An epic journey across India to build palliative care skills and awareness

Categories: Care and People & Places.

Hi Dr Sneha, thanks very much for taking part in this interview. Could you introduce yourself briefly?

I am Dr Sneha Rooh, a palliative care physician from Hyderabad, India. I also have a certification from the Interventional Pain and Spine Clinic (IPSC). Basically a researcher and clinician, I am now travelling across India’s 16 states training and doing research work on: ‘What Constitutes Good Death’ and ‘Needs and Concerns of people in Indian LGBTQIA community regarding end of life’.

Can you explain to our readers what your project is about?

The project entails me travelling to 16 states of India into rural areas and provide free training in basics of palliative care. I will be simultaneously doing what is called consciousness raising – a form of socially engaged art – by holding Death Cafés, screening movies and having the public interact with ‘Before I Die’ walls.

The modules of the training include a section on inclusive care, which I thought to be important coming from the LGBTQIA community myself, it will however talk about attitudes of the health professionals with regard to marginalised groups such as ‘Dalits’ – people perceived to be of lower caste, indigenous people, and people with learning disabilities. The demonstration of family conferences, ‘death review’ and self-reflection meetings are another aspect I would like for people to become aware of through this project.

What made you decide to do this?

It started off when I presented my paper at IAPCON 2016 and was suggested to increase the subjects of the study and maybe do it pan-India, at the same conference, doctors from different states gave a ‘report card’ about all the four zones and I was flabbergasted at the lack of palliative care availability in my home country! That’s when I decided that this journey had to be made and without delay. It is the way I learn best, listening, and interacting in the field and engaging the public.

In India, palliative medicine still receives surrogate treatment. General practitioners and specialists alike see no need to receive training pertaining to the field. My own colleagues from other branches have asked me what my role as a doctor was at that stage. It is hardly surprising when our education has almost no teaching hours dedicated to the subject. Also there are moments of depth and beauty a palliative physician experiences which I wish other practitioners could enjoy.

Who will benefit from the project?

The training is open to doctors, nurses, physiotherapists, counsellors, social workers, and also paid and unpaid carers. Non-governmental organisations that work with the frail and elderly are also welcome to get in touch. Sensitisation will target the graduate students by connecting to teaching hospitals and the public. Ultimately, people and their families needing palliative care will benefit.

What practical considerations (e.g.: travel and logistics) will you have to bear in mind for the project to succeed?

This is the part that grounds me but also dampens the spirit since I am the only one working on this currently.

Identifying the potential hosting organisations, pitching the idea and persuasion is major work. Not many institutions are willing to take part in the research on needs of people in LGBTQIA community so ethical considerations around this issue is a part of the planning.

Keeping the time frame limited but still open and travelling by region is something I am grappling with. Since this involves leaving my full time job, monetary concern is always in the back of my mind.

What is the timeline of the project?

The project starts this October in the south of the country, and I work up my way to the North of India, It spans to 16 months, I am open to extending it a little depending on the need.

What challenges and reactions have you received so far? Is there a particular instance that stands out for you?

Since I proactively seek the institutions out and offer the training for free, the initial reaction is doubt and skepticism, with no institutional backing, it’s easy to doubt as well. The same issue comes in the way while applying for grants, so I decided to make the project crowdfunded. I am ‘couch surfing’ and carrying my rice cooker: yes this is how I am doing it!

Who have been your greatest supporters so far? Is there a specific story you can share with us about how you have been supported?

Once in the phase one of the project when institution heads wanted to see me in person, I had a problem with courier of my debit card and didn’t have money to pay my room rent, that’s when an acquaintance transferred 1.5 lakh (approximately 2,315 US dollars) as a support to the fund. Yes, angels do exist.

There is a doctor in Kashmir who gave the onus of my safety to his family member and there are friends who pack my bags for me and include the small items – like tissues – that I forget.

You have mentioned before that hosting Death Cafés has come about as unintended collateral of the project. Could you explain more about that?

When I started talking to patients, relatives and medical professionals about death in depth to talk about Good Death, I noticed that patients were willing and relieved, carers reluctant and professionals almost completely unwilling.

I wanted to see the reaction among the public and researched a way to do it, that’s when I came across the concept of Death Cafés.

We meet once a fortnight. The experience is enriching, everybody is moved, recently we had a session at a school and the result was heart-opening, it taught me a lot about the wisdom we fail to see in children. There are a few hospitals that have requested it.

Could you tell readers how they can get involved?

The next steps include contextualising the module to the regions, India being so diverse, it will be something to think about. I am spending a lot of time learning about the places I am going. Writing funding proposals and corresponding takes a lot of time.

Since this is a crowd-funded project, contributions are more than welcome. Another way is to make this visible, many beneficiaries are not aware of this because the project is not affiliated to any organisation.

Also, because palliative care in general is not very visible among medical communities, when you share, tweet, talk about this to your colleagues, seniors, affiliate institutions In India and elsewhere you are helping the cause.

You can follow me on my blog, Staying with the Silences and find the crowdfunding page online.

Leave a Reply

Your email address will not be published. Required fields are marked *