Around the world in 54 weeks
Destination : Kerala
I read obituaries. Sometimes it’s all I read in a newspaper on a given day. I wonder what kind of a human being the deceased was?
The quality of life you lead won’t determine the quality of death you’re awarded. The most that you can ask for is a little dignity in your final days. Sadly, many people in our country are denied that dignity.
As an anaesthesiologist, Dr Suresh Kumar witnessed first hand as terminally ill patients were sent home with unprepared family members. When all curative options had been exhausted, patients with incurable cancers, AIDS, spinal injuries or old age complications were discharged without a thought to their suffering in their remaining days.
In 1993, Dr Kumar started the Pain and Palliative Care Society (PPCS) in Calicut, Kerala. The society helps individuals and families coping with life-threatening illnesses who need access to services that enhance their quality of life. “Only 10% of people die unexpectedly from a stroke or an accident. About 90% of people will need some form of palliative care in their lives. For people with life limiting conditions — pain, anxiety, depression and social isolation, there is limited assistance from conventional medical care,” he explains. According to a 2010 report by the Economist Intelligence Unit on end-of-life care across 40 countries, India ranked at the bottom. The report factored availability, cost, quality and environment in end-of-life care.
The state of affairs in Kerala is a departure from that grim picture. With only 3% of the country’s population, the state provides two thirds of India’s palliative care services. It is also the only state in India with a formal palliative care policy in place. The state government funds community based care programmes and Kerala was among the first to change its narcotics regulations to permit the use of morphine by palliative care providers. There are more than 250 self-funded palliative clinics and a massive volunteer base that crosses 20,000 trained volunteers.
Dr Kumar advocates a three-pronged approach to improve the end of life care in India. First, a national palliative care policy. Even successful initiatives like National Cancer Control and AIDS control programmes have inadequate funds and attention given to palliative care. Second, mainstreaming of palliative care and pain management by including them in the formal curriculum. Third, state governments must ensure the availability of necessary drugs for treatment.
Community participation and a holistic approach to end-of-life care in Kerala is a success story that should be replicated. In 1996, World Health Organisation conferred the title of ‘Demonstration Project’ on PPCS and promoted it as a model for the developing world. Dr Kumar is ensuring millions live their last days well.
It is this social capital that offers more hope for the dying than any drug. If it takes a village to raise a child, it takes the same to lay one to rest.