Death: The Bad and The Ugly
Can we find some good too?
The staff nurse called me when the young boy, 9 years of age, started screaming with pain. He hasn’t passed a drop of urine for the last 5 hours. His bladder was filled to the brim and about to burst — or at least that’s what he felt. A large clot of blood collected in the catheter blocked the way out. Dislodging the clot by flushing the catheter stops his screaming as urine starts flowing towards the collecting bag. Quietly lying in his bed, he is relieved but visibly exhausted. His eyes are still gloomy, anticipating another bout of excruciating pain in a few hours. This has been the routine for more than a month now.
After undergoing a bone marrow transplant for a genetic blood disorder, he developed one of the common complications of the procedure — hemorrhagic cystitis — where blood leaks from the inner lining of the urinary bladder. For the majority, this condition settles within days with little intervention. Unfortunately, he fell in the minority. The sight of blood-stained sheets, a perpetually running saline drip irrigating his bladder, and his slender legs bare to the waist — all made for a disturbing first impression on the unaware. For us, it had become routine. Amid the hassle of frequent washings, changing sheets, and his screaming, his mother — in her late thirties — barely got to sleep for more than a couple of hours each night. I could understand her misery.
For 40-odd days every treatment we tried failed to stop bleeding from his bladder. I have been a part of the management team as a junior doctor. When after two months of pain and bleeding his condition started to improve and his mother could finally sleep for more than 2 hours, a severe bout of pneumonia took him within two days. I was heartbroken. I felt deeply for the boy and his mother. I had felt deeply for the 3-year-old too who slowly and painfully succumbed to death a month ago. The culprit, then, was acute leukemia — the worst form of blood cancer. In fact, I felt for all the little angels suffering from incurable ailments, living in limbo. I don’t know what is more painful to watch: When they smile in times of relative relief, unaware of their inevitable fate, or when they cry and groan with pain and fever.
I had an idea of the things to come when I signed up for training in blood cancer — Haem-Oncology as we call it — but I thought I was prepared. Three years of clinical practice had taught me how to deal with death and suffering. Death, whether the person dying is 90 years old or 9 months, is sobering and makes your heart heavy — for a while. The first time you witness one is the worst. It makes you question your abilities as a doctor. With time, as the tally piles up, emotions blunt. You learn not to dwell on them and move on. Moving on from some things is difficult than others, however. There is something heart-wrenching when a child dies of leukemia — a difficult thing to move on from. It gets me every time. The only thing probably worse than this is to watch the child suffer while fighting a hopeless battle. “With time, one comes to terms with it”, I am told. “Not until it scars your heart”, I have learned.
Death always seems unfair. Nobody — with the possible exception of a murderer — deserves to die. Childhood leukemia is the pinnacle of this injustice. These children suffer and die due to absolutely no fault of their own. There is no sugar to blame. They haven’t clogged their arteries by eating too much cholesterol. They haven’t smoked the living daylights out of their lungs. Perhaps, that’s why the suffering of a child is so impossibly painful for a parent to bear. Or perhaps it’s the subconscious sense of failure — an essentially false one— that makes the outcome unacceptable. “Am I a capable parent if I can’t help ease the suffering of my child. If I can’t save him?” Or maybe the realization of utter helplessness is what’s killing. Maybe it’s all of them. As a parent, I shudder at the thought of putting myself in their shoes. As a treating physician, however, I do share the frustration of helplessness. Cancer treatment has come a long way in the last 50 years when Sidney Farber first started using chemotherapy, but it is still a horrific disease, killing nearly a third of its victims within 5 years. As a physician, I have often found myself helpless in the face of the “Emperor of All Maladies”.
How then does one deal with an undefeatable enemy? For parents, I used to think they could be a little more accepting — until I became a father myself. Parents frequently say that the death of a child means the end of the world to them. When nothing encouraging to offer and a heavy and frustrated heart of my own, I used to avoid parents of a child with little hope of survival. Death is bad, ugly even. What good can my pep talk bring to the table, I used to think. That, however, changed with the death of a young girl whose ambitions of becoming a doctor were nipped in the bud by the same grim reaper — acute leukemia. She was the only child of a doctor couple. The experience was gutting for everyone. The parents were crestfallen. I wasn't sure if they would recover from this. If normalcy would ever return to their lives.
A year later, I saw a news report on the local TV channel. A father had started a welfare organization in the name of his daughter who had died due to cancer. The organization was helping needy patients in nearby hospitals. The grey in the man’s trimmed beard had doubled, but I could recognize him readily. Not only had they recovered from the tragedy but they had also turned it into a life-defining mission. We often underestimate our remarkable resilience. I have seen that those who lose their loved ones often find ways to return to their lives. Can we, as doctors, find ways to make the experience of loss just that bit easier, when we can not promise healing.
In oncology, the writing is often on the wall. With each line of chemotherapy that fails to work the life bar loses height and hope makes way for despair. This provides an opportunity to discuss death. While no amount of counseling can prepare a parent for their child’s inevitable demise, I have found that not giving false hopes can help. An honest and empathetic discussion can work and assuring the parents that it's not their fault and they have done everything they could is soothing. All these things can make the loss just a little more bearable. Or maybe that's what I like to think.
As for my own heavy heart, the next child that leaves the hospital on his feet with a smiling face balms a thousand wounds. If dying is inevitable, giving a patient a good death, instead of an ugly one, is what we can try to do.