Christopher Kerr, M.D., CEO and chief medical officer of Hospice & Palliative Care Buffalo, has been spearheading research that examines the death experience from the perspective of the patient. The research has uncovered previously unrecognized aspects of the dying process, including vivid dreams that feature the patient’s deceased loved ones.
A body of work is growing around this research, including Kerr’s book “Death is But a Dream,” a TEDxBuffalo talk with more than 3.2 million YouTube views, an appearance in the Netflix documentary series “Surviving Death,” and a forthcoming public television documentary. The new documentary is also titled “Death is but a Dream.”
New York-state Hospice & Palliative Care Buffalo is a nonprofit organization that serves more than 1,000 patients and families daily.
Kerr sat down with Hospice News to discuss the research and how it can inform the care providers offer to patients.
Can you describe the research that you are doing?
I’ll tell you a little bit about how it began. More than 20 years ago, it was really my non-physician colleagues in hospice who got me to realize the importance of the non-physical dimensions of dying, the experiential piece of it from the perspective of the patient.
There was a time I was teaching medical students and residents. I had a hard time getting any receptivity from them, because their response was always “Well, there’s no evidence for this.” The truth is that there’s an abundance of evidence, but it was often from the humanities, or it was surveys, or anecdotes, patient stories, but nothing of rigor. So we designed a series of studies. We have eight published manuscripts in this area.
We just did things like set up standardized questionnaires, and we interviewed people daily. We did things like rule out for delirium or confusion. We attached some methodology to it. We validated our instruments. We’ve done other studies where we’ve looked at dying as a kind of post-traumatic growth, so positive gain from a negative or adverse experience. We’ve used validated tools. We’ve put structure and some rigor to how we ask questions.
The other thing that we’re very conscious of is that we didn’t want pre-death studies to be viewed as a keyhole into the afterlife or religious perspective. We’re just examining dying as kind of this mystery unto itself.
Can you share some of what you’ve learned so far?
The best way to sum it up is that dying is much more medical phenomena. Viewing it simply as an organ system failure falls short of what it truly is — which in the final analysis is a very human experience. It’s the closing of a life. People die in totality, not by part. This naturally changes your vantage point. Your perspective and your perceptions change as you’re nearing the end of life.
What’s remarkable is that among everyone who has spoken of this through the ages, there tends to be these very profound inner experiences that either come out through conversation or through dreams, where there’s reflection on the dying process, There’s change in sleep architecture, levels of alertness, and people have very, very vivid dreams. When we measure them on a scale of realism, zero-to-10, (with 10 being the highest) they tend to be strikingly vivid. They’re often described as actually lived experiences and recalled as though they actually happened. As people draw closer to death, there’s a dramatic increase in the frequency of these events. They’re recalled with clarity. They’re 100% distinct from confusional states.
Thematically, we see some very interesting patterns. As you get closer to death, the dreams are ever more populated by the people who you’ve loved and lost. When we looked at comfort relative to (dream) content, these were the dreams that provide patients with the greatest comfort. There’s this inherent process in dying, when you’re physically declining, yet you’re emotionally and spiritually very vibrant and alive. I think in the final analysis, what’s happening is the life that was led as affirmed. In doing so, the fear of death diminishes. None of these experiences deny death, but they almost transcend it.
These experiences are incredibly common. In our studies, about 90% of patients relayed at least one experience, and about 88% of them were overwhelmingly positive. It’s a very different way to appreciate the dying process as more than either the physical suffering we observe or the grief that we anticipate.
Could you go into a little more detail on your research methods and how you’ve gathered this information?
It’s all people who are in our hospice program, and others have replicated this in other hospices around the world and come up with similar findings. We started in our inpatient unit where generally people are there for a few weeks. We branched out to home care and went several months upstream from death.
How does this research fit in with the larger body of work related to this, your book “Death is but a Dream, the Netflix documentary series “Surviving Death,” and the forthcoming PBS documentary?
This work was originally intended for a medical audience. It turned out that they didn’t have a lot of interest in the topic. And then what happened was interesting — it seeped out into the non-medical community. It ended up on major media platforms in this country and around the world with a momentum that’s been absolutely stunning. I think there’s a story there, which is there’s this disconnect between how the medical community may value these experiences, and how the people who are the recipients of our care value these experiences.
I had no personal interest in going in these directions, either with a book or a film, but the response has been overwhelming, particularly from family members and caregivers who had experienced this but had no context in which to interpret it. That matters because one interpretation is that somebody is losing their minds, or they have metastases to their brain, or this is drugs or deoxygenation, and so forth. Some people were reassured and comforted by knowing that this is actually more common than not, aand it’s more or less inherent to the process. It was really the response of the non-medical community that propelled this forward.
Can you offer some insight as to why the medical community was less interested in this work than the general public or the non-medical community?
Doctors are progressively less acquainted with dying and really are focused on curing at all costs, when really the obligation is to also comfort. I think our care system has become ridiculously fragmented. We have an abundance of spot welders who look after various organs, but there’s less taking care of the person comprehensively and less of involving the family.
There’s discomfiture with dying. There’s a lack of responsible oversight and ownership. We have a cure-all system that’s death-denying. Unfortunately, our health care model is predicated on intervention and doing things to people. When there’s less to do, when someone is no longer treatable, they literally fall off the cliff. There isn’t even a billable model for providing care in that way beyond hospice. There’s a certain kind of institutionalized abandonment of a dying patient.
If doctors are uncomfortable with dying, they’re less interested in the experience of it. When it comes to these abstractions, like dreams for example, I think that even comes trickier. Systems are more comfortable with the brain than they are with the mind. They’re more comfortable with the objective than the subjective. We’re asking people to appreciate something that can’t be seen, biopsied and measured. It doesn’t make it less real or significant to the patient, but it changes the view for the observer.
It doesn’t all fall on doctors. We as a society are somewhat consumer-based, always assume there’s something that can be done. Dying is less acknowledged as inherent to the human experience. We’ve medicalized what is just a very human event.That in itself is sterilizing.
How would you differentiate a “human event” from a “medical event”?
Ideally, a medical event would honor a human event. But in our medical age, medicalization of care has actually become so organ system-based, sub-specialized and intervention-based, that it biases the trajectory of care in a way that is less able to recognize the patient from the person.
We’re very good at trying to figure out what’s wrong, rather than asking how they are. There’s a difference. We’ve become more like technicians, and it’s harder and harder for doctors whose model of care puts a premium on efficiency to stop and provide what the patient needs, which is simply a presence. Our quantity of work is squeezed in a way that doesn’t allow somebody to just sit and communicate, to get to know that person in a meaningful way. We’ve become remarkably comfortable saying the worst things you can say to another human being in need, which is there’s nothing more we can do for you, by which we really mean there is nothing more we can do to you.
It’s very interesting working on this side of the fence in hospice, because one of the most prevalent symptoms we see as patients leave hospital to come into our inpatient unit is a feeling of abandonment. They entered this disease and care model with a physician who they thought they were going to be walking the path with, and when they were no longer deemed curable, then they got handed off to somebody else. I really don’t mean to blame the physician as much as I do a model of care that values outcomes in a different way.
How do you think that this work about the end-of-life experience will ultimately influence the way hospice care is provided?
I think it really honors the best intentions of those who framed the hospice benefit. The hospice benefit is rich in a way that allows for the inclusion of a multitude of disciplines that takes care of the person in totality. The goal of palliative care is to relieve suffering in all its forms, including the existential, spiritual and psychological. These sort of discussions remind us to place value in areas beyond a limited definition of medical care. Hospice does that beautifully, and I hope it’s treasured.
Our society is wanting to understand and take ownership of their own dying process. We’re seeing multiple areas where this is popping up, death cafes, death doulas and others. There’s this movement towards reclaiming the dying experience from a solely medical paradigm only. Our work is just part of that equation.