the pillow. But hospice staff know that when their patients begin to talk about excursions or travel, they are announcing their departure. They do not behave like perishing actors in Hollywood movies. Instead of offering some eleventh-hour contemplation about their lives, they request tickets, or boats. Some ask for their coats, others inquire about the bus schedule. They’re caught up in the busy preoccupation of leaving, not reflecting on what they’re leaving behind. My sister asked, “When am I leaving?” and expressed frustration about her “hapless flight attendants” in the way I might double-check my flight time to Newark.
David Kessler, former chair of the Hospital Association of Southern California Palliative Care Transitions Committee, has observed this phenomenon countless times—in his own work, and in conversation with medical colleagues. “The notion of the dying preparing for a journey isn’t new or unusual,” he writes in his book Visions,
Trips, and Crowded Rooms. “Although, interestingly enough, it’s always referring to an earthly journey. People talk about packing their bags or looking for their tickets—they don’t mention chariots descending from heaven or traveling to eternity in some other manner.” Kessler recalled a ninety-six-year-old man who suddenly woke up in his hospice bed and told his daughter: “Gail, it’s time to go.”
“Out! Let’s make a run for it. I have to be free.”
“She didn’t know what to say,” reports Kessler. “She helped him sit up, as he seemed to want to get out of bed. ‘Is the car ready?’ he asked. When she assured him that it was right outside the hospice he said, ‘Good. I’m ready, are you?’ She asked him where they were going, and he said he wasn’t sure. ‘I only know that I’ve got this trip in front of me, and the time has come.’ He decided to rest a bit before ‘the trip,’ and died that morning.”
There is no known medical reason for the dying to have such an acute sense of timing about their demise. Palliative-care conferences often devote sessions to how to improve doctors’ ability to prognosticate about death. When patients make their announcements about going off on a trip, rarely are there physical signs of imminent decline, such as a marked deterioration in blood pressure or oxygen levels. On the contrary, the bodily symptoms take place afterward. “I’m going away tonight,” the blues singer James Brown told his manager on Christmas Day 2006, after being admitted to the hospital for a pneumonia that wasn’t considered to be fatal, whereupon his breathing began to slow.
In the most comprehensive, cross-national study of deathbed experiences ever done, the psychologists Karlis Osis and Erlendur Haraldsson confirmed that these intimations of departure even occurred in people who weren’t considered by doctors to be terminally unwell. Here is a case reported by one of the physicians to the researchers:
“A male patient in his fifties was going to be discharged on the seventh day after an operation on a fractured hip. The patient was without fever and was not receiving any sedation. Then he developed chest pain and I was called to him. When I came, he told me he was going to die. ‘Why do you say so? Having a little pain in the chest does not mean you are going to die.’ Then the patient told how immediately after the pain in the chest started he had had a hallucination, but still remained in his full consciousness. He said he felt himself for a few seconds to be not in this world but elsewhere . . . ‘I am going,’ he said, and departed a few minutes later.”
One paramedic sees this puzzling interior knowledge displayed in his ambulance en route to the hospital, as he explained when he called into the radio program Coast to Coast with George Noory, during a discussion of the subject. “It’s very unnerving,” he said. “They know, for whatever reason. They have a prescience. It’s a definitive feeling that they have that they are gonna die and I would say ninety-five percent of the time they end up dying in front of me. And it’s very disturbing to me.” Why does he find it so disturbing? Because it eludes medical logic and thus defies his training. “There were many cases where, really, I did not think that they were ill enough, and then, for whatever reason, they would suddenly have a cardiac arrest and I would say, ‘Oh my God, he told me this [was going to happen].’”
Is it a failure of modern medicine to document the mind-body processing of death? “My patient said, ‘yeah, I’m going to die today,’” a palliative physician recalled in a 2010 report in the Canadian Medical Association Journal about the impact of dying on the personal lives of doctors, but the physician thought, “There is no way that he should die . . . and [yet] he died within forty-eight hours. I marvel at that. There’s a mystery there.” His reaction, and that of the paramedic’s, isn’t unusual. “Several medical observers expressed amazement and surprise when confronted with cases in which patients died . . . despite good medical prognoses,” reported the two psychologists who compared American and Indian deathbed experiences. “For example, a patient in his sixties was hospitalized because of a bronchial asthmatic condition. His doctor’s prognosis predicted a definite recovery. The patient himself expected to live and wished to live. Suddenly he exclaimed, ‘Somebody is calling me.’ He paused, for it caught him up short, but he tried to dismiss it at first, telling his family, no worries. But, within ten minutes, he had died.”
The Florida-based palliative psychologist Kathleen Dowling Singh has described this way of knowing as something akin to a transition in modes of consciousness. Sometimes it is fast and so unexpected that there isn’t time to understand what has happened. Other times, with a slow terminal illness, it is like a dawning awareness that another realm awaits. She recounts sitting with a nurse colleague who was, herself, now dying and apparently in a coma. Somewhat rhetorically, Singh asked the nurse how she was doing, patting her arm lightly, and surprisingly the woman answered: “I’m halfway there.” Writes Singh: “I, of course, will never know whether her words . . . referred to time, i.e. the unfolding of events from Saturday [when she was hospitalized] to Wednesday, when she died, or whether they referred to her psychospiritual movement from tragedy to grace. I do know that she was referring to a process she was aware she was enduring and that that process had, for her, a referential beginning point and end point by which she could measure her halfway point.”
Hospice nurse Monique Séguin agrees. “We have to create an opening to be able to listen. If you don’t believe in that, well, you’re doing your work, as a nurse, but you’re missing a few things.” Making her rounds at the West Island Palliative Care Residence, Séguin now makes a point of asking her patients about their dreams. It is another way for them to convey how they feel, what they sense coming. They’ve told her that they dream of riding in a yellow bus, uncertain where their stop is; of floating in a sailboat on a calm pink sea. The woman who had that dream told Séguin, “My [deceased] father was in the boat. My father is coming to get me.” Sometimes, they dream of being unable to get their message through to their distraught family. A woman in her eighties dreamed of trying to jam a corncob into a too-small opening, wild with frustration. Whether they speak of journey or through dream logic, Séguin tries to translate for the family when she can.
“I remember we had a patient who kept telling her son, ‘Take me home,’ and he would just argue with her, ‘Mum, you know you’re too sick.’ She would get more and more frustrated. One evening, I tried to tell him, maybe you should ask her, ‘Mum, when do you want to go home?’ Maybe she’s trying to tell you something. He didn’t listen, he was not interested.” She smiles and gives a quick shrug; staff, she says, “must tread on eggshells.” The woman died a few days later.
Edited extract from Opening Heaven’s Door by Patricia Pearson. Buy a copy here.