Death, be gentle

Amal Sarkar thought it was a throat infection. No, there was no fever, but the 63-year-old had trouble swallowing. A fortnight later, when the problem persisted, he consulted a doctor.

A few tests later, the retired West Bengal government employee was diagnosed with cancer of the tongue. His treatment - chemotherapy, radiotherapy and other medical interventions - started in 2012. He died in 2014.

"In his final days he was only on antibiotics and paracetamol. No planned and specific medication was provided by his doctors," his wife, a retired schoolteacher, says.

P.K. Mohanti, a retired bank officer from Sikkim, was diagnosed with Parkinson's disease when he was 67. He consulted one neurologist after another and spent more than Rs 10 lakh on his treatment, but nothing helped. He gradually developed severe dystonia or muscle spasm causing excruciating pain. Mohanti died in January 2015.

"Even on his last day he didn't receive any medicine except a painkiller," says his son.

Sarkar and Mohanti are not alone; an estimated 8-10 million people in India require palliative or end-of-life care each year and only a very small fraction actually get it.

"Less than two per cent of needy people in the country have access to pain relief," says M.R. Rajagopal, chairman, Pallium India, a Thiruvananthapuram-based charitable trust working for people in need of pain relief and palliative care.

Last year, Lien Foundation - a Singaporean philanthropic organisation - commissioned a study to take into account global developments in palliative care in recent years. The report by The Economist Intelligence Unit (EIU) titled "The 2015 Quality of Death Index: Ranking palliative care across the world" covered 80 countries. India was 67. The UK fared the best and Iraq the worst.

"India and China perform poorly overall, at positions 67 and 71 in the Index. In the light of the size of their populations, this is worrying," the report said.

"Palliative" derives from the Latin word palliate meaning "cloaked". Palliative care is the term for specialised medical treatment attempting to cloak or shield from pain those suffering from life-limiting diseases such as cancer, HIV and Alzheimer's. The World Health Organization describes it as an "approach" that improves the quality of life of such patients and their families through the prevention and relief of suffering.

"It involves appropriate physical, psychological, social and spiritual care at the right time," explains Mary Ann Muckaden, professor and head, department of palliative medicine, Tata Memorial Centre, Mumbai.

Palliative care is a function of curative healthcare, points out Shivakumar Iyer, professor, critical care medicine, Bharati Vidyapeeth Medical College, Pune. "Since this primary curative care itself is not available to a large number of Indian patients, it is not surprising that end-of-life or palliative care is poor in India," he says.

But with growing life expectancy, experts say, a time will come when it will no longer be possible to ignore such patients and their needs. The EIU report mentions that there are more people over the age of 65 in the world today than those under the age of five. It quotes Stephen Connor, senior fellow at the Worldwide Hospice Palliative Care Alliance, as saying: "That's never happened in human history before and it's going to continue to get more pronounced."

India has nearly 300 palliative care centres, two-thirds of which are in Kerala. According to Gayatri Palat, director, Palliative Care Access Program - India, or PAX, palliative care services now exist in 14 states. PAX works towards improving the quality of life of cancer patients and is an initiative of the International Network for Cancer Treatment and Research.

"Barriers such as low priority in government policy, dearth of manpower and resources, lack of training of healthcare workers, difficulty in procuring morphine, all impede the development of palliative care," she says.

Of all the shortfalls, the one that rankles most is the lack of training of doctors and nurses in this area. "We are hardly ever taught how to handle death or terminal illness," says Shantanu Panja, chief consultant of ENT and head and neck surgery, Apollo Gleneagles Hospitals, Calcutta.

The Medical Council of India, which is the statutory body for establishing uniform and high standards of medical education in India and its counterpart for nurses, the Indian Nursing Council, are yet to adopt curricula that includes palliative care. "The training of all young graduates on palliative care will ensure a future of well-integrated healthcare at all levels," says Muckaden.

But what's also true is the fact that many more health practitioners are focusing on palliative care today than before. Take Pallium's Rajagopal. An anaesthesiologist from the All India Institute of Medical Sciences, New Delhi, he founded the Pain and Palliative Care Society in Calicut in 1993. It has its own outpatient clinics, community volunteer programmes and home care initiatives. In 2001, its training, research and outreach arm, the Institute of Palliative Medicine, was set up.

Elsewhere, too, efforts are on. In 1994, the Indian Association of Palliative Care was set up to work for the development of palliative care "on the basis of scientific research, as per the need of the country and at par with the international standards". In 2012, the government introduced the National Program for Palliative Care that is meant to provide palliative care services across the country in collaboration with the states.

One of the major hurdles to palliative care in India in the 90s was the inaccessibility of opioids or drugs that relieve pain. In 2014, Parliament finally passed the Narcotic Drugs and Psychotropic Substances (Amendment) Act, relaxing restrictions and making opioids more accessible.

"The Government Opium and Alkaloid Works (the organisation responsible for reliable supply of narcotics raw material in India) assures us that it can produce as much morphine as is needed. But the problem is, first, a lack of professional awareness and education, the reason why there are no prescriptions in most of the country. The second problem is that most states have not implemented the Narcotics Amendment Act of 2014. Once the new law is implemented, every institution will go through a single window licensing process," says Rajagopal.

According to him, the current consumption of morphine in India is only around 300kg or less. "If enough was used to treat people in pain, the consumption would be more than 30,000kg," he says.

However, the best news or what the EIU's 2010 report (in which India occupied the lowest position in a survey of 40 countries) had called India's "beacon of hope" is the progress made by Kerala, which has a formal palliative care policy. The government provides funding for community-based care programmes.

The community-based palliative care programmes, also known as Neighbourhood Network in Palliative Care (NNPC), look after more than 2,500 people every week. Through NNPC, comprehensive nursing, spiritual and psychological care, supply of medicines free of cost and training of a patient's family members on personal care are provided across 14 districts of Kerala, covering 60 per cent of those living below poverty line.

Today, Kerala is not alone - Maharashtra, Tamil Nadu and Tripura have their own state palliative care policies. Andhra Pradesh and Telangana have also provided insurance coverage for palliative care among poor cancer patients. In Maharashtra, children's palliative care is also included in the state policy.

About West Bengal, Muckaden says, "I know that Tata Medical Centre has approached the state government with a draft palliative care policy. As far as I know, it has been at the discussion stage for the last one year."

In an article titled "Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act" published in the Indian Journal of Medical Ethics this year, Rajagopal concludes with the following exhortation: "But can the medical profession leave it all to the government?... Do they not have the moral and ethical duty to advocate that as the WHA (World Health Assembly) demands, palliative care should be integrated with routine medical care?"

Panja of Apollo Gleneagles, Calcutta, feels the impetus has to be even more broad-based to be impactful. "I strongly believe that palliative and end-of-life care in India needs to be a social movement."

( Some names have been changed)