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.
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.
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