In 2022 the world continued to adapt itself to a new reality. Uncertainty that took seed in the preceding two years accompanied us all, like a constant low hum in the background. It called on us to innovate, pivot and cut new paths.
At the threshold of a brand new year, we look back on the year gone by, to reflect and give thanks.
Our team continued to work to holistically weave palliative care into the larger tapestry of health care, through our “Demonstrate, Educate, Facilitate” approach.
“Be the change you want to see in the world”
At our home base in Trivandrum, between January 1st and December 15th 2022 we provided 79,363 service interventions to 4662 individual patients, with additional support to their families.
We set up a brand new Hospital Management System and digitised all our medical records, enabling us to work smarter and with more efficiency.
The helpline that was launched as a response to the drastically cut access to palliative care during the first two waves of Covid, grew into a full-fledged Telehealth service through which we extended support to patients from 20 states and 2 Union Territories in 2022.
We expanded our Children’s Palliative Care Program. We now reach more children weekly through a half day out-patient clinic at our facility on Saturdays that complements the full day Thursday clinic at the Government Medical College Hospital. We are grateful to Dr. Gayatri Palat and her team at the Paediatric Department, MNJ Institute of Oncology & Regional Cancer Centre, Hyderabad that hosted our childrens palliative care team for a 5 day long observership.
Lack of access to, or the cost of physiotherapy services often compounds serious health-related suffering for people living with cancer, strokes, paraplegia, muscular dystrophies, chronic breathlessness, frailty and a host of other issues. To bridge this abyss, we launched a Community Physiotherapy program where physiotherapists are identified from within the community and are trained to provide home care. The success of the pilot program at one link centre quickly led to scaling this program to 3 more. The addition of a part-time physiatrist to our team increased our capacity to provide improved quality of care to our patients with neurological disorders via 3 physiatry team visits each week.
In an effort to integrate palliative care with neurology, we collaborated with the Neurology Department at Medical College Hospital and started a joint Stroke-rehabilitation OPD on the first Wednesday of every month.
The entire clinical team at Pallium India was trained in geriatric care. We extend our gratitude to faculty from Kasturba Medical College (KMC) Manipal who provided this training through multiple online sessions and to the Department of Geriatrics, Amrita Institute of Medical Sciences, Kochi that supplemented this training in-person for a core team that included a doctor, nurse, physiotherapist and medical social worker.
For early identification of new patient, improved community engagement and to minimise the loss of time for logistics, we identified nurses, and trained and posted them in their community. This programme was started at one link centre in April 2022 and extended to another centre by August.
Referrals to palliative care are poor in India and trying to find centres can be very difficult for families that are already struggling with the illness of a loved one. Bearing this in mind, we updated our website directory with essential details about specialization, availability of morphine and type of services available.
“The mind is not a vessel to be filled but a fire to be kindled.”
We made significant progress in training and education in 2022. Within Pallium India, we set up our own Learning Management System, based on the MOOC (Massive Open Online Course) framework and allows anyone interested in learning about palliative care to access it.
We were delighted to re-open our doors once again to welcome trainees from across India for in-person courses. We hosted 20 trainees for the Certificate Course in Pain & Palliative Medicine, 5 for the Foundation Course in Pain & Palliative Medicine and 16 for the Certificate Course in Palliative Nursing.
We trained 1156 participants through 32 virtual programs. These include 452 Doctors in addition to 18 Oncologists and 40 Pulmonologists, 204 Nurses, 90 Allied health care providers, 32 Physiotherapists and 320 volunteers.
Faculty from India and abroad came together to share Indian and Global perspectives across topics ranging from symptom control and clinical practices to advocacy for our Refresher Course in Palliative Medicine, which was attended by 40 palliative care physicians.
In a valuable step forward in integration, we teamed up with respiratory medicine physicians who are champions for palliative care to deliver to two milestone programs – the Essentials of Palliative Medicine for Pulmonologists and a Respiratory Master-class for Palliative Care Physicians.
We also conducted The Essentials of Palliative Care for Physiotherapists, special sessions on grief management and 7 volunteer training programs in a bid to empower laypersons in the community to participate in the delivery of palliative care at the community level.
Pursuant to the inclusion of elements of pain management, end of life care, attitude, ethics and communication into the undergraduate medical curriculum in 2019, we trained 110 faculty members from 36 government medical colleges and 28 private medical colleges in order to empower them to teach these integrated modules. We hope that this has a cascading ripple effect and that these elements of palliative care are soon taught in every medical college.
Our long-standing partners ECHO (Extensions for Community Healthcare Outcomes) and the APLI (Australasian Palliative Link International) came together with us to launch the ECHO Hamrahi-virtual education training program. It seeks to create an alliance of palliative care centres for knowledge dissemination and practices for better patient management at individual sites. The partnership involves knowledge exchange and mentorship by experts from India and Australia.
“All advocacy at its core, is an exercise in empathy”
Our patients and their carers are our greatest teachers. As we learn from our experience on the ground, we strive to share this knowledge forward in order to catalyse change for the betterment of those we serve. Access to pain relief is one of the topmost priorities.
Post-covid, we were able to conduct our first onsite Opioid Availability Workshop with the Drug Controller and the Association of Chemists & Pharmacies in Pondicherry. It resulted in the issuance of 8 Recognised Medical Institution (RMI) licences by the State Drug Controller. A similar workshop followed in Tirupati, also robustly supported by state authorities.
Virtual Opioid Availability Workshops were conducted with the states of Jharkhand, Maharashtra, Punjab and Rajasthan. We were able to work with the State of Punjab to reduce the checklist items for applying for RMIs – a breakthrough in a state that historically has faced access issues because of an ongoing crisis of misuse. We received a Government Order to be the technical partners to work for National Program for Palliative Care implementation in the states of Uttarakhand & Haryana.
We were granted Consultative Status (Special Category) with the United Nations Economic and Social Council (ECOSOC). We are honoured to join the International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Hospice Palliative Care Alliance (WHPCA) who already have Consultative Status with ECOSOC. Pallium India is committed to using this valuable status to continue advocating for equitable, comprehensive and compassionate palliative care delivery, and access to opioids for pain relief, especially for the Global South.
Arundhathi Roy once wrote – “There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.” We strive to amplify the voice of the most vulnerable from countries that remain marginalised at decision making fora. To this end, we had the opportunity to represent civil society perspectives from the Global South at several different events hosted by the Vienna NGO Committee, the United Nations Office on Drug and Crime and the World Health Organization (WHO) in 2022.
We were delighted to be among three institutions that won this year’s International Association for Hospice and Palliative Care (IAHPC) Institutional Recognition Awards, which celebrate institutions dedicated to developing and providing palliative care to improve the quality of life of patients with serious health related suffering.
We cherish our relationships with institutions overseas that work with us to foster equitable access to palliative care. We thank our partners at Queens University, Canada, who teamed up with us to help us launch a Global Fellowship in Palliative Medicine.
Members of our team were keynote speakers at the Pacific North-West Palliative Care conference and the Canadian Undergraduate Conference on Healthcare, and were also presenters at ongoing education programs hosted by the Memorial Sloan Kettering Cancer Centre and Dartmouth University’s Global Health Department.
Our Chairman was one of 27 experts from various fields around the world that came together under the Lancet Commission and published the “Value of Death” Report. It evaluates of how people die in the modern world and calls on healthcare systems, governments, civil society organisations to confront the current status of end-of-life care and turn it around to something that brings back the involvement of the community.
As we embark on this new year, as always we would like to acknowledge the support and friendship of all our partners and collaborators. We would like to thank the consistent loyalty of donors – including those who wish to remain anonymous – for supporting us even when times were tough for them. The generous contributions of our supporters enabled us to remain financially resilient and invest in the future stability of our programs and increase our reach and impact.
Through this year of rebuilding and recovery, we were accompanied by people who inspired us to do more, ignited our imagination and fuelled our passion.
We honour those for whom this was the last year.
We stand ready to serve those we are yet to encounter.
We continue to walk the thousand paths home with all currently in our care.
Happy 2023 to you and yours.
From all of us at Pallium India.
(Prepared by Smriti Rana, Head – Strategic Programmes and Partnerships, Pallium India, with inputs from the entire team.)