My First World Palliative Day Care Celebration
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A newcomer in the Department of Anaesthesia, Pain and Palliative care, Dr. BRA Institute Rotary Cancer Hospital, AIIMS, as a senior resident, preparations for the “World Palliative Day Care Celebration” left me with some curiosity. I would be attending it for the first time.
It was a routine busy day at work on 12th October when I managed to be just in time for the function. I had seen Dr. Sushma Bhatnagar working at organizing it, personally handling minute details and inviting patients and their relatives to join us. But how it would all go about was still a surprise in waiting.
I entered the seminar room where the patients and their families had all seated in a circle as one big group. Doctors from all departments – Medical, Surgical, Radiation Oncology, Radiologists – staff nurses, volunteers of non-profit organizations, and a few journalists were also there. The hall was jam-packed. Dr. Sushma Bhatnagar welcomed the gathering and spoke about the theme of 2013 – “Achieving universal coverage of palliative care: Dispelling the myths.” She emphasized that with this celebration, she wanted to share and spread the vision of increasing availability of hospice and palliative care. Also, as a team, it would increase our awareness regarding the needs of cancer patients and their loved ones. She encouraged patients and their relatives to share their stories, their journey, and their feedbacks – both good and bad. As people poured their hearts out, I could see many myths being dispelled and many bonds being created.
A middle-aged teacher, cancer colon survivor, shared that 6 months back, post chemotherapy, while she was walking in the corridor in severe pain, Dr. Bhatnagar noticed her and treated her pain promptly. “Palliative care should start on day one itself. I had a wrong belief that if I receive palliation, I would have to forego my treatment.” She spoke about the improvement in her quality of life.
Brother of a cancer pancreas patient said, “My brother expired three months back. He used to scold me in the last days for why I didn’t bring him to this place earlier. Palliation improved life of my brother and ours as a family.”
A breast cancer survivor in her 40s, quite a familiar face in the department, stated thus: “When I was referred to the palliative care OPD eight years back, I thought I am dying. But with your support, I am leading a pain-free and quite a normal life for the past eight years.”
An old man coming from a nearby village in Haryana became shy of the crowd. When comforted, he spoke so simply, “I wouldn’t eat and swallow due to pain; but now that I am pain free, I am happy I can eat.” His smile spread to all. Few more oral cancer patients immediately joined him and expressed the same feeling. Some had nasogastric tubes, which are inexpensive things; but the difference in their lives was so huge.
Then amongst the crowd, a young, educated girl in her 20s shared her story. Her husband was suffering with advanced oral cancer. Suddenly this confident girl broke down: “For three months, before coming here, my husband would wail in pain. Even my neighbours could not sleep. Ours was a love marriage. Even our families have left us alone. At this point, only you all supported us.” She was really battling a lot.
A software engineer shared that his young brother fought cancer for 10 years and was 25 at the time of his death. “He completed his dream of being Master of Computer Applications three months before dying. I thank you for your support.” In a moment, his pride became mine.
A medical representative expressed the difficulties when he would have to travel a long distance from Rajasthan to procure morphine for his young brother, who is now no more. He wanted to join us in making morphine easily accessible to all.
A lawyer stood up and said, “Eleven years back when morphine was prescribed to my wife, suffering with breast cancer, we thought she would get addicted. We believed that if started earlier, it may not be useful later when she would need it the most. I thank you for convincing us to start morphine. She is leading quite a pain-free life for the past eleven years.”
The last to speak was a young girl who talked about her lost mother, “When we came here, my mother was in severe pain. But in those last six months when she was pain free, we could fulfill her many wishes. As if we got to lead a second life with her. You escorted her to death peacefully like angels.”
Those pure mixed emotions of sorrow and joy, suffering and gratitude left me stunned. I fall short of words to express what I felt. All of us work hard to hold our dignity in life, but in death, sometimes, others may have to hold it onto for us. Elevating every life they touched upon – yes, I wanted to celebrate being part of that team.