by Taido
CT was a 57-year-old engineer who had been diagnosed with an aggressive and rare tumour in the abdomen. By the time he saw me, he had exhausted all avenues for medical treatment and had 2 major abdominal surgeries to remove the large masses in the abdomen. Towards the last part of his admission at another hospital, there were serious concerns about his use of opioids painkillers and he was even accused of attempting to overdose and kill himself, prompting an urgent psychiatric consultation. Yet he complained of persistent and severe pain, which could only be transiently relieved with the medications he was prescribed. His brother had asked me to see him, and stated explicitly that he only wanted me to treat the pain so that CT can be comfortable enough for another attempt at cancer treatment by a private specialist, even though he knew CT was already very ill. But beware, CT can be very irritable – he warned.
I saw CT in his house where he was already hooked up to a fentanyl (strong painkiller) infusion. He was snappy as stated. “They don’t believe me (my pain). The pain is horrible!” he protested. After my assessment, I had to agree with him. The tumour had grown into a hardened mass that filled the upper half his abdomen and was possibly infiltrating into the bowels. Fortunately, the pain got better, although it required significantly larger doses of various pain medications. And with the pain better controlled, he was able to get out of the house to meet his buddies, at least for one last time.
But there was always this tension in the midst. Essentially, there was an ongoing stereotypical “Chinese family” squabble between his wife and her in-laws, particularly his five siblings. It also did not help that his siblings were Taoists and his wife was Christian – not that there was any obvious religious disagreement but rather, I believed, it was more an excuse to see each other on opposing sides. Not unexpectedly, CT’s treatment plan became one of the battlegrounds of the domestic struggle – each one had their own ideas about how he ought to be treated. Remarkably, all sides did not desist in their show of love and support to CT, although this could also have disguised an insidious “Who loves CT more?” rivalry.
CT was cognizant about these struggles, and he knew he was the epicentre of the unrest. It was incredible how he had been stoically “taking in all the love”. But as his condition declined, he started to let loose his irritability and anger. The family were disturbed by his emotional outbursts, and were concerned if he should be treated for “depression”. Instead, I offered to facilitate a family meeting where he could let the family know how he felt, if he wanted to. That evening, the family met. It didn’t take long before the expressions of the frustration, the anger towards God that was shockingly punctuated with expletives, and the disappointment that was mostly directed at himself, emerged. No one had expected the rawness of his hurt.
Finally, CT yelled “Please let me die! I am suffering so much already!” and then he sobbed in the arms of his weeping wife.
The family was clearly dumbstruck. Mother then broke the awkward silence and tearfully assured CT that she will respect his choices. His siblings stayed silent.
CT’s condition deteriorated quickly thereafter. The background family drama was very much subdued though still far from being resolved. In some ways, I had now become the temporary switchboard through which their misgivings for each other were channelled and held. CT had further escalation of pain and intestinal bleeding as the tumour grew relentlessly. As agreed, oncologic treatment was suspended though the resourceful family now shifted their attention towards traditional “remedies” such as bird’s nest, Sabah snake grass and deer placenta. He died 2 weeks after the family meeting.
CT had suffered tremendously from the terrible disease – but perhaps what had worsened the whole ordeal was suffering that had been unheard and unattended.
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
Taido is a family physician with an interest in end-of-life care