As 18-year-old Reshma waits eagerly at the doorstep of her two-room home for the team of caregivers, her father, 58-year-old Baburaj, whimpers inside, mumbling of a severe headache and intense abdominal pain. It’s raining heavily, and Seema Panicker and Shyna Suneesh, the two medical nurses of the Pain and Palliative Care Society, walk quickly towards Reshma, armed with a medical kit. Their infectious smiles and cheerful greetings immediately dispel the tense mood in the house. Diagnosed with stage 4 lung cancer earlier this year, Baburaj, a chain smoker, was referred to a palliative care unit in Kozhikode in the southern Indian state of Kerala when his oncologist realised the futility of any treatment.
Seema holds Baburaj’s hand and asks him if he has been taking his medication on time. As she checks his vitals, he answers every question diligently, visibly relieved on seeing her. Meanwhile, Shyna pores over his medical file, then brings a fresh stock of medicines from the van outside. She also hands over a bag of essential foods including rice and lentils to the father and daughter.
‘Please sit down for a while,’ Baburaj pleads with the caregivers, his eyes welling up with gratitude. Apart from his wife – who died in a train accident years ago – and his two daughters, no one has been so caring towards him.
The nurses repeatedly tell Reshma to call their 24x7 number if Baburaj needs their services at any time. ‘Just give us a missed call if you are busy and we’ll be here,’ Shyna says, waving goodbye.
For Shyna and Seema, who are trained in palliative care nursing, this visit is part of their daily routine of home care services for patients registered under the Pain and Palliative Care Society, which operates seven units, each catering to a different area of the city. Along with one or two non-medical volunteers, they visit around 10 homes daily.
Palliative care focuses on caring, not curing, and seeks to improve the quality of life of those afflicted with life-threatening or debilitating diseases through medication to alleviate pain. ‘It is total care of terminally ill patients,’ says Shyna. ‘We are trained to assist with their emotional well-being as well. Nearing the end of their lives, often all they need is the comfort of a gentle touch or a willing ear to listen to their fears, feelings or regrets.’
Since it was set up in 1993, the Pain and Palliative Care Society has helped more than 400,000 people across the state, giving patients the option of a dignified death. It is the promise of this possibility – that people will not die alone, in pain, or without any support – that has earned Kerala the new moniker, ‘the best place in India to die’.
According to a 2015 report in the Economist Intelligence Unit that compared end-of-life care in 80 countries, India ranked a dismal 67th position. However, the southern Indian state of Kerala was lauded as a ‘notable exception of excellence’ and singled out as ‘a beacon of hope’. The report said the tiny state, ‘with only 3 per cent of India’s population, provides two-third of India’s palliative care services.’
Kerala’s unique palliative care system began as a simple experiment in 1993 led by two Kozhikode-based anaesthetists, Dr MR Rajagopal and Dr Suresh Kumar. It has since snowballed into a widespread people’s movement where a 40,000-strong network of volunteers has been the pillar of its success.
‘It was the understanding that pills and needles alone will not solve the problem of pain – one of the most common symptoms in debilitating diseases – that led to the formation of the first Pain and Palliative Care Society in Kozhikode in 1993,’ says Dr Kumar. Although it initially focused on medicine and followed an in-patient set-up, a decade later this initiative unleashed an unprecedented response when it adopted a community-driven approach with the setting up of the Institute of Palliative Medicine (IPM) in the Calicut Medical College campus.
Volunteers as well as professionals provide both medical and emotional support, giving patients the option of a dignified death.
One of the few training institutions for palliative care in Asia, and the only institute focused on community-led care, IPM was designated as a WHO collaboration centre in October 2010.
‘Specialised medical technology has taken death out of the home and into hospitals,’ explains Dr Kumar. ‘Hospitals are not the best places to die and breathing your last in the ICU is the worst form of death.
‘It takes a coordinated group of providers to support the terminally ill, which is why we have placed communities at the centre of our palliative care network.’
Through a network of neighbourhood-level units set up under the aegis of IPM, trained volunteers are linked with a team of paid professionals to provide both medical and emotional support to patients in their homes. ‘Every service including home visits, consultations, medicines and inpatient care are provided free of cost,’ says Dr Kumar. ‘Funded largely through local micro-donations of as little as Rs10 (Dh0.55) a month and donations from philanthropists including many Gulf-based non-resident Indians, more than 20,000 patients are covered by the network.’
Today, more than 50 per cent of the people in need of palliative services receive the required care in Kerala. This is in stark contrast to other states in India where on average less than 5 per cent have access to such care.
‘What has worked in Kerala’s favour,’ says Dr Kumar ‘is that almost two decades ago it became one of the first states in India to relax narcotics regulations to permit the use of morphine – the gold standard in pain relief – by palliative care providers. Morphine is restricted in most other states due to fear of addiction and misuse.’
IPM coaches volunteers in end-of-life communication skills and providing emotional support. They are also trained to introduce palliative care centres into their communities, and since 2009, the local government units or Panchayat have also been providing home care services. Apart from patients with advanced terminal illnesses and geriatric issues, the network of caregivers also assists those with long-term health concerns.
‘The concept of palliative care springs from a sense of compassion to all human beings,’ Dr Kumar says.
For paraplegic Jaijeesh, 37, it is this support that enables him to maintain a cheerful countenance despite the knowledge that he may have to spend the rest of his life in a wheelchair – the result of a fall from the terrace of his home two years ago. Following a surgery and later submitting to an alternative therapy that offered the promise of a cure, the family was forced to avail the services of the local palliative unit when he began to develop acute bedsores.
‘He is a man of strong will and hopes that one day he will walk,’ says his wife, Sandhya, ‘but what weighs him down now is that he cannot hold our daughter, aged two, or play with our five-year-old son.’ As Seema and Shyna attend to cleaning and dressing his bedsores, Jaijeesh says, ‘It is a great comfort to know that there are people who willingly help you even when we have nothing to offer them; it makes us feel so wanted.’
Dr Kumar says that palliative care is an issue that is ‘close to everybody’s heart because each of us, irrespective of social or religious status, will have to tackle problems of physical decline and death at sometime.
‘As a society, we live in denial of death although that is the only certainty in our lives. Even the medical fraternity is not well equipped to discuss matters of death and dying to their patients and their families. This attitude needs to change, especially as 85 per cent of the population will have to tackle pain, debility or chronic illness. It is only 15 per cent who will have an unexpected or sudden death.’
Dr Kumar is in the unenviable position of having had to see almost all his patients die. ‘I believe that learning to see death as part of life is important. The dying phase in life is a time for introspection and reflection and many of my patients have shared their stories of courage, hope, fear and regrets with me. I call it the “wisdom of the dying” for I have come to realise that it is they who have the most to teach us about life.’
Often the memory of the departed is cloaked in sorrow, bitterness, even anger, he says. ‘But when people come up to me, hold my hands and say that I treated their loved one, the warmth and gratitude in their eyes is enough validation that somewhere along the way, I must have made a difference.’