I remember the fateful day we learned what was wrong with my father. It was Onam festival; we all had gathered together at my parent’s house for a hearty traditional feast.
My father was feeling very weak that day but enjoyed our company. The next morning he could not speak and his right side was shivering, so we took him to a neurologist in Trivandrum Medical College Hospital.
He referred us to Sri Chitra Medical Centre, Trivandrum, for further investigation. After taking an MRI (magnetic resonance imaging) and a CT (computed tomography) scan, the doctors confirmed that he had a third-stage brain tumour. We were all astonished because he had never complained of any headache or showed any evident symptoms.
The doctors said his speech would be affected and gradually his right side would be paralysed. They said that surgery was the only remedy. For them he was just another patient and a new ‘case’, but for me he was my dearest Daddy. I did not want him to endure any pain at this age.
The doctors could not guarantee a recovery after the operation. One of the doctors was very humane and considerate. He asked my opinion and agreed that a man who has lived a contented life for so long should be allowed to die peacefully. I was lucky to have found a doctor who held these views, rather than pressuring us to go ahead with what might have been a painful surgery and difficult recovery.
But really, I might never have made this decision if it were not for Pallium India, a nongovernmental organisation (NGO) involved in palliative care, and the training I received there as a volunteer.
I was always interested in social work but kept on postponing due to my family commitments. I met Dr M.R. Rajagopal, Chairman of Pallium India, in 2008, at a cultural event organised by Pallium India. Before the program started, there was an introduction about palliative care by Dr Rajagopal. I was very much impressed by it and decided to join the organisation.
In order to be a volunteer for Pallium India, I had to attend their training. Little did I know that this training would turn out to be what I needed to help my father die at home peacefully and without pain or suffering. The training gave a very good picture of the organisation and palliative care as a whole, as well as an insight into our life.
It gave me knowledge about serious diseases, patient care, and how to manage suffering. It opened my eyes to a new world of suffering and compassion. I became a volunteer and made donations for special occasions. The direct exposure to suffering equipped me to face the realities of life. It gave me the strength to stand up to difficult situations.
Because of this, when I got the news of my dad’s illness, I had an idea about the procedures of an operation and the aftereffects. The workshop on: ‘Dying with dignity’ conducted by Pallium India also helped me to take a decision to give a peaceful farewell to my father.
In that workshop, eminent personalities and doctors discussed old age, geriatric treatments, and the futility of prolonging their lives through modern techniques and ventilators. They emphasised the need for giving extra care and happiness to the old patients at home rather than admitting them in some private hospitals and leaving them to the mercy of the hospital staff.
I knew this was in line with what my father believed. When I told him about his illness, he asked me to ignore it. He naturally wished to be at home with his family till the end because he always liked to use home remedies and was reluctant to go to hospital for general ailments.
But in spite of all these reasons, it was so difficult to take this decision because my family members were not ready to face reality. They could not take the news that nothing better can be done. Finally everybody agreed only because the nephrologists suggested that a surgery was highly risky.
Thus, with the help of some medicines, he lived with us happily for about two more months. He enjoyed the care given to him, and we also had the satisfaction of serving him when it was needed. Even though it was for a short spell, he enjoyed living with his grandchildren. Slowly and calmly he went into oblivion.
Didn’t he deserve such a farewell at the age of 83? Should we have instead tried to prolong his life by painful and artificial interventions? These questions can be answered only when we are aware of the situations and learn to empathise with people around us. Mostly people are sympathetic towards their fellow beings, but to empathise with their situation, one has to inculcate it. This is the role of such organisations.
You can learn more about the World Hospice and Palliative Care Day campaign online, including key messages and downloadable resources.
This article was originally published as part of the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online.