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.