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.