Hamsa lay on the bed, his arm propping up his head. His tall frame nearly filled the entire bed. His wife Jasmine stood behind him, her hand resting on his shoulder. Both smiled and nodded as they listened to the young visitors in their hospital room.
Every few months, Hamsa and Jasmine leave their own home and take up residence in this tranquil corner of the Medical Centre campus in Kozhikode, Kerala. After more than a decade of visits, this room at the Institute of Palliative Medicine is like a second home and the doctors, nurses and staff like family members. Volunteers – high school and college-age men and women – from the area’s well-established palliative care network make frequent visits to chat with the couple.
Fifteen years ago, life was very different for Hamsa and Jasmine. They were newly married. Befitting his strength and stature, Hamsa was a karate instructor. But an accidental fall from a bridge left him paraplegic. For years, they visited hospitals and specialists searching for a cure, until realising that his paralysis was permanent. The physical and psychosocial care at the palliative care institute helped them to accept his condition and create a new yet still meaningful life.
For the incurably and terminally ill and those who are dying, palliative care is a holistic attempt not only to relieve physical pain but to address the patient’s emotional and spiritual well-being.
But the effects of palliative care don’t only benefit the patient.
It is also a way for volunteers and society at large to see death and dying as part of the natural process of living, according to Dr. Suresh Kumar, the founder and technical director of the institute. And this is a transformative process for anyone who spends time with a person who may have months, weeks or even just days left.
“Once you start actually talking to the patient, start listening to the patient, you also tend to change. It’s an opportunity to experience life from a different point of view. If you keep your ears and eyes open, this has immense potential to change you. I’ve seen a transformation happening in many people when they go and sit with the patient. They come back and say that they see a different world now,” explained Dr. Kumar.
The need for palliative care in India is tremendous, by one estimate 6 million people every year. Though palliative care has been present in India for about two decades, a worldwide ranking in 2015 by The Economist placed India at 67 out of 80 countries.
Kerala is the only state to integrate a palliative care policy into its healthcare system. Established in 2008, the government initiative built on the palliative care network created by Dr. Kumar in 1993. The state now has more than 200 local clinics across all districts. And the backbone of this vast, decentralised network – one of the largest in the world – is more than 10,000 volunteers, many under 30.
After many days of rain, a deep stream obscured the red dirt of the road. The palliative care team hitched up their clothes as they crossed over a fast-moving section to land in the dry front yard of a modest home.
They had already visited three other patients at various houses on the outskirts of Kozhikode. Anju Sebastian, a staff nurse, checked on an elderly man as his family watched. She asked his son to fetch a thin yellow record book to make notes on his treatment. Two volunteers, Shajan P.B. and Leena P. stood nearby. The old man’s face scrunched in pain and he winced as the nurse gave him an injection. Leena held his hand tight to help him keep it still.
“My motivation is to do for others what I can do during my life,” she said.
Leena has volunteered for four years. Her son is a volunteer and her now-deceased husband was also a volunteer. Before her retirement, Leena would volunteer after work on Saturdays and also take time off from her job in a bank to help.
“This makes me happy,” she continued. Her voice softens a bit as she wonders about her own life: “Tomorrow, we don’t know what will happen to us.”
This branch of the palliative network cares for 173 patients, with small teams of nurses and volunteers making home visits to treat the terminally ill and offer some conversation and comfort to their often weary families. Someone from the network is available at any time, every day of the year.
Central to the success of the volunteer is a feeling of ownership, according to Dr. Kumar. Once they are trained, they are not compelled to participate in the network and can join and leave at will.
“People will do it in a much better way, more creative way, a more innovative way, they’ll apply their heart and mind to it when they own it,” he said. “This is not the institution or the society or the palliative care network. This is owned by local people. There is no hierarchy. For the work to carry on, there should be more owners, more stakeholders, more people who are interested.”
Strangely enough, for a caregivers’ network, a seeming self-interest may motivate many of the dedicated volunteers.
“When you have time to spend, don’t waste that time,” said Shajan, who is now retired and a volunteer for the last year. “I don’t have any other motivation other than the self-satisfaction I get from doing this. And one day the question will be asked of me, ‘What did I do to help someone else?’”
Dr. Kumar began his journey in palliative care when he was an anaesthesiologist administering nerve blocking injections. Then, realising pain was just one small part of a complex interweaving of issues. But a hospital, nurse and doctor could really only address the physical issues. Social, emotional and spiritual aspects were best left to volunteers. Working as a team, Dr. Kumar explains, they could alleviate most of the patient’s unnecessary suffering.What motivates so many people to spend time with bedridden or dying patients?
“The whole thing is based on empathy,” explained Dr. Kumar. “The compassion that you show is with the hope that tomorrow when you are in the same position, somebody else will also show this to you.”
Anchoring the network, continued Dr. Kumar, is a rights-based approach to palliative care, as a necessity not a privilege.
“You’re not offering this because the other guy is a poor chap who is about to die. You’re offering it because it’s a responsibility as a member of society, to make sure the other person’s right is covered.”
And in his 24th year of spending countless hours with thousands of dying patients, Dr. Kumar reflects on what it means to have a good death.
“Unless you discuss death, you will not be able to realise the value of your own life, how fragile it is and also how valuable it is,” he said. “What I’ve seen so far is that you cannot have a really good death unless you have lived a meaningful life.”
Dr. Suresh Kumar was elected as an Ashoka Fellow in 2012. M-R Abraham is a Consultant at Ashoka India.
This post was first published in The News Minute.