A round-table discussion on ‘End of Life Care in India: Connecting the Dots, Building a Coalition’ was organised at Nayati Medicity on 29th & 30th April 2017 at Mathura. It brought together senior doctors across specialties, lawyers, bureaucrats and public intellectuals who came out with ‘The Mathura Declaration – A Call to Action for Ensuring Humane Care at the End of Life’. Dr. Sunil Shroff, Managing Trustee and Dr. Sumana Navin, Course Director, MOHAN Foundation were invited by the organisers Dr. Raj K. Mani, Dr. Roop Gursahani and Dr. Nagesh Simha.
End of Life Care (EOLC) is support for people who are in their last months or years of life. It is meant to help patients live as well as possible until they die, with due attention to their wishes and preferences, including a choice of location of care and place of death. This care is inclusive of the patient’s family, care givers and significant others. Ideally it should be provided by a palliative care team but it can also be provided by disparate health care and social work professionals. In India, this whole field is completely undeveloped and as a result the Quality of Death index in 2010, rated India bottom in a list of 40 large countries.
In August 2015, three national medical associations: the Indian Society of Critical Care Medicine, the Indian Academy of Neurology and the Indian Association of Palliative Care came together to kick-start the process of developing EOLC in India by forming a joint task force: ELICIT (End of LIfe Care India Taskforce). It was decided that their primary goal would be to engage with the government in drafting and enacting appropriate EOLC legislation for the Indian Union. In addition to legislation, public education and awareness and wider access to generalist palliative care are required.
The Mathura meeting focused on four key areas - EOLC Legislation, the Economics of Dying in India, Religion Spirituality Mortality, and Putting it all Together. The eminent speakers included Dr. M. R. Rajagopal, Dr. Raj K. Mani, Dr. Roop Gursahani, Dr. Nagesh Simha, Dr. Jeremy Johnson, Dr. Sridevi Seetharam, Prof. Dipankar Gupta, Prof. Sarasu Thomas, Mr. Ravi Duggal, Mr. Devdutt Pattanaik, Rev. Arul Dhas T, and Dr. Sunil Shroff. Dr. Shroff spoke on ‘Towards a Uniform Definition of Death: Why it Matters’. He emphasised that conversations about organ donation were a part of good EOLC. Dr. M. R. Rajagopal in his presentation on ‘Ideas for India: Capacity building in Palliative care’ proposed a three-pronged action plan:
1. Launch a National Advocacy Campaign.
2. Create and offer an online certificate course called “palliative care for the end-of-life” or “palliative care in the ICU”.
3. Create and demonstrate model “patient- and- family-friendly ICUs”.
Visit www.onelittlewish.org for more information on EOLC.