Monday, June 27, 2022

The bereaved perspective: Kerr excerpt #6

Dr. Christopher Kerr writes that two research studies: "assessed the effect of our patients’ End-of-Life Dreams and Visions (ELDVs) on the bereaved, specifically, how ELDVs affect grief and bereavement for those who lost a loved one. These studies,* which combined included roughly 750 bereaved loved ones, demonstrate that participants felt the dreams helped with their overall grief (58.2%), accepting their loss (49.3%), working through the pain of grief (46.1%), adjusting to their new world without the deceased (39%), and continuing the bond with their loved one (45.9%). In general, the more comfort they felt an ELDV brought to their dying loved one, the more comforted caregivers were during bereavement. The impact of ELDV’s impact on grief processing was also quantified and shown to be statistically significant when measured using validated instruments such as the Core Bereavement Items. The video of a widower named Norb is one example (Link to Norb Interview Video: https://www.youtube.com/watch?v=3cmo7UyFBwY).

"In addition to the above studies which focused on the impact of the dying patients’ experiences on the bereaved, we also published a study which focuses on the dreams of the bereaved, specifically dreams that focus on loved ones who have passed.** The distinction is important: these individuals were not actively dying yet they too often reported a continuous connection to loved ones who had passed. In this study, 58% of 278 bereaved respondents reported dreaming of the deceased. Prevalent dream themes include pleasant memories or experiences, the deceased free of illness, memories of the deceased’s illness or time of death, the deceased in the afterlife appearing comfortable and at peace, and the deceased communicating a message. The following video is of a woman named Patricia who is recalling dreams of her deceased husband, Chuck, who had passed 13 years earlier. In these dreams, Patricia gets to reexperience a daily ritual that they shared during their long marriage (Link to Patricia Interview Video: https://www.youtube.com/watch?v=ZTzzAUgJDq0).

"Those who dreamed about a loved one did so with varying frequency: daily (7.5%, n = 12), weekly (23.6%, n = 38), monthly (15.5%, n = 25), less than monthly (26.7%, n = 43), and other (25.5%, n = 41). Most respondents reported that their dreams were pleasant (n = 89), specifically dreams that featured pleasant past memories or experiences (n = 105). Other prominent categories included the deceased free of illness (n = 65), memories of the deceased’s illness or time of death (n = 56), the deceased in the afterlife appearing comfortable and at peace (n = 43), and the deceased communicating a message (n = 41). Many respondents described the content of their dreams in vivid detail. Most respondents who dreamed of the deceased also felt that this experience impacted the emotions related to their bereavement process (60.2%, n = 97). Some reported that their dreams helped them accept the death of a loved one. Others described how their dreams helped them 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.' The deceased continued to live in the consciousness of those left behind, in a way that represented both the bereaved’s vantage point and that of the deceased. Again, these experiences are less 'dream-like' than experiential.

"Taken together, the above studies strongly suggest that both the dying and the bereaved experience meaningful inner processes that strengthen connectivity amongst those they love and were loved by, whether physically present or not. Such connectivity exists beyond our physical forms and supports the existence of a consciousness that extends beyond our dichotomized understanding of life and death."

*Grant PC, Depner RM, Levy K, LaFever SM, Tenzek KE, Wright ST, Kerr CW. Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach. J Pall Med. 2020; 23(1);48-53. 

Grant PC, Levy K, Lattimer TA, Depner RM, Kerr CW. Attitudes and Perceptions of End-of-Life Dreams and Visions and Their Implication to the Bereaved Family Caregiver Experience. Am J Hosp Pall Med. 2020; 38(7);778-784.
 
**Wright ST, Kerr CW, Doroszczuk NM, Kuszczak SM, Hang PC, Luczkiewicz DL. The Impact of Dreams of the Deceased on Bereavement: A Survey of Hospice Caregivers. Am J of Hospice and Pall Med. 2014; 31(2);132-138.
 
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.

 


Sunday, June 26, 2022

Pediatric patients: Kerr excerpt #5

Dr. Christopher Kerr writes: The study of end-of-life dreams and visions typically focuses on adults; however, children with terminal diagnoses also have these experiences, further demonstrating that this is an occurrence related to the transition to death and not to age or physical decline.

Our third publication was a pediatric case series*. Although children and adolescents process the experience of illness and impending death in ways that are distinct from adults, they still contend with existential and spiritual concerns no matter how difficult these may be for them to express. When facing serious illness, children are often confronted with an unimaginable reality for which both context and language are limited. As they struggle with illness, they also must cope with fears around death, including existential questions that are challenging to communicate and equally difficult for clinicians to answer. We have been fortunate to be able to film several of these children.

The study of end-of-life dreams and visions typically focuses on adults; however, children with terminal diagnoses also have these experiences, further demonstrating that this is an occurrence related to the transition to death and not to age or physical decline.

 

In several pediatric cases, the children’s ELDVs didn’t deny their impending death but informed and transcended the inevitable. In all cases recorded, their ELDVs provided comfort and meaning. For example, Ginny was a 15-year-old girl whose dreams and visions heavily impacted her dying process and her mother Michele’s bereavement experience (Link to Ginny and Michelle Interview Video: https://www.youtube.com/watch?v=hykQVBYDmsM).  

 

With exceptional detail, Ginny recounts a dream in which she is playing dolls and singing songs with her deceased aunt. She describes being in a beautiful castle filled with warmth and light. Adorning one of the walls is a stained-glass window depicting ‘‘a baby and you can see the sun through it.’’ In her own words, Ginny describes the castle as a “safe place” and emphasizes that she is “not alone.” In addition to her aunt, the castle is also populated with numerous pre-deceased family pets that now appear alive, healthy, and playful. 

 Upon waking from sleep, Ginny found immediate meaning in her ELDV experience, telling her mother, ‘‘I’m going to be okay, I’m not alone.’’ Four days before her death, on what had been a quiet afternoon, Michele heard an animated conversation through a baby monitor that was kept beside Ginny’s bed. When Michele asked Ginny whom she was talking to, Ginny responded, ‘‘I was talking to God.’’ She added ‘‘He’s old, but he’s kinda cute.’’ 

 

She said to her mother, ‘‘I’m not going to be sick; you know. where I’m going. You know, to the castle.’’ Ginny’s conversation with God also addressed her concern as to whether her family would be able to join her when their time came.

 

*Levy, K, Grant, PC, Kerr, CW, End-of-Life Dreams and Visions in Terminal Children/Adolescents: A Case Study. J Pall Med. 2020; 23(11);1549-1552.

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.

 

Saturday, June 25, 2022

Six categories of ELDVs: Kerr excerpt #4

Dr. Kerr writes: After documenting the prevalence and characteristics of End-of-Life Dreams and Visions (ELDVs), we wanted to better understand their content, and what they meant to the dying. In the second study (19), we conducted multiple interviews with 63 Hospice patients. We began the study with patients in our Hospice Inpatient Unit, which included a survey and a structured interview. We visited participating individuals daily to complete the survey and interviewed them for as long as they were able. The study utilized quantitative data as well as open-ended questions and interviews, which allowed each participant to describe their experiences in detail. The data was analyzed using a mixed-method design called concurrent triangulation that is used to confirm or corroborate the findings of 2 different methods; both quantitative and qualitative data were collected at the same time. The results revealed 6 categories of ELDVs:

1. Comforting Presence: Dreams and visions that featured the presence of dead friends and relatives were well represented throughout the data. Some also included living friends and relatives as well as dead pets or other animals. These dreams and visions were overwhelmingly described as comforting to the patient. For example, one patient reported that she had frequent dreams of her dead sister sitting beside her bed. She described these dreams as extremely comforting because ‘‘I am not going alone [my sister] will be with me.’’ Another patient reported dreaming of her dead mother talking to her in a beautiful garden, saying ‘‘everything will be okay.’’ This was very comforting to the patient and she told her family that she wanted to go back to sleep because her mother would be coming back. Another patient who dreamed of both dead and living friends and relatives also reported that they were all ‘‘telling me I will be OK.’’ Yet another patient reported dreaming of his mother who had died when he was a child. The dream was so vivid that he reported smelling her perfume as well as hearing her soothing, comforting voice, say, “I love you”. The following video of Alice, who describes an intense vision of deceased loved ones and is left with a feeling of “enormous love” as well as a sense of “joy and peace that was hard to describe.” 

(Link to Alice Interview Video: https://www.youtube.com/watch?v=V4PzG8BFECM).

     2. Preparing to Go: Some participants reported that in their dreams they seemed to be preparing to go somewhere. One patient described seeing his parents, grandparents, and old friends in his dreams. He observed, ‘‘I know we are going somewhere, but don’t know where.’’ Another patient dreamed that he was driving around [town] and had to go somewhere, but again, he did not know where. A third patient dreamed of boarding a plane with her son and although she could not describe where they were going, she reported feeling comforted. In a subsequent interview, she said that she and her son ‘‘were on the edge’’ of leaving. Although there were a few reports of distress because dreamers felt ‘‘hurried,’’ the participants primarily found this experience of preparing to go somewhere to be comforting. 

     3. Watching or Engaging With the Dead: Participants in this category described the presence of others in their dreams/visions as simply being there or watching but not engaging with the patient. For example, one patient reported that she had dreamed of her two aunts standing over and watching her while she was lying on the couch. She found this to be very comforting. There were also reports, however, where patients described themselves as engaging with people in their dreams. One patient reported that her husband and her dead sister had joined her for breakfast; she also dreamed of playing cards with her dead friends. Another patient dreamed that her father and two brothers, all dead, were silently hugging her and playing games; then she described how ‘‘they were welcoming [her] to the dead.’’ Yet another patient described a dream where he was able to play with and pet his dead dog. Again, these experiences were largely reported as comforting.

     4. Loved Ones Waiting: Some patients in the study described dead friends and relatives in their dreams as ‘‘waiting for them.’’ One woman reported that she had both waking and sleeping dreams of six dead family members in her room. She added that they were ‘‘waiting for me’’ and that it was good to see them. Three days before another woman died, she reported experiencing both waking visions and dreams of being at the top of a staircase with her dead husband ‘‘waiting’’ for her at the bottom of the staircase. Once again, the presence of these dead friends and family members was primarily experienced as comforting. There were, however, some patients who expressed that they were not ready to die. These patients experienced some distress at the fact that the dead were ‘‘waiting’’ for them.

     5. Distressing Experiences: Not all dreams/visions experienced by the patients in the study were perceived as comforting. There were also reports of distressing dreams, some of which replayed traumatic life experiences. One patient, for example, reported dreaming of his previous war experience. A second patient reported dreaming of her son’s serious injury that occurred on a naval ship. Several patients had dreams about abusive childhood experiences. Other distressing dreams were reminiscent of the difficult situations or relationships the patients had had. For example, a male patient reported having distressing dreams of his brother being very critical of him and also reported distressing,

     6. Unfinished Business: Participants also reported dreams that centered on their fears of no longer being able to do the things they felt they needed to accomplish in life. One young mother, for example, had distressing dreams of her daily responsibilities with her children. The dreams involved getting her children ready for school, getting them to practice, and other parental responsibilities. A second young mother experienced distressing dreams related to real-life worries about her bills and her children. The continuity within the dying experience of the preoccupations and experiences that had defined living is itself significant. This too speaks to the continuity of consciousness across living, dying, and death.

      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.

 

 


 

 


Friday, June 24, 2022

Data on adult ELDVs: Kerr excerpt #3

Although there was growing cultural recognition that ELDVs [End-of-Life Dreams and Visions] are psychologically and existentially significant, they had rarely been explained in a clinical context or presented as medically relevant. There was also a scarcity of data addressing the prevalence, content, and significance of ELDVs. Nor had studies directly addressed the issue of delirium or confusional states that may confound our interpretation of ELDs [End-of-Life Dreams].

The first study* was therefore designed to 1) document ELDV experiences using a longitudinal survey and semi-structured interview format in hospice patients nearing the end of life; 2) examine the content and subjective significance of ELDVs; 3) relate the prevalence, content, and significance of ELEs over time until death and 4) clearly address the issue of altered cognition or confusion by excluding those who met diagnostic criteria for either dementia or delirium.

For this study, Hospice patients who had been admitted to a Hospice Inpatient Unit were screened for eligibility. Inclusion criteria were age 18 or older, capacity to provide informed consent, and a Palliative Performance Scale (PPS16) score of 40 or greater. Exclusion criteria were diagnosis of a psychotic disorder as per the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) and a barrier of language or communication. 59 patients agreed to participate in the study and were interviewed daily by a study investigator using a standard framework of questions.

The study included close-ended questions related to the presence or absence of dreams/visions, whether these experiences occurred during sleep or wakefulness, dream/vision content and frequency, degree of realism, and comfort versus discomfort. For questions regarding dream content, investigators checked boxes from a list of eight items (deceased friends/relatives, living friends/relatives, other people, deceased pets/animals, living pets/animals, religious figures, past meaningful experiences, other). Patients reported dream frequency by choosing a range of once a day, 2 to 4 times/day, or > 4 times a day. Comfort provided by the dream/vision was rated on a 5-point semantic differential scale with 1 = Extremely Distressing and 5 = Extremely Comforting.

Investigators also recorded key clinical indicators: overall clinical status (Palliative Performance Score), oral intake, presence/absence of fever, alertness level, as well as medication changes. With respect to data analysis, multiple approaches were used and included descriptive statistics, graphic analyses, and inferential analyses. Multilevel models were chosen to account for the varying patterns of reports by individual patients, including variation in number of days included, missing days due to patient condition, and the possibility of multiple event reports per day.

The results of this initial study were based on 59 patients and a total of 453 interviews with a mean of 7.68 interviews per person. Range of days before death for interviews was 0 to 87 days, with a mean of 21.58 and a median of 15 days. Of the 59 patients who were interviewed, 52 (88.1%) reported experiencing at least one dream or vision. Almost half of the dreams/visions (45.3%) occurred while asleep, 15.7% occurred while awake, and 39.1% occurred while both asleep and awake. Degree of realism was recorded on a 10-point Likert scale and nearly all ELDV events (267/269, 99%) were reported by patients to seem or ‘‘feel more real than real.’’ Most daily reports included a single ELDV event (179, 81.4%) with two (13.2%), three (4.1%), and four events (1.4%) on other days.

Patients were also asked to describe what they had dreamt about. The interviewer coded responses on a checklist with eight categories, noting all that were included. Many patients reported end-of-life experiences that included reunions with deceased friends or relatives (72 %) living friends or relatives (17%), other people (10%), and deceased pets or animals, living pets or animals, religious figures, past meaningful experiences, and other content not listed (singly and in combination, 35%). Note that the total percentage is greater than 100% because multiple responses could be recorded for each event (e.g., deceased friend/relative and living friend/ relative in the same dream). In addition, 38.9% of all dreams included a theme of going or preparing to go somewhere.

Patients also rated the degree of comfort/distress associated with their ELDVs on a 5-point scale ranging from Extremely Comforting (5) to Extremely Distressing (1). The mean comfort rating for all dreams and visions was 3.59 (SD= 1.21, 95% confidence interval [CI] = 3.44–3.73) with 60.3% rated as comforting or extremely comforting, 18.8% distressing or extremely distressing and 20.7% neither comforting nor distressing. The highest average comfort rating was associated with dreams/visions about the deceased (mean = 4.08, SD= 1.05), followed by deceased and living (mean = 3.61, SD= 0.78), living (mean = 3.22, SD= 1.15), and finally other people and experiences (mean = 2.86, SD= 1.19).

One other clear pattern was evident: the frequency of end-of-life experiences not only increased as death neared, but the most prevalent ELDV content involved reunions with the deceased which were also rated as the most comforting theme. In other words, as patient drew closer to the physical end of life, they were progressively more soothed by the comforting presence of those they loved and who had died. ELDVs may also be prognostically significant based on changes in content and increased frequency as death nears. This pattern of ELDVs bringing greater level of comfort with approaching death challenges the notion the dying involves increasing psychogenic distress.

There seems to be a distinction between the dying process we imagine, and often fear, versus the death experienced. In the following video is of an interview of a dying woman named Jeanne, as well as input from her daughter Julie (Link to Jeanne and Julie Interview Video: https://www.youtube.com/watch?v=HAbhtQCB6SM). Clearly, Jeanne isn’t confused and describes the experiences as vivid, rich in detail (including tactile sensations) and interprets these experiences as having “actually happened”.

In summary, our original study demonstrated that ELDVs were common, as 87% of study patients reported such dreams/visions. Regardless of whether the experience occurred during waking (19%) or sleep states (46%) or both (35%), the dreams/visions conveyed a sense of realism. In fact, many patients reported that these in fact were not dreams but actual occurrences, and many were adamant that they don’t usually dream or recall their dreams. The descriptions of ELDVs provided by participants were typically vivid with great detail and personal meaning. There were several important and unforeseen observations made by the investigators while conducting the study. For example, patients’ predeath dreams were frequently so intense that the dream carried into wakefulness and the dying often experienced them as waking reality. The realism of predeath dreams/visions is consistent with prior research suggesting that during stages of transition or crisis, dreams become more vivid, intense, and memorable. In addition, despite very little spoken dialogue within the dreams/visions, the circumstances and significance of the experiences were still conveyed. The predominant quality of predeath dreams/visions was a sense of personal meaning, which frequently carried emotional significance for the patient. This was also true of ELDVs that were not comforting. 

*Kerr CW, Donnelly JP, Wright ST, Kuszczak SM, Banas A, Grant PC, Luczkiewicz DL. End-of-Life Dreams and Visions: A Longitudinal Study of Hospice Patients' Experiences. J Pall Med. 2014;17(3);296-303.

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.

Thursday, June 23, 2022

Summary of dying research: Kerr excerpt #2

Dr. Christopher Kerr, director of the Buffalo New York Hospice, writes: Our research began in 2010 and has so far resulted in 9 peer-reviewed publications (17-25). However, it did not originally seek to demonstrate the continued existence of consciousness after death. In fact, our intention was quite different. Our work grew out of frustration in trying to teach young doctors that dying is more than failing organs but should instead be regarded as a closing of a life in which the patients live and die in totality, not in parts. Our objective was to honor and validate the patient experience rather than fulfill the expectations, prophecies or the beliefs of the observer. We were consistent and intentional in our commitment to translate the words and experiences of dying patients without extrapolating or editorializing about the afterlife, the paranormal or the religious. But when we paused and listened to our patients, they told a story we had neither sought nor anticipated. The results of one study spurred on the next such that when taken together, an overarching yet unanticipated theme emerged which indeed suggests that consciousness extends beyond physical death and connects us to one another, whether living or dead.

The common notion that nothing valuable can come from patients in the final days and weeks of life reflects a limited insight into the meaning of the patient’s dying experience which includes predeath experiences. Too often, the medical students or fellows with whom I worked at Hospice would dismiss the patient’s inner experiences as the manifestations of psychogenic drivers or the neuronal workings of a dying brain. Their reaction inevitably failed to account for the spiritual and psychological benefits of the occurrences. The more I taught the more I heard young doctors retort that there was “no evidence,” which meant measurable evidence, in language they considered valid. To help them rethink their approach, we needed science-based evidence; that meant studies that were objective, systematic, and rigorous, that met the standards of scientific scrutiny and could be published in peer-reviewed medical journals.

To achieve this, it was essential to add authenticity and hear from the patients and families in their own voice. To further corroborate and better represent the patient’s perspective, as well as refute the notion that end-of-life experiences are merely manifestations of a cognitively impaired or confused mind, the decision was made to videotape many of our patients. We all have biases or assumptions about the dying process, and such misconceptions are best addressed by hearing from the patients themselves. We wanted to show that dying patients are not just what they are too often imagined to be--faded, lethargic and often time-ravaged people in a hospital gown, too frail to function, think or express themselves. Rather, they represent the full diversity of the living; they may be alert, contemplative, thoughtful or intuitive, young or old, able-bodied or disabled. They may each be unique in their own way, but they all represent the universality of the phenomenon we set out to examine. Perhaps, most importantly, these patients wanted their voices heard.

Clinicians unfamiliar with predeath experiences often discount them as hallucinations caused by medications, fever, or confusional states, thus insinuating that these experiences hold little intrinsic or clinical value (26). Although it is common for dying patients to exhibit delirium when transitioning from life to death (27, 28), the state is marked by disorganized thinking, altered sensorium, agitation, anxiety, or fearfulness (29, 30). Patients frequently experience predeath phenomena as well as fluctuating states of delirium, particularly before death, but predeath experiences, even in the context of episodic delirium, typically involve clear consciousness, heightened acuity, and awareness of one’s surroundings; they are memorable and recalled with clarity; they contain subjective meaning, provide a source of personal solace, and are mostly characterized as comforting or extremely comforting in contrast to delirium (13, 32, 33, 34). Predeath experiences differ most from hallucinations or delirium by the responses they evoke, including inner peace, acceptance, and the sense of impending death (34, 35, 36). These distinctions are critical, because medicating pre-death experiences mistakenly perceived as delirium may remove the dying patient from comforting experiences inherent to the dying process. This further causes isolation, suffering, and impairment in the dying person’s ability to experience and communicate meaning at end of life (14, 34).

Our understanding of the experiences at life’s end is complicated by inconsistent nomenclature or terminology that is not fully applicable to the occurrence and may even be misleading. End-of-Life Experiences is a broad term that is commonly used to describe a wide range of phenomena that people may experience near the time of death (11, 12, 37, 38). End-of-Life Dreams and Visions (ELDVs) are a form of End-of-Life Experiences and our preferred nomenclature in our research.

For reference purposes, the word dreaming is often used to describe predeath experiences, simply because this is the closest description or reference point we have. Yet, it’s important to note that patients frequently insist that their subjective experiences are more dissimilar than like previously experienced dreams. In fact, they often refer to these episodes as “visions” to convey the distinct realism. What is more, half of the patients in one study reported that these events occurred while they were awake (18).

Although the topic of End-of-Life Dreams and Visions has been well-documented over time, our research approach is unique in several ways. With the exception of some case reports, the majority of previous studies rely on surveys or interviews with families of the deceased or with clinicians who work with the dying (13, 26, 33, 35, 39). By contrast, our studies adopt an objective approach to the reports taken directly from patients themselves rather than their observers. What is more, previous researchers had collected their data during singular or sporadic moments very near death, thus failing to capture dying as a process that changes over days to months. By contrast, we interviewed patients longitudinally and, in some cases, near daily until death. Our approach included both quantitative and qualitative studies as well as hundreds of hours of video footage. Finally, all study patients were screened for any evidence of confusion or delirium and were excluded if any cognitive impairment was detected. We also documented the experiences of children as well as adults. 

 

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.


Wednesday, June 22, 2022

Experiences of the dying: Kerr excerpt #1

Dr. Christopher Kerr, author of the 2021 essay “Experiences of the Dying: Evidence of Survival of Human Consciousness” written for the Bigelow Institute for Consciousness, writes:

When I became a hospice doctor 23 years ago, neither my medical training nor my doctoral degree in neurobiology could have prepared me for what I would witness at bedside of patients nearing death. I used to believe that my job was caring for life predeath. Instead, I came to realize that there is more to dying than death.

My observations at bedside have led me to the counterintuitive claim that the survival of human consciousness after death may be nowhere more evident than in what happens to the dying before death. These are moments of transition when the mind’s elevation transcends the body and brain’s deterioration. Put another way, we can’t look into the continuity of consciousness past death by having an exclusive focus on the after. Doing so would assume a before/after division that the dying experience itself renders irrelevant. The dying process is a continuum within which our patients experience a heightening of consciousness and an acute awareness of their past and present existence. This experience includes a consciousness that is most often shared with others who died before them and but who are now fully present to them. The dying process reveals a connectivity between and across lives, both living and dead. This continuity of connectivity persists regardless of time or bodily existence and supports the hypothesis that consciousness survives beyond bodily death.

I used to believe that end of life includes processes that understandably draw us inward towards introspection and reflection, processes that distill life into what truly counts and in so doing, validate having lived and mattered. That the dying process would alter the patient’s perception made sense. What was unexpected if not jarring was that the process entails so much more than just a changed outlook in patients. Shortly before death, the dying have dreams and visions of their predeceased loved ones, scenes of vivid and meaningful reunions that testify to an inexplicably rich and transformative inner life. The phenomenon includes a lived, felt, often lucid experiential reality whereby those loved and “lost” return to the dying in ways that cannot be explained by memory alone. Children and parents sometimes lost decades earlier come back to put patients back together and help them transition peacefully. At the precise moment we associate with darkness, loss, physical decline, and sadness, their presence helps the dying achieve peace, comfort, and forgiveness, which suggests an existence beyond our bodily form. A failing brain does not imply a failing mind, and biological decline does not diminish the soul. In fact, in our final days, our physical form does not follow function: patients are spiritually and perceptually alive and vibrant despite a failing body. This is the paradox of dying.

A remarkable body of work on Near-Death Experiences (NDE) has been cited as evidence that consciousness is more than a byproduct of our brain and survives our mortal form (1-5). Skeptics offer physiologic explanations and argue that the memories or sensations of NDE-like experiences are actually triggered by the brain as it shuts down or reboots; they attribute the phenomena to causes including oxygen shortage, anesthesia, neurochemical responses to trauma and “post-resuscitation syndrome” (6-8). Critics of NDE study protocols also suggest that this research does not “exclude that the reported memories were based on retrospective imaginative (re)constructions built up from memories, prior knowledge, and/or expectations about the world” (9). Others explain NDEs based on spiritual or psychological interpretations, ranging from the theories of Expectancy to Dissociation (6, 9, 10).

Proving consciousness beyond death must not only account for neurobiological changes associated with “clinical death” but also address factors that define and inform consciousness, such as changes in awareness, wakefulness, and connectedness. At Hospice, we routinely care for dying patients who are not only neurologically intact but fully aware and awake. Whereas physical death is a circumscribed event, dying for most is a prolonged process that inherently alters consciousness. The dying processes we witness are anticipated, non-acute and physically irreversible. Yet, instead of exhibiting a waning consciousness, many of our patients display a heightened acuity and a rich inner life which includes changes in perception as well as an awareness of both their internal and external existence. Not surprisingly, such experiences of consciousness are qualitatively distinct from those events described in traumatic or acute death, alterations in brain function from anesthesia or recovery from recusation. The studies conducted at Hospice Buffalo for over a decade further corroborate that the dying are paradoxically often emotionally and spiritually alive, even enlightened, despite their terminal physical decline, not just in the minutes or hours before physical death, but in the days and weeks. In other words, these extraordinary inner experiences that have been attributed to a failing brain with NDEs occur during the dying process on a continuum that goes from intact cognition to the fluctuating states of consciousness and failing organs that define the immediate hours before death.

We hypothesize that only those who are actively dying have the vantage point and the language to define their changing and enlightened existence, the keyhole through which to see what’s beyond. Our work focuses not only on the dying process but specifically, on the experiencing of it, the subjective or conscious dimensions of dying. The tragic physical process of dying often obscures the experiential, inner or subjective dimensions of dying which represent a heightened form of consciousness, an awakening of feelings, wonderous perceptual experiences, insights into one’s present and future existence as well as a feeling of connectivity, wholeness and belonging. Our patients exhibit changes in awareness of thought, memories, feelings, sensations, and environments. Not only are such experiences near universal, but they are remarkably similar. This is why to find evidence of the survival of human consciousness after death, we need to look at what happens before death, in these moments of transition when the before and after merge to the point of irrelevance and the enlightened mind transcends the body and brain’s deterioration.

The following is a video of our patient Florence, six days before death. She is free of neurologic disease and has not taken any psychoactive medication. Although dying, Florence is physically unburdened and cognitively intact while describing the closing of her life. To her, dying is a conscious experience that is vibrant as well as self-fulfilling. Her consciousness is lucid: she is fully awake, aware and connected. Through this keyhole, Florence doesn’t dream, analyze or simply remember, but instead feels the familiar and comforting presence of those she has loved and lost. Unlike the epiphanies or revelations often associated with NDEs, there are no great insights or messages. In fact, language is near absent and not needed. Florence is instead at her family’s kitchen table in the company of her deceased husband and daughter; she has been put back together and is truly home. Her awareness is acute, complete and secured in the certainty of what has always defined who she is: her relationships. She is now restored in a promise of what lies ahead. Florence doesn’t have any feeling of being out of her body or any perception that she is dead: her existence, as defined by love, is understood and sustained. These experiences are not only validating but remove any fear of physical death. Florence is already on her journey, her consciousness continuing where her body can no longer go (Link to: Florence Interview Video).

These moments of life-affirming enlightenment at the time of death have been acknowledged across cultures and throughout history. Indeed, while modern medicine has been resolutely silent on the topic of dying, often reducing it to mere “medical failure”, the humanities, the realm of culture and religion, have long testified to its significance to humanity. From writers, poets and philosophers as far back as ancient Greece, from Buddhist and Islamic texts to accounts from China, Siberia, Bolivia, Argentina, India and Finland, from the religious and sacred traditions of Native Americans and other indigenous peoples around the world, meaningful pre-death dreams and visions have been widely recognized and celebrated. They are mentioned in the Bible, Plato’s Republic, and in medieval writings such as the 14th century mystic Julian of Norwich’s The Revelations of Divine Love. They show up in Renaissance paintings and in Shakespeare’s King Lear. They appear in 19th-century American and British novels, in T.S. Eliot’s poetry, and last but not least, in the Dalai Lama’s meditations on death. If anything, the medicalization of death has obscured a language that has always been available to make sense of our finitude and that has been integral to humanity’s need to maintain connection with the departed. This awareness that we remain intertwined beyond death is central to the story of our shared humanity.

Starting in the twentieth century, reports on pre-death experiences began to be collected systematically through eyewitness accounts (11-16). More recently, a research team at Hospice Buffalo, has conducted studies on over 1,500 patients and families. The process of dying is a reality that only the dying could tell us about, from a vantage point that the living do not share. It was the testimonies of these patients as well as our subsequent systematic studies of their inner experiences that helped us reframe dying and our notion of a before and an after death and of consciousness itself. The data confirmed that the vast majority of dying patients, shortly before death, have these comforting dreams and visions that most commonly summon predeceased loved ones. After witnessing how these bonds of love re-emerge as unbreakable at life’s end, the question we were left pondering was “are the deceased ever really gone?” Indeed, those who returned were not just random appearances; they were most commonly, as with Florence, people who best loved and secured the dying in life and were reuniting at a depth that suggests they were never gone. One ninety-five-year-old gentleman claimed to smell his mother’s perfume as she whispered “I love you” in his ear. His mother had passed ninety years earlier when he was five years old, yet his vision of her was as crisp as if she had just left him. Such experiences return at life’s end in ways that transcend mere recollection and are instead tangible, material, and lived. With full lucidity, these patients claim such experiences are “more real than real” and rich in detail not previously recalled but now vividly summoned.

“Transcendence” is typically the concept used to denote an existence or experience beyond the normal or physical level. The word literally means “going beyond.” It is also a state that is associated with the afterlife and that best represents the work that pre-death experiences do in helping patients transition to death. In fact, the power of the spiritual transformation and “transcendence” they occasion in patients’ lives cannot be overstated. Near death, the boundaries between the experiential and the spiritual, body and mind, present and past, conscious and unconscious impulses dissolve to provide comfort through a process of connectivity across the living, the dying, and the dead. The process brings about a form of spiritual and emotional solace that is rooted in lived experience rather than just dreams or memories. Recognizing people’s experience of dying as the gateway to continued consciousness beyond life and death is crucial if we are to become more literate on what constitutes our mortality.

 

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.

Tuesday, June 21, 2022

The dead continue to exist: Sommer excerpt #13

Historian Andreas Sommer concludes his review of the evidence for conscious life after physical death: After Part 1 cleared the path for an ideally unbiased recognition of a serious research tradition which most educated people are unaware of, it seems there are only two interpretations of the empirical evidence discussed in Part 2: We can either assume some kind of cosmic conspiracy by a Neoplatonic ‘world-soul’ or Absolute Mind bent on perpetually tricking us, or adopt the more natural and simpler view that the dead continue to exist, and sometimes – under conditions whose exploration will need to be part of continuing research – are able to manifest, either sporadically as suggested by the best cases of apparitions and mediumship, or through rebirth into a new life.

Note that I do not claim personal survival is scientifically proven. However, unlike our alternative hypothesis, the idea of survival can be put to work for the purpose of developing new avenues of research, whose results may eventually engender techniques or devices which might allow us to communicate with the ‘other’ side in much the same reliable and robust ways we communicate with the living today. But for that to happen, not only will we need to actively work to remove the immense social stigma associated with this kind of research, but also raise a question which is practically never raised by survival researchers: Who is our audience?

This question brings us back to the concrete context of F. C. S. Schiller’s sarcastic comment on fundraising for survival research vs. medical care for leprous cats at the beginning of this essay. Schiller’s article was in fact part of an appeal to fellow academics to help him tackle questions that had never been addressed in a systematic manner: Is it true, as it has been asserted by advocates and opponents of survival, that the question was felt by most humans to be of fundamental importance? And was there really a universal preference for survival – or a ‘will to believe’ in it, which, it has often been argued, inevitably contaminated any supporting evidence? Schiller – you probably guessed it already – was a member of the SPR. And like his friend William James, he was on the fence regarding survival but still a vocal advocate of impartial survival research.

To obtain an informed picture of actual attitudes to survival in the educated public, Schiller designed a questionnaire which was sent to around 10,000 participants. The project was quite different from more recent sociological surveys, which have assessed the prevalence of belief in life after death. Among the key questions was if survival was desirable in the first place, while others tried to tease out how common not just a ‘will to believe’ in it was, but also a ‘will to disbelieve’. Most crucially for survival researchers, Schiller wanted to find out how common the ‘will to know’ was. After all, the question whether or not there is an audience for the findings of empirical studies regardless of results, was and is now vital for the future of research funding.

The results of Schiller’s questionnaire study predicted a rather bleak future for survival researchers: Not only was there a high ambivalence in attitudes regarding the desirability of survival. Most significantly for investigators, the results suggested a striking lack of interest by most respondents to have their beliefs or disbeliefs informed by solid evidence. The results were met with silence then, and there has never been a discussion of their implications in the dwindling community of survival researchers up to the present day.

I think this silence spoke, and continues to speak, volumes. The practical point I’m trying to make is this: To the majority of educated Westerners, what I may think is evidence for survival ‘beyond reasonable doubt’ can never be as straightforwardly persuasive as, say, evidence for the discovery of a new butterfly species. The question of survival goes straight to the essence of what we believe, hope, and fear we are. I doubt that anything resembling mathematical proof for survival is possible, but as long as the problem of the ‘personal equation’ is simply ignored, such proof would fall on deaf ears just the same way as the already existing volumes of published empirical evidence has. After all, as Schiller observed, if there is resistance you can’t make someone even add 2+2.

Biases either way do exist and must be dealt with in a systematic way, before there can be any tangible progress. Rather than exclusively focusing on empirical research, I therefore think that public education concerning the nature and history of both conventional and unorthodox science will be just as important as the actual empirical research.

 

Andreas Sommer, “What is the Best Available Evidence for the Survival of Human Consciousness after Permanent Bodily Death? Submitted to the Bigelow Institute 2021 contest on this topic. The paper with all notes and bibliography is available at https://bigelowinstitute.org/Winning_Essays/12_Andreas_Sommer.pdf.

Gödel's reasons for an afterlife

Alexander T. Englert, “We'll meet again,” Aeon , Jan 2, 2024, https://aeon.co/essays/kurt-godel-his-mother-and-the-a...