A better death is as important as a good life, say the founders of two of the city’s newest palliative and end-of-life care centres.
Nobody thought he would be able to play the piano again. But before he died towards the end of last year, this elderly musician, who lived on Marine Drive and was suffering from spinal cancer, briefly rediscovered the joy of music, and his poignant notes lingered in the salty air at his home.
“Later on, since he would have problems sleeping at night, he would want recommendations on shows to watch. One day, he called me and said he could sense his time was up. But he wanted me to continue recommending shows to other people. He thought they were very good. In the end, he died a peaceful death,” says Devaunshi Mehta.
Mehta is a psychologist at Palcare, which, along with Romila Palliative Care, is among the most recent addition to the city that treats people with terminal illnesses, primarily cancer. Behind both Palcare and Romila are stories of personal loss.
“The medical system here is geared towards looking for cures. But sometimes you have to let go,” says Pheroza Bilimoria who lost her husband Jimmy, a top Tata executive, to lung cancer in 2013. “Back then, I, too, hoped that he would be cured, and since money was not a constraint, we rushed from one hospital to another. It didn’t matter – Jimmy died a difficult death.”
Bilimoria, a former publishing professional, set up Parel-based Palcare, which provides home-based care to patients, in December 2015, with help from the Tata Trusts and industrialist Anand Mahindra. She says that people always want to die at home, surrounded by their loved ones and not “hooked to hundreds of tubes in a hospital”.
But Mumbai — and the entire country, with the exception of Kerala — has too few palliative care centres. “About seven and a half lakh people (according to the National Institute of Cancer Prevention and Research) are diagnosed with cancer each year in India, and the mortality rate is between 70 to 80 per cent. But we still don’t talk about death as much as we should.” (According to social entrepreneur network Ashoka, India has about 50 lakh people who require palliative care, but only two percent get it.)
Palliative care is not only about the management of pain — with opioid medications such as morphine — and symptom management, but it is also about resolving issues such as guilt, resentment and spiritual torment in patients. “There’s a lot of anger in people — this thing about ‘why me?” — and many believe they are afflicted with the disease because of something they have done,” says Mehta. Plus, it is also about helping families come to terms with the grief and loss. “Several of them don’t know how to deal with a patient who is dying of advanced cancer, or a similarly life-limiting disease. The poor come to us more readily, because they have no choice; the rich keep looking for cures before getting in touch,” says Bilimoria, whose team of about 15, including doctors and nurses, is at present treating 251 patients at their homes.
India has around 269 palliative care centres. About 169 of these are in Kerala, and 25 years before we had a National Program for Palliative Care, Dr M R Rajagopal founded the Pain and Palliative Care Society in Kozhikode in a single room at the city’s Government Medical College. Today, he heads the Thiruvananthapuram-headquartered Pallium India that runs over 100 palliative care centres in Kerala and several more outside the state.
“The greatest resistance to palliative care comes from medical professionals themselves, and it is still not taught as a subject unlike in the West,” says Rajagopal. Palliative care, says Rajagopal, first took root in Kerala as a communitydriven movement funded by donations from laypeople and supported by volunteers. But the government was quick to support it by relaxing narcotics regulations to permit use of morphine. “Kerala was also the first state to draft a Palliative Care Policy, in 2008. Today both Karnataka and Maharashtra, too, have palliative care policies, but what matters is the implementation.”
Kerala was the first state to focus on palliative care, because it had already tackled issues that still plague other parts of the country such as infant mortality, says Dr Armida Fernandez, the former dean of Lokmanya Tilak General Hospital and Medical College.
Fernandez’s Romila Palliative Care, named after her daughter who succumbed to cancer in 2013, is a sixmonth-old voluntary palliative care facility in Bandra that has so far looked after 40 patients from various strata of society. “It’s not just end-of-life care, we provide treatment and psychological support to patients with life-limiting diseases right from the diagnosis.” While a massive void still exists in palliative care in the country, Fernandez says that it is slowly becoming a priority area, and the change is being led by individuals. “That’s how it started in Kerala, too, and the state will join in. India started with battling infectious diseases, and maternal and infant mortality, and the focus is now shifting to lethal, non-communicable diseases. Sooner or later, palliative care, too, will become, I hope, a priority. When you’ve managed to take care of the living, you have time for the dying.”
And a better death is as important as living a good life, says Devaunshi Mehta. Studies have shown that the dying often have big regrets, but Mehta says that the little things we can do for them also make a huge difference. Like it was with Sushma Walke, a kirana shop owner who passed away at the beginning of this year. Walke, who had breast cancer, and was also suffering from brain metastasis, was bed-ridden for months. “She had nothing to do, she was agitated. So we got her a wheelchair, and that made her happy. And when we asked her what else she wanted to do, she said she simply wanted to have long chats with her neighbour, just like in the old days. A few weeks after that, she divided her assets between her children and passed away.”