We all know that death is part of life, and yet our western culture does not treat death that way. Instead, death is often seen as a medical failure or something that should be hidden away out of sight in a nursing home, hospital or hospice. Because we have so little exposure to death, except when we see it on our televisions or movie screens, where death is often over-dramatized, most people know little about what normal death actually looks like. This unknowingness causes people to have many fears and unhelpful beliefs around death. In this blog, I want to explore how death is a natural part of life. Our attitudes toward death are often shaped by the experiences of death from our past. Being raised in rural South-western Ontario, death was a normal part of my life on the farm. Every so often, I would see the “dead truck” come to pick up a dead livestock. When my family got into egg farming, part of my job was to search for and remove any dead chickens I found in the cages. I have childhood memories of my family having a bee where we would kill capons, defeather, clean, and bag them, and then put them in our freezer. From this experience, death was seen as a normal and sometimes necessary aspect of life. Death became more personal for me through the death of pets. I remember as a young boy watching my dad bury the family dog Peggy in the bush when she had died from a farming accident. I recall finding my next dog dead in the machinery shed when I was looking for her one day; she had been sick and was missing. As a father to 3 young children who had many pets, I have memories of them experiencing the death of baby rabbits, guinea pigs, fish floating in the pond, and budgies. I still remember the shock of finding our “pet” snapping turtle dead after placing him in an empty tub overnight while I dug the pond deeper. An owl or hawk had gotten him for a meal for all that was left of him the next morning was his empty shell. From all of these deaths of pets, I came to see death as a tragic but common experience of life. The first human death I remember was my grandmother who died of Alzheimer when I was five. I can picture myself standing with my family and upon seeing my parents crying, I broke down and cried myself. Both of my brothers had a blood clotting condition hemophilia which meant many trips to the hospital for urgent medical treatment. Due to the seriousness of their blood condition, there was a natural anxiety around the fragility of life in my home. This anxiety took on a heavier feel when my uncle George died due to complications from his hemophilia condition at the age of 37. I was aged 9 at the time. The next significant human death for me was my grandfather’s death. On Christmas Day in 1982, my two brothers and I visited him in the nursing home. His heart was failing. We knew he was not well and that we were probably visiting him for the last time. He was conscious and I do have memories of him talking briefly to us and we sharing words of care back to him. In 1985, my family learned that my brothers both were HIV positive due to the contaminated blood they had been taken for years due to their hemophilia. Now with the reality of AIDS, early death was no longer a possibility but a high probability for my brothers. Jamie showed early signs of AIDS in 1989 and died in August, 1992. This was the first human death I witnessed personally. My other brother Kevin died from AIDS five years later. All of these experiences of death have taught me that death can be very personal. It is a time of emotional pain involving sadness, anger, despair, and meaninglessness but paradoxically it was also a time of gratitude, laughter, caring and love, and much meaningfulness and growth for me. Being a church minister since 1993 and becoming a chaplain and psychospiritual therapist during my professional years, I have walked with many people and families through the dying and death process. Now, as a spiritual care provider in the Hospice and Palliative Care environment, I see the dying process playing out all the time. My personal history with dying and death shapes my attitudes and beliefs and how I experience death and dying now. I suspect this is true for each of you. I also know, due to my history, that I have a comfort level and acceptance of death that most people in our culture don’t have. People and families have a hard time facing the reality of dying let alone talking about. This is also true in the medical system where the whole focus on health care is fighting death at every turn. This belief is not only rooted in our medical system; it is also the expectation of our culture, and every person seeking care from our health system. We expect our health system to make us healthy again, and when it doesn’t, we believe our medical system has failed us. We become disillusioned with life for we believe death should not be part of life, and yet it is. As a result, death is often hidden away in nursing homes, hospitals, and hospices and not talked about. While death is a natural part of life, within our Western culture, death is seen as something that should not happen. As a member of Western culture, it is hard to see how one could understand and hold death in any other way. How would we experience the dying process differently if dying was seen as normal and a natural part of life? In his book “Walking Each Other Home” (2018), Ram Dass, a psychologist and well-known spiritual teacher, shares a story where he was confronted by a very different view of death lived by the Hindu people of India. During his first time in India, he was shocked by all the sick people walking the streets of Benares, “lepers, emaciated people with only one cloth wrapped around them squatting or lying in the street” (15). He talks about feeling “superiority, Western pity. ‘Why don’t they have hospitals? Why don’t they help these people?’” (15) That night when he got to his hotel, he shares how he was so overwhelmed by what he experienced that he hid under his bed (15). After becoming a student of the Hindu guru Maharar-ji, Ram Dass began to understand this experience differently. He returned to Benares and discovered what really was happening there. Hindus go “to Benares to die, to release their souls. It is a great blessing for them to be there” (15). At night, Ram Dass “would spend nights on the burning ghats, the stone-slab steps along the bank of the Ganges River, which are the sacred place where Hindus cremate the bodies of the dead in open fires” (17). Ram Dass writes, “the air is filled with prayers, chants, music and incense. Sometimes there would be bodies burning around me in the dark, lit by fires. I’d just spend the night there watching them turn to smoke. I could smell the charred flesh. I would watch as the eldest son of the dead person split the skull before the fire consumed the body. I felt like I could see Shiva (a God with Hinduism) put his hand out and take the person in his realm” (17). Ram notes that India is a place where death is not put in a closet out of view. In the villages, people die at home with their extended families. “When they died, they were wrapped in a sheet. The family would call a rickshaw, and they’d put the body on some sticks and wrap it, put it on a rickshaw, and take it to the burning ghats, right through the streets, chanting the name of God…everyone, including children, would stop and notice” (17). Ram Dass concludes, “death was right out in the open, a natural part of life. It wasn’t an error or failure. It was part of life” (17). This Hindu understanding and experience of dying is very different than our Western culture, one that shocks our sensibility but helps us realize that there are different ways one can approach the reality of death. Death does not need to be seen as a failure or something in life that should not occur. In discovering how death happens often in the homes of Hindu families, I have been surprised by how many people I meet in my current role as spiritual care provider have a similar wish to die at home in Waterloo Region. My experience is supported by an article written by Celina Carter (Registered Nurse and PHD candidate at University of Toronto) based on a 2018 report by the Canadian Institute for Health Information. She states that “three-quarters of Canadians say they want to die in their homes, yet just 15 percent manage to do so” and a “majority—almost 60 percent—die in hospitals, according to Statistics Canada data from 2017” (https://healthydebate.ca/2019/06/topic/dying-at-home/). Why is this the case? Why do not more people die at home, if that is their wish? The reasons vary. Carter notes, “symptoms become unmanageable. Publicly funded services are not frequent enough to meet patients’ needs. Family members become overwhelmed by the unceasing demands. ‘Most people at the end-of-life need 24-hour supervision,’ says Shan Mohammed, professor at the University of Toronto’s faculty of nursing, whose research specializations include palliative care and family caregiver supports. ‘Many families often wind up wishing their relative had spent their last days in a hospice, allowing loved ones to spend more time being with them rather than worrying about symptom management and scheduling care’”( https://healthydebate.ca/2019/06/topic/dying-at-home/). I am finding that this need for 24 hour supervision with basic health care toward the end of life is why many people come to hospice for their remaining days of life. In being a spiritual care provider at the Lisaard and Innisfree Hospice, I have witnessed what dying actually looks like. I see many residents sleeping, sometimes unconscious, in their rooms with family members often sitting in vigil with them. Seeing this pattern has brought memories of what I observed when both my brothers were dying in the hospital. Dr. Kathryn Mannix, a palliative care and hospice doctor in England, describes this pattern in detail in one of her chapters in her excellent book, “With the End in Mind” (2018). She describes, from her early days of training in becoming a palliative care doctor, how she had a mentor doctor who told his clients exactly what dying looked like. This totally shocked her for she had seen no one do this before, and yet the patient was so thankful in being told this information. Now Dr. Mannix makes it her standard practice when supporting palliative care clients. Her mentor doctor told his patient “that you can be sure that we will help you keep any pain manageable” (19). Then he went on to describe what happens. “The first thing we notice is that people are more tired. Their illness saps their energy…As times goes on, people become more tired, more weary. They need to sleep more to boost their energy levels…As time goes by, we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma. I mean that they are unconscious...We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they are actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious. And so at the end of life, the person is simply unconscious all the time. And then your breathing starts to change. Sometimes, deep and slow, sometimes shallow and faster, and then very gently, the breathing slows down, and gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful” (20). One common experience toward the end of a person’s life is what is called Cheynes-Stokes breathing that often includes what people call a death rattle. This death rattle often makes attending family and friends believe that their loved one is struggling. If a dying person was conscious, they would naturally swallow when any saliva builds up at the back of their throat. However, when Cheynes-Stokes breathing is happening, they are unconscious and thus have no awareness and therefore are not suffering when this rattle happens (https://caregiversns.org/resources/peolc/when-death-is-near/#6). If you wish to hear Dr. Mannix describe what dying normally looks like, please click here to watch an eight minute video. I hope you are beginning to see that death is a natural and important part of life. Rather than something to resist at all costs, it is important to see death as a normal part of life, a part of life that can bring much meaning and gratitude to our lives as we embrace it fully.
Questions to ponder:
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