Dr Arun Chandrasekharan
"It was the best of times; it was the worst of times….” thus, commences Charles Dickens masterpiece - A Tale of Two Cities, foretelling the oscillating drama about to unfold herewith. I was exposed to a similar seesaw of emotions recently, practicing as a medical oncologist in India.
Patient A was a 22-year-old boy with metastatic osteosarcoma, progressed on multiple lines of chemotherapy and now admitted with acute shortness of breath and pain. He was in considerable distress and his relatives milled around him, distraught. The most disconcerting part of this whole situation was that the patient was not aware that he had terminal cancer, with hardly any time left. Yes, he knew he had a malignancy, but he believed things would get better with time and was more worried about his cough annoying him 10 years later. Every inpatient visit by me to his room was preceded by his father cornering me outside his door begging me not to divulge his grave prognosis. Even the boy's mother was kept in the dark about the gravity of the situation. My stand was very clear, in that, I would not lie to the patient if he inquired about his prognosis. The patient would badger me with questions like why his pain was taking time to go away and why he had his bouts of coughing. I would patiently explain that his tumor was causing these problems and we were trying our best to correct them. He would be satisfied with my answers and then move on to our favorite topic which was English football. Being a devoted fan of the Liverpool football club, he would mock me regarding my support of a rival team. He was looking forward to a time 6 months later, when his team would most likely lift the Premier League title, a feat that his highly decorated club was yet to achieve. I didn't have the heart to tell him that he probably would not make it till then. His final days were turbulent, with the family insisting that he be kept in the hospital with appropriate escalation in care. He finally succumbed to his illness when it metastasized to his brain. At the time of his passing, the family and their numerous relatives slipped into extreme hysteria and agitation and had to be pacified for almost an hour before they could be calmed down.
At around the same time, Patient B was admitted with high-grade fever and debilitating fatigue. She was 21, diagnosed with acute myeloid leukemia that had progressed soon after induction therapy, failed on decitabine, and now on palliative support only. Her father was strong willed and stoic, appreciating our largely futile attempts to make her comfortable. He knew the day was not far away when his child would lose her battle against the cancer, but he had steeled himself remarkably. The patient also knew of her dismal prognosis and did not let it dictate her life. She always had her makeup perfectly applied; the kajal highlighting her eyes and nails manicured to perfection. You could sense she was not willing to succumb to the helplessness of her situation and fought to maintain normalcy through it all. But the powerful onward march of her disease overtook her resilience and we all knew her time was close. We had started her on antibiotics and other supportive measures, when her father informed me it was her brother's birthday the next day. I realized this would be the last birthday she would be spending with him, and a precious day with her brother and family was worth 50 such days convalescing in the hospital attached to a bunch of intravenous lines. We managed to shift her home in an ambulance the very same day, where she spent a treasured memorable day with her family and friends. A week later, she passed away peacefully, surrounded by her loved ones. Her father called me to let me know of her passing and he thanked me for that one special day she got to spend with her brother.
Looking back at these two patients, I could not help but notice the large gulf in their family's acceptance of the end-stage disease. The former was a tumultuous and frantic response, including the concealment of the graveness of the condition from the patient. Any last wish he might have had went unfulfilled, and he never had the chance to say goodbye. On the other hand, regarding the latter patient, the open acceptance of the terminal nature of the disease by the family and the patient brought about a sense of calmness and tranquility in the final moments, and she finally died on her terms.
The quandary we face as doctors in India is that the treatment decisions are largely taken by the relatives of the patient. Where does one draw the line and blatantly ignore the family's wishes and inform the patient regarding his or her illness? This moral minefield is something that we as caregivers experience in cancer care frequently. It is quite common among the older patients whose relatives meet us first in our outpatient departments and entreat us not to reveal the diagnosis to the patient as it would devastate them and thus lead to compromised delivery of care. I navigate these situations using the 'seek and you will find' principle. If the patient asks me directly about his/her diagnosis and prognosis, I reveal everything without alarming them too much. If not, and the patient chooses not to ask about the disease, I use terms such as 'growth' and 'injections', side-stepping the more distressing words such as 'cancer' and 'chemotherapy'. The system is not perfect, but it helps me get by. Every patient and their relatives pose unique challenges that only experience and tactfulness can help tackle, and one solution may not fit all. Patient A could have been told of his condition much earlier, but his family, who knew him best, decided to spare him from the painful truth. I will never know if that was the right decision, but come next year, if Liverpool Club is crowned the champion, I know of one die-hard fan who will be up in heaven singing the iconic anthem 'You will never walk alone'.