The bereaved experience: Kerr excerpt #21

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The human grief experience is multidimensional, flexible, and personal. Bereaved family members and caregivers learn to adjust to a world without the deceased in myriad ways. What remains a constant, however, is 1/ the higher level of acceptance achieved by the dying and the bereaved alike when they get to witness the life-affirming, material, and transformative effects of end-of-life experiences 2/ the triggering of their own richer emotional and spiritual inner experiences. In our studies, the bereaved describe deriving peace and reassurance from the knowledge that their family member felt at ease and loved in their last moments. For example, the elderly sister of one of our patients shared that “when he told me that he saw his favorite sister (deceased) hold out her hands to him, it made me feel comforted because I knew it comforted him.” Caregivers repeatedly and explicitly use words that denote contentment rather than mourning: “He did find comfort talking to and seeing people who passed before him. He was not afraid or scared – he had told me.”

Many bereaved family members make sense of their dying relative’s end-of-life dreams and visions by drawing on their belief in the afterlife, God, angels, or heaven. That is what the rather agnostic Michele did after her daughter Ginny’s last conversation with God. But how each family caregiver chooses to make sense of their loved one’s end-of-life dreams and visions matters little. What is remarkable is how the meaning making sometimes develops independently of one’s interpretive framework, since Michele was originally agnostic and was swayed by her daughter’s ELDVs. These experiences help the dying and their loved ones alike work through the pain of loss by creating continuity and presence across time and death.

The therapeutic quality of end-of-life experiences extends to the bereaved in ways that can never be fully accounted for if we merely approach them as representations or memories. It embodies, for caregivers as much as for the dying, the possibility of being reunited, and it allows them to adjust to life without their loved one while maintaining a continuing bond. The desire and need for connectivity remain a constant across dying and grieving, death and bereavement.

Michele and Kristin both responded to their child’s death with the same paradoxical disregard for the separation death supposedly entails. They both still talk about and to their respective daughters on a daily basis. They dream about them. They both continue decorating their homes for the holidays for their little girls’ sake. They do it because “Ginny expects it” and “Jess would be upset with me if I ever skipped a year”.

Like Michele, it is in her daughter’s last end-of-life experience that Kristin finds the comfort she needs. In particular, Jess’s vision of her mother’s deceased friend Mary, whom she identified as “an angel”, is what provides Kristin with the reassurance that her little girl’s transition transcended the emotional and physical toll of death.

Michele worked through the pain of grief in ways that echo Kristin’s emotional trajectory. She too was awed and comforted by her daughter’s rich inner world and by the extraordinarily soothing quality of her end-of-life experiences. “She is always teaching me something”, Michele said two days before Ginny’s passing when her daughter was no longer responsive. This too was an extension of the remarkable effects of Ginny’s end-of-life experiences. Michele was left to question her own belief system. “Who knows?” she concluded, throwing up her hands in surrender, “Maybe there is a castle. I no longer know what not to believe.”

Like Kristin, Michele is now moved by mementos, pictures, and toy animals that recall her daughter’s presence. A rainbow appears and makes her smile. Heart shapes in clouds, rocks, and water drops are evidence of Ginny’s presence. She often takes refuge in Ginny’s room which she has left untouched. Bereavement has become a steady and gentle companion, a process and extension of the continuity that Ginny’s end-of-life experiences represented.

In the midst of immense tragedy, Michele has found solace and meaning in the same love and evidence of consciousness that permeated her daughter’s end-of-life experiences and whose cascading influence will sustain her until the day, she says, she too finds her way to Ginny’s “castle.”

As our study on the dreams of the bereaved suggests, patients’ end-of-life experiences seem to find a reflective counterpart in their loved ones’ dreams. Our quantitative study conducted at Hospice shows that many recently bereaved individuals experience vivid and deeply meaningful dreams themselves that feature the presence of the deceased. Prevalent dream themes included  pleasant past experiences, the deceased free of illness or at the time of death, in the afterlife appearing comfortable and at peace, and the deceased communicating a message. These themes overlap significantly with previous models of bereavement dream content. As with ELDVs, the specific effects of these dreams on bereavement processes include increased acceptance of the loved one’s death, comfort, spirituality, sadness, and quality of life, among others. These results support the theory that dreams of the deceased are highly prevalent among and often deeply meaningful for the bereaved who have them. Again, as with ELDVs, a positive growth or transformation in the person have them hinges on the continued presence of predeceased loved ones.

While this study does not assess whether or how the dreams of the bereaved are related to or different from ELDVs, the coincidence in content and effect is remarkable and noteworthy. For example, one participant wrote ‘‘[the dream] put my mind at peace about my brother’s death. I miss him very much, but I know he is in God’s hands and happy.’’ Others described how their dreams helped them to retain a connection with the deceased: ‘‘I feel closer to mom than at the time of her death. At the time I felt cut off. Now feel as if I was reconnected in at least a small way.’’ Some explained how their dreams intensified their feelings of grief (‘‘My sister and I cared for our mother around the clock. The dreams just make me sadder and I miss her when I wake up’’) or support (“My mother speaks to me while I dream. She tells me things about situations in my life and how to handle them. I get to hold my mother in my dreams and get to feel her warmth and love’’). Another participant had a dream of her [deceased] mother walking on the beach and holding the hand of a small boy named Eric. Her parents had previously lost a baby and named him Eric “who had died before Jane was born. Eric was to be our last of three children, but when he died, we had Jane.’’

Like ELDVs, the dreams of the bereaved bring back the departed in moments of transcendence where the consciousness of the recently departed is summoned to bring peace, sometimes resolution, and always love. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Autistic man's ELDVs: Kerr excerpt #20

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

For patients suffering from Alzheimer’s and other dementias, the line between the ELDVs in sleep versus wakefulness is even more blurred than the reality they cannot share. And because people with dementia exist within an unshared world, their dream experiences ultimately remain their secret. Yet these patients also frequently undergo inner changes as part of the dying process. It may be that they heal old wounds, reveal what’s lost or reclaim distant love. We may not be able to collect evidence to prove it, at any rate not of the kind that would withstand scientific scrutiny, but I have seen the process unravel again and again. I have witnessed patients with severe cognitive loss paradoxically experience a vibrant and rejuvenating end of life. Again, we see that regardless of age or cognitive status, one’s sense of self and one’s existence expand as the body and even the brain, fails.

Physicians such as Oliver Sacks have noted that those with dementia have an emotional intelligence that can be unlocked with the right key, such as music for instance. This underscores the error commonly made in evaluating patients and consciousness based on a capacity to reason rather than feel. Their minds may be lost to us, but they still resonate within themselves. Nor can they be separated from their heart and its capacity for love.

Autism too is one of the conditions that often lead to misconceptions about how affected people process the larger meanings of death and dying. Assumptions are made about how they may or may not respond to a terminal diagnosis and what information should be shared. I don’t presume to have answers to these questions, but I have witnessed in such patients a remarkable resilience; an ability to cultivate peace as well as find meaning within their illness.

End-of-life experiences in particular have the potential to help the dying reach emotions that may not otherwise be accessible. This was the case for a patient named Andre, a man with autism, who provided yet another powerful reminder that conclusions and conjectures surrounding end of life can only be accurate if they draw on patient testimony.

Andre was a high-functioning autistic man who had worked as a bag boy at a local grocery store for most of his life. After his parents died, he was cared for by his cousin Lisa’s parents, and years later, when she became a mother of three, he was integrated into her family. Andre would live with Lisa’s family for the next thirteen years until his death at 75, and his purity of heart and joyfulness grounded his strong and easy identification with their children. Lisa’s son Hazen was 3 years old when Andre moved in, and the two connected instantly. They became inseparable, the best of friends, playing nerf guns around the house, communicating with walkie-talkies from different rooms, dressing up for Halloween, carving pumpkins, and hiding under piles of leaves in the yard. Andre loved family trips and Easter egg hunts. His family described him as “childlike’ but also respected his strong sense of independence. He could put together breakfast, make his own lunch for work, buy things in the store with little to no help.

In May 2017, Andre, then 74, was diagnosed with congestive heart failure and bladder cancer. The doctors estimated that it would be his heart not the cancer that would eventually cause his death. None of this was shared with Andre, who went on to live happily and unencumbered until his stroke on December 1st, 2017. Lisa and her husband Merle focused on helping Andre each day to the fullest. At this time, he was using a walker, and had a catheter bag 24/7, but he always smiled and met each day with a sense of wonder. He lived without a full awareness of his terminality. This is why it was so moving to Lisa when a month before he died, he started seeing what she later identified as deceased relatives. It was always during the daytime hours, and she could tell when it occurred because he would stare at the window with big, open eyes. In these moments, Merle noted that Andre seemed to “perk up” with an “excitable curiosity” that he immediately wanted to share.

The first time, it was a man with a hat. Andre didn’t recognize who that was, but it was a friendly presence who waived at him. The next time, it was a man and woman. Lisa would go through old photos with Andre, and he thought the woman he had seen looked vaguely familiar... maybe like a grandmother. His description, however, fit those of her long-lost relatives to a T. The "visits" happened almost daily. He once saw another man taking pictures, which also happened to be his favorite hobby. On another occasion, it was Lisa’s deceased mom who was in the room and whom he pointed to while talking to his second cousin. She was sitting on his suitcase, Andre exclaimed with a laugh. Like over two thirds of our patients, his ELDVs included themes of “preparing to go”, either through travel or packing.

To Lisa, Andre’s most moving vision was the one he had of her nephew Lucas as a boy. Lucas had died at almost 6 years old from an aggressive form of leukemia. He was the same age as Lisa’s daughter Gabrielle with whom he had grown up. The two kids were inseparable, and their favorite thing in the world was to catch butterflies. It was fitting Andre’s inner experiences would reflect his fondness for children.

Andre’s vision included a child chasing butterflies. But it meant so much more than a snapchat of a past attachment. It also carried a message which he matter-of-factly relayed to Lisa in the following words: "He told me that he had died". This was how his end-of-life experiences most effectively familiarized him with the imminence of a death he had not been told about, by making mortality as conceivable and harmless as chasing butterflies. Andre lived these pre-death experiences as if they were natural extensions of his everyday life. He never paused to wonder whether he was dreaming. He didn’t ask who these people were. He was not worried about what this could possibly mean. He just knew at an intuitive level that these were real and positive experiences that made him feel good. He felt secure, surrounded, loved. And he giggled.

For Lisa and Merle, being able to share Andre’s end-of-life experiences, sometimes through the photo albums and pictures in which he recognized a face, was an unforgettable time of togetherness. Their daughter Gabrielle was similarly moved; they allowed her to revisit her pre- teen years with her beloved cousin Lucas without reliving his unexpected and tragic loss. The whole family found comfort in knowing that Andre was blessed with end-of-life experiences that helped him transition with what he cherished most, his sense of belonging. Lisa commented that while “so many are on drugs for pain at the end, Andre was not”.Andre’s last inner experiences were not only comforting to him but, in Lisa’s words, also “welcoming”. He was “fully awake” up until two days before death.

Whereas most of us exist with clear definitional boundaries between what we perceive as reality and what our inner life and unconscious tell us, Andre moved seamlessly between the two, through the consciousness of relatives who came back to soothe him in his ELDVs. For him, pre- death dreams were less about a new, emerging consciousness that had to be reconciled with his surroundings than an extension of the love and supportive people that had always defined his life and relationships. Andre’s inner experiences represented a continued reflection of who he was through consciousnesses that merged with his. His persona never varied with circumstance and his disposition remained as beautiful as it was true. His was a journey through grace.

That patients with cognitive impairment have as lucid and meaningful ELDVs as neurotypicals not only speaks to our inherent humanity, but it also suggests that consciousness exists regardless of the cognitive differences that surround it. 

 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

 

 

Dementia recedes at end-of-life: Kerr excerpt #19

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

Although it is true that the details and facts of much of their earlier lives may be lost, the defining emotional richness of having lived often persists in the inner world of those with brain disorders. It is not uncommon for an Alzheimer’s patient to remember the color of the gown they wore to their high school prom and not recall what they ate for breakfast. That is because dementia impairs the ability to form new memories. The disease is unusually cruel for people like my colleague and friend Dr. John Tangeman, whose mother suffered a traumatic early life and was therefore cursed to relive a painful past rather than her more hopeful and forgiving present. 

 

Gerd Vaagen was born in 1925 in Aalesund Norway to a Sea Captain and a housewife. She had an idyllic childhood, which included Alpine skiing on magnificent mountain ranges in winter, and aquatic sports and sailing in the fjords during the summer. Gerd was a freshman in high school when the Nazis invaded Norway on April 9th, 1940. The 5-year occupation by the Wehrmacht led to German-imposed food shortages, the wide censorship of the press, and a blatantly improbable Nazi propaganda that tried, for instance, to rebrand the well-known “heil” salute as an ancient Norwegian tradition dating back to the Vikings. Gerd witnessed horrors that would haunt her for the rest of her life. She saw her school principal being summarily executed when he was caught with a radio transmitter. She lost numerous friends who had become involved in the Resistance. Her family suffered from what bordered on famine. 

 

Tragically, Gerd’s life was marked by continued trauma and loss after the war. She married her high school sweetheart Rolph only to lose him, shortly after their marriage, to a sailing accident. In 1954, in an effort to leave the past behind, Gerd left her family and friends to travel to the United States, where she eventually remarried and settled in Buffalo where she had two sons, the younger of whom, Thomas, died of leukemia at age 3. When she turned 52, Gerd’s second husband died unexpectedly, and the family that was once four was now two. 

 

Gerd’s second son, my colleague John, remembers to this day his mother’s lifelong grief as well as her anger and bitterness toward the war and those who waged it. Family gatherings used to begin with pleas to limit the reliving of Nazi atrocities. The trauma of the war consumed much of her identity and only worsened with the loss of her husband, John’s father. Early on in the course of her dementia, Gerd became ever more obsessed with memories of the war, so much so that she believed Hitler himself was directly to blame for any frustration that occurred during the day, from a meal served cold to a lost TV remote. 

 

Dementia is particularly challenging for close family members who progressively lose the person they once held dear and no longer recognize. They watch powerlessly as their relative gradually becomes a shell of their former self. John could not help but feel a sense of abandonment in his mother’s absence. He felt robbed of his relationship with her, so much so that he began grieving his parent’s loss long before her death. As the years past and death neared, an unusual transformation took place that gradually erased the bitterness and anger that had so dominated Gerd’s life. Hitler’s ill-doings were forgotten, and the terrors of the war gave way to an extraordinary sense of composure. Gerd also became uncharacteristically pleasant and demonstrably affectionate with those providing care. Instead of living within the confines of past anguish, she now spent hours staring lovingly at the portrait of her deceased son Thomas. John would often find his mother blowing kisses to his late brother’s picture, recalling the good years, and professing her undying love. Gerd was reclaiming long-departed son.

 

As her dementia progressed, the burden of her life’s memories were lifted and she seemed to be the person she was before her lifetime of trauma. Her transformation was so complete that she would become frightened at her own image in the mirror, which she referred to as the “Crazy Lady”. John would eventually have to cover the mirror with a cloth. She was now so anchored to a distant past that she could no longer recognize her own 85-year-old self’s reflection, or maybe she rejected what she saw as a representation of her damaged soul.

 

Several weeks later, Gerd died, peacefully, within a distorted notion of reality, but returned to the one memory that had released her from anguish and brought her closer to a less damaged sense of self. Parts of GERD’s story is captured in episode five of the Netflix docu-series Surviving Death [https://www.netflix.com/title/80998853]. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Vision of deceased aunt: Kerr excerpt #17

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

No words can adequately describe the relief on the face of a parent who watches their dying child go from fear of the unknown to acceptance. For Michelle, it was her daughter Ginny’s last dream that made her realize that, while the end was near, it would be a peaceful one. Indeed, it was following her pre-death dream about God that Ginny stopped calling out to Michele every five minutes and started sleeping soundly. It was also in its wake that Michele herself felt inexplicably calm and settled, so much so that she finally found the strength to inquire about funeral arrangements that would honor her daughter’s legacy.

Ginny told me about the shadows she’d sometimes see flitting around her when she woke up at night. They used to frighten her, but after one particular dream
experience, she started finding them comforting. The shift occurred during an MRI when Ginny fell asleep inside the pulsing machine and had a vision of her beloved Aunt Mimi, who had recently died. Like Jessica, Ginny did not have or need a complex vocabulary for dying, so she imagined a new reality based on the language and imagery she had at hand. In her dream, she saw her aunt in a castle “with a baby in the window, and you can see the sun through it.” Ginny described her castle as ‘a safe place’ for Aunt Mimi as well as for Grandma Rose, who had also died not long ago. Ginny could feel Mimi hugging her and whispering in her ear, ‘You’ve got to go back down there and fight.’ When she woke up after the MRI, she was almost euphoric and proclaimed to her mother: “I’m going to be okay, I’m not alone.”

Both Ginny and Jess were met with loved ones who provided them with what their actual world could not – the opportunity to be made whole again. They knew that they would be leaving the reality of the living but only insofar as the living fail to recognize the connectivity that imposes itself as real through ELDVs. In their alternative world, the one that encompasses both the living and the dead, the knowledge of impending death is seamlessly integrated within the certainty of love, and continued life.

Children may lack language for death or a full understanding of mortality, yet they innately have deep inner processes at life’s end that not only inform and guide them but enlighten and expand their sense of existence, both present and beyond. All this suggests that consciousness is not only inherent but vibrant regardless of age and years of physical existence prior to physical death. The cases illustrate that the consciousness of children is rich in sense, perception, resonance, memory and emotion; like that of adults, it can accommodate the departed and give them voice and countenance, sometimes in ways we don’t expect, all the while ensuring that the dying child is still living vibrantly even as her body fails. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

13-year-old girl's ELDVs: Kerr excerpt #16

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The power the resurrected consciousnesses in ELDVs have in facilitating the dying process as well as the grief of those left behind is at no time more resonant than in the case of the passing of young children, whose innocence defies understanding. Children have an intuitive ability to understand when death is imminent, including when the reality of it is kept from them. It is often in the show-not-tell of their dreams and visions that they get informed and inform us.

I remember meeting thirteen-year-old Jessica. As I walked into her room, trying to be the doctor I thought she would want me to be, I quickly realized that no level of experience would match her innocence, or the innocent wisdom reflected in her ELDVs. Her consciousness was not clouded by any of the considerations that often darken an adult one. She dreamed in distinct tones and textures, which not only created awareness of her impending death but also secured her in love. The knowledge of death that adults first experience as grief and sadness was to Jessica an intuition reframed by her ELDVs into sensory images of joy, color, warmth, and security; what we perceive as separation, she experienced as a loving reunion. Whereas we obsess about the border that separate the living from the dying, Jessica did not so much as see a distinction between her immediate world and the imaginary one of her dreams and vision. (Link to Jessica Interview Video: https://www.youtube.com/watch?v=qCMtnkoxgs0.)

Where I was bracing myself for an excruciating conversation, I instead encountered a bright-eyed little who was eager to chat about her day, her mom, her pets, and her dreams. Jessica did not pause to mourn the life she would not get to live, or to talk about the career or kids she would not have.; she had no regrets to mull over, or could-have-beens, or missed opportunities to work through. She was too busy living in the now, and her ELDVs were part of that present, an extension of the life she was living and where the dead roamed as freely as if they were visible to all.

Children’s end-of-life experiences, like those of other patients, feature ‘loved ones’ who come back to them. The difference is in the lack of questioning and of the boundaries with which we preoccupy ourselves. Recurring dreams are lived as certainties, as if they are actual visions, visible in this world as well as in theirs, because the two worlds are one. It is not that they cannot tell which is which but that they know they are inseparable, an extension of one another. It is not a matter of failed perception but of a transcended one.

Jessica went on to dream about Mary, her mother’s best friend who’d died at 35, when Jessica was only 8: “Mary is one of my mom’s best friends who passed away from leukemia. I think I was pretty close to her, and she was very close to my mom. I liked her. She was very nice. I’d seen her in my mom’s room. Coming up the stairs, I was going into my room and stopped when I saw from the corner of my eye something playing with my mom’s curtains. She had her favorite shirt on, my mom told me that it was. Because I told my mom it was a grey and blue, checkered flannel shirt.” 

Jessica was the only child of a single mother, which left one last uncertainty once her concern about dying had been resolved: ‘What will I do without my mom?’ The vision of this mother surrogate, her mother’s best friend, in her mother’s room, brought tremendous peace to her. She felt “relief and happiness”. She continued, “Mary was a very strong person, and I know that I am strong, and my mom tells me all the time that I was, am like her.” Kristin, who never left her daughter’s side, reminded her that “You told me all the time that: ‘Mom I saw an angel,’ and then you were able to go to sleep.” “Yes,” Jessica nodded, “I was able to go to sleep... it was really comforting, and I was not afraid of it at all.” Again, ELDV’s typically address our individual needs or the wounds that need tending.

Until Jessica, I could not imagine that children would have access to their own set of tools during the dying process. I assumed that a young mind was not fit to handle a conversation about life’s end, and I failed to appreciate the sophisticated ways in which they may already have had one. Jessica had an understanding of death that exceeded anything I could have imagined; she created connections we could not have given her, in details she should not have remembered.

A child’s innocence goes infinitely deeper than ignorance. Unbeknownst to her, Jessica’s ELDVs were teaching her, as well as her caretakers, how to cope with the inconceivable. Most importantly, for her mother, they helped initiate the process she could not consciously accept, that of letting go. But it was not of her daughter that Kristin had to let go—she could never do that--it was of denial.

Mother and daughter shared an unspoken language and a spiritual bond that have carried over to this day. Six years after her daughter’s death, Kristin still feels Jessica’s presence. She still decorates her house to fit the themes of each coming holiday because “Jess would not have it any other way”. She still cares for her little girl’s spoiled and overweight orange cat Lulu, who continues to wear the silly ornament Jess once attached to its collar. She still smiles at the memories and the presence she continues to feel alongside her. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Nightmares of dying WW2 soldier: Kerr excerpt 14

Dr. Christopher Kerr writes of dying patients having dreams or visions that may help them find peace after reliving horrible repressed memories:

 

Sometimes, ELDVs uncover aspects of a patient’s past that they had long hidden from view. This was the case for John Stinson, the 87-year-old man who had fought his whole life to suppress his experience of war. John had never told his family about the horrors he had witnessed during his rescue mission on the shores of Normandy. He suffered silently until his final days, when distant memories fought to surface.

It was through John’s end-of-life experiences that his family got to meet the man they had never known of, the 20-year-old soldier who would one day become their father. “I learned more about my dad in the last 2 weeks than I did during his lifetime”, John’s son explained while reminiscing about his father’s end-of-life reckoning. His sister corroborated the sentiment: “My brother (as well as the rest of us) knew very little about my father’s war experience. He rarely spoke of that time in his life. Some of what we learned in those last few weeks of his life we had never heard before. He just never really talked to us about it!” They may have been in the dark about the details of the past their father was finally revisiting, but not about the positive outcome of what transpired on his deathbed. Several years after their dad’s passing, the account of their father’s peaceful transition still brought tears of gratitude.

John was only 20 when he enrolled as a gunner on the SS James L. Ackerson which entered Normandy beside the USS Texas. He was and would always remain a proud Texan who took his duty as a soldier to heart and believed in the ideals of his country. On June 7, 1944, he was part of the Infantry Division that was sent ashore to Omaha, the bloodiest of the D-Day beaches. Their assignment was to retrieve the soldiers who had been isolated from the rest of the forces ashore. The mission was successful, and the landing craft came back with the wounded Rangers they had been sent to rescue. Still, John could never wipe away the vision of the bloodied beach strewn with the mutilated bodies and floating limbs he saw upon landing. This was the experience in the war that, unbeknownst to his family, was going to haunt him for the rest of his life.

As he lay dying at Hospice, John was assailed by nightmares about the fallen American soldiers he could not save: "There is nothing but death, dead soldiers all around me." I had witnessed people in a state of fear before, but John was not just frightened. He was terrified. His terror was palpable. I had never been able to adjust to the idea of a young man facing the horrors of war, the possibility of death at life’s beginning, but watching John return to that site of terror a second time as an old man defied words. He described his nightmares as so intensely real that they felt embodied. He could not overcome his pain, and his dreams reflected it.

This is why the complete transformation he underwent a few days later was all the more remarkable. I went to see him, and he was visibly comfortable, even at peace; he could sleep, he said smiling. He credited two of his more recent dreams for this welcome development. In a first joyful dream, he had relived the day he had finally gotten his discharge papers from the military. His second dream sounded more like a nightmare, but to him it was anything but. He dreamt he was approached by a soldier who had been killed on Omaha Beach and had come back to tell him: “Soon, they are going to come and get you.” John instinctively knew that “they” referred to his fellow soldiers, and that the dream was about reuniting with his comrades, not judgment. He finally had closure. He could close his eyes and rest.

Far from denying his reality, or his war, John’s ELDV’s recast these in such as to grant him his hard-earned peace. The soul of that courageous 20-year-old boy that had fought the ghosts of war for 67 years was finally released from his sense enormous obligation and from its injustice. John’s story exemplifies the process through which even the most difficult dreams can provide substantial psychological or spiritual benefits to the dying patient. For him, the tortured memory of the deadliest of the D-Day assaults morphed into the site of the very military camaraderie he thought he had betrayed. He needed to be released from the obligation he had been unable to fulfill and from the overwhelming shame he could not escape. Most importantly, he needed to forgive himself for his inability to save his brothers in arms. Thankfully, their consciousness returned allowed him to do just that.

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

ELDVs of hurting others: Kerr excerpt #13

Dr. Christopher Kerr writes of dying patients having dreams or visions of relationships with relatives, friends, and victims of the patient's violence:   

End-of-life experiences do not always occur in a context of love, togetherness and seeming purity of mind or intent however. In fact, they occur irrespective of the life led or rather as an extension of it. While devoid of judgment, the capstone they provide is in keeping with the type of existence each individual lived: people die the same way they lived. In Dwayne’s case, a 48- year-old patient who was dying of throat cancer after a lifetime of substance abuse, the end-of- life experiences that would bring him to consciousness were as violent as the life he had led.

The Dwayne we admitted to the Hospice inpatient unit was a puzzle: he was charming, funny, sociable, warm, and completely unfazed by the life of delinquency and crime from which his disease provided a reprieve. He had lived “ripping and running” as he put it, but his demeanor was that of a person with a clear conscience. He was not known as a violent man, even though he had killed two men in self-defense. And although the courts acquitted him on both counts, it was hard to reconcile his past deeds with the casual nonchalance that was now his trademark. He acted as if his actions did not define who he was.

Despite his weakened bodily condition, he jigged and jogged when he shuffled across the hallway floors, even as he had to lean on his medical walker for support. He would say things like “everything is gonna be ok man, God loves you” or “We are on a roll man, we can go to the mountain”. And with his inimitable cheerful and beaming smile, he would add “but I may need another cold one”. It did not take long for me to understand that his casual manner was actually a survival mechanism. If Dwayne was carefree and seemed to float on clouds made of jokes and funny asides, it was not because he didn’t care. He did not have the luxury to do so. He had spent a lifetime living on the street and relying on hard drugs to counter the stress, fear and pain that came hand in hand with it. His life had been about substance abuse since he was 16 years old. The only thing that mattered was scoring the next hit and avoiding the dull and numb feelings that overtook him when the effects wore off.

For Dwayne, the drug detoxification that came from being physically confined with terminal illness did not change his outlook on life. His survival instincts remained in high gear, all the more so since he was terrified at the prospect of being sent back to “the street,” a place overrun with malevolent and violent people, constant threats, injustice, crime, fear, and pure terror. The Dwayne who arrived at Hospice could not look back. Resurrecting the past was too risky an endeavor for a man who had finally reached a place of safety and physical comfort. It would have meant processing the irreconcilable, the abandonment, hunger, injustice and murder.

In avoiding his demons, Dwayne was experiencing end of life much as he had lived, by guarding himself from the shame and guilt that overcame him were he to glance back at his failures and crimes. It was ultimately his distressing ELDVs that would bring him the awakening and awareness he needed, albeit just under the wire. In his most troubled dreams, Dwayne was grabbed and stabbed at the site of his cancer: “It was like I was fighting somebody. I probably done something wrong to somebody on the street in the past, and now they caught up with me, and now they know my symptoms. It was like they were jigging the knife, trying to cut off my neck where the cancer was at. That is how I was feeling. It stopped but I still couldn’t let my shoulders down, I was in pain”. Dwayne experienced this violent dream as an avenging attempt on his life.

When he told the attending nurse about his stabbing nightmare, she reassured him that this was probably nothing, since “a lot of people talk in their sleep”. But Dwayne would not have any of it. “No, this was real,” he insisted. The nurse inquired if he needed some medication, and he nodded “because this nightmare I just had was hurting my neck anyway”. Hearing him describe the real-life effects of a wound that was inflicted in an ELDV was one of the most heartrending illustrations of the concept of “total pain” described by Hospice pioneer Dr. Cicely Saunders. It dawned on me that the dying patient’s pain was even more multidimensional than originally conceived: it includes not just psychological or emotional turmoil but also physical pain. And ELDVs strike such a cord in the patient near death that the very line between bodily reality and the spiritual world comes undone in the process.

Dwayne’s recurring dreams and visions led to a radical shift in his demeanor and attitude at life’s end. This became clearer when Dwayne was filmed for the documentary on end-of-life experiences (Link to Dwayne Interview Video: https://www.youtube.com/watch?v=1B05llRYXeI). He was on camera and was just about to tell us about his recurring dream when the man whose sashaying and quipping was legendary at Hospice, started sobbing uncontrollably. Nothing used to faze the Dwayne we knew, everything was cause for laughter, and here he was, an unrecognizably vulnerable soul who was crying, trembling, and shaking, while talking in an unbroken stream of tears and words we could neither interrupt nor bear to hear. It was the distress with which Dwayne was sharing his end-of-life experience that was overwhelming. Dwayne was finally allowing himself to confront rather than evade. He was now a soul in search of redemption, talking about his cancer as karma and regretting his life of ‘ripping and running’: “One thing I do know is I hurt a lot of people and I feel bad about doing it, you know, very bad and I just hope and pray that they do forgive me because they see what influence I was under at the time when I was trying to scheme and scam and be sick with them.... I am not gonna lie to you, I have used drugs in my past, that is not a good thing man, ... I don’t want to go back to that lifestyle. It is not good for you, it is not good for me.... And I just pray to my higher power that he keeps me away from it with the help of my peers, hospice, you know, I am not really gonna say friends in the street. I had no friends because 95-98% of my friends were doing the same thing I was doing.”

Dwayne was facing his day of reckoning. He went on to have variations of this recurring dream, recounting that “the guy was pouring acid down my neck, burning a hole in my neck.... It is because my past is coming back at me from doing wrong. Because I am not gonna say I am a perfect guy when out there because I was ripping and running the street doing wrong to individuals, I should not have...”. There was no doubt in Dwayne’s mind that his subjective experiences were making him pay for his past mistakes and misdeeds, and pay he was willing to do, provided he could make amends to the person he cared most about, his daughter Brittany.

Bereaved family members also benefit from the effects of their dying relative’s end-of-life experiences, sometimes years down the line. After being estranged from his daughter Brittany, Dwayne went through a transformation at the threshold of death that carried over into his daughter’s life. Indeed, their deathbed reunion and the forgiveness that flowed from their love is what would eventually help his daughter forge a commitment to turn her own life around. The incidence of drug abuse among children of drug addicts is disproportionately high, and his oldest daughter had not escaped the trend. In honor of the father who had changed the course of his life at the eleventh hour, she set out to do the same. Her dad’s love was restored to her through the coming together of consciousnesses that were once embroiled in hostility but that were now enacting a much-needed reckoning. She herself credited her father’s ELDVs for the transformation in both of their lives, and this awareness led her to a regained sense of self.

Despite a lifetime of denying certain realities of his life, Dwyane’s consciousness not only returned but did so with a vengeance. His ELDVs were more than just memories, they were well thought-out and organized processes that were not just retold but relived, and whose material and ripple effects were felt across lives and beyond his and others’ death. He was not only lucid as he experienced them but described feeling the sensation of being stabbed. The lives Dwayne had taken and tried to forget could not be forgotten. They continued to exist as part of Dwayne’s existence, within a consciousness that was shared between and across lives.

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

 

Dying wife with dead husband: Kerr excerpt #12

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:  

There are times when End-of-Life Dreams and Visions (ELDVs) transcend the boundary that separate the living from the dead to meet spiritual and emotional needs, those that tie couples and that restore bonds. Sometimes, ELDVs do not interrupt the reality of the bereaved so much as replace it. This often happens with elderly couples who, following a lifetime of togetherness, cannot shift to living without their other half. And so, they don’t. Instead, they maintain their unbreakable bond through and in end- of-life dreams and visions. Attention wholly switches to this other world where they go on co- existing with their deceased partner and can feel whole again. That is when bereavement does not involve a before and an after, only a different, a more so, and a with.

After Sonny’s death, Joan kept her husband alive through recurring pre-death visions that occurred in her dreams as well as when awake. Her health began to deteriorate rapidly, but her end-of-life experiences and visions helped her, as well as her family, cope with the deep wound left by Sonny’s loss. When Joan returned to her daughters’ home from the Hospice Inpatient Unit, her dreams kept Sonny alive. During many nights, Lisa and her family could hear Joan calling out to her husband: “Come get me. I miss you! Sonny, come and get me!”. The strength of these dreams would soon carry from sleep to wakefulness and Joan, fully lucid, would often claim to see Sonny in the room.

Joan and Sonny’s story exemplifies the uniqueness and the intensity with which end-of-life dreams and visions are experienced as a site of togetherness. Joan lived for two months beyond Sonny’s death but never without him. She would call out to him every night and have visions of him every day. After Joan’s death, Lisa and her family sat down for a filmed interview (Link to Sonny & Joan Family Interview Video: https://www.youtube.com/watch?v=kYnHPTmSmLo).

As seen in the film, Joan’s ELDVs not only kept Sonny present as her husband but was also shared with Lisa, their daughter and caregiver. As a result, it was only when Joan passed that her daughter finally took stock of her loss, a now double one. Lisa felt that her parents both died but only when Joan did because their consciousness was shared, whether physically present or not. She only realized the full impact of her mother’s ELDVs when her mother’s visions no longer embodied her father’s felt presence. Joan’s own consciousness had been heightened to the point that Sonny was present, not just for her but for Lisa too; this awareness was shared.

And when the time came for Joan and Sonny to be reunited and for Lisa to take stock of the reality of her double loss, the knowledge that their remarkable love story had survived death helped their daughter come to terms with her own grief and sorrow. Her bereavement process was aided by the recognition that her parents’ bond had remained unbroken thanks, in large part, to her mother’s ELDVs. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Dreams of deceased grandpa: Kerr excerpt #11

Dr. Christopher Kerr writes of dying patients having dreams of renewing friendships with deceased friends and relatives: 

Sometimes a patient’s consciousness may be intact without including the kind of obvious awareness of one’s surroundings the definition of the term implies. Sometimes, a patient’s consciousness is not visible to others. This was true in the case of Sierra, a vibrant young lady who was only 28 years old when she was transferred from our local cancer hospital to our Hospice Inpatient Unit (Link to Sierra Interview Video: https://www.youtube.com/watch?v=z8NrYTyRaJI). Upon transfer, it was clear that Sierra had only days to live yet seemed in denial about the severity of her condition; there had been so little time for Sierra to process the implications of her being transferred from hospitalized treatment to Hospice. Despite unrelenting pain and a rapidly deteriorating condition, she insistently told her puzzled Hospice nurses and doctors that “I am going to beat this.”

We prioritized symptom management, but it was also urgent to help her and her family understand that her time was limited, so they could find some level of acceptance and the words to be reconciled with the reality of physical death. We were particularly concerned for her young son. We had come to understand that end-of-life dreams and visions help patients come to terms with death, but in Sierra’s case, we naturally assumed that her denial meant the absence of such experiences.

Sierra was struggling to reconcile the different realities that were clashing around her. She needed clarity about her condition so that she could acknowledge the inevitable. This was something that the science of medicine alone could not bring forth. It was also one which, unbeknownst to her caretakers, Sierra’s end-of-life experiences had already initiated. They were preparing her for the reality which her loved ones were so hesitant to put into words, and they were doing it by bypassing language altogether.

Her care team became aware of Sierra’s inner processes only after her physician, Dr. Megan Farrell, asked Sierra if she had had any dreams. Fully lucid, Sierra replied “Yes, strange dreams and they don’t always make sense. Sometimes, I don’t remember them very well” Dr. Farrell continued, “Sierra is there anyone you have been dreaming about or someone in particular who comes to you in your dreams?” A long pause ensued. With eyes half-opened, Sierra looked over her doctor’s shoulder, smiled and whispered, “Hi Grandpa!”

Sierra had been dreaming of her deceased grandpa Howard, an army veteran and a man who had loved and nurtured her. But now, in the stillness of her Hospice room, surrounded by loved ones, what Sierra’s vision represented was so much more than just a recurring dream. It was a state of being that brought clarity and made words like “dying” and “terminal illness” irrelevant. When her mother Tammy asked: “Sierra, what is grandpa saying?” Sierra answered “He says he is proud of the young woman and mother I have become... He does not want me to suffer.” We had entered the room thinking Sierra may need an intervention but were instead subjected to one, a reminder that the best lessons are often witnessed, not given.

Sierra’s experiences at the end of her life provided her with a sense of unconditional love and guidance at the threshold of death. And for her mother Tammy, that awareness helped usher the sorrow she had not given herself permission to feel. ELDVs often pull together multiple losses and consciousnesses, those that occur across generations and wide swathes of time, across the living and the dead, for the dying as well as their loved ones. As can be seen in the video, Sierra’s care team were left in awe of an unseen but powerful exchange between the living and the dead. Sierra’s grandfather reached Sierra in a way the clinical team could not. 

 

 
Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.