The death whisperers
Source: Kate Legge, The Australian, May 21, 2011
THIRTY years ago my mother came home from hospital to die. Wasted by her terminal illness, she could barely summon the strength to talk.
Late one afternoon I was sitting beside her bed when her beautiful face scrunched up and her body grew restless. “They’re digging outside,” she told me. I couldn’t hear anything. It was an Easter holiday weekend and quiet outside. The sound of earth being turned continued to rattle her. I went to check if a council crew had been working on the road but there was no sign of shoveling. This articulate, well-educated woman who rarely put a word out of place had been at times incoherent as her condition deteriorated. “There’s no digging,” I reassured her. I assumed she was delirious and trying to string together scattered thoughts.
I wish that I had asked her to tell me more. That’s what palliative care physician Michael Barbato (pictured) would have done. He’s a death whisperer who has attended to the dying for over two decades. Beyond the pharmacological bag of opiates that ease physical distress he’s found ways of helping patients confront the fear and trauma of their demise. Deciphering the esoteric realm of deathbed experiences now consumes him. He’s heard patients recount visits from dead relatives, most commonly their mother. He’s listened to out-of-body experiences and vivid commentary from bedridden souls who talk of catching trains and planes or describe the landscape of a destination. He’s heard the terminally ill name the faces crowding around, faces nobody but the patient can see. He’s observed the dying suddenly sit up or reach out to those beside them.
What happens during the days and nights before the dying take their last breath? How do patients endure the loneliness, the white-knuckled fear of the unknown, the psychological trauma of letting go? Nurses, doctors, chaplains and those who care for the dying brim with mysterious coincidences, patient premonitions, visions, auras or, as Helen Walker, the director of Melbourne’s Cabrini palliative care unit, puts it, “the amazing energy” often felt in the room as a person dies.
These phenomena are different to the “near-death” sensations of bright lights and tunnels reported by those who recover from trauma or cardiac arrest. There is fierce debate between sceptics, who dismiss them as hallucinations, drug-induced imagery or the effect of oxygen deprivation, and researchers, including medical professionals, who are intrigued by new evidence of their prevalence and significance. It is a field rich with controversy, but those who dwell close to the dying embrace the inexplicable as part of a day’s work. “A week doesn’t go by without these things happening,” says Barbato, 68. “We’ve all seen it,” Walker concurs. “It’s an extraordinary thing.”
Planning ahead
“I’m not scared of death,” says Bob Morrison breezily between chores at the small vineyard he runs with his wife, Dianne, near the Victorian town of Glenrowan. Both retirees in their 60s, they’re vigorous and full of vim, which is why their four daughters were taken aback when the couple recently announced a plan to prepare for dying. They promptly began detailing preferences for end-of-life care – “ease the pain but no futile medical treatment” – making wills, and choosing commemorative services. Bob’s ashes will be scattered over Mount Glen Rowan as a train goes past, since this former school principal is a stickler for timetables. What inspired this rush was a forum organised by the regional health service, which boasts forthcoming events from memoir-writing to a talk on “Living and Dying Well”.
Given society’s obsession with quality of life it’s only natural our ageing population will begin to scrutinise what constitutes a good death and how we might improve the inevitable. Once shelved at the back of our minds as a subject for the never-never, death increasingly concerns us. La Trobe University’s palliative care centre encourages “cafe conversations” around death and dying to help people consider fears and choices. Cabrini’s Helen Walker says: “We try to risk-manage earthquakes and fires but we don’t prepare for our own death.” If this seems morbid, consider that an acquaintance with death enhances our appreciation of life. The growth in palliative care has driven research into dying and revolutionised bedside rituals to strengthen emotional and psychological support.
Death’s waiting room is brighter. Families are encouraged to celebrate the legacy of a life. A young mother with a terminal illness might make a scrapbook with letters and wisdom for her children. Photographs of people and places decorate walls; music may fill a room, or the soothing narrative of a story being read out loud. Just as hospitals were encouraged to reinvent the practices and procedures around birthing, there is a momentum to do death differently.
Barbato talks about caring for the dying as a lost art. He says the medical model is excellent in providing comfort but much more can be done through a holistic approach and healing environments that lessen the sense of helplessness. “Death is not the conclusion to a series of medical events but a profound human experience. As someone approaches death their emotional and spiritual needs are as great if not greater than those of their bodies,” he says. Deathbed visions and what he calls near-to-death experiences are to him “extraordinary gifts waiting to be shared”.
Barbato’s fascination began 25 years ago as a ¬specialist physician in Armidale, NSW, where he encountered a young man called Ian who was dying of acute leukemia. Ian was admitted to hospital after an unsuccessful bone marrow treatment and very soon lapsed into a coma. “He was expected to die within 24 hours,” Barbato says. Ian’s sister was travelling home from overseas and not expected to arrive for several days. To the amazement of family and medical staff Ian held on, opening his eyes the instant before she walked through the door before dying with a smile on his face several hours later.
Raised as a Catholic, Barbato no longer has any religious affiliation beyond a yearning for spiritual nourishment. Given his relish for symbols and metaphor it’s unsurprising he acknowledges destiny tugging him towards palliative care. The death of a four-week-old baby daughter, Moira, from SIDS several years before had led him to begin questioning medicine’s brusque manual for the end of life. Grappling with his future he planned a bushwalking trip but heavy rain marooned him at home, where he reached for a medical journal that fell open at a page with a job advertisement for the hospice attached to Sydney’s St Vincent’s Hospital.
One morning he was called to see a patient called Rhonda, who was stricken with bowel cancer and writhing in pain. He asked: “Tell me what is happening?” She described a maze of colours that frightened her. He wondered whether there was any place where she could escape. Rhonda told him “the dark blue is beautiful”. Every time the pain intensified he suggested she return to the dark blue, which brought instant relief. After some time he asked, “Is anyone there with you?” To his astonishment she said “yes” and identified two relatives who had died some time before. He asked, “Do they have a message for you?” to which she replied, “Yes. It’s OK.” She relaxed and went to sleep with no further agitation. Soon afterwards, she died.
When Barbato first began writing about these phenomena in the late ’90s he was regarded as “very fringe”. Now he tours the country addressing conferences of doctors, nurses and palliative care staff. “People who once thought I’d lost my marbles are now prepared to listen.” Later this year he’ll head a research project in Port Kembla to measure levels of awareness in the unconscious brain and the effect of opiates such as morphine. But he disputes that these experiences are the by-product of drugs. His book Reflections of a Setting Sun recalls a dying patient who reported hallucinations of spiders and strange creatures among apparitions of his dead brother. “At the time he was on a moderate dose of morphine… Once the morphine was substituted with another pain reliever, the spider hallucinations disappeared but the visions of his brother continued up until the time of his death.”
Cynics roll their eyes at the wackiness of bedside sequences that have a whiff of séances and ouija boards and a touchy-feely language that frolics outside science’s comfort zone. But two recent international studies of these visions and experiences conducted by the director of Bath University’s Centre for Death and Society, Professor Allan Kellehear, map their frequency and catalogue their content.
Interviews with family members and the ¬primary carers involved in more than 200 deaths in India and the eastern European republic of Moldova confirmed deathbed visions in 30 per cent of cases. The sight of a deceased relative standing or sitting in the room is the most common apparition reported by the dying, typically the patient’s mother.
Conversations are held with visitors who appear almost as escorts. Usually the presence of these “invisible companions” is the only disturbance in the patient’s visual field. Some visits are a once-only affair before death while others drop in regularly over a period of days. Use of opiates does not appear to have influenced reports of these encounters in both groundbreaking studies, which were published this year in the rigorously peer-reviewed Omega Journal of Death and Dying.
“Let’s stop with the cheap explanations,” Professor Kellehear says, pointing to numerous cases where these visions happen independently of medication or oxygen deprivation. He’s just as wary of “new-age nonsense” and suggestions that these visions are a window to the afterlife.
Dying has never been sexier. There’s a thrill to this mystery and the buzz generates attention. A small Irish survey of deathbed activity by Una MacConville, one of Kellehear’s younger ¬colleagues, made news in March with its finding that almost 70 per cent of palliative staff believe these visions are different to drug-induced hallucinations. Kellehear is now collaborating with the author of a large UK study which recorded visions in only 10 per cent of cases to test whether Western medicine’s higher use of opiates discourages deathbed experiences. “Do we want to continue heavy doses of medication if these visions are comforting? They bring companionship, hope, reunion, comfort; every function is positive. When you work in death and dying you hear and see strange things and this is one of them. I believe the best attitude towards these things in a secular society is they give you pause to think about what we don’t know. They are at worst harmless, and at best comforting.”
The youngest participant in the Indian survey was eight-year-old Anita, who died from AIDS at home in northern Kerala in late 2009. During the weeks before her death she refused most of her prescribed medication. One day she announced to her mother that her late grandmother had come to sit and chat with her, occasionally calling for her. The grandmother had died four months earlier. After telling her mother in a matter-of-fact way about her conversation with her dead grandmother, Anita told her mother: “Don’t hug or hold me anymore. I need to go now.” Several hours later, Anita died.
A similar event was documented almost 100 years ago by British physicist Sir William Barrett in his pioneering book on deathbed visions. The story concerns a young school-aged girl called Hattie who, according to her brother, “was passing away ... when she suddenly raised her eyes as though gazing at the ceiling … after looking steadily and apparently listening for a short time, slightly bowed her head and said, ‘Yes, Grandma, I am coming, only wait just a little while, please.’ Our father asked her, ‘Hattie, do you see your Grandma?’ Seemingly surprised at the question, she promptly answered, ‘Yes, Papa, can’t you see her? She is right there waiting for me.’”
Not everyone near to death reports seeing or sensing the presence of relatives who have gone before them. “You’d best ask the cleaners what they hear,” jokes Deborah O’Connor, 53, a former palliative care nurse in the Newcastle region who has watched “hundreds of people die”. She believes patients are just as likely to reveal visions to a worker with a broom than a doctor in a white coat. Her first glimpse into death’s secrets occurred in an oncology ward during her early 20s. “There was a young man who had died in the room with his family and I saw an aura coming off him. It was like a mist. I didn’t tell anybody for years. I’ve never seen it again.” Researching her master’s thesis on this subject, she spoke to two nurses who were in a room with a patient’s husband when they all observed the same “aura”.
Familiar with the spectrum of possibilities that may distinguish a death, she rattles off things she has encountered. “Most commonly people tell me they have seen dead relatives. Families will come to us and say, ‘Joe’s saying his mother came to see him, but his mother died 20 years ago.’ I have seen, and nurses have reported to me, patients doing things they haven’t been able to do for weeks, like sitting bolt upright in bed with a sudden super-consciousness. Sometimes they might say things like, ‘I’m coming.’ Patients may wait until a loved one gets there before dying and sometimes they choose to die only after somebody special to them has left the room,” she says.
Now health promotion officer with La Trobe University’s palliative care unit, O’Connor urges nurses to accept these events as a normal occurrence. “Families often find it distressing. They think the patient is out of control, hallucinating. If they understand these things are quite common it settles everyone down,” she says. “The point I make is that if a dying person says it’s happened, then it’s real for them. I don’t think people go around making these things up. They’re dying. They’ve got nothing to lose.”
The ultimate solace
The death whisperers see all kinds of deaths: the peaceful, the painful, the good, the bad, and the very distressing. No one I spoke to mentioned another “aura” but everyone has their favourite spine-tingling anecdote of vigils enlightened by extraordinary occurrences. Helen Walker of Cabrini recounts an incident this year involving a patient I’ll call John, who loved playing Scrabble. His family set up a board in the ¬corridor outside his room. On the day of his death his daughter-in-law picked up her letters for a game that was abandoned suddenly when they were called in to say farewell. Later, when she was cleaning up the set, she looked at her rack of letters to see J-O-H-N P-A-X. Family and staff felt sure this was proof John was at peace.
Who knows what happens to the spirit and the soul and the mind when the body shuts down? The truth is, no one does. Perhaps visions are a defence mechanism, death’s version of a lifeline, something to satisfy the essential human desire for hope, for company in desperate hours. The sight of one’s mother seems entirely plausible as the ultimate solace to shepherd the dying. Educators in palliative care want to encourage discussion of these experiences and further research into whether they should be facilitated rather than medicated. Physicians point to emerging ethical dilemmas as hospital policy adapts to the push for a more holistic approach to death.
Associate professor Mark Boughy, director of palliative care at St Vincent’s Hospital in Melbourne, canvasses the challenge. “Do you treat delirium or leave it to the family?” he wonders, disclosing the spectrum of behaviours he believes help people through the agony of bereavement – from patients suddenly opening their eyes to address family to dreams and imagery, visits from mother- and father-figures, and what he describes as “the presence” often felt in death’s wake. “Rather than say ‘is it true or not true’, we should accept it as a positive thing… Ultimately they are, in a special way, reassuring in the lead-up to death.”
Marilyn Hope, a senior chaplain at Melbourne’s Alfred Hospital, agrees. “Often it’s a close relative, a mother, an older sibling or partner, and they are no longer so afraid of dying. I don’t know what to make of it but given the effect for those people, I trust it. Why it happens to some people and not others, I can’t explain. Most people are afraid of death and the thing they talk about is their anxiety at leaving loved ones.”
Sue Retschko, an Anglican chaplain at Melbourne’s Monash Medical Centre, relates stories of “near-death” visions where a patient is in a tunnel leading towards a place of light and peace as well as the “near-to-death” experiences associated with the terminally ill. “A patient often tells me that their partner or a loved one is standing or sitting by their bed. Can this can be explained away as wishful thinking, a delusion, or induced by medication? I can’t say... On many occasions I have felt an unusual sense of peace in the room as a person is dying… Sometimes a dying person waits until the last member of the family has come... Sometimes the dying person engages in a conversation with an unseen presence. I can clearly remember being with a man very close to the end. He suddenly sat up in bed, eyes alight, seeing and apparently responding to a presence invisible to those of us by the bed. He called out a name. ‘That’s his wife, our mother’, said his son.”
Like so many guardians of death, Retschko believes these metaphysical experiences serve a purpose. What causes them is of less moment than the relief they appear to bring to the dying and the survivors gathered around the bed. When I brief The Weekend Australian Magazine’s photographer, Adam Knott, on my peek into death’s antechamber he tells me that his Uncle Trevor experienced visions as he lay dying from pancreatic cancer in 2000.
“He was visited by his daughter, Deb, who had committed suicide three years earlier, and his long-dead mother. He told us they were in the room. He said, ‘I can see them at the end of the bed’. At other times throughout the last few days he mentioned that they were sitting by the window. They seemed to come and go. We found it really comforting. I couldn’t see them but he could, and we felt as if he was going to some place good.”
Awe and mystery warms the world of death whisperers. Practitioners in hospitals and hospices describe a sense of privilege that inspires them as they minister to a person at the end of life. Michael Barbato is right when he says: “There’s a real art to this.” I wish I’d been more attuned to my mother’s journeying into the darkness. I often wonder whether the digging that haunted her in the days before she died was an auditory dream. Was she imagining the ground being prepared for her burial? I’ll never know. My literal interpretation of her experience meant I missed a cue to talk about her terror and mine and the gaping hole her death would leave in our lives. Perhaps when it’s my turn she will come for me and sit by me until it’s time to go.
