When Indian Bollywood star Irfan Khan took to twitter to declare that he is diagnosed with a rare disease called neuro endocrine cancer. This news sent a shockwave across India. But he recently penned a heartfelt letter about his battle against cancer, in which he wrote, “Fear and panic should not overrule me and make me miserable.That was my intention. And then the pain hit. As if all this while, you were just getting to know pain, and now you know his nature and his intensity. Nothing was working; no consolation, no motivation.”
One other story of excruciating pain that shook the nation recently was of a suicide committed by Maharashtra’s Additional Director General of Police Himanshu Roy. In his suicide note he wrote,” Ending my life as I am unable to deal with the pain.” These are only a few stories amongst lakhs of other such stories.
According to National Crime Records Bureau data (2015), 133,623, people committed suicide in 2015 and out of this, 15.8% people committed suicide due to illness and pain. The dearth of palliative care and lack of proper pain management policy in India are making this situation worse.
Sarfaraz Hussain,36, from Moradabad district of Uttar Pradesh was diagnosed with tonsil cancer way back in 2017, relentless and severe pain made his life miserable until he started having palliative care at Rajiv Gandhi Cancer Institute & Research Center in Delhi. Now his situation is improving exponentially.The term, which refers to the care for those with crippling pain associated with life-threatening illnesses, is one that most people are still unfamiliar with.
As per the World Health Organization (WHO), palliative care is a multi-disciplinary approach that improves the quality of life of patients with life-threatening illnesses, and their families by relieving suffering and pain—physical, psycho-social and spiritual.
Also,Sheela Devi,48, from Bijnor district of Uttar Pradesh is also among very rare fortunate cancer patients who are having access to palliative care.But every patient is not fortunate as Sarfaraz and Sheela Devi, because the ratioof existing palliative care facilities in Indiato the required facilities is very low.
Dr Rakesh Garg,Associate Professor of Intensive Care, Pain and Palliative Medicine at All India Institute of Medical Sciences, New Delhi says,” Statement made by the doctors that nothing cannot be done, now, the word ‘cannot’ has been taken off, at each stage of disease palliative care has something to offer to the patient whether it’s an initial stage or the final stage.”
Reports after reports has pushed this matter to the fore that India is one of the worst places to die in and The Economist Intelligence Units (Quality of Death Index 2015) corroborates those reports and places India at the 67th position among the 80 countries that were surveyed to assess the quality of death. The one of the attributed reason for this, circled out by Dr: MR Rajgoapalan, Padma Shree awardee and chairman of an NGOPallium India (also known as father of palliative care)says,” The lack of palliative care in India and little attention paid to palliative care by the government are the aggravating factors for this.”
“As only 2 per cent people in India have access to palliative care against the global average of 14%,” says Dr: MR Rajgopalan. Tracing the journey of palliative care in India Dr MR Rajgopalan said,” Palliative care was born in India as the Shanti Avedna Sadan in Mumbai, a hospice, in 1986. Over the next five years, the Sadan established two more branches, one in Delhi and one in Goa; but patients outside these institutions had no access to palliative care.”
The situation today is not much different from the situation in 1986, Rajgopalan says. Reena Sharma, a doctor at Can Support NGO which is providing in home palliative care to the patients says,”It is not a hidden fact any more that NGOs are the ones who are taking lead in bringing about change in this direction and very few efforts are being made by the government.”
The figuring out the underlying problem about the lack of palliative care in India Dr Rajgopalan says “Medical students are only taught how to cure disease, but not how to treat pain,” Rajagopal says. Dr Rajgopalan’s incessant attempts to persuade the Medical Council of India to include palliative care in the syllabus for medical students did not bring any substantial results. Which he circles out as the biggest failure.
Mounting a scathing criticism of Government’s efforts Meenakshi Biswas, a research scholar and expert on Euthanasia said,” Palliative care did merit attention in the Health Policy launched in the year 2017. But The Health Policy 2017 does not talk about introducing courses on Palliative care for medical and nursing students and a dearth of public funding in the palliative in particular and healthcare in general continues.”
India does not have any proper pain management policy as of now. This can be seen in the fact that only one state in India, Kerala, has created and implemented proper palliative care policy way back in 2008 after acting on a purposal submitted by Dr Rajgopalan in 2005.Other states are now taking cue from Kerala and making substantial progress;Karnataka created palliative care policy in 2015 but has not implemented it yet;Maharashtra has got its draft ready.
India recorded an estimated 3.9 million cancer cases in 2016, data available with the National Cancer Registry Programme of the Indian Council of Medical Research (ICMR) shows. But to manage the severe pain of these 3.9 million people in India we have only about 1400 palliative centers in India (According to Financial express).
Dr Malwinder Singh Sahi, Senior Consultant – Head, Pain Management at Rajiv Gandhi Cancer Institute and Research Centre says,” Awareness about palliative care is increasing but a lot need to be done in this direction and now this misconception should get vanished that this facility of palliative care is exclusively for terminally ill patients which is not true as palliative care is for anyone in need of severe pain management, and also counselling.”
(Rajat Mishra is a freelance journalist based in Delhi and a student pursuing Master’s In Convergent Jornalism at A.J.K MCRC, Jamia Millia Islamia, New Delhi. Writer can be reached at firstname.lastname@example.org .)