Palliative care: Improving the quality of life

Consider this: only three out of 20 human beings die suddenly and unexpectedly; the rest die after a short or long period of illness and debilitation.

A sizeable number of this majority suffers from incurable diseases or terminal illnesses and spend the last phase of their lives in misery — pain, paralysis, breathlessness, nausea, foul-smelling ulcers, pressure sores and incontinence. They also suffer debilitating social, emotional, spiritual and financial conditions.

Enter, palliative care. “The system of care that aims to improve the quality of life of the incurably ill, dying and bed-ridden is called palliative care,” explains Dr Suresh Kumar, co-founder and former director of the Institute of Palliative Medicine, Kozhikode, a World Health Organization Collaborating Centre attached to the Government Medical College, Kozhikode.

Palliative care offers physical, psychological, social and spiritual solace to individuals set for the last journey of their life. Globally, 400 people for every one lakh need palliative care and fewer than 40 get it. In India, only 2 per cent of the needy have access to palliative care.

But, in Kerala, thanks to a unique model of volunteer community participation in palliative care backed by local self-government agencies, about 70 per cent of the needy have access. “Amid the lamentably poor access to palliative care across India, Kerala stands out as a beacon of hope,” stated The Economist, which put India at the bottom of 40 countries surveyed for the quality of death.

“Of the nearly 1,300 palliative care clinics in the country, over 1,100 are located in Kerala, indicating the success of the people-palliative care movement,” says Dr Kumar, one of the pioneers of the ‘Kerala model’.

The ‘Kerala model,’ recommended by the WHO for low- and middle-income countries, relies on people’s innate compassion and spirit of social service. The majority of the 1,100 palliative care units, run by NGOs and charities, offer free care.

The Kerala Government, which, in 2008 announced a palliative care policy, has made such care part of its primary healthcare service and asked gram panchayats and other local self-governments to set apart a portion of their annual budgets. In the past decade and half, palliative care has emerged as a social movement. “Our model evolved over the years,” said Dr Kumar, who set up the Pain and Palliative Society in Kozhikode, along with Dr MR Rajagopalan in 1993.

The society helped set up Neighbourhood Networks in Palliative Care (NNPC), which could easily respond to patients’ needs.

The NNPC tapped into individuals’ willingness to help the sick and old, and trained ordinary people in palliative care.

The government then came out with a policy framework that helped develop the Kerala model into a partnership of individuals, the government, local bodies, NGOs, charities, and religious and political organisations.

Dr Kumar, a WHO expert, is now on a mission to take the concept of palliative care with community participation outside Kerala. He has set up pilot projects in the Nadia and Murshidabad districts of West Bengal; in Manipur; at Villupuram in Tamil Nadu; and in Puducherry.

He is also helping Bangladesh, Sri Lanka and Thailand to launch such initiatives. “There are millions of incurably ill people crying out for end-of-life care across India,” he said.

“Voluntary initiatives with local people’s support can help many of them.” In Nadia, the district administration was the partner instead of the local self-government. “This can turn out to be a better model than what we have in Kerala,” he said.