A scientific paradigm shift: Taylor excerpt #2

Greg Taylor writes: The people of every time have tended to regard their science as the apotheosis of all knowledge, but time and again history has proven that not to be the case. In ancient times, we had the very sensible, to the eye of the observer, Ptolemaic system of astronomy which described the strange motions of the planets that revolved around the obvious center of the cosmos – Earth – only for it to be replaced by the heliocentric model of Copernicus. In the late 19th century, many scientists believed that the field of physics was almost complete: “The more important fundamental laws and facts of physical science have all been discovered,” experimental physicist Albert A. Michelson announced in a speech in 1894, “and these are now so firmly established that the possibility of their ever being supplanted in consequence of new discoveries is exceedingly remote.” A little more than a decade later, both quantum physics and relativity had completely upturned our models of how the cosmos works.

In his seminal book The Structure of Scientific Revolutions, physicist Thomas Kuhn described these always incomplete and erroneous to some degree scientific frameworks that we live and work within at a certain time as paradigms, and the change from an outdated paradigm to a new one he named a paradigm shift. Within a paradigm, a certain model of ‘what reality is’ exists and dominates – and is somewhat self-supporting, as those embedded within the paradigm often believe that model to be the only possible ‘reality’, and thus reject alternative models and anomalies that don’t agree with that model. Over time, however, those anomalies accumulate, until a scientific revolution occurs that upends the previous model and supplants it with a new one.

In this essay, we will present a large set of anomalies that challenge the current scientific paradigm – in which physical matter is ‘reality’, consciousness is just a by-product of the brain, and we do not survive death – and suggest a new one.

The reason most people are not familiar with this mass of extremely convincing evidence is, as Kuhn noted, because ‘normal science’ is “predicated on the assumption that the scientific community knows what the world is like,” and it thus “often suppresses fundamental novelties” because they are subversive. So, in reviewing this evidence for the survival of consciousness beyond death, one of the highest hurdles that must be cleared is the bias of modern science’s negative opinion on the possibility. And one of the tactics used in suppressing the evidence, by skeptics invested in defending the current paradigm, is to only accept evidence from multiple replications of lab studies by scientists using ‘blind protocols’ (and, truthfully, even then they probably still wouldn’t accept it). However, this is not generally how science actually works when it comes to spontaneous, anomalous phenomena. In these areas, often it is eyewitness testimony that provides the most convincing and useful evidence. 

 

Greg Taylor, “What is the Best Available Evidence for the Survival of Human Consciousness after Permanent Bodily Death?” An essay written for the Bigelow contest addressing this question. I am presenting excerpts without references, but this essay may be downloaded with all its references at https://bigelowinstitute.org/contest_winners3.php.

Evidence for life after death: Taylor excerpt #1

Greg Taylor writes: On Christmas Day, 2011, Ben Breedlove passed away at his home in Austin, Texas, from complications of hypertrophic cardiomyopathy (HCM), at the age of just 18. Diagnosed with HCM at 12 months of age – a condition in which the heart muscle is abnormally thick, making it more difficult for it to pump blood – Ben had already cheated death on a number of occasions throughout his life. Less than three weeks earlier, paramedics had rushed to his school and used a defibrillator to revive him after he had collapsed while walking between classes. But on Christmas Day, there would be no return from death.

Remarkably, though he lived his life in the shadow of the constant threat of sudden death, a week before his passing Ben made clear to his family that he was no longer afraid of it. At a family gathering the day after yet another cardiac event, Ben – a committed Christian – said a prayer for those closest to him: “I pray that my family wouldn’t be sad or scared for me anymore, because I’m not sad or scared. I pray they would have the same peace that I have.”

Ben’s lack of fear was the result of a strange experience he had while the paramedics were working on him after he had collapsed at school. After he passed out, Ben realized he could still see and hear what was going on, and just as the paramedics were preparing to use the defibrillator on him, he suddenly ‘awoke’ in a white room with no walls, “a brighter white than he could ever describe that seemed to engulf his surroundings in every direction.” In this never-ending whiteness, Ben “listened to the most quiet he had ever heard in his life.” He found himself in front of a full-length mirror, and as he stared into it, realized he wasn’t just looking at his reflection, but was...

...looking at his entire life. In a sense of time that Ben could never explain, he stood in front of that mirror and watched his entire life, every moment he had ever experienced, play out in front of him in real time. Yet somehow it went by in an instant. In that incomprehensible moment, Ben felt proud of himself, of his entire life, of everything he had done.

Ben was asked, “Are you ready?”, to which Ben – assuming he was going to heaven – replied “Yeah.” After hearing the words “Go now!”, Ben woke to find himself back at his school, being resuscitated by the paramedics.

Ben had undergone what is known as a ‘near-death experience’ (NDE). This strange phenomenon, recorded countless times throughout history and in different cultures around the world, occurs when a person has a brush with death and undergoes an experience that appears to give them a glimpse of an afterlife realm.

Ben’s sister Ally recounts that after this NDE, “it was clear that Ben had a new resolve... in some ways, he had crossed over already; he had seen the other side and formed his opinions about it; he accepted it...he was content with that possibility, almost happy about it.”

When Ben’s father asked him to talk about the peace he felt during his NDE, Ben described it in terms of Philippians 4:8: “It’s just like the verse says (‘And the peace that surpasses all understanding shall guard your hearts and minds in Christ Jesus’). You can’t describe it. You just have to be there.”

Ally recalls that, following the NDE, in a quiet moment together Ben told her, “I think that God let me have that vision so I wouldn’t be afraid of dying.” He passed away a week later.

What if we could all experience that surety, the peace of knowing that something lies beyond the door of death? How would society be different, if we knew that death wasn’t the end for our loved ones when tragedy took them from us? Our entire approach to death would be forever changed: how we treat the dying (medically and socially), our grief at losing loved ones, and our anxiety over our own mortality.

As it turns out, there is enough evidence for us all to accept this as reality: indeed, as we will see, the survival of consciousness beyond physical death seems the most likely conclusion when we carefully examine the masses of evidence and testimony collected over time from four areas of research:

• Experiences had during brushes with death: near-death experiences

• Experiences had at the time of death: end-of-life experiences

• Experiences involving those beyond death: communication through mediums

• Experiences of returning from death: memories of past lives reported by children.

In fact, the evidence from these areas is so strong that the only thing truly stopping us from accepting it is modern science’s blind insistence that it is an impossibility. However, once we grasp that human understanding of the cosmos and our existence has constantly been updated through the ages as our knowledge and experience has expanded with new evidence, it is less difficult to take the next step to accepting survival of consciousness as the most logical explanation for the data that we will present. 

Greg Taylor, “What is the Best Available Evidence for the Survival of Human Consciousness after Permanent Bodily Death?” An essay written for the Bigelow contest addressing this question. I am presenting excerpts without references, but this essay may be downloaded with all its references at https://bigelowinstitute.org/contest_winners3.php.

ELDVs of the dying: Kerr excerpt #22

ELDVs testify to our greatest needs--to love and be loved, to be nurtured and feel connected, to be remembered and forgiven. They are centered on self-understanding, concrete relationships, personal histories and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond: a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved. And based on the content of these dreams, it’s obvious that the forgiveness and love that count the most come from family. For thirteen-year-old Jessica, who was nearing death, her greatest fear was being alone in an afterlife without her mother, that is until Jessica’s ELDV conjured up her mother’s best friend Mary who predeceased her. In her own words, Jessica knew with certainty that she was “not going to be alone” after death, and that she would be “loved.” Jessica’s profound and enduring feelings of being loved and secured didn’t emerge from a distant dream. Jessica was clear: she observed Mary in wakefulness. Jessica also had dreams of her deceased dog Shadow who reaffirmed that she was “ok,” secured in love.

Although ELDVs, like Near Death Experiences (NDEs), entail the same paradox of a vibrant mind in a declining body, there are critical qualitative differences between NDEs and ELDVs. Characteristics of NDEs include impressions of being outside one’s physical body, awareness of being dead, a “tunnel” experience, movement toward and/or being immersed in “light”, life review and entering another realm of existence. These characteristics are not typically described in patients experiencing ELDVs. ELDVs are reported with much less abstraction or complexity. NDEs are commonly associated with a dramatic and lasting change in personality and outlook on life, whereas ELDVs leave the dying restored rather than changed.

ELDVs are felt and aligned with the life led – personal and core to self and one’s relationship to others. Unlike the person experiencing NDEs who is often motivated to analyze and share their experiences, the patient experiencing ELDV is not. A critical distinction between NDEs and ELDVs are that NDEs are often explained or dismissed in terms of changes in physiological function as part and parcel of the biological changes occurring as a result of “clinical” or nearing dying. The same criticism cannot be used to dismiss or refute ELDVs. Patients in our studies were not just interviewed in the last minutes and hours before death but longitudinally, in the days and weeks before death. All our study patients were screened for confusion, and many were high functioning and living independently when their ELDVs began. In other words, the experience of NDE occurs within clinical death whereas the ELDV experience occurs irrespective of how strong or tenuous the link between body and mind is or has become.

The results of our studies clearly reveal ELDVs as a state of consciousness that is different from other states of mind we may experience in health. For example, we have shown that ELDVs are distinct from dreams in several ways. Regular dreams are often defined as projections of latent psychodynamic processes and are rich in symbolism. By contrast, pre-death dreams and visions rarely contain the abstraction, behind-the-scene or metaphorical meanings we have come to expect from typical dreams. We have yet to have a patient emerge from an ELDV and ask for interpretation, analysis, or input. The time for introspection and therapy has passed. In fact, this is what patients tell us loud and clear: these dreams are different and unlike other dreams, because they are lived, virtual, experienced, and “more real than real.” They are a form of communication and connectivity that exit on a different plane which might be called transcendental and in which there is no distance between the dreamer and their dream experience. They often offer blueprints for a peaceful, visionary, and certainly revisionary end of life, and the meaning transcends the relation to the self to emanate from and in our relationship with loved ones. The following video is of a dying patient named Horace. In the video you will notice how Horace struggles to find language to describe what he is experiencing when his eyes are closed. He is overwhelmed just trying to describe his feelings of “happiness”, comfort, reunion, and love. He describes his deceased wife as even more beautiful than he remembered and felt “everywhere was “happiness” (Link to Horace Interview Video: https://www.youtube.com/watch?v=Ssfw-sRiNuo).

ELDVs are also most commonly defined by unique communication between the dying patient and those individuals featured within the ELDV. They entail reframing the communication they stage as something that transcends language: participants typically report very little verbal exchange with those who pre-deceased them. The smile of the long-deceased child or the wave of a departed wife doesn’t require language or explanation. The exchange resides in a dimension of consciousness that is simply felt, understood and shared.

As the data revealed, End-of-Life Dreams and Visions also challenge the parameters of typical recollection or memory. Recollecting implies retrieving a prior time from the vantage point of the present, and ELDVs go beyond what we consider re-accessed or rekindled memories. The dying do not remember a person as in a picture, but rather, they are themselves immersed in a larger experience that is lived, rich and sense filled rather than simply conjured from memory. There is a qualitative change in perception or state of awareness, of something within oneself. Simply put, patients are not looking back; they are ensconced within the experience, sometimes communicating with someone whose recent death they had not been informed of, or resurrecting smells, sounds, and details that go well beyond our usual cognitive interpretations. 

The following video is of Jennifer who is describing the inner experiences of her dying partner Patrick. In it, Patrick relives eating his family’s “secret” spaghetti sauce with his deceased grandmother. His consciousness is immersed and responding to unseen surroundings that exist in a shared mental space, and Patrick now relays an awareness of feelings, perceptions and senses that may not be shared with the living but is shared with the dead, including the sensation of being full after having shared a meal. Patrick’s ELDVs even include new “memories”: just before death, Patrick now remembers the long-forgotten and missing ingredient in the secret sauce (Link to Jennifer Interview Video: https://www.youtube.com/watch?v=InncrCm_O18).

ELDVs are inherent to our human existence and are evident in dying patients regardless of age or cognitive ability. As noted in our case study, ELDVs challenge our limited understanding of cognition and mental ability: patients who experience ELDVs aren’t confused but rather display heightened acuity, insight and consciousness, and such experiences occur in patients who are cognitively different such as those with dementia or Downs Syndrome. Past events that may not have previously been recalled with such vividness and detail prior to their terminal decline now return to resurrect a life rich in emotional tones, meaning and history. More than recalled, these experiences are relived and felt with a renewed sense of existence. Such patients often re- experience the best parts of having lived beyond even their conscious control. Based on their compromised cognitive status, such patients were not included in our formal studies, but we did document, and even videotape, family reports of their loved ones’ end-of-life experiences. An elderly woman named Irene, who suffered with advanced dementia, kept re-experiencing the presence and love of her long-departed husband Gary. 

The following video is of Irene’s daughter, Sue, describing her mother’s experiences at life’s end. Irene was joyful and complete in her final days. Days before death, Irene attempted to leave the nursing home: she was reexperiencing the best day of her life, her wedding day, and needed to get to the service (Link to: Sue Interview Video: https://www.youtube.com/watch?v=ozNGcExMqa8).

It has been noted--by our research team and others--that patients rarely report religious content in their end-of-life experiences (15, 41). Still, while this may be surprising, it is also not the point. While there are relatively few references to the symbols of faith, the tenets of faith, love and forgiveness, are common themes within pre-death dreams and visions. 

This is an insight that is beautifully expressed in the writings of Kerry Egan, a hospice chaplain in Massachusetts.* In her short but powerful piece “My Faith: What people talk about before they die,” Ms. Egan explains that she is routinely called to the bedside of dying patients who want to talk, not about God but about their families and “the love they felt, and the love they gave .... people talk to the chaplain about their families because that is how we talk about God”. To Ms. Egan, not mentioning God directly does not create conflict with her own religious faith or role as chaplain because it is in the love felt by family members for each other that she recognizes God and the teachings of her religion: “If God is love, and we believe that to be true, then we learn about God when we learn about love. The first, and usually the last classroom of love is the family... We don’t have to use words of theology to talk about God; people who are close to death almost never do. We should learn from those who are dying that the best way to teach our children about God is by loving each other wholly and forgiving each other fully - just as each of us longs to be loved and forgiven by our mothers and fathers, sons and daughters.” At the hour of our death, spiritual transformation is no longer external to the self. It happens in the innermost recesses of our being. As we progress toward acceptance, illness and death place us on a spiritual path that that reunites us with consciousnesses that were never gone and ultimately re-affirm who we are through their returned love.

We have lost our way with dying and with death. It has become easier to live longer, but harder to die well. I had been trained to view dying as medical failure when I began working at Hospice in 1999. Sadly, the acceleration of the science of medicine has obscured its art, and medicine, less comfortable with the subjective, has been more concerned with disproving the unseen than revering its meaning. Amid the current madness of medical excess, there is a need for spiritual and cultural renewal that medicine alone cannot address. It is when medicine can no longer defy death that nature assumes its rightful role, and the process of dying becomes what it has always been: a human experience with physical and spiritual dimensions, seen and unseen. From this vantage point, the dying process, which includes transformative subjective or inner experiences such as end-of-life dreams and visions, becomes less about finality than about life’s resilience.

As Hospice work demonstrates again and again, when the patient is kept comfortable and otherwise left to follow the natural course of things, death becomes more enlightening than a simple pulling down of the shades. This enlightenment is one that encompasses altered forms of consciousnesses, a double consciousness as it were, those of the departed as well as the patients. Whereas traditionally, consciousness is defined as an awareness of self and of the world around, ELDVs include alternative forms and beings that include not just dreams and visions of them but the lucid consciousness of others as constitutive of the self. The departed loved one’s consciousness exists as an extension of one’s own and their surroundings become indistinguishable from the patient’s as inner and outer worlds collide and become one. What observers may view as a sudden change in perception is lived, in other words, as an expanded consciousness rather than as a change by the patient. It is not that an alternate reality supplants theirs, but rather that their reality grows to include what is an “other world” only to outsiders. To the patient, the distinction does not exist, and their loved one’s world is merely an expansion of their immediate surroundings. As such, the tragedy of human existence is not the fact of death or suffering or the inability to defeat these but our inability to think dying as anything other than the “diming of the light.” By exploring the nonphysical and subjective experiences of dying in an objective fashion, through both research and film, we have worked to reframe and humanize dying from an irredeemably grim reality to an experience that contains richness and continuity of meaning and relationships for patients and loved ones alike.

At life’s end, dying patients summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and air hunger. Catheters, IV’s and pills may now be part of their everyday, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also display remarkable awareness and mental sharpness in the context of their inner experience, an awareness that resides in their consciousness, a consciousness that transcends death and its limitations.

*Kery Egan, "What People Talk About Before They Die," https://www.cnn.com/2016/12/20/health/what-people-talk-about-before-dying-kerry-egan/index.html.

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.

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.

Research on dementia: Kerr excerpt #18

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

The sample cases we have so far discussed show that, regardless of the types or length of lives led or experiences had, humanity’s final moments do not merely consist of a passive disintegration of the flesh. Instead, the course of dying is transformed by resurrected consciousnesses that inhabit the inexplicably heightened awareness and cognition of the dying. But what about people whose minds function differently? Those with cognitive or perceptual impairments, those categorized or labeled as mentally ill, demented, disabled or “neuro atypical,” and whose voices and stories are often hidden and marginalized in life? Do the labels and preconceptions that so often limit them in life, also do so at the end to prevent them from partaking of the complex spiritual transformation we have identified in others? Our research shows that dying people with cognitive and developmental conditions have rich and vibrant inner processes that include their loved ones returning to usher them peacefully into death.

Many patients whose cognitive impairment is severe, arrive at the end of life without the kind of alignment of inner and outer self that others achieve. Instead, these patients are estranged from their core self. The loss of cognitive functioning, often referred to as Alzheimer’s dementia, is an extreme example of that condition. The disease separates us from ourselves or from what Oliver Sacks refers to as the “inner state” in profound and irremediable ways. Unlike other afflictions, Alzheimer’s dementia creates a world where cognition unravels, yet emotions and senses remain the same.

People with dementia are typically excluded from formal research studies that depend on informed consent and therefore intact cognition. Yet, they should be considered if we are to do justice to the full range of human experiences at life’s end. And of course, disentangling the world of those suffering from dementia also entails considering the caregiver on whom they depend to navigate an unrecognizable world.

The descent into dementia typically leads to a disproportionate clinical focus on the patient’s challenging behaviors and their management to the detriment of the person’s buried psychological states of being. The clinical world may also inadvertently obscure the subjective world of those with dementia by only considering the loss of measurable cognitive abilities. The clinician may be continually drawn to observable behaviors and evidence of defectiveness. This clinical nomenclature becomes the currency through which we discuss patients, as we become overly reliant on assessing people’s inability to repeat numbers or recall the names of past presidents. In so doing, we ignore the view from inside, the richness within the subjective states of dementia. We fail to consider the lived experiences of people with dementia because we let our awareness of their condition obscure their personhood and consciousness. 

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.