A crowd of physicians was cracking up watching a bunch of oldies perform standup comedy at Mumbai’s Cuckoo Club. To her attentive audience, Janice Powell couldn’t help pointing out that it was her first standup performance, and, well, could also be her last.
“Death is not such a bad thing,” she quipped. “Even I have never died, I’m just saying,” she added matter-of-factly, sending her audience into peals of laughter. Powell is a 65-year-old homemaker who has terminal blood cancer. To improve the quality of her life, she is taking palliative care, a holistic treatment that helps her mitigate her suffering physically, psychosocially, and spiritually.
Pooran Issarsingh is one of the first female lawyers in India. She practiced law until the age of 82. These days, she likes to wear make-up and take selfies. “Who knows, one of them might work for my obituary,” she joked with her audience at the club. The octogenarian’s heart pumps at 20% its capacity, but she doesn’t give two hoots about driving around alone in the congested streets of Mumbai.
Death and humor may be strange bedfellows. But not for Powell, Issarsingh, and two other terminally ill patients who are rooting for palliative care through the Laugh At Death campaign. The foursome have done a live show, a spot for a radio program, and appeared on national television for this campaign, which premiered on Twitter and YouTube on March 30.
The campaign, which is the brainchild of the Indian Association of Palliative Care (IAPC), aims to do away with some of the ignorance about palliative care and the anathema around death.
They, and the terminally ill patients who braved the comedy stage, have a special message for viewers: palliative care helps patients get comfortable with death. So comfortable, in fact, that they may even joke about it.
“I “In India, death is such a taboo subject that everyone, including the doctors, wants to push it under the carpet,” said Dr. Mary Ann Muckaden, IAPC’s president. India was ranked 67 out of the 80 countries on the Quality of Death Index in a 2015 study commissioned by The Economist. Even though a national policy on palliative care was introduced in 2013, only three Indian states have adopted it.
Muckaden explained that in India, families and doctors often collude to hide the patients’ illness from them. Apart from their own discomfort having conversations about impending death, they believe it may influence the patient to give up on life.
Families also have an urge to provide the best medical interventions for their sick elders until their last day. Therefore, many patients spend their last days in hospitals without their families, with tubes sticking out of them, sometimes dying in their absence.
But studies show that the bulk of the people around the world would prefer to die at home.
That’s where palliative care can help. It allows patients a pain-free and dignified end, without having to spend their last days in a hospital amidst a host of medical interventions. Palliative care physicians understand that death is a natural process and instead focus on the quality of life of a dying patient.
“Patients need to be put on the trajectory of palliative care along with their medical treatment, so when they actually reach the end of life, they are already prepared,” said Muckaden. “They receive psychological counseling, awareness of [their] limited prognosis, and time to accept all of this.” Most importantly, their families are counseled about the importance of the patient making independent treatment choices.
AAs part of the Laugh At Death campaign, a website was launched for physicians, patients, and families to find relevant information on palliative care. A national helpline is in the works to facilitate direct interaction with counselors.
IAPC partner, an advertising agency called Medulla Communications, conceptualized the idea for the campaign. “We thought it would be inspirational to see someone so close to death be able to joke about it,” said Praful Akali, the agency’s founder. They scouted for terminally ill patients who were aware of palliative care and could speak openly and laugh at their own prognosis.
Akali found Issarsingh through his personal network and was wowed by her vivacity and positive attitude toward life, despite her life-limiting illness.
“The best thing about Pooran Didi is that she is super likeable, which helps her make a connection with her audience,” said Kashyap Swaroop, a standup comedian who helped Issarsingh with her set (he refers to her with the Hindi honorific “Didi,” or older sister). She easily shared anecdotes from her life, making it simple for Swaroop and his colleague Vinay Sharma to help structure them into jokes.
For Issarsingh, whose conversations are naturally interspersed with laughter, the process was easy. “We created jokes over a few hours of friendly chats,” she said. “They ensured that my feelings come through in all of them.” Her ability to laugh at her limitations also came in handy.
“We tried to incorporate the idea of death in all her memories,” Swaroop said. In one of her jokes, Issarsingh mentioned that she was recently promoted as the eldest in the family after the death of her elder sibling. “My younger sister is now waiting for her promotion,” was her punch line. She agreed to this one after some resistance. “It was difficult to convince Pooran Didi that as a standup comic, it is okay to make a joke involving her family,” Swaroop said.
The performances of the four patients have garnered praise from across India. People have called them strong, inspiring and courageous. And by lightening up about their own imminent death, they have conveyed a powerful message: If you can’t talk about death, it’ll be harder to consider palliative care, which could ease pain in someone’s final days. So break this taboo.
