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.