My journey in Palliative Care
– Ms Nileema Sharad Shingade, New Delhi
For 12 years I worked in a cancer department and strived to provide the best possible nursing care for my patients who had undergone surgery, or for those who were getting chemotherapy or radiation as a part of their cancer treatment. During that time, I had heard of this word, ‘palliative care’ several times. Since I was never posted to the Palliative Care Unit (PCU), I never considered palliative care to be a specialty.
Every time a Senior Resident from the Department of Pain and Palliative Medicine came into my wards, I observed their interactions when they asked the families of my patients to think about the suffering of their loved one’s before taking a decision regarding whether to continue curative treatment or to choose focusing on the quality of life of their loved one’s. I always thought that ‘these people’ didn’t want to intubate at the last moment and were only looking for the excuses.
My first ‘real’ interaction with a palliative care team of nurses and doctors was in 2014.
At the very first encounter, I realized that palliative care was the ‘actual care’ which I was supposed to be providing for my patients. I also recognized that I was providing the same care but just that there was something missing in my care. Fortunately, shortly after, I came across an opportunity to do the IAPC’s Certificate Course in Essentials of Palliative Care (CCEPC), and also participate in a workshop organized by the End of Life Nursing Education Consortium (ELNEC). Exposure to these training programs completely changed my attitude towards patient care.
I still remember my first palliative patient, Roopa (name changed), who was admitted in the Medical oncology ward for chemotherapy AML induction. As a nurse, I was well aware of what induction encompassed and of the various side effects that were associated with it. My team and I did our best to care for our young Roopa. I realized that we needed to begin integrating palliative care right from the time she came into our ward irrespective of whether she was going through a curative treatment phase or not.
I began talking with Roopa and her family members. As time went by, we bonded. My new knowledge in palliative care had empowered me to discuss with Roopa and her family about every possible side effect that Roopa might have to encounter. We also began working towards managing them. After Roopa’s third cycle of chemotherapy she developed severe mucositis and it became impossible for her to even drink a sip of water. Roopa’s lips became very dry and pale. My team and I made B.G. paint, started triple gargle, application of ice cubes etc. To our surprise we noticed that despite our actions, Roopa and her family were still very distressed. We soon realized that every time Roopa looked in the mirror, she got sad and angry due to the application of the nasty looking mucain gel. You see, Roopa was someone who always loved to apply beautiful coloured lipstick.
Roopa’s mucositis however wasn’t getting controlled due to her ongoing treatment. By using ice cubes, providing meticulous oral care, with repeated application of the BG paint and the mucain gel, and educating Roopa and her family about the importance of these medications and the importance of frequent intake of water, Roopa’s mucositis was managed. She began to also better cope with the treatment thereafter.
During all this time, we also noticed that Roopa’s husband, a cheerful young man always cared for her and stood beside her. He was her greatest support and never left her alone. All of this meant, that most of his nights were becoming sleepless. So, my team and I decided to give him a break. We arranged for his break time and reassured him that we would take care of ‘his Roopa’ and all her needs during his absence. Finally convinced, he took a few hours off, which he needed most certainly.
Over time, Roopa expressed her wish to meet her college friends. You see, since she was in the medical oncology ward, there were restrictions regarding the number of visitors who were allowed into the ward. While her husband coordinated with her friends, we arranged for a small enclosure so that Roopa could meet and spend quality time with her friends. I still remember that when they were all together, they kept laughing and giggling for silly jokes. Watching their smiles and the warmth they shared, made several of our team remember our very own college days.
Till date, I am grateful and can still visualize the smile on Roopa’s face, due to a small effort from my team and I. I now realize the power of palliative care and the power of every effort, big or small.
About the Author:
Ms Nileema Sharad Shingade is a Senior Nursing Officer and a palliative care advocate at the Dr B R Ambedkar Institute of Rotary Cancer Hospital, AIIMS, New Delhi.