Christopher W. Kerr, MD, PhD
Just weeks or even days or hours away from death, the majority of conscious terminally ill patients often experience growth and meaning in their lives and the absence of fear through end-of-life dreams and visions, according to research by Christopher W. Kerr, MD, PhD. Dr. Kerr is Chief Executive Officer and Chief Medical Officer of Hospice and Palliative Care Buffalo, New York, and coauthor of Death Is But a Dream: Finding Hope and Meaning at Life’s End (Avery, 2020).
Published in 2014,1 Dr. Kerr’s landmark study focused on 59 patients in a hospice in-patient facility—36 with a cancer diagnosis. A total of 88.1% reported having at least one dream or vision of a deceased relative or friend; almost half reported the dreams or visions occurred while asleep, and nearly all of them reported the dreams or visions felt real and provided reassurance or guidance; 60% said their dreams were comforting; and nearly 19% said their dreams were distressing. These results are based on a total of 453 interviews conducted with the study participants, with a mean of 7.68 interviews per person. The range of days before death for interviews was 0 to 87, with a mean of 21.6 days and a median of 15 days.
The patients’ dreams typically featured deceased or living loved ones, travel or preparing to go somewhere, pets, religious figures (although visions involving religious themes were rare), and past meaningful experiences. In addition to providing solace and a reduced sense of fear at the end of life, the results of the study suggest these deathbed visions also helped patients gain a new insight into mortality.
“In these experiences, patients aren’t denying the reality of dying,” said Dr. Kerr. “Rather, they are affirming the life that was led and have a way of putting people back together, particularly with those they loved during their life. The end result is that although there is physical deterioration, patients are growing and continuing to find meaning in their life. They are actually soothed in a way that lessens the fear of dying.”
In this interview with The ASCO Post, Dr. Kerr discussed how end-of-life dreams and visions bring comfort to dying patients, the difference between these experiences and hallucinations, and the importance of ensuring that patients understand the reality of their prognosis when cure is no longer attainable.
Living Life Until the End
During our interview, you said that despite physical deterioration at the end of life, dying patients continue to grow and find meaning in their life. Is that comforting or distressing for these patients?
The issue isn’t about mortality at all. End-of-life dreams and visions do not seem to address life and its finality. Instead, they have this way of bringing together the life that was led.
In our study, we used an instrument to measure posttraumatic growth to explore the notion that within an otherwise negative experience like dying, there could be positive psychological gain. To our surprise, what we found is that patients having these dreams experienced significant and measurable changes in adaption to their circumstance, of personal growth, and of gaining insight into their life right up until the last days of their life.
In other words, you don’t stop living because you are dying. And there are often important and profound elements of life, even toward the end of life, and that is absolutely paradoxical to the physical presentation.
Focusing on People Who Mattered Most
How do end-of-life dreams and visions help people in the dying process? What are some common themes of patients’ experiences?
In our study, we asked patients questions about the content, frequency, and comfort or distress of their dreams or visions; they overwhelmingly rated these experiences as comforting, especially as they approached death. I think these dreams draw dying patients closer to what matters most to them for having lived, which is their personal relationships. What is clear is the trajectory of these experiences has prognostic value in that they increase in frequency toward the end of life.
As our study participants got closer to death, they tended to focus on the people they have loved and lost. They focused very specifically on people who loved them unconditionally throughout their lives. What was especially interesting is when we asked patients to rate the comfort associated with the content of their dreams or visions, seeing a deceased relative or friend was associated with the highest level of comfort. Travel or preparing to go somewhere also featured prominently in these dreams.
Bringing Comfort to Dying Patients
In your research, how do you differentiate neurologically between hallucinations and these end-of-life visions? Can you be certain these visions are real and not hallucinations?
Every patient participating in our research is interviewed daily by a study investigator using a standard framework of questions or fills out a questionnaire that includes closed-ended questions related to the presence or absence of dreams or visions. We also assess them for delirium using the confusion assessment method. Patients cannot participate in these studies if they are compromised cognitively in any way that -suggests -superimposed delirium. So, the participants in our studies are cognitively intact.
Delirium is characterized by disorganized thinking that fluctuates. In contrast, these experiences are based on real events and real people. They are highly organized, have personal meaning, and are recalled with clarity (unlike delirium); and the biggest difference is how people feel the effect of the experience. Most patients with delirium are agitated and/or distressed; on the other hand, these dreams and visions seem to bring comfort and insight to patients.
Understanding the Dying Process for Those With Dementia or in a Coma
Do patients with dementia also have these end-of-life experiences?
Patients with dementia were not included in our formal study for reasons of consent. However, we have actually written up many cases of patients not only with dementia, but those who are cognitively different. And it’s remarkable because some do have these dreams or visions; they are just more unfiltered but no less impactful.
What is often lost in the discussion is that these patients have rich emotional or personal histories. Although patients with dementia may not remember what they had for breakfast that day, they often can recall meaningful past relationships and events.
What about patients in a coma or drug-induced coma for intubation? Is it possible to know what their death experience is like?
No, I don’t think there is a way to know how patients in that situation are experiencing death. However, it raises the question of how we manage people at the end of life in these circumstances, which obviously runs the risk of interfering or sterilizing patients from their own dying experience. Putting people in drug-induced comas or using medications to help patients in the dying process cannot always be avoided, but the concern in doing so is it alters how patients observe impending death.
Importance of Love and Forgiveness
Do both religious and nonreligious individuals have end-of-life dreams and visions in which they see deceased loved ones?
Yes, they do. There does not appear to be any difference between one’s religious faith or lack of faith and the quality of these experiences. One reason may be that the overarching themes of these dreams is the importance of love and forgiveness, which is universal, regardless of whether the patient has a religious belief system or not.
Closing of a Life
In your 25-year career as a hospice physician and end-of-life researcher, what do you conclude about the dying process and end-of-life dreams or visions?
I’ve long tried to understand the etiology of the dying process. And I end up at a point of reference for what seems to be a near-universal phenomenon; it is a reminder to me that dying is not defined in its entirety by the physical dimensionality, but rather is really the closing of a life. And it makes sense to me that dying would draw reflection and introspection and that the vantage point is unique and unfamiliar to the living.
It is also noteworthy that end-of-life dreams and visions have been well documented throughout history and across cultures. For many people, particularly indigenous people, such dreams and visions are central to their remaining continuity between the living and the dead. So, our research is shining a light on something that has always been known, but perhaps lost, especially within the modern medical context of death.
Defying and Denying Death
You have said that medical training teaches students “how to defy death, and when you can’t defy it, you deny it.” Are medical schools starting to introduce teaching in death and dying? How can oncologists help their terminally ill patients fear death less?
Medical school, at best, is giving a casual nod to palliative care training, including end-of-life training. Although we have evolved in understanding the importance of end-of-life care, it is not yet enough to make a substantial difference in the care of dying patients.
In oncology, it is such a challenge because patients are looking to their doctor to save their lives. The patients we see go through this transition in the healthiest way, from an oncologic perspective of not only having been on a curative path but having also simultaneously prepared for the worst.
The reality is that dying is far more traumatic when the realization of what is happening is acute. It’s the ultimate insult to entrust yourself to someone who may be aware of the reality of a bad prognosis, but it has not been transparent, or the prognosis has not been fully disclosed. We see patients who have been shielded from their own likely medical outcome and eventually reach awareness of the truth, and they express both hurt and anger about not being informed. And those feelings extend to their loved ones into bereavement.
What I worry about most is that our medical system is becoming increasingly fragmented. Patients are not only feeling lost but are left with a sense of abandonment, particularly when transitioning to hospice care.
We are conducting a study that asks patients in hospice care to reflect on their upstream care. Many report feeling that discussions regarding their diagnosis and prognosis were neither comprehensive nor timely.
What we see all too often is that although advance care planning discussions have taken place, they are frequently oversimplified. For example, the information might be communicated in a way that was not processed adequately or that fully accounted for a patient’s wishes. Again, the idea is not to diminish the effort, but to acknowledge that a better outcome might be possible.
DISCLOSURE: Dr. Kerr reported no conflicts of interest.
REFERENCE
1. Kerr CW, Donnelly JP, Wright ST, et al: End-of-life dreams and visions: A longitudinal study of hospice patients’ experiences. J Palliat Med 17:296-303, 2014.
