by Taido
I was reviewing Deb’s clinical charts at the nurse’s station when a burley figure suddenly appeared before me.
“I think you will have to pump up the morphine so that she will not be aware of the suffering!” he growled, with a leaden sigh.
It was Deb’s surgeon. I was taken aback momentarily, not so much because of the uncharacteristic proposition, but by the sheer anguish that accompanied it – it sounded like a personal plea; one that came from a softer, vulnerable part of him. But this may not be so surprising, as firstly, it would be difficult for anyone to witness Deb, a young 29-year-old lady, dying of advanced cancer. Secondly, when Deb presented with a massive abdominal cancer, this surgeon was among the team of doctors who removed the tumor and restored her chance for a new lease of life. And thirdly, he had been her doctor for five years now, through the highs and lows of her illness journey, out of which a caring relationship had clearly grown.
But while I can empathize with the surgeon’s grief, I was reluctant to accede to his suggestion. In part, end-of-life care must never be reduced simply to morphine and sedation. And more importantly, I was not sure at that time if this was what would serve Deb or her family: in very tender end-of-life situations, where care workers are ensnared by helplessness and anguish, there may be an urge to grasp for that sliver of reason to justify doing something just to “fix” the situation.
“Yes, it’s really tough… I was just about to see her… Will see what helps.” I decided to stall for time with a feeble non-committal reply.
In many ways, this incident paralleled what’s also going on in Deb’s family. The cancer treatment had initially provided a common focus and direction for Deb and her family. As it became clear that further cancer treatments would no longer be helpful, opinions diverged with regards to “the right thing to do”. Father wanted to continue feeding and other interventions on account of “Deb’s fighting spirit”. Mother, on the other hand, felt all futile interventions should stop to avoid “dragging” out the dying. Deb’s sisters seemed to agree with mother though they were less sure if that was the time to stop all treatment; and they also alleged that Deb was forcing herself to feed for father’s sake – but even though they seemed to have the most intimate conversations with Deb, they felt that their opinions were overlooked or overruled in the family hierarchy. The simplest solution would be to ask Deb what she wanted and what would be right for her, but like so many other families, that open conversation had not taken place BEFORE she became drowsy, weak and in severe pain.
In such situations, it may be seductively convenient to assert the “medical solution” as a moral imperative – the focus shifts towards solving the medical condition in dying, sometimes with copious analgesia and sedation, while the “unsolvable” personal and social issues may be justifiably exiled as secondary concerns.
But to reduce dying to mere medical events never does justice to the dying person or the dying process. Dying is a multidimensional and collective experience; it is an experience that is both contributed by and lived by the dying person and all those in her proximity, and sometimes even far beyond (Recall how communities mourn the death of public figures, or even unrelated strangers killed in natural disasters and shooting incidents). We know how the pain of the dying person can also bring pain to her caregivers. Acts of kindness and care from those around bring warmth and love to the collective experience; aloof care givers and even a callous bystander bring coldness and separation to ALL. Similarly, trying to reactively “fix” or “block” the experience, such as by numbing out, distracting, or cheering people with positivity, might only be experienced as brokenness and neediness, even if it may assuage the “fixer’s” helplessness.
However, to turn earnestly towards the whole experience regardless of how it may unfold, can be incredibly daunting. To begin, it requires a willingness to hold each tender moment with equanimity rather than with judgement or despair. And it is by holding without any meddling or fixing, that we may impart an unconditional acceptance that can slice open a much-needed space to process and make sense of the experience with the compassionate heart, instead of the judgmental mind.
But such holding needs to be grounded on a faith that the dying process is not random, or useless, or meaningless. This can be particularly challenging for “pragmatic” individuals, which include many medical professionals, and even some hospice workers, who are trained to be guided only by the dichotomy of the medical utility and futility.
For Deb, it was fortunate that her pain could be adequately controlled without undue sedation. With that taken care of, her dying became the natural scaffolding to hold everyone’s experiences. In between the inevitable lethargy and weakness of a body that was gradually shutting down, she had periods of lucidity during which there were precious tender conversations with her family. She confided with her sisters that maintaining that status quo was not her idea of a meaningful life, and she calmly declared that she was ready and unafraid to die. A period of relative “stability” in her condition provided the emotional and psychological lull for the family to garner enough composure for a crucial family conference – the family had the chance to speak and hear from each other that while they had all tried to “help” Deb in different ways, they all did them out of love. Eventually, they learnt to recognize that amidst the unrelenting bodily decline in dying, there was still a place for the spirit, for loving and caring, and that dying did not preclude ease and wellbeing.
It is never easy to turn towards dying. And even when we must, there is a tendency to demand “my way”, rather than to take in the whole experience of dying. But if we are willing to stay open to all that the natural dying process has to offer, especially when untampered by unnecessary interventions to hasten or prolong it, then it may be possible to discover that it is also within the process of dying, that we may find its own healing.
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