Nearing Death Awareness
Carlos, seventy-two years old and dying of prostate cancer, is bedbound in hospice care. Yet today, he seemed very excited, reminding his aide to shave him very carefully as he was going to catch the train. Throughout the morning, Carlos continued to make references to his impending trip. While he slept most of the morning, he would occasionally wake, asking questions about whether his bags were packed or whether the driver called to confirm the time. At one point, he called the aide over, thanking him for the care and told him he was sorry that soon he would no longer need him once he left. Carlos’s aide humored him as Carlos kept talking about his journey. When the aide asked him where he was going and how long he would be away, Carlos seemed confused and simply stated that he was not sure. Later that afternoon, Carlos died in his sleep.
Hospice nurses Maggie Callanan and Patricia Kelley documented a number of such cases in their book, Final Gifts.32 In that work, they noted that patients approaching death often communicated their awareness of impending death in a number of significant ways—often using symbolic language or metaphors such as Carlos’s impending trip. “Nearing death awareness” was defined as “special knowledge about—and some control over—the process of dying.” 33 In short, often people who are dying seem to know that death is impending even if their attempts to communicate that fact can sometimes seem oblique. It perhaps is a final gift for the dying—a last opportunity to get affairs in order.
It is also a gift for others—an opportunity for families and friends who can understand that language to finish business and offer a final goodbye. Inadvertently, Carlos’s aide did that. While he did not fully comprehend what Carlos was saying—perhaps Carlos did not fully understand either—the aide, Manuel, was able to respond to Carlos’s goodbye by reaffirming how much he enjoyed being with Carlos, how much he enjoyed their conversations, and how much he learned from Carlos about Mexico—a country from which both Carlos and Manuel’s parents migrated. After Carlos died, Manuel was grateful for the opportunity to have had that last conversation. He recalled Carlos’s tearful smile and last hug after his comment—even feeling that it helped Carlos die peacefully. Perhaps not fully realizing it, they stood together at the edge of forever.
Understanding Nearing Death Awareness
“Nearing death awareness” is different from death awareness. Most people, even children, are aware that they are dying. It would be difficult not to have such awareness. After all, most of us can read our bodies. We know when we have a cold coming on and when that cold has crested. We understand when we are getting weaker rather than better.
We not only read our bodies, we read others. We can interpret the pity we see in our family and visitors’ eyes and their quiet, sorrowful voices. We recognize it is not just a coincidence that a slew of far-flung relatives and friends just happen to be in the neighborhood and decided to drop over to say hello. Their sadness is evident in their responses to simple comments and questions. Greg realized the gravity of his condition when he mentioned to his wife that he planned to rebuild the deck in the spring. The tears in her eyes reinforced his grim prognosis.
And we also read. In the age of the internet, information from both print resources such as medical reference books and web resources such as WebMD are easily accessed. Moreover, in a legal environment that emphasizes informed consent, physicians are unlikely to adopt a protective stance—one that hesitates to confront patients with a gloomy prognosis.
Even children are likely to know their diagnosis and prognosis. Dr. Myra Bluebond-Langner, a medical anthropologist, studied dying children at a time when both parents and health professionals worked hard to shield the child from a poor prognosis. Bluebond-Langner found that through a series of phases seriously ill children move from understanding that they are “sick but will get better” to recognizing that they are “dying.” Like adults, children research, read their own bodies, and attend to the reactions of others.34 Moreover, children are not bound by the same constraints of adults such as respecting boundaries and privacy. When I was at Sloan-Kettering—a major cancer hospital in New York City—children often commented on the medications that others were taking, understanding which drug protocol they were on. It was not unusual for a child to enter the room of a new leukemia patient, look at the IV bottle and comment something like: “Oh, you’re on Protocol B—that’s good, you won’t lose your hair till your third relapse.”
Brett illustrates this. Brett was an eleven-year-old boy diagnosed with leukemia—at a time when the prognosis for his disease was usually about one to three years from diagnosis to death. As was the practice at the time, Brett was told he had anemia. As soon as Brett returned to school after remission, he searched the World Book—a child-friendly encyclopedia—for “anemia.” He soon recognized that the disease did not match his symptoms. He then began to follow the endnote “see also” until he found the entry for “leukemia” and realized that was what he had. Later that day, Brett confronted his parents who confirmed the truth. His response was classic for a child of that age who wants to show mastery. “That’s a tough one.”
So while both children and adults often know they are dying, they defend against it by what psychiatrist Avery Weisman called middle knowledge.35 Middle knowledge means that patients and even family members drift in and out of the awareness of death—sometimes acknowledging it, other times not. And they may choose at times to consciously not talk about it with others, creating a sort of mutual pretense where both the dying person and family recognize death even as they all pretend to believe in a miraculous recovery.36
That way of coping was evident in Brett as well. One early morning, around 3:00 a.m., I received a call that Brett was having an anxiety attack and wished to see me. I rushed to the hospital. Brett was hysterical, acknowledging how fearful he was and how unfair it was that he would likely die as a young adolescent. We spoke for hours, although I actually remember little of the details of that very emotional conversation. At times, I just held him. Other times he laughed when he began to question me about the many experiences, including experimenting with drugs or sex that he would likely miss. He calmed down by breakfast time—falling back to sleep, exhausted. I was planning to continue my work that day but my supervisor, having heard of my experience, emphasized that I had already worked more than enough for one day and needed to be more mindful of self-care. Later that day, after some sleep, I began to review the night, thinking of some of the strains of our conversation that might be revisited with Brett. I returned early the next day, two bagels in hand, to continue our talk. When I entered Brett’s room, he was watching Perry Mason—a show about a lawyer. As I entered the room, Brett stated that when he got older, he might like to be a lawyer. I intuitively recognized that Brett was in a very different place and I needed to respect his choice not to confront death that morning. There would be other times.
Nearing Death Awareness
Most people who are dying have an awareness of impending death—even if they choose not to share it with others and drift in and out of that awareness. But nearing death awareness is different. Here, the dying individual attempts to communicate, often in symbolic language or acts, that they are dying soon.
Nearing death awareness is also different from near-death experiences that we will explore in the next chapter. Near-death experiences occur after a sudden encounter with death—such as a near drowning or a heart attack. The person reports the experience after regaining consciousness.
In nearing death awareness, these visions or dreams happen in the end-stages of illness. Here, patients recall the event as occurring in normal sleep or when they were fully conscious. Sometimes they may even be recounted as they are happening.
Sensing Death
“I think you should come over. Dad’s acting strange.” I received that call on November 30, 1992. My dad woke up that morning agitated, asking, “Am I going to die?” The question seemed to have some immediacy. Five months earlier, my father and mother took me to lunch, during which my father told me the bad news that his cancer had returned and was now in his liver. He knew then he was going to die. For a few blessed months, he was relatively symptom free, but by September he began to weaken, and he was in home hospice care. The decline then was slow but relentless. The week before, we celebrated Thanksgiving together—my dad’s favorite holiday. Despite being confined to a chair bed, he seemed to perk up surrounded by his children and grandchildren. He could not eat much, but he told us how much he enjoyed the Thanksgiving smells.
I rushed over to his home, about an hour and a half ride. My sister was already there, and my brother would arrive shortly. I asked him what was going on—why he thought he was going to die. He simply stated that “it feels like today is the day.” He claimed that he was not in any pain nor did he physically feel different. He just felt he was going to die. He had become close to a hospice aide. When he asked her that question, she put on some music and danced—bringing a smile to my dad. “Would I dance,” she asked, “if you were dying?”
Later that morning, the hospice nurse visited. Her examination was reassuring—at least for us. My dad’s numbers were relatively stable compared to her last entries. She reassured him that she did not think he would die today. He nodded and offered a wan smile.
We sat with him that whole day, reminiscing and gossiping. My dad was what I described as a classic “’50s father.” He defined his role as the breadwinner whose major job was making sure things ran smoothly. My mother’s role was mostly to raise the children. Yet, he was kind and involved in his own way. As we sat together, he apologized for never taking me to a baseball game. I reminded him that I hated to watch baseball games and the fact that I never had to endure that father-son rite of passage was a positive memory. He laughed. But I also commented on how much I enjoyed the small moments of togetherness we shared—watching boats on the East River or going with him to the candy store to buy cigarettes—before he gave up the habit—where I could always hit him up for a chocolate soda and a pretzel. He smiled at me, teary eyed, and squeezed my hand.
We continued our family vigil. About 11:00 p.m., my father thanked us. He said he was a lot better now and suggested we all go to sleep.
He died that night.
My sister felt bad that we were not there at the moment of his passing. I believed he needed us there for that day but somehow knew that he could not leave us when we were in attendance. His death befitted him—quiet and peaceful.
That experience came to my mind when I read Final Gifts. I think that my father sensed, in some inexplicable way, that he would die that day. It reminded me of another experience I had years ago when I was serving a congregation in Detroit as a vicar—or student minister. One of my roles was to visit the shut-ins—that is, those church members who had a disability or illness that kept them from attending services.
One of my favorite shut-ins was a member named Heidi. Heidi always insisted that I come the fourth Wednesday of the month at noon. That was the time she made this delicious German black bread. Before communion, we would always have soup and her fresh warm bread. She would share stories of her teenage years—stories that fascinated me. The daughter of a German father and Polish mother, she lived outside of Warsaw. Though her family’s loyalties were challenged by the war and German invasion, Heidi’s loyalty was clear—it was to her beloved Poland. That was her home. Fluent in both Polish and German, favored by the occupiers because of her German name and appearance, she operated as a courier for the Polish underground throughout her teenage years—she was even decorated by the Polish London-based Home Army. Yet when the communists took over, she thought it prudent to leave her much-loved country.
One week, she called and asked if I could come on the third Wednesday. As we spoke, I asked her the reason for the change in schedule. Her reply was that she did not think she would be home next week. At first, I was delighted that she might have the opportunity to get out of an apartment that was both a home and a prison. I asked her plans. She gently but sadly said that she thought she would die before next week. I was deeply concerned and queried if she was ill or had seen a doctor. She said that while her health seemed stable, she just had a feeling—and in the war, she had learned to trust her feelings. I was young and asked if there was anything I could do. Could I drive her to her doctor? She stated he could not do anything more. I asked her if she was nervous, frightened. She commented that ever since she was young, she knew death. He no longer scared her. After all, she laughed, after all these close calls during the war, it was time he (death) received his due. When I asked her if she wanted to die, she thought a moment and replied, “No, but it is time.”
Heidi had told me that a neighbor had a key and checked on her every morning to see if she needed supplies. That Friday the neighbor called. Heidi had died the night before—slipping away as she sat in a chair watching television. On the side table was a note listing the people the neighbor should call and inviting her to take the homemade donuts and black bread in the refrigerator. Also on the table was her medal—with a request it be given to a Polish-American club in Hamtramck (a separate city within the boundaries of Detroit) where she had been a proud member.
Sometimes people may communicate the awareness or sense that they are dying, not in words but in acts. We know that one of the danger signs of suicide is when someone starts giving away their possessions. Yet, I have seen this happen many times when a person has no intention of ending his or her life.
Missy was a six-year-old child struggling with cancer in a children’s hospital in St. Louis where I was doing research on my master’s degree. Whenever relapses caused Missy to return to the hospital, she would always bring this set of miniature porcelain horses with her. She jealously guarded them. They were to be looked at and admired but not touched. Each horse had its own name and its own story. Black Bart was an Arabian thoroughbred who had won many a race. He had a crush on Pretty Sue—a pinto that had garnered myriad awards in horse shows. As Missy watched television, fingering and talking to the horses seemed both to amuse her and calm her anxieties.
At that time, the hematologist in charge of that unit had a strict rule for staff and a strong recommendation that children be told neither their diagnosis nor prognosis. The operating fiction was that no one ever died in that ward—a policy now changed. In fact, nurses who engaged in such conversations—even with children who seemed to know and asked questions—were quickly transferred out of the unit. Death was a dirty word—unfit for such young ears (or so it was thought).
Yet on Missy’s last and final visit to the ward, even though she had experienced many prior relapses, Missy seemed to know this one was different—this one would not lead to a remission. On the day before she lapsed into a coma from which she would not emerge, Missy seemed to perk up a bit. After she played with her horses for a while, she began to give them to some of the nurses and aides who had taken care of her through the past years.
I often wondered if that sense of impending death was behind Jimmy’s gesture. When I was a chaplain at a cancer center, seven-year-old Jimmy was one of my favorite patients. Ever cheerful and mischievous, Jimmy brought a sense of life and normalcy to a children’s cancer ward. Much to the staff’s distress (as well as amusement), he would organize races for ambulatory kids. They would race down the halls, pushing their inevitable IV stands as well as those in wheelchairs. We would often get calls from a diner across the street of the hospital telling us that some kid or kids were throwing things off the outdoor terrace—finger paint or blocks—on the hapless pedestrians walking on that busy avenue. Yet, Jimmy’s laugh and smile made him difficult to discipline even by the strictest nurse. As one nurse said, “Jimmy is life on this ward.”
Whenever I visited the ward, I would spend time with Jimmy, who told me that “It's cool to hang out with you.” On my last visit, Jimmy was not doing that well. The disease had taken a toll. He had sores now in his mouth, making it difficult to eat or swallow. We had a quiet visit that day, with none of the humor that often marked our time together. Jimmy asked me how long it would be before I finished my work there and returned to school. I told him that I would end my assignment in another two weeks but that I had spoken to his mom and that I would continue to keep in touch with him and his family even after I left. He stared at me for a moment and then slipped off his hospital ID bracelet—giving it to me so I would not forget him. He died that night.
Perhaps the conspiracy of silence that often surrounds children, the mutual pretense where everyone pretends childhood is the kingdom where nobody dies, makes it more likely that children will disclose their sense of death in these symbolic acts. A play therapist once taught me that play is the natural expression of children, the way that they communicate. It may be that where words are so closely guarded and the secret of death held closely, such acts are a way for children to disclose they are dying.
Yet it is not only children. Adults, too, may sense death and disclose that sense of impending death in both words and actions. Ivy, for example was an eighty-year-old woman—a self-described “foodie” who was very fussy about what she ate and how it was prepared. As she lay dying from cancer, she would have intensive conversations with the cafeteria employee who would distribute and collect the next day’s menu options. As that employee neared Ivy’s room, she anticipated their normal five-minute or so discussion outlining options. Instead, the menu was blank. When asked, Ivy simply replied, “I do not expect to be here tomorrow.” The aide was confused: was she going home or transferring to another unit? Ivy, in a somewhat offhand manner, plainly stated, “I think I will be dead then.” Again, when the aide urged her to make choices, she uncharacteristically said, “Put whatever you want, I won’t be here.” She wasn’t.
I think the sense that we are dying requires little explanation. After all, we learn over the years to sense or to read our bodies. The connections between body and mind, after all, are both subtle and profound. We know when we are getting a cold and when that cold has broken. Our brain interprets numerous messages from our body. We know when we are cold or warm, when we are in pain or when that pain has eased, whether we are getting stronger or weaker. It makes perfect sense that our minds can understand when systems are beginning to shut down and death is approaching. Yet, this sensing of death—whether in words or in acts—is just one of the ways that we communicate nearing death awareness.
Visions of a Place
Another, perhaps less conscious, way of expressing nearing death awareness is through visions or dreams of another place. Here, the dying patient recounts a visit to a place that may have some personal significance—perhaps a relation to the past—or in other cases, a religious theme such as heaven or paradise.
For example, Theresa was quietly resting as a hospice volunteer tidied up a bit. She began to hear Theresa say, “It’s beautiful, beautiful.” Wondering if the comments were directed to her, now arranging some of the flowers that had been sent to Theresa, the volunteer replied, “Do you like the flowers dear?” Theresa woke somewhat startled. When the volunteer apologized, Theresa simply told her not to worry. Theresa explained she was nodding off when, all of a sudden, she felt her spirit soar into the sky. She found herself feeling very peaceful and content. She was surrounded by what she described as bright white clouds. Vivid, beautiful colors shot from and around the whiteness—like laser beams. There was a figure dressed in gold, almost too dazzling to see that Theresa assumed was Saint Peter. “Do not be afraid,” he said, “Not now but very soon.” She told the volunteer she no longer had any fear over her impending death.
Theresa was a member of an Italian American family that was strongly and very proudly Catholic. She joked about how her mother wept when John Paul was named Pope—the first non-Italian in that role for 455 years. Her mother, Theresa quipped, said it was the Roman Catholic Church and the Pope should always be Italian. It was natural that her image of a place would be reminiscent of a heaven that was always a core belief.
For Bob, it was a place from the past. Bob was also Catholic. Now dying from prostate cancer, Bob told me that he knew he was going to die very shortly. He joked that it was time to go to camp. When I queried him on that comment, Bob explained that in the last two days, he had frequent visions of a camp he used to go to as an underprivileged child in Fishkill, New York—a camp run by a charity called the Fresh Air Fund whose goal was to send poor urban children to the country over the summer. Bob had grown up in a highly dysfunctional and poor home. To him, the camp was a beacon of safety. He had attended the camp every summer since he was seven years old. In his adolescent years, he was both a CIT (counselor in training) and then a full counselor. He stayed right through his high school years—as he said, after graduation and before he went to another camp he called “Basic Training.” When I asked him if he thought that he would spend eternity in camp, he smiled and replied, “I think God is getting me ready to go to a safe place. I’m ready now.”
Research by Kerr and his associates 37 found that it was not uncommon that the place reflects a past meaningful experience. To Bob, it was camp—an experience he associated as one of fun and safety. For Adriane, the place she envisioned was also associated with peace and tranquility. During the riots after Martin Luther King was assassinated, she remembered the fear as Adriane and her mother were returning to their Harlem home. Terrified by the chaos around them, they were invited into a local church. As they entered, people were quietly praying. They, too, knelt in prayer. The pastor told the assembly that there would be cots and a soup supper and that anyone who wished to stay was welcome. They stayed, leaving after a pancake breakfast the next morning. She fondly remembered the kindness of the pastor and his wife as well as being so proud that she and her mom helped with the breakfast. As she lay dying, she had a vision of that smiling pastor standing in the door of the church, stating as he did that horrible night, “Come—you will be safe here.”
For Miriam, the place she saw was not like any place she had been before nor had any relationship to any religious beliefs. In fact, Miriam did not believe at all in an afterlife. She described herself as “an agnostic on good days and an atheist on others.” She was the daughter of a Quaker father and a Jewish mother. They had met in one of the displaced persons camps in Europe. Her mother was a Holocaust survivor. Miriam said that any faith her mother had died in the camps. Her father was a pacifist who did alternate service in that war. Miriam occasionally had attended Quaker services as a child, but as she said, “It did not take.” Miriam’s belief in the afterlife was simple and direct. “When you die—that is it. You only live on in the memory of others.”
So Miriam was surprised by the dream she had right before death. An avid gardener, she found herself in a beautiful garden. There were all sorts of flowers, some from different zones that should not have blossomed together but did. The ranges of colors were remarkable. The landscaping was stunning, punctuated by rocks, pools, and gentle waterfalls. As she wandered in awe through the garden, she met a simply dressed gardener. (When I queried as to how he was dressed, Miriam looked askance at me and said, “Like a gardener.”) Miriam complimented the gardener for his work. The gardener replied, “I need help, you’ll be here soon.” I asked her what that meant to her. She replied that she was both comforted and confused by the vision. It was peaceful, she noted—a place she could spend eternity in. I asked if she feared death less now. She replied, again, almost somewhat dazed, “I never feared death. It is part of life—the last part. But this was so peaceful.” Her last words to me were, “Maybe there is more.”
Yet not all these images of a place are positive. In some cases, they can be highly disturbing, leading not to a reduction of anxiety but an increased sense of fear. Richard, for example, was dying of AIDS. He had had a difficult life. He began abusing drugs as a young teenager. He stole to support his habit. He had lived in shelters—thrown out of his home at eighteen years of age—and spent time in prison. Bright and cunning, Rich admitted that he probably did not have one friend or relative that he had not somehow taken advantage of or in some way cheated. As he was dying, his visions of a place were hardly comforting. His dreams were falling endlessly into an abyss. In fact, research by Kerr and her colleagues did indicate that nearly a fifth found their visions disturbing.38
Seeing a Person
Another manifestation of nearing death awareness is to see and even converse with someone—perhaps a relative or friend—that is deceased. In fact, the first scientific accounts of such experiences are near a century old as Dr. William Barrett published a study on deathbed visions as early as 1926.39 Fenwick, Lovelace, and Brayne found that health care workers often recounted such experiences as they cared for terminal patients, and they noted that these experiences often occurred within twelve hours of the death.40
Greyson described three types of these experiences. The first was when they saw someone who had died before—perhaps a friend or a relative. Here, the figure promised to guide them on their transition.41
I have mentioned Mark earlier. Mark was sort of a younger brother to me. When I was in college, I became involved in a sort of big brothers program. I had grown up in Astoria, New York—now a hot neighborhood in the midst of gentrification. When I grew up there, it was very much a working-class area with high rates of delinquency and drug abuse. The program’s goal was to assign college students from the neighborhood as mentors or “big brothers” to younger children deemed at risk for delinquency. As I mentioned earlier, I was assigned a cheerful, towheaded nine-year-old named Mark. Mark, it turned out, was not at risk for delinquency but rather was quite good at it. He prided himself on his ability to shoplift as well as to quickly disable locks and steal bicycles.
Despite all that, we did form a relationship and over time—lots of time—Mark settled down, eventually learning to be a carpenter, marrying, and having a child. Unfortunately, as Mark approached thirty, he developed a rare and lethal form of cancer. I visited often as he was dying. We would reminisce about times together, places we had gone, and his varied misadventures, as well as the people we had both known.
On my last visit, he recounted that he had seen Rob—an old partner in crime. Rob had not grown out of his misdeeds; they seemed to accelerate as he aged. He went from stealing bikes to cars. He had also had a serious drug problem, dying of an overdose some five years earlier.
Mark said Rob had visited and said soon he would come for Mark. Rob told Mark not to worry, they would have fun—not the bad kind—in the new place. They could not steal anything anyway; everything they needed or wanted was there. Later, he told his wife the same story before he quietly and peacefully died that night.
Sometimes it is not a friend or relative but a religious figure that is experienced. To Antonio, or Tony as he liked to be called, it was Jesus who visited him. Tony was a devoutly religious man—he had even as a child dreamed of becoming a priest. But he was drafted into the Italian army after high school. Captured by the Americans and kept in an Arizona POW camp, Tony began to dream of migrating to America after the war—a dream easily achieved.
Now he was dying of bone cancer, writhing in pain. A pain specialist at the hospital suggested palliative sedation—a procedure where the patient remains sedated until death. Tony would not hear of it, as he regarded it as a violation of his deeply religious beliefs. He continually prayed to Jesus for relief. He had a vision in which Jesus appeared to him and said, much as he did on the cross, “Tony, it will be over soon, and you will be in paradise with me.” Though still racked by pain, Tony, soon after he recounted the vision, fell into a coma and died within a few hours. His last words were, “Jesus, take me.”
Others have reported other religious figures such as angels or saints. For Maria, it was the Virgin Mary who told her she would soon be in heaven. Yet it is interesting that these figures seem to align with a person’s religious beliefs. As Kübler-Ross noted, Protestant children never reported seeing the Virgin Mary—a religious icon more prominent in Roman Catholicism.42
However, these figures were not always Christian. People of other faith traditions shared similar stories. John was a Chinese American man and a practicing Buddhist. As he lay dying, he shared a vision with his daughter. A little boy, not more than eight or nine years old with a shaved head and orange robes appeared to him in a dream. The boy put out his hand to John and said, “Come, there is still much to learn.” When his daughter asked about the significance of the dream, John just smiled and said, “Look for me, I suspect I am not finished as a human yet.”
The experience may not even be verbal. One of my clients, Jude, shared with me the story of his mother’s death. She had been comatose, experiencing even in that state a sense of restlessness. He, his wife, and his sister were at her bedside trying, without success, to calm his mother. “Then all of a sudden,” John recounted, “she sat up, thrust her arms open as if to hug someone. She had this huge smile—looked so happy—before she collapsed back in the bed—as if her spirit left her—and died. My sister, my wife, and I would love to know who she saw. I like to think it was Dad.”
A second, even stranger experience, Greyson notes, is visits from people who died near or at the same time as the deceased. Margaret was nearing eighty years old, dying of respiratory disease. She was troubled by a dream she had. In the dream, she saw her brother with her deceased parents ready to welcome her. She asked her beloved brother what he was doing there. “Come on, sis,” he replied, “I would never let you go alone.” The family was shocked by the dream. Not wishing to upset their mother, they had not shared that her sister-in-law had called yesterday with the news that her brother had died of a massive stroke. Greyson labels these “Peak in Darien” experiences after a Keats poem where the Spanish explorer Cortez is shocked as he climbs a mountain in Panama expecting to see a continent but instead sees the ocean.43
Third, Greyson shared one other circumstance, where the visitor is someone who was never known before by the dying person.44 I have seen examples of this twice in my work. In one case, it was a dying man, Paul, who saw a man that he did not know tell him to get ready, it would soon be time. He challenged the man—asking who he was. The man smiled and said, “I am your great-uncle Paul. You were named after me.” Paul had known that he was named after his dad’s brother who had died of diphtheria at four years of age. Yet he only had seen a picture of Paul as a toddler. In the other case, an older woman was visited by a young man who simply said that he was sent to guide her.
Sometimes, it might not even be a person. Terrance loved his animals—having multiple dogs throughout his life. His last vision was a pack of his deceased dogs, mostly golden retrievers, anxiously behaving, each in their own unique way, as if Terrance was now ready to take them out for a walk. He shared that vision with his wife—joking that, in heaven, he hoped he would not have to clean up after them.
Time for Travel
Callanan and Kelley describe a final form of nearing death awareness where the dying patient speaks of travel—catching a train, plane, or boat or otherwise preparing to depart. This was Carlos’s story in the opening of the chapter. Here, though bedbound and near death, Carlos was getting ready to go on a trip.
Tyrone spoke of a trip as well. Tyrone was one of the early pediatric cases of HIV/AIDS. Infected since birth, Tyrone was a medical marvel, one of the early long-term survivors. He was nearing six years of age at a time when most infected children only made it to three years old. His mother, an IV drug user, had died soon after Tyrone’s birth. He never knew his dad. Tyrone lived between what he called his two homes—the hospital ward and a loving foster home where his two dads had long fostered infected children. He was comfortable in both—adored by the hospital staff and by his foster parents both for his ever-cheerful personality and for his true grit in the face of a relentless disease. Now, he had been hospitalized yet again.
Though Tyrone had beat the odds just by living as long as he had in those early years of the epidemic, the hospital staff and his foster parents were still optimistic that once again he might beat his illness, get through the crises, and return to his “non-hospital” home. It was surprising to staff when Tyrone announced as he awoke one day at 5:00 a.m. that he was going home around 8:00 a.m. The staff, he reminded them, needed to pack his stuff and ready his medicines. Concerned that he would be disappointed, the staff gently reminded Tyrone that he was not yet ready to leave but they hoped he would get to go home soon. Tyrone was not upset but insistent; he was going home at 8:00 a.m.—but he said he was not going to his foster home but home to Jesus. The head nurse quickly called his foster parents who said they would get there shortly. Queried, they reassured the staff that they had made no such promises to Tyrone that he could return to his foster home. In fact, Tyrone had asked them last evening to bring one of his favorite games at their next visit so he could play with it in the hospital. After breakfast, Tyrone fell asleep. He died at 8:02 a.m.
Dreams of Death or the Afterlife
Dr. Kelly Bulkeley and the Reverend Patricia Bulkley suggest that dreams may be another way where nearing death awareness is expressed.45 This would hardly be unexpected as the brain is always monitoring bodily systems. It is unsurprising, then, that these physical sensations and the unconscious reactions they evoke might become manifested in dreams. Dreams differ from the visions earlier described in that these occur when asleep and the individual experiencing it as a dream clearly sees it as a dream. We dream often in metaphors. As we are dying, it is not unusual to see the metaphors that Callanan and Kelley found often employed in the dream state and then shared with others—noting the dream.46 So persons who are dying may speak of dreams where they travel, see deceased persons from the past, or even see, in the dream, a vision of the afterlife. Charles was now seventy-four-years old, in hospice care dying of cancer. As an adolescent, he had always dreamed of owning a silver Corvette and traveling around the country. But Charles was drafted right after high school, married after his stint in the Marines, and soon was supporting a wife and three children—all of whom he deeply loved. And even though he knew that his wife would be well taken care of and his children were independent and doing well, he still carried a burden of responsibility. One day, he woke and shared that he dreamt he was driving his silver Corvette with abandon down the highway. When I asked him what the dream meant, he stated that it showed him that he need not worry any more—his responsibilities were lifted. So were his anxieties. His final words to me were that: “while I am not looking for death—it might be a surprising fun ride.”
Other dreams may even be more metaphoric. Belinda was seventeen—dying of bone cancer. In an earlier and unsuccessful attempt to stop the disease, her right leg had been amputated. She described the following dream:
I was in some sort of tunnel or maybe a maze. It was very dark and narrow. I did not have my prosthesis on my leg, so I was holding myself up by using the walls. I was anxious, stumbling forward as fast as I could. Suddenly there was a closed door in front of me. There seemed to be sunlight seeping through. I flung open the door. There was a beautiful garden. I stood in shock. A voice told me to come in and enjoy the garden. I said I can’t—there’s nothing to hold on to and I do not have my prosthesis on my leg. The voice laughed and said you do not need it. I looked down and my leg was there—not the prosthesis—the actual leg!
Belinda interpreted the dream to say both that death was near and not to be feared. After all, she would be whole again in the afterlife. Sharing such a dream then becomes another way to convey death’s nearness.
Explaining Nearing Death Awareness
The nature of science is to interpret varied phenomena using materialistic explanations. That is, the very nature of science means that social scientists have to base their interpretations in what can be sensed within the real world—what can be seen, measured, or otherwise explored. That point of view precludes any consideration of spirits visiting from the other side. Hence any of these visions or other experiences typically described in nearing death awareness have to be hallucinatory in nature. The argument then can develop in any one of four ways.
The simplest explanation is that these experiences are the result of drug interactions. After all, in the final throes of terminal illness, patients are usually highly medicated with a variety of drugs to ease pain and anxiety, as well as drugs to relieve symptoms. The hallucinations are simply a manifestation of the drug interactions.
Second, in this time the body is under great stress—after all, dying persons are experiencing the stress of life-threatening illness as well as the stress of grief as they daily experience varied losses. The mind, it is argued, produces these hallucinatory experiences to relieve such stress.
Third, patients, near the time of death, often have limited consciousness—drifting in and out of varied sleep states. Much like dreams, these states make it difficult for dying persons to identify what is actually happening and what is more dreamlike phenomena.
Finally, and similar to the other explanations, is the reality that as people die, their bodies are beginning to shut down. The brain may not be receiving the oxygen and energy it needs to fully function. Endorphins may be released to assist the body in coping with tremendous stress. In such a state of deprivation and hormonal activity, these hallucinations are thought to be a natural result.
Such explanations indeed have merit. Naturally, even when we are dying, we can still read our bodies. We know when we are getting sick and when we are beginning to mend. We know when we are getting weaker, and we can probably sense the nearness of death.
Yet, perhaps such experiences cannot be as easily explained away. As Dr. L. Stafford Betty, a professor of religious studies at California State University notes, there are compelling arguments that something beyond scientific thought may be occurring. It is interesting, he posits, that even persons who do not believe in an afterlife, such as Miriam, have these experiences. Moreover, Betty adds, in visions of others, the persons are almost always deceased (even if unknown to the dying person), while dreams are more muddled—often mixing the living and dying together.47
The truth is that whatever the explanation, it is not terribly important. The reality is that these experiences have been recorded across cultures and throughout history. What matters really is only what these experiences mean for the person dying and their friends and family. The real question is not whether these experiences are real but how can they be used?
The Opportunities of Nearing Death Experiences
Once we can interpret the symbolic language inherent in these nearing death experiences, we can understand why Callanan and Kelley called them “final gifts.” Often, they offered a sense of peace to the persons who experienced them—a promise of some form of rebirth and reunion—that seemed to decrease a sense of anxiety and restlessness.
Most importantly, nearing death awareness can allow families and dying persons to finish any business—an opportunity to say goodbye, to offer support and comfort. For me, it presented an opportunity to speak with my father, reassuring him of my love and validating to him that he was a good and caring parent. Like many parents of his era, my father was not particularly demonstrative. Only once did he actually tell my brother and me that he loved us—a time when my brother, after a few drinks, pushed him to actually say so. But now, those assurances seemed to come easily to him. He volunteered how proud he was of his children—each in their own way, each for their singular achievements, unique gifts, and particular ways of being in the world. We, in turn, shared our love freely, each sharing our own special moments and memories. It was, I believe, a peaceful death for him and made our grief easier. There was little guilt or regret over things not said and shared.
Sometimes the visions of deceased others may even offer opportunities for family and friends to reconcile with past events. Dr. Wills-Brandon, who investigated slightly under two thousand accounts of deathbed visions, shares a story by the evangelist Billy Graham. He was at his grandmother’s side when she lay dying. Weak and bedridden, she sat up and told her grandson that she had just seen her late husband, Ben—Billy Graham’s grandfather. Ben had fought in the Civil War—losing both a leg and use of an eye. Graham’s grandmother told him that Ben now had both his eyes and legs.48 She was able to die with the sense that she would now reunite with her husband—now whole.
For others, this nearing death awareness may alert family that it might be time to perform any rituals of significance. For John, the Chinese American Buddhist mentioned earlier in this chapter, the vision of the boy monk alerted his daughter to the fact that death was likely to occur soon. She asked him if there was anything she could do to make his passing easier. John instructed her to light a candle and open the window. This way, he stated, his spirit could soar away and not be trapped in the room.
For others, it may be time to perform other types of rituals. Cathy, a nurse, had both read about nearing death awareness and had been with patients who had such experiences. When her mother, Margie, was dying, she told Cathy that she dreamt of her husband—Cathy’s father—who told her they would be together soon. Cathy’s mother then told her to please arrange for the priest to come for the sacrament of Anointing of the Sick—a sacrament that used to be known as “last rites.” Cathy did and with her mother’s consent, she did something else. She organized a “living eulogy” where she gathered the children together with the grandchildren, other relatives, and friends. Much like a funeral—except with the dying person alive, family and friends shared their eulogies, telling Margie what she meant to them and sharing stories in turn both poignant and humorous. Beer and whiskey flowed as well, and Margie said that she always wanted to be at her own “Irish wake.” Two days later, Margie died. Her last words to her daughter were “to do it again” (the funeral). “Who knows,” Margie added, “maybe I’ll enjoy that one as much as I did the first!”
In short, these last moments of life, especially when it is clear that death is nearing, are precious moments not to be wasted. Health professionals, clergy, volunteers—all who work with people at life’s end—need to be aware of this phenomenon of nearing death awareness. They can use their roles to interpret this usually highly symbolic language for families and to empower them to make the most of these last moments. Sadly, little training on nearing death awareness is offered even though health professionals generally observe it.
In the end, it does not matter what generates such awareness—whether it is a stress reaction, an artifact of drug interactions, the body simply signaling to the mind that it is failing, or some door to another life. What does matter is that these events are listened to and validated by others and that families and friends have the opportunities to say a final farewell. This offers families and friends the possibility of reconciliation with the dying person.
In Greek mythology, Charon is the ferryman who brings the newly deceased across the rivers Styx and Acheron to the afterlife. It was customary to leave a coin in the corpse, usually in the mouth, to pay the ferryman for passage. Those who failed to bring the toll were doomed to wander aimlessly on the shores for a hundred years.
Nearing death awareness provides that last opportunity to pay the ferryman. It offers a final chance to say or do what we need to say or do before someone vanishes from our life. It offers the prospect of both an eased death for the person who is dying as well as a less complicated bereavement for those who survive. If we fail to pay the ferryman, we risk wandering aimlessly in our own grief.
32. Maggie Callanan and Patricia Kelley, Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying (New York: Bantam, 1992), n.p.
33. Callanan and Kelley, Final Gifts, 13.
34. Myra Bluebond-Langner, The Private Worlds of Dying Children (Princeton, NJ: Princeton University Press, 1978), n.p.
35. Avery D. Weisman, On Dying and Denying (New York: Behavioral Publications, 1972), 65–66.
36. Barney G. Glaser and Anselm L. Strauss, The Awareness of Dying (Chicago: Aldine, 1965), 64.
37. Kerr, et al., “End-of-Life Dreams and Visions: A Longitudinal Study of Hospice Patients’ Experiences,” Journal of Palliative Medicine 17, no. 3 (March 2014): 296–303, https://doi.org/10.1089/jpm.2013.0371.
38. Kerr, et al., “End-of-Life Dreams and Visions,” 296–303.
39. William Barrett, Deathbed Visions: How the Dead Talk to the Dying (Guilford, UK: White Crow Books, 2011), n.p.
40. Peter Fenwick, Hilary Lovelace, and Sue Brayne, “Comfort for the Dying: Five Year Retrospective and One Year Prospective Studies of End of Life Experiences,” Archives of Gerontology Geriatrics 51, no. 2 (November 2009): 173–179, https:doi.org/10.1016/j.archger.2009.10.004.
41. Bruce Greyson, “Seeing Dead People Not Known to Have Died: ‘Peak in Darien’ Experiences,” Anthropology and Humanism 35, no. 2 (November 2010): 159–171, https://doi.org/10.1111/j.1548-1409.2010.01064.x.
42. Elisabeth Kübler-Ross, On Life After Death (Berkeley, CA: Celestial Arts, 1991), 15.
43. Greyson, “Seeing Dead People Not Known to Have Died,” 159–171.
44. Greyson, “Seeing Dead People Not Known to Have Died,” 159–171.
45. Kelly Bulkeley and Patricia Bulkley, Dreaming Beyond Death: A Guide to Pre-Death Dreams and Visions (Boston, MA: Beacon Press, 2003), n.p.
46. Callanan and Kelley, Final Gifts, n.p.
47. L. Stafford Betty, “Are They Hallucinations or Are They Real? The Spirituality of Deathbed and Near-Death Visions,” Omega—Journal of Death and Dying 53, no. 1 (August 2006): 37–49, https://doi.org/10.2190%2F188Q-BHFK-Q7DM-JHR4.
48. Carla Wills-Brandon, “One Last Hug Before I Go: The Mystery and Meaning of Deathbed Visions.” Paper presented to the Annual Conference of The Academy of Religion and Psychical Research, 2003.