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Palliative care education project researcher at Indian National Bioethics Conference

Author: Dr Sneha M
22 March 2017

As a researcher studying what constitutes a Good Death according to both medical professionals and people with terminal illness, I enthusiastically entered the Conference Hall of the 6th Indian National Bioethics Conference.

The focus of the conference was on: ‘End of Life and Palliative Care’. I am aware that many of you reading this article have been in the field of palliative care for more years than I have lived. 

Therefore, instead of feigning expertise, I will write this article as a first person narrative on what shaped my views on the subject while highlighting the major points covered by the conference speakers for today’s need for palliative care in India.

I work on a project titled: ‘12*12*12’. The aim of the project is to visit 12 state palliative centers  in India over a period of 12 months and sensitising at least 12 general practitioners in the basics of palliative care.

Given that only three states in India have a palliative care policy, and only 16 out of 28 states, and seven union territories have any palliative services at all, I combined my love for research, travel and ethnic communities with the need of the hour.

Looking for inspiration and professional support, I engaged myself fully in the event, attending as many workshops, oral presentations and panel discussions as possible.

What colours my work and made me a different person from then on has been Ms Wendy Stuart’s humble but forthright and powerful statement on the last day of the conference.

She stood up and said: “I am conscious of being an Australian speaking to erudite Indian audience, but it’s not about rich, young heterosexual men.”

This was with regard to the discussion on Advance Directives Bill. The Indian Government had passed the MTT Bill which appeased no one, and in response a bill is being drafted by the medical community.

Ms Stuart became the voice of the poor, women, children, LGBTI community and those with learning disabilities. She argued that however conscientious, in the heat of discussion it is so easy to forget to consider those who are not visible.

Another point that challenged the existing status quo was reconsideration of what constitutes the family, especially in transitioning times with an increase in the single person household.

Is our definition of family restricted to people connected by blood and marriage, or can we include the transient, un-namable relationships who show no less care and stick by the terminally ill.

The conference expanded my view which had only my patients and me and brought in stake holders and observers whose voices the medical community seldom hears: the philosophers, lawyers, ethicists, and advocates.

While the 12*12*12 project aims to reach the hidden GPs in rural areas of the country, I found my work supported by Dr Rajagopal’s urge to bring palliative medicine outside the conference rooms to the man on the street.

From Dr Roop Gursahani’s statement that an uninformed patient is a culpable offence, and Dr Sumana Navin’s rendering that organ donation can be a source of leaving legacy and meaning making, to Dr Soumya Jacob’s question of whether doing something to decrease the sexual urges of the special children who are not in a position to understand their sexuality comes under palliative care, the conference boiled blood and melted hearts.

Then there was Mr Shiv Iyer, who spoke about: ‘Who decides, on what basis and what makes the decision right?’ Caregivers stress was addressed by Dr Priyadarshini Kulkarni, stating the importance of addressing this, and the potential repercussions on patient care and drop-out rates. Dr Kulkarni noted that this often does not translate into practice in this part of the world as much we would like to.

Dr Rizvi from Pakistan, a man oozing out warmth and precision in unintelligible harmony, spoke to how we doctors have forgotten to receive compliments, and to the ‘whole pain’ of our patients.

He mirrored the state of the patients in India when he said: “In my country, you pay or you die,” illustrating how his institution challenges this assumption daily.

The instant he said: “Our people” all boundaries disappeared. Dr Mary Ann stated that networking with schools, policy makers and most importantly the GPs was the way forward for palliative medicine, saying: “home care is the answer!”

I walked in a novice and walked out dripping with the sweat and blood put in by the people in the field who work from all disciplines of society.

Whenever I find myself believing the external sledging about the impossibility of the 12*12*12 project given my newness in the field and absence funding as yet, I am reminded of Emma Watson’s Speech at UN Women: “If not me – Who? If not now – When?”

Dr Sneha is a medical doctor presently working with MNJ Institute of Oncology in Hyderabad, India. Her interests include palliative medicine, dance- and art therapy, pranic healing and death education. Email Dr Sneha on dreamsorama@gmail.com for more information or to help support her research. 

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