“Hope is the thing with feathers,
That perches in the soul,
And sings the tune without the words,
And never stops at all.”
– Emily Dickinson
As we wind up what can only be described as an exacting year full of intense experiences – both joyful and otherwise – there is no doubt that there remains much to be done.
Perhaps the most dramatic and heartbreaking event was the flooding that Kerala experienced – the worst in a century. Thousands of lives were forever altered. But from the tumult and chaos arose something even more powerful – people coming together to rescue and restore their fellow human beings. The outpouring of courage and compassion from laypeople, fishermen, communities, state authorities reinstated the immense potency of people working together towards something good. It also brought to the forefront the need for palliative care services to be integrated into disaster management, where already vulnerable families are left on the brink of complete annihilation after a calamity. Our work here is long term and as we write this, efforts to restore some semblance of wellbeing to illness-ravaged families in the aftermath of the flood are still ongoing in full swing.
We moved house. Again! We were previously located in a rented building in the middle of the city. Dr. Thaha (Founder of PMS Dental College at Vattappara) very generously offered us a whole floor free of cost, allowing us to save on rent, and we are now about 25 kilometers from the city centre, at VP XIII/80, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram-695028. Thank you, Dr Thaha!
New relationships have been forged across India, and efforts were made across 24 states and 4 Union Territories, of which we now have collaborative work happening in 18 States and 2 Union Territories. More than 50 sensitization programs, Continuous Medical Education (CME) and Continuous Nursing Education (CNE) sessions were conducted through various projects under our flagship.
Four years after the NDPS Act was amended, we continue to conduct Opioid Availability Workshops in a bid to raise awareness and educate stakeholders about access to and the balanced use of opioids. 4 such workshops took place in 2018 in Wardha, Patna, Lucknow and Aizawl in Mizoram with the relevant government officials in attendance.
International collaborations remain a cornerstone in the palliative care community. Our colleagues from other countries have, as always, been committed to assisting us in bringing quality education to our country. 25 workshops were conducted by international faculty in 2018, including Dr. Robert Twycross in Guwahati & Shillong, Ms. Gilly Burn in Shillong, Pondicherry, Ahemdabad, Anand, Surat, Wardha and Nagpur, Dr. Odette Spruijit & Ms. Mary Duffy twice in Patna, Dr. Christine Drummond & Maite Urbite in Agartala.
The depth and scope of palliative care lends itself beautifully to alliances across spheres, and we are so proud to have built a new bridge via a Ten-day foundation training conducted in Silchar, Assam for the para military forces of Assam Rifles under the NEAAC project – North Eastern Alliance Against Cancer.
Under the National program for Palliative Care, and in collaboration with the National Health Mission, doctors and nurses were trained in Uttar Pradesh, Himachal Pradesh, Tripura, Mizoram.
This year we also ventured with more focus into the arena of gender inequity in healthcare. 80% of caregivers globally are women. In our own country, women tend to access healthcare services far less frequently than men, and when they do, oftentimes they are denied appropriate care. With invaluable assistance from FOMAA (Federation of Malayalees Association of Americas), we are now reaching out to these marginalized women with care and opportunities. We organized a one-day workshop – ‘Samarppanam 2018’ on 1st December 2018 where women caregivers had an opportunity to speak openly about their challenges and participate in planning activities. A documentary, “Support – a different story” was filmed to showcase this issue.
With support from Mobility International USA’s (MIUSA) Women’s Institute on Leadership and Disability (WILD), we embarked on yet another new and vital journey – a project to empower women in health crisis. A one-day workshop was organized on the 15th of December 2018 to empower women with disabilities, one of the most marginalized communities. Here we talked and learned about Rights of Persons with Disabilities (RPwD) Act 2016 of India, and women’s rights in general with particular focus on sexual and reproductive health. 19 women with different types of disabilities attended the workshop which created a unique opportunity for them to interact to each other and learn from each other.
The ethic of Autonomy means so much more than the right to self-determination. We as civil society need to create avenues where self-determination can be made possible. The old, rather outdated adage goes that women wait to be rescued by a prince who slays monsters. The new reality is that all we have to do is hand her the right weapons that she may slay them herself. When we empower our women, we empower whole communities.
In very heartening international news, more than a 100 countries were involved in the Astana Declaration from the World Health Organisation, where palliative care was recognized as an essential part of Universal Health Coverage. The Astana Declaration asks healthcare systems to involve communities, not only as partners but also handing over some control to them.
Ahead of Universal Health Coverage Day on 12th December 2018, several awareness programs and a press meet took place, followed by one major event on 11th December 2018 in collaboration with the Govt Medical College, Trivandrum. Two luminaries – Shri Keshav Desiraju, the former principal health secretary of Govt of India and the architect of the National Program for Palliative Care(NPPC) and Shri S M Vijayanand, former Chief Secretary of Kerala Govt chaired the panel discussions and audience interaction. Mr Rajeev Sadanandan, Additional Chief Secretary & head of executive of health department in Kerala gave the key note address.
A break from normal activities saw the film ‘Hippocratic – 18 Experiments in Gently Shaking the World’ go on tour across many cities in Australia, Canada, USA, U.K, South Africa & Uganda.
The creation of Mike and Sue Hill of Moonshine Agency, Australia, ‘Hippocratic’ was a project they embarked on after travelling the world and meeting palliative care experts in every corner. When they expressed their wish to make a full-length feature based on the narrative of Dr. Raj, we felt both grateful and privileged. Within India, as a part of the awareness campaign, the film was screened in 11 cities, creating awareness about palliative care amongst the general public, collaborating with local NGOs and government officials for better accessibility of opioids and palliative care services, and encouraging participation from both medical professionals and volunteers to contribute to building palliative care in communities.
Through this tour we also engaged urban audiences who hitherto were largely unaware of what palliative care truly entailed, or held common misconceptions about it. The film was warmly received and a very happy side effect was a coming together of different palliative care providers in several cities. Palliative care can be a bridge across sectors engaged in humanitarian service. We have so much in common and we are so much stronger together. We hope that this building of bridges continues across spheres in a country that has numerous organisations doing commendable work, but tend to work fragmentally.
We would like to remember all those who made the transition from life into death in 2018, and what they taught us along the way – they have been our greatest teachers.
To the families that have lost loved ones – we stand with you in your continuing grief.
To our partners, contributors and collaborators – our deepest gratitude for walking with us down this often thorny path, along which we intend to sow seeds of hope and compassion.
As we stand at the threshold of a new year, with shining new possibilities, we wish you and yours health in its true sense, courage to be a voice for the voiceless and a light in the darkness.
(This note has been prepared by Pallium India’s trustee, Smriti Rana.)