Q: What motivated you to get involved in palliative care?
I was born and raised in a humble household consisting of my parents and three siblings in Hmarkhawlien village of Cachar district, Assam. Despite hailing from a modest background, my mother encouraged me to study and supported me till my 12th standard. Thereafter, in an effort to support my family and the education of my siblings, I pushed myself to work, while hoping to continue studying later. Two years later, I was selected to be trained as a nurse; and I joined the program without any idea of what nursing meant!!! Within a couple of months, I felt grateful for having been chosen into this profession. I completed my training as an ANM in2009. Over time, I further upgraded my nursing qualifications.
Serendipitously, I interviewed and also got selected at the Cachar Cancer Hospital and Research Centre (CCHRC) in June 2010; the place I now call home. Although it is less than 40 kms from my home, I had not heard about the hospital, let alone the thought of working here.
On my first day itself, I was posted into the “Palliative Care ward”. I had no clue what “Palliative” meant! My initial impression of the ward was not something pleasant. There was sickness and suffering beyond my imagination. While I cringed at such a sight, I also felt privileged to be in a position to help and heal. Within the first few days, I knew I was in a place where my work and presence would be meaningful.
I learnt the nuances of palliative care on the job. I completed a six week course on PC that was organised by the hospital and subsequently rose to become the head the nursing team in the Department of Palliative Care at my center.
Q: Please articulate any unforgettable incident or patient interaction that you may have experienced in your journey of providing Palliative care.
A 70-year-old man with metastatic lung cancer frequently visited our pain clinic, along with his wife. Despite his troubles and sufferings, he always projected a very pleasant demeanour and would stride in with confidence; each time. Something shook me one day, when I saw him enter our OPD in a wheelchair while his wife looked at me helplessly. For the first time, I trembled while administering his medications. The familiarity had weakened me, I thought.
Within a few minutes post administering medicines and making him comfortable, he was breathing better. He then straightened up in his wheelchair and he smiled!! I will never forget that smile.
On another occasion, I set out with our driver to a remote village in our ambulance. The outskirts of Silchar town gradually merged into the quiet of the adjacent villages. Broad tarred roads meandered into long narrow unmotorable roads. We walked several kilometers and crossed two bamboo bridges to reach our patient’s house. His kuccha house with a roof made of twigs, and walls smeared with cow-dung housed 15 members. Everyone assembled as we entered the house. Our patient lay on banana leaves that served as a mat on the floor, wincing in pain. He was cachexic and had grade 3 bed sores. When asked what troubled him the most, he said it was the pain in his abdomen. On examination I realised that he had a distended urinary bladder. I explained to the family members, that catheterizing him would immediately relieve his pain. Yet they were all reluctant. Cancer, along with its treatment and sequelae are all still a stigma in several parts of our country. Carrying a tube around would be considered almost unacceptable in their village. I understood that. It took me several minutes to counsel them and get their consent. On insertion of the catheter, we nearly drained one litre of urine. The patient sighed with relief immediately. All the years of learning, training, hard work and effort had created this wonderful moment in my career, where I was able to provide instant relief to a dying patient, miles away from a hospital, amidst the comfort of his home and in the company of his family members. That is how gratification feels, I thought. And I want every junior colleague of mine to experience that.
This, among many other incidents, reinforced the purpose of my work and gave meaning to what I do, and to my life.
Q: What are your thoughts regarding the level of awareness nurses have, regarding Palliative care as a concept and on the availability of the various PC training programs that exist specifically for nurses? How do you recommend we train more nurses in Palliative care?
Soon after I joined CCHRC I attended a six week intensive training program in PC. Besides helping me understand the basic concepts of PC, it, more importantly, helped allay my fears and apprehensions. For the initial couple of days, I only observed; I was afraid to touch or interact with patients. Gradually I began to internalize; the fungating wounds, foul odours, stomas, pain and breathing issues.
In 2012, I had the opportunity to attend a training program at Pallium India. It reinforced in me the value of team work, home care, communication skills, planning and end-of-life care. This training was of immense value when it helped me to plan and integrate our home care services which started in our centre in 2013. Sparse economy of the population of Barak valley, the extremely difficult terrain, the long unmotorable roads and the uncertainty of being able to sustain the program, failed to mitigate our enthusiasm. Of course, there were days that were filled with frustration, failure and disappointments. It is at these points, when team spirit saw us through. We now, run a home care department that functions like a well-oiled machine. The teething troubles threatened to shake us, but taught us well before making us only stronger. We now firmly believe that PC is incomplete without home visits and we are now proud to say that our home care department is one of our greatest strengths.
After that, several of my nursing colleagues trained at Pallium India, Thiruvananthapuram, and in MNJ, Hyderabad. We also benefitted greatly through project ‘Hamrahi’, which brought PC physicians, nurses, pharmacists and others to our hospital. Dr. David Brumley, Ms. Joan Ryan and Ms. Penelope Tuffin have made several visits to our hospital and have immensely helped our learning.
Dr. M. R. Rajagopalan, Dr. Nandini Vallath, Dr. Charu Singh and Ms. Gilly Burn have also visited our centre. Ms. Gilly Burn noticed that our patients’ names were not displayed on the bedside and that several times doctors and nurses failed to address patients’ by their names. She supported name boards and sitting stools for every bed in the palliative ward. We have now extended this practice to every bed in the hospital including our COVID ward.
Training is of paramount importance to providing good nursing in PC. It is extremely hard, sometimes devastating for a nurse, when they see their first patient die; understandably so. It is agonizing to nurse and dress wounds, that fungate, gape and threaten to bleed while simply taking the bandages off. How does one learn to nurse, feed, dress, clean a patient who is ailing, wailing, all while preserving the patient’s dignity and catering to the patient’s family’s needs (emotional, social, financial and much more)? One begins to develop a bond with patients one cares for, especially the ones in PC, knowingly but most often, unknowingly; and it is always difficult to let go, ALWAYS!
How does one learn to efficiently nurse palliative patients, and yet not burn out? How is it expected of nurses to know this after ‘nursing training’? PC is a completely different ball game. It requires dedicated learning.
At the outset, an introduction to PC must be included in all certified courses of nursing. As of today, most are clueless about the existence of this specialty. It must be emphasized that Palliative care does not simply limit itself to cancer patients or end-of-life care. The “concept” of palliative care is what needs to be taught. It is very much needed in the care of neurology patients, geriatric patients, even paediatric patients.
There are several training programs being offered in India. Our juniors and colleagues must be encouraged to attend this. These could be included in their academic schedules as an incentive.
Q: What messages would you like to share with your nursing colleagues who are either already working in PC or who are yet to be involved in delivering PC?
I cannot emphasize enough about the need for PC in every hospital, institutional or others. It must not be looked upon as a department that solely caters to end-of-life issues. It must be inculcated in everyday practice for all nurses, doctors and supporting staff members with the understanding that PC not only improves the quality of death, but has the enormous potential to also improve the quality of life as well. Without team effort, PC is futile. Every individual in the team must be driven and passionate towards providing PC and contribute in every way possible. It is one department where hierarchy between colleagues gets beautifully blurred, team spirits among colleagues is accentuated to provide holistic care to the patient.
So yes, I firmly believe in Mother Teresa’s words that “Let no one ever come to you without leaving better and happier!”
About the Author: Ms. Sarita Chhetri is a wonderful, selfless and hardworking nurse and the Nursing Supervisor at Cachar Cancer Hospital, Silchar, Assam.