Dr.
Christopher Kerr writes of dying patients having dreams or visions of
renewing friendships with deceased friends and relatives:
For patients suffering from Alzheimer’s and other dementias, the line between the ELDVs in sleep versus wakefulness is even more blurred than the reality they cannot share. And because people with dementia exist within an unshared world, their dream experiences ultimately remain their secret. Yet these patients also frequently undergo inner changes as part of the dying process. It may be that they heal old wounds, reveal what’s lost or reclaim distant love. We may not be able to collect evidence to prove it, at any rate not of the kind that would withstand scientific scrutiny, but I have seen the process unravel again and again. I have witnessed patients with severe cognitive loss paradoxically experience a vibrant and rejuvenating end of life. Again, we see that regardless of age or cognitive status, one’s sense of self and one’s existence expand as the body and even the brain, fails.
Autism too is one of the conditions that often lead to misconceptions about how affected people process the larger meanings of death and dying. Assumptions are made about how they may or may not respond to a terminal diagnosis and what information should be shared. I don’t presume to have answers to these questions, but I have witnessed in such patients a remarkable resilience; an ability to cultivate peace as well as find meaning within their illness.
End-of-life experiences in particular have the potential to help the dying reach emotions that may not otherwise be accessible. This was the case for a patient named Andre, a man with autism, who provided yet another powerful reminder that conclusions and conjectures surrounding end of life can only be accurate if they draw on patient testimony.
Andre was a high-functioning autistic man who had worked as a bag boy at a local grocery store for most of his life. After his parents died, he was cared for by his cousin Lisa’s parents, and years later, when she became a mother of three, he was integrated into her family. Andre would live with Lisa’s family for the next thirteen years until his death at 75, and his purity of heart and joyfulness grounded his strong and easy identification with their children. Lisa’s son Hazen was 3 years old when Andre moved in, and the two connected instantly. They became inseparable, the best of friends, playing nerf guns around the house, communicating with walkie-talkies from different rooms, dressing up for Halloween, carving pumpkins, and hiding under piles of leaves in the yard. Andre loved family trips and Easter egg hunts. His family described him as “childlike’ but also respected his strong sense of independence. He could put together breakfast, make his own lunch for work, buy things in the store with little to no help.
In May 2017, Andre, then 74, was diagnosed with congestive heart failure and bladder cancer. The doctors estimated that it would be his heart not the cancer that would eventually cause his death. None of this was shared with Andre, who went on to live happily and unencumbered until his stroke on December 1st, 2017. Lisa and her husband Merle focused on helping Andre each day to the fullest. At this time, he was using a walker, and had a catheter bag 24/7, but he always smiled and met each day with a sense of wonder. He lived without a full awareness of his terminality. This is why it was so moving to Lisa when a month before he died, he started seeing what she later identified as deceased relatives. It was always during the daytime hours, and she could tell when it occurred because he would stare at the window with big, open eyes. In these moments, Merle noted that Andre seemed to “perk up” with an “excitable curiosity” that he immediately wanted to share.
The first time, it was a man with a hat. Andre didn’t recognize who that was, but it was a friendly presence who waived at him. The next time, it was a man and woman. Lisa would go through old photos with Andre, and he thought the woman he had seen looked vaguely familiar... maybe like a grandmother. His description, however, fit those of her long-lost relatives to a T. The "visits" happened almost daily. He once saw another man taking pictures, which also happened to be his favorite hobby. On another occasion, it was Lisa’s deceased mom who was in the room and whom he pointed to while talking to his second cousin. She was sitting on his suitcase, Andre exclaimed with a laugh. Like over two thirds of our patients, his ELDVs included themes of “preparing to go”, either through travel or packing.
To Lisa, Andre’s most moving vision was the one he had of her nephew Lucas as a boy. Lucas had died at almost 6 years old from an aggressive form of leukemia. He was the same age as Lisa’s daughter Gabrielle with whom he had grown up. The two kids were inseparable, and their favorite thing in the world was to catch butterflies. It was fitting Andre’s inner experiences would reflect his fondness for children.
Andre’s vision included a child chasing butterflies. But it meant so much more than a snapchat of a past attachment. It also carried a message which he matter-of-factly relayed to Lisa in the following words: "He told me that he had died". This was how his end-of-life experiences most effectively familiarized him with the imminence of a death he had not been told about, by making mortality as conceivable and harmless as chasing butterflies. Andre lived these pre-death experiences as if they were natural extensions of his everyday life. He never paused to wonder whether he was dreaming. He didn’t ask who these people were. He was not worried about what this could possibly mean. He just knew at an intuitive level that these were real and positive experiences that made him feel good. He felt secure, surrounded, loved. And he giggled.
For Lisa and Merle, being able to share Andre’s end-of-life experiences, sometimes through the photo albums and pictures in which he recognized a face, was an unforgettable time of togetherness. Their daughter Gabrielle was similarly moved; they allowed her to revisit her pre- teen years with her beloved cousin Lucas without reliving his unexpected and tragic loss. The whole family found comfort in knowing that Andre was blessed with end-of-life experiences that helped him transition with what he cherished most, his sense of belonging. Lisa commented that while “so many are on drugs for pain at the end, Andre was not”.Andre’s last inner experiences were not only comforting to him but, in Lisa’s words, also “welcoming”. He was “fully awake” up until two days before death.
Whereas most of us exist with clear definitional boundaries between what we perceive as reality and what our inner life and unconscious tell us, Andre moved seamlessly between the two, through the consciousness of relatives who came back to soothe him in his ELDVs. For him, pre- death dreams were less about a new, emerging consciousness that had to be reconciled with his surroundings than an extension of the love and supportive people that had always defined his life and relationships. Andre’s inner experiences represented a continued reflection of who he was through consciousnesses that merged with his. His persona never varied with circumstance and his disposition remained as beautiful as it was true. His was a journey through grace.
That patients with cognitive impairment have as lucid and meaningful ELDVs as neurotypicals not only speaks to our inherent humanity, but it also suggests that consciousness exists regardless of the cognitive differences that surround it.
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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