“Maybe you didn’t realise it, but you donned the role of a caregiver even before you knew the world of palliative care,” Dr. MR Rajagopal broke it to me as gently as he could and waited patiently till my tears stopped. He gave me the space to grieve and assimilate the thoughts running amok in my mind.
A chance conversation with an ex-colleague led me to palliative care and Pallium India. It was a conversation that broke myths and misconceptions and made me realise that palliative care had been a part of my life without me knowing it.
Pallium India was started in 2003 and is led by Dr MR Rajagopal, often called the "Father of Palliative Care in India." His work in this field has been recognized with the prestigious Padma Shri.
After being associated with them for nearly nine months, I landed in Trivandrum on December 14, in the early morning hours, and I was sure of one thing: I didn’t know when I wanted to get back home. It was the first time I followed my heart, not an itinerary that is generally a core part of my travels.
For the uninitiated, palliative care is specialised medical care that focuses on improving the quality of life of people with life-threatening or debilitating illnesses. It helps people lead as normal a life as possible under the circumstances. Palliative care can be provided from the start of the diagnosis to the outcome of the disease, and in the event of death, assistance is provided in bereavement care for the family.
The main goal of palliative care is to provide relief from the symptoms, like pain, nausea, breathlessness, etc., and stress that are often associated with these conditions. It is not just for people at the end of their life but can be provided at any stage of the illness, alongside curative treatment.
Pallium India works towards giving people the dignity that they deserve, from providing rehabilitation to offering free food kits, sponsoring education for children of the family who have been affected, and more.
For my first home visit, I requested to see “patients in less pain” because I wasn’t sure how I could handle it. Dr Rajagopal smiled and agreed to it. We set off in the morning. We reached the destination, and we got out, making our way through tiny paths that led to thatched huts. I wondered how life was in the middle of nowhere.
My first visit was to a bedridden patient who had a stroke, and the only caregiver was her husband. I fidgeted and was uncomfortable, waiting for the nurse, Keerthi, to check the vitals, administer the medicines for the month, and move on to the next patient. I mentally calculated it would take five to ten minutes.
Instead, Keerthi pulled a chair, asking me to sit, while she sat next to the patient on the bed, holding her hand. What followed was 45 minutes of conversations between Keerthi and the family, her gently admonishing the patient for not cutting her nails, and magically, a nail cutter emerged from her bag, and she clipped the nails. I never thought this level of compassion would exist in anyone.
The next few houses that I visited followed the same pattern. I realised how deep the bond was between the beneficiaries and the palliative care team. It was a visit that each of them looked forward to every week.
The simple truth is that palliative care is about seeing the person not as a diseased body to be treated but as a human with emotions and feelings. Isn't that what being human is all about?
There might be an end to cure, but there is no end to care.
From one home visit, I managed to do four, travelling to the interiors of villages to visiting localities in abject poverty.
Caregiving is not an easy task. It comes with judgments, periods of fatigue, and helplessness at times.
Little did I know that I had donned the role of a caregiver twenty years ago when my father suffered a stroke, and his memory regressed to many years ago - sometime around the Indo-China war when he had served as an army doctor.
It took a couple of weeks for Ma and me to comprehend why he wanted the lights switched off at a particular time. We realised it was the days when the blackout would happen so that the enemies wouldn’t know where to strike.
From phases of not recognising his children to wondering where he was, it was a long journey for us.
Palliative care would be incomplete without the volunteers who dedicate their time selflessly to identify patients needing care. The pressing need for home-based care, particularly in impoverished communities, makes developing a community-based palliative care movement significant.
I must emphasise at this point that palliative care is not only for financially challenged individuals but for anyone with an illness that keeps them from living an everyday life. It is often the affluent who are denied this care.
These volunteers spent time identifying people who needed assistance and taking the team to meet the people. I can’t help but feel profound gratitude for these selfless, compassionate individuals who have dedicated themselves to easing the journey of those facing life's most challenging chapters. Not only did it remind me how empathy and support can change lives and offer relief to those in challenging situations, but it also made me realise how fragile life is.
How dependent we are - on the community, the people who breathe a lease of life in the world of palliative care, to let others live a life of dignity.
As Kerala ushers in Palliative Care Day on Jan 15, 2024, with a focus on “Compassionate Communities - Together for Palliative Care,” it becomes even more important to acknowledge the significant role communities play in bridging the gap between those who need help and connecting them to those who can provide it for them.
My greatest takeaway in these nearly three weeks I spent in Thiruvananthapuram with the organisation is that in palliative care, we don't add days to life, but life to days.
(When not working with words, Prathibha creates magic with social media. With bylines in LiveMint, Quint, QuintFit, Arre, and more, she writes on topics ranging from mental health to self-care and more. She’s on Twitter as @myepica.)