A sharing by Taido
The circumstances leading to J’s terminal illness diagnosis, had become so often repeated in urban narratives, that notwithstanding how regrettable it was, the disbelief and sympathy that normally came with “not again?”, was also tainted with some degree of exasperation and jadedness. J was the middle-aged, work-obsessed, mid-level manager of a marketing firm, who had in the preceding months, worked tirelessly through a project, reckless to what his body might be telling him. That he should be feeling lousy, losing appetite and weight, was not “unexpected” given the inundation at work. And as so often happened, the benefit of hindsight had to wait till there was time for medical attention AFTER he had signed-off the project, which eventually led to the diagnosis of advanced stomach cancer.
As usual, I saw him when the disease had already become unresponsive to the available treatment options. The pain, which was caused by extensive cancer spread to the liver, had compelled the use of higher doses of analgesia for adequate pain control. He was also imminently slipping into liver failure, which could lead to fluctuating levels of alertness and drowsiness, disorientation, confusion, restlessness before eventually slipping into terminal coma. During the morning visit, his wife gingerly broached a request, supposedly on J’s behalf.
“Doctor, do you think we can reduce his pain meds so that he can be a bit more wakeful?”
Such a request is not uncommon, and simple as it seemed, has many layers of meaning. Many patients and family members are wont to attribute drowsiness and sedation to the use of opioid pain medications, rather than the dying process. Often, it is after the turmoil and distress from pain has settled with pain treatments, that they get worried about the “drowsiness”. However, these medications do contribute to drowsiness especially at higher doses, and it is also true that some patients might choose to be more alert over being totally pain-free and drowsy. In addition, such a request could certainly arise from veiled concerns about his impending death.
I attempted to explain the various reasons why J may be drowsy and the risks of undertreating his pain. But eventually, I sensed something else was there: “You seem quite concerned about his drowsiness…”, I finally reflected to her.
“Err… yes. You see, there is this big football match coming up… J’s brother is wondering if the family and friends can come over to watch the televised match together.”
Now, this was clearly loaded. She may be asking coyly just because like many, she was unsure if such a request would be deemed frivolous in the context of the medical imperatives. But that aside, I was not sure if J had a football family, or a “football widow”, or was it just J’s brother’s idea and whether J could be in any condition to watch or even enjoy it. I signaled J’s wife to the doorway: “What do you feel about him watching this match?”
“I am okay with him watching it. I think he would love it.” I then found out that she often watched football with him, together with his siblings and work buddies. But I still needed to know if J was game for it – after all, priorities do change when one is dying.
While it cannot be an expectation for all dying patients, some of them seemed capable of summoning a remarkable burst of energy from an unfathomable source, when it comes to engaging in what really matters to them. As I broached the topic of the upcoming match, J’s face lit up – he was a staunch Liverpool Football club fan. And the match, between Liverpool and Spanish club Real Madrid, was the UEFA Champions League 2022 finals. This was a particularly big deal as it would have marked the culmination of an epic season for Liverpool FC. And the match would be telecast live at 3 AM Singapore time, in three days’ time!
Theoretically, we could still attempt to sustain his alertness by adjusting his medications and mitigating the toxicity of the liver failure. But ultimately, whether he could stay well enough over the next three days would be wholly decided by the body, regardless of his spirit or will. Many clinical situations can also arise that might negate all our efforts.
Let’s plan for the game, but we keep an open mind about how things play out – I thought this was as much as I can promise.
“So, it is alright for him to watch… I mean, is it safe?”, J’s wife finally came up with her own concern.
Suddenly, I felt rather torn – it was conceivable that the potent mixture of metabolic toxins, medications, and high-intensity cliffhanging football finals, might be too much for him to deal with. And what if Liverpool loses?! (Incidentally, there was a medical report on the increased deaths from stroke and heart attacks among fans of the losing side). A huge part of me did not want to disappoint J, as this would almost certainly be the last match that he could ever watch. But honestly, there was also another part that preferred him slipping away peacefully and without commotion. It struck me then how easy it was to be caught up and immobilized by these convolutions; in the end, we can only attend to what each moment of life calls for, one moment at a time.
Thankfully, the following days were relatively uneventful, except for some episodes of brief confusion, which reminded us that his condition was nonetheless deteriorating. I saw J again the afternoon before the game. He was clearly in good spirits, buoyed by a remarkably casual gathering of family members and friends, who had transformed his room with the buzz of a carnival. J’s brother gave his assurances: they will watch out for J, it won’t be rowdy, and no alcohol.
I woke up early the next day, due in no small part to my neighbors’ passionate shouts of “GOAL!” in the early hours of the morning. I reached for my mobile phone to check the news: final score: 1-0 in favor of Real Madrid. Sigh.
As I entered J’s room later that morning, he looked tired and blunted. Oh dear, he must be so upset, I thought.
I approached cautiously, ready to skirt around the aftermath of the game. But to my surprise, J turned and grinned.
“It was a good game”, he said slowly but clearly, the supposed obtundation all but vanished.
J’s wife chimed in: “Oh he enjoyed the game. He was a bit tired, but he could follow the game. Not confused at all”, she said gratefully.
“Too bad they lost”, he followed. “Would have been better if they’d won”, J said with a chuckle. “But it was a good game,” he repeated.
My initial surprise gave way to a huge sense of relief. But on reflection, it was really not that unbelievable for a staunch supporter like J, to stand by his team through the ups and downs. Indeed, true support, whether it is among football fans, or family, friends, or care workers… is about being there regardless of the outcome. Or as they would sing at Anfield, “You’ll Never Walk Alone”:
… When you walk through a storm
Hold your head up high
And don’t be afraid of the dark
… At the end of a storm
There’s a golden sky
And the sweet silver song of a lark
… Walk on through the wind
Walk on through the rain
For your dreams be tossed and blown
… Walk on, walk on
With hope in your heart
And you’ll never walk alone
… You’ll never walk alone
… Walk on, walk on
With hope in your heart
And you’ll never walk alone
… You’ll never walk alone
J died 2 days later, accompanied by his family.
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.
