By Taido
I sat with Joe, who was just 26 years of age, as he started to weep – the first time I saw him cry. While his peers may be forging ahead with their personal and career milestones, Joe’s life had all but come to a standstill. He was on no-pay leave to spend time with his mother who had terminal breast cancer. She had been deteriorating and she had several hospital admissions over the last year, and was now readmitted yet again. What triggered this moment of despair though was not just about how ill she had become, but rather, the pressure about keeping her in treatment. It appeared that her healthcare insurance claims were approaching the pay-out limit and Joe had been receiving reminders from the insurance company that further bills will not be claimable. Like many patients seeking care at private healthcare institutions, Joe’s mother was only able to afford private oncologic treatments because of her insurance policy.
“The oncologist said there is another treatment that can be attempted!” he reported. He felt torn by his desire to let mother go ahead with the treatment, and the anticipation of bills that he cannot afford. Father was a delivery driver and was not savvy in handling such financial matters. Joe was also the eldest of three children, and the family’s first university graduate. In our earlier conversations, he had already revealed how he needed to stay strong in order to rally his younger siblings to face mother’s illness. Joe felt that he alone, was obliged to hold everything together. But his psychological ‘armour’ was now unravelling under the pressure.
“Did the oncologist explain how the treatment might be helpful for mother?” I asked incredulously. I had seen Joe’s mother 2 weeks earlier – she was wasted, breathless and frail. The disease had progressively affected the lungs, liver and bones, and it had not responded to multiple lines of oncologic therapy, including the so-called newer treatment modalities. And even if there was some treatment that could hold the condition stable for a while, it would be a matter of time, perhaps only months, that she may still succumb to disease relapse or a complication. And what of her quality of life? I remembered asking if she had thought about how her condition was worsening. She seemed unafraid to say that she would die. “I can finally rest,” she added. It had been a bruising journey for her, especially during the last year.
“He did say that the response will not appear for everyone… he showed me some figures and gave an example of how it benefited a patient… but doc, how can I say ‘no’ when there is treatment, right?” Joe beseeched.
I was by now trying to hide my heart-sink. I had communicated with the same oncologist 2 weeks earlier to let him know that Joe’s mother was quite cognisant about her dire situation and was also able to accept the inevitable deterioration – in case he felt compelled to treat because he was trying not to let his patient down, as some doctors may do. But that was another matter, as what’s at hand was Joe’s despair.
To a certain extent, Joe was right – it was very difficult for him to say ‘no’. Like many local patients, Joe’s mother had chosen to leave the medical decision-making to the doctor and her adult child, regardless of what she might have said about her own sentiments. I affirmed his difficult choice but reflected to him that it was also not wrong to say ‘no’ when the chance of treatment benefit was low, given mother’s very advanced condition. I reaffirmed that he had done what he could possibly do for mother and perhaps even too much for his own good. And I reminded him how important it was to take care of himself as he needed to continue steering the family through this situation. All these responses seemed appropriate but at the same time, they sounded entirely empty in the face of the real issue.
But Joe dried his tears after a short while and snapped his “armour” back on. By the end of the session, Joe had again resumed his role as the one “in-charge”.
As for Joe’s mother, she died in the hospital less than 2 weeks into the new treatment.
Many get hooked by the idea that treatment equates to hope. But when it comes to the last stage of life, whatever that is being dangled or grasped as “hope” is, in truth, transmuted fear. Such “empty hope” inevitably unravels as soon as it meets the reality, but it is the disguised fear that compels one to conjure the next “hope” and the next, and the next… until the fear is finally faced, or the patient dead. And it is not as innocuous as some “hope mongers” may put it – the price is in the emotional roller-coaster and emotional dissonance, the drawn-out suffering of disease and treatments, the financial burden, and of course, the irrecoverable time, opportunities and energy expended in the desperate attempts to scoop aqueous hopefulness with an aggrandized sieve.
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.
