“Listen with ears of tolerance,
see through the eyes of compassion,
speak with the language of love.”
This message from Rumi resonates with every volunteer at the Pain and Palliative Care Society (PPCS), Thrissur. Through this article, we, Akhil and Padmaja, palliative care volunteers at PPCS, Thrissur, wish to share with you some of the key learnings and experiences we acquired during our journey in palliative care.
Key learning / Experience #1: Listen actively while also being open and non-judgmental
We visited Kumar (name changed) during one of our routine volunteer led home visits, aiming to assess and provide psycho social support to patients and their families. While we were happy to note that Kumar was well cared for, we also noticed that Kumar seemed very unhappy and kept blaming his caregivers and God. It seemed like Kumar had lost faith in everything around him. We assumed that his mental and spiritual distress was a result of his physical condition.
Prior to our training in palliative care, we would have advised or corrected Kumar. Post training and our stint with palliative care, we realize that our initial reaction would have been disastrous if implemented. We now understand that Kumar’s feelings and his thought processes are important and that we had to listen actively, without being coloured by any judgements. We also realized that Kumar didn’t want solutions but only wanted someone to listen to him without judging him. We felt honoured on learning that Kumar trusted us, and looked at us as someone who would listen to him and try to understand him.
Palliative care taught us to give importance to the thoughts, feelings, opinions, and beliefs of Kumar or any other person who was speaking to us. Recognizing and respecting the beliefs and practices of others’ has also empowered us to better understand the people around us and become more tolerant towards the opinions and behaviours’ of others, despite having a difference in opinion.
We also realized that in situations such as these, we (the palliative care team) inevitably become the closest to a person as we respect and listen to them actively, openly and without being judgmental. It is therefore important for us volunteers, to take these efforts to nurture the growth of a fine companionship between the patient and us.
A patient calls out to the student volunteers
requesting them to visit her again
Key learning / Experience #2: Be compassionate, accepting, reslient and most importantly, grateful!
We visited Arjun (name changed), a young adult who was completely bedridden and non-responsive due to his brain injury from a road accident. We learnt that in the period just after the accident, Arjun’s parents, his elder brother and his cousins and neighbours took good care of him by equally sharing the responsibility to care for him. As years passed by, it was unfortunate that there was no improvement in Arjun’s condition and gradually everyone except his parents began to move on with their own lives.
Arjun’s parents had also aged. Our unit rendered regular catheter care, ryles tube care and offered social support. The students’ volunteer team was primarily assigned to offer respite care. We took turns and began visiting them over weekends. The boys would help bathe, shave and clean Arjun while the girls would help clean up Arjun’s room. Occasionally, a volunteer would also share meals with Arjun’s parents. We also collected funds to provide nutritious food and ration for Arjun and his family. Most importantly, we began spending quality time with Arjun’s parents and Arjun who were otherwise socially isolated. This routine continued for three years until Arjun passed away one day.
Arjun’s elder brother then came back to live with his parents. All this while, we noticed that Arjun’s parents never once complained about their elder son (Arjun’s elder brother), their neighbours or their relatives. While Arjun’s father would say that “They have all had done their part”, Arjun’s mother would say that she was so happy that her elder son had moved on and had created a family of his own.
This was such an eye opener for all of us.
Working with Arjun’s family thought us to be compassionate but most importantly to be accepting of life’s challenges. We learnt that adopting this attitude helped us to become grateful for what we have rather than cribbing about what we don’t have. These qualities when imbibed, we realized will make us resilient.
Key learning / Experience #3: Have patience and provide unconditional support
We met Ganga (name changed), a cancer survivor who was registered with us, during one of our routine visits. Ganga had no children and was not on good terms with either her husband or her parents’-in-law. Ganga’s surgery had left her wheelchair bound. Even though Ganga had not explicitly denied permission for our visit, she wasn’t very friendly with us during our initial home visits. Ganga had told us that she was unhappy with herself. Though our visits were short, we always kept our promise and visited her as per schedule.
We later learnt that Ganga had told a few of our senior team members that our (children) visits had actually instilled some hope in her and that it also gave her something to look forward to. Over time, slowly but definitely, the ice melted and she warmed up to us and became friends with a few of our volunteers. Interestingly, her Facebook status now has pictures of us, together!
This experience thought us to be patient, kind and give unconditionally as this is what most of our patients crave for.
These three experiences taught us that everyone has 24 hours, which they spend being intolerant as they are individualistically running after their needs, most often forgetting to express kindness towards one another. According to Plato, “kindness is more than deeds”; According to us, it can be manifested by way of an attitude, an expression, a look, or even through a touch. Kindness is anything that lifts another person. We have learnt that several times, just sitting beside someone for some time and extending a gentle touch, would mean the world to them.
The world commemorates World Compassionate Day (1st November), World Kindness Day (13th November) and the International Day for Tolerance (16th November). For volunteers like us, every day is a day of to exude compassion, kindness and tolerance, since once a volunteer, always a volunteer!
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