by Taido
We are often captivated by stories of people who could remain remarkably calm and dignified in the face of dying and death. Perhaps from such stories, we see a possibility that we too may be able to face death without fear. Sceptics however, might argue that biologically, our whole bodily and mental systems are built for survival, and therefore no one will truly be unfazed by dying, especially just before death.
Nevertheless, lesser sceptics might concede there could be a small number of outliers who are innately courageous, whose dying journeys spawn our folklore. But as far as most of us are concerned, it’s likely we are destined to contend with our fears.
TK was a 69-year-old ex-delivery driver with a particularly nasty type of abdominal cancer (cholangiocarcinoma), and he was patently terrified about dying and death. It did not help that he developed severe abdominal cramps after the initial surgery to remove the tumour, which he had associated with worsening disease that portended imminent death. As the cramps were frequently triggered by food, he became so apprehensive about eating that he lost almost half his body weight over 6 months. While the fear may be triggered by pain, his pain experience was clearly magnified by the accompanying terror. During episodes of crisis, he would cry and wail and moan, much to the distress and helplessness of his family. With the strong opioid pain killers that were prescribed by the doctors, he could have a few hours of reprieve where he would also be sedated. But upon awakening, the same pattern may be replayed. During more severe meltdowns, he had to be hospitalised. His predilection to request for the strong opioids had raised suspicion among his medical team as well as the family, that perhaps all the drama could be attributed to addictive behaviour – in other words, they did not believe his pain.
What was in his favour though, was an incredibly supportive family – but precisely because they tried so hard to help him, the family was also on the brink of burnout. But confronting a fearful person and telling him to stop being frightened is seldom productive. Instead, we believed and treated his pain earnestly but also provided him with alternate medications and explanation as to what the pain meant. We also supported the family with ways to respond to him such that he continued to feel attended to. In summary, it took a few months, but we managed to control the painful episodes, improve his appetite and also stopped all opioids.
Yet the fear did not go away. By this time, it had been conveyed to him that no further cancer treatment would be effective. And while TK intellectually acknowledged this, every time the idea of his impending mortality became salient, he would re-experience another bad spell of cramps and distress. At this point, the family and care team conceded that no preparation would possibly assuage his fear; we just have to contain it and support him as it arises.
With such a background, we could not be more surprised to discover, during a particular home visit, that TK was beaming… no, literally GLOWING with peace! Was this for real? Maybe it’s just for a fleeting moment? But his family corroborated otherwise. For days now, he had been composed and expressing gratitude to his friends and family. It was not that everything suddenly became alright and he was free from pain and suffering. He was frail and wasted as ever, and was still ouching as we turned him and examined his bedsore. But any incidental distress seemed to dissipate quickly, and he would then resume this surreal state of calmness and peace. His caregivers too seemed uncharacteristically relaxed.
So what happened? What transformed him?
One thing that stood out was how much TK was loved by his family. Having been freed from the struggles over real or fake pain, presumptions about opioid addiction and wilfulness, they were freed to love and care for him dearly. His wife, and later joined by his adult sons, were there for his every need around the clock, including the labour to bring him to the bathroom because he initially refused to wear diapers. Of course there were trying moments, knowing how demanding TK could be; such care could not be sustained if they did not love him. Even when he became very ill, the family spoiled him with food choices, and nothing was off the menu; you see, TK was a self-confessed foodie who, in his better days, could whip up some fancy dishes in his kitchen. On a particularly buoyant day, he reportedly polished off a hearty portion of Alaskan crab.
As for TK, while everything about his physical condition had worsened, he seemed to have let go of struggling: with the bodily deterioration, his caregivers, the pain, the fear and even dying. If anything, he had somehow learnt to soften and relax into the love and care. And that seemed enough for him.
During a subsequent home visit when he was already bedbound and drowsy, he could still smile and whispered “Hi”, and indicated he was not in pain. The transformation seemed to be enduring.
A few days later, after an apparently uneventful evening, TK slept as he normally would and stopped breathing in the early hours of the morning.
Ending Notes
The modern narrative on the end of life is often crowded and even fore-grounded by a profusion of medical details — of distressing symptoms, unrelenting diseases, futility and hopelessness. But the end of life is never merely a medical event; it is a human experience that reaffirms the inescapable human condition and what it means to really live, if only we choose to turn towards it. “Ending Notes” is a series of anecdotes depicting these human experiences, from which may be aspects that moves, inspires or edifies us about life. While the stories are based on true events, the characters and background have been fictionalised, so that any resemblance to real person(s) is purely coincidental and perhaps reflect how we can as easily identify with the human conditions portrayed.

Taido is a family physician with interest in end-of-life care