“It is an elephant in the room that we can no longer ignore. 55 million people in our country are victims of catastrophic health expenditure every year. Paying for health services pushes them into poverty. Children drop out of school, people lose their jobs and the ripple effect continues long after the patient is gone. India is somewhere near the bottom in the list of countries that have quality health care. But that need not be so. Palliative Care can reach hundreds and thousands of homes at very little cost.” Says Padma Shri awardee 2018 & Chairman Pallium India – Dr M.R Rajagopal,
On 12 October 2018, ahead of World Hospice & Palliative Care Day which falls on the second Saturday of October, CanKids..KidsCan( National Society for Change for Childhood Cancer in India) and Pallium India (leading national trust for palliative care in the country) came together to host a special event at Select CITYWALK, Saket, New Delhi –
– the launch of a civil society nation-wide pledge campaign “Say NO to PAIN” that asks policy makers, health providers, treating doctors and palliative care specialists to bring back quality in to healthcare, to keep the patient at the center and to ensure the provision of palliative care services in hospitals and in the community, &
– for the Delhi screening of Hippocratic -18 Experiments in Gently shaking the World – a film that documents the life and work of the father of Palliative Care in India Dr M.R Rajagopal, Chairman Pallium India, and in doing so shines the light on the power of human spirit, human rights and social justice.
A recent (October 2017) Lancet Commission on Access to Palliative Care and Pain Relief advises that the focus (along with attention to the disease) should be on serious health related suffering. It is estimated that 61 million people world-wide are in such suffering, and India is home to 10 million.
“The duty of the health care provider is to mitigate suffering. It is “to cure sometimes, relieve often and comfort always”, explained Dr Rajagopal. “Even the Indian Council of Medical Research agrees there is no exception to this principle. But today, almost all efforts are aimed at diagnosis and cure. Pain and other illness related suffering – whether it be physical, social, psychological or spiritual – is almost completely ignored. When cure is not possible, the patient is either rejected or submitted to aggressive inappropriate treatment which adds to physical, social and emotional distress. “
“It is time that civil society, patients, caregivers, stood up and demanded quality in healthcare where the patient and his family are the focus,” said Cancer Survivor Advocate and Chairman Cankids Poonam Bagai. “We are launching a nation-wide civil society pledge campaign “Say No to Pain” – asking policy makers, drug controllers, health providers, treating physicians and palliative care specialists for urgent and specific action to address this suffering in India. For the 10 million people in India estimated to have serious health related suffering, we aim to collect 100,000 pledges.
Text Box: In the Indian context, who gets missed?
• 99% of the population that needs palliative care are missed.
• Among the remaining 1% population that do have some palliative care access, the following groups are marginalised:
o Children – There are approximately 9 million children living with life-limiting and life-threatening conditions in India. 5 million require palliative care. Less than 1% have access to this care.
o Women – even in the state of Kerala where services are far more accessible than in the rest of the country, men access palliative care more than women.
o The elderly living alone – The India population study in 2014 showed that in Kerala alone, around 170,000 people above the age of 60 live alone in single person households. Of these nearly 1,43,000 are women.
o People with stigmatising diseases like HIV.
o Paradoxically, the rich. The affluent go to corporate hospitals, most of which have no effective pain relief programs, no medicines like oral morphine which is in the essential medicines list of Government of India or palliative care. Instead they get cruel, inappropriate end of life care and die isolated from the family in intensive care units.Commenting on the event, Mr Arjun Sharma, Chairman, Select Infrastructures, said, “Select CITYWALK has always been a socially responsible organization which has propagated strongly for the betterment of society. Select CITYWALK is proud to associate with Pallium India and Cankids in playing an active role in improving the quality of lives of people who are suffering from life threatening diseases and pain. The event will raise tremendous awareness and support for palliative care of patients. We are confident that the initiative will receive good support from our patrons and will surely help the patients suffering from such agonizing diseases.”
As the World Health Assembly pointed out in 2014, principles of palliative care need to be integrated into all health care to mitigate serious health-related suffering.
According to World Health Organisation, “Palliative care is an approach that improves quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Like in most low-income or lower middle-income countries, the need for palliative care is greater in India than in the west simply because disease-specific treatment does not reach patients adequately or early enough.
In considering the definition of palliative care, it is important to emphasise that the phrase “life-threatening” is to be used keeping in mind life in the broader sense of the term and not just existence. This means that many “life-limiting” diseases like paraplegia are included, which palliative care professionals believe threaten life by limiting it to within 4 walls. In the West, there is a parallel care system that takes care of people with such conditions, and provides physical, social, mental and spiritual support in the home setting; India does not have such a system and these patients need to be brought into the fold of Palliative Care.
In India last year, an estimated 55 million people were pushed below poverty line due to catastrophic health expenditure where 38 million were due to the cost of medicines alone.
Even today, medical and nursing students are not taught practical pain management or the basics of palliative care. The gap also exists in imparting basic communication skills
The event, was generously hosted by Arjun Sharma, owner of Select City walk mall at the Select plaza, which began with poster making and an art exhibition on the theme of SayNoToPain by childhood cancer patients, caregivers, survivors and families and was followed by a panel discussion with experts.
The event was attended by Dr.Alok Mathur (Additional DDG, Ministry of Health and Family Welfare), Shri Dinesh Bouddh (Director, Dept. of Revenue), Dr. Sushma Bhatnagar (AIIMS), Mr. Rajesh Srivatsava (Commissioner of Customs and soon to be DDG of Narcotics Control Board), Mr. Sudhir Gupta (Ministry of Health and Family Welfare), Dr M R Rajagopal (Padma Shri Awardee, 2018 and Chairman Pallium India), and various experts from healthcare. The event culminated with the screening of the film “Hippocratic: 18 Experiments in gently Shaping the World’, by the award-winning Moonshine Agency from Australia.
‘Hippocratic’ takes you along Dr M R Rajagopal’s journey to make India pain free. The doctor has spoken repeatedly about the importance of compassion and palliative care in reducing suffering in ailing patients, more so of those who already find it impossible to afford the high medical costs of treatment.
The ‘Say No to Pain’ campaign was launched at the event in to create awareness about palliative care amongst the urban population. It also invites patients, caregivers and their families, and influencers and activists, providing them an opportunity to participate in meaningful discussions with the panel of experts, and to understand what is being done to address the very serious gaps.