“In the end it's not the years in your life that count. It's the life in your years.” – Abraham Lincoln
Mr. Lalit Kumar (name changed) was 85 years old when he started complaining about difficulty in swallowing and a constant feeling that there was something that felt like a lump stuck in his throat. Other than dysphagia, he had no discomfort. The family physician who had been taking care of Mr. Lalit for many years thought it was dyspepsia, and therefore prescribed some antacids. But 15 days later, when Mr. Lalit showed no improvement, the physician advised further investigations. This was the eventful year of 2020 when the coronavirus disease 2019 (COVID-19) pandemic was at its peak. Due to the COVID-19 restrictions, an endoscopy of the throat could not be performed. An ultrasound was done, which revealed a suspicious mass at the base of the pharynx and a biopsy was taken. The histopathology report revealed that Mr. Lalit had hypopharyngeal squamous cell cancer. He had been a smoker who led a fairly active life. He had imagined dying peacefully, and the diagnosis was a shock to him and his family members. Though Mr. Lalit did not understand too much about the disease, he was certain about one thing – he did not want to receive chemotherapy.
Mr. Lalit was referred to a radiation oncologist and he underwent 33 sessions of radiation. The major side-effects that he experienced were burning and peeling of the skin of the throat area, loss of taste, and difficulty swallowing. With good management of the side-effects, after completion of the radiation, the positron emission tomography (PET) scan revealed that he was cancer free. Mr. Lalit and his family were overjoyed and thought the worst was behind them.
Sometimes though, fate has different plans than what we think. Six months later, when the second wave of COVID-19 was at its peak, Mr. Lalit contracted the virus. Though he did not have any significant COVID-19 symptoms, a chest X-ray of the lungs after his COVID-19 infection revealed a patch. He went back to his treating oncologist who advised a repeat PET scan. This showed that the cancer had metastasized to the lungs. This time, the treatment option suggested was chemotherapy. Mr. Lalit was a man who stood by his beliefs. He refused to undergo chemotherapy yet again. The family was in a dilemma. Not choosing treatment would mean the cancer would further spread.
And everyone in the family, including Mr. Lalit, knew what that meant. At this point, one of the family members who was a dear friend contacted me. We discussed palliative care for Mr. Lalit. He told me, “To see a parent with a terminal illness slowly fading away is traumatic for the entire family, but we want to respect his wishes.” We then spoke about choosing quality of life over quantity of life. We spoke about how the medical treatments to cure or reverse these health conditions could affect older bodies more harshly and would be more likely to cause significant side-effects. Therefore, the efforts should be directed toward improving his quality of life, hence the need for palliative care. One of the highlights of my consultation with them was the involvement of the entire family, which included his spouse, their children, and also their granddaughter. Shared decision-making can help a family deal with a difficult situation like this better. As the disease burden increased, Mr. Lalit started deteriorating. His food intake reduced as a result of which he lost significant weight. My friend spoke to me about how one of the physicians suggested a percutaneous endoscopic gastrostomy tube (PEG tube). My discussion with the family then was about how even the insertion of the PEG tube would cause him more trauma. Someone who has led a good life up to the present time should be allowed to die with dignity. Yet again, Mr. Lalit and his family chose quality of life over quantity of life. With cachexia setting in, Mr. Lalit was slipping away. My friend told me, “It was really amazing that dad who was not highly educated and did not really understand the disease was extremely stoic and accepting. He spent the last two years of his life happily playing carrom with his son, brother, and granddaughter regularly and also with everyone else who came to see him. Such was his spirit, and it gave him so much joy. Having said that, it was still extremely hard to not 'do' anything or not seek further medical help.” The only intervention chosen was pain relief. The family continued talking to me and to the palliative care physician. It was on October 3, 2021 that Mr. Lalit made the final journey from this realm to the beyond.
My friend thanked me saying, “We, as a family, were very fortunate to be guided by the right people and kept faith in the decision we had taken to keep our beloved father pain free and maintain his dignity till the last day he was alive. He hated needles and did not want to be hospitalized. Although it was very tough for us, it was what he wanted. It was his choice, his life and we dignified it by respecting his wishes.”
Mr. Lalit and his family have set an example for many. Death is an inevitability which no one can escape. Mr. Lalit chose to die with dignity, which each individual deserves. He chose to spend the last leg of his life's journey with grace, surrounded by his family, doing the things that he loved. He chose to live while dying.
About the patient, Mr. Lalit Kumar (as related by one of the family members)
Mr. Lalit was universally called “Pa.” He was a manufacturer by profession, but an artist at heart. He was a simple man with really simple needs. He was always ready to help anyone in need. Nobody ever left his door empty handed. As his granddaughters proudly said, “Our 'Pa' never invested in stocks and shares, he invested in people.”
About the author
Vandana Mahajan is a palliative care counselor. She is associated with the Mumbai-based non-governmental organization, Cope with Cancer-Madat Trust. She works as a volunteer counselor in the thoracic oncology disease management group at the Tata Memorial Hospital and also provides cancer counseling across India via online platforms. She is a cancer survivor too!
Email: Vandanamahajan. [email protected]
Financial support and sponsorship
Conflicts of interest