2023, by all accounts, has been a significant year. For many it has tested personal boundaries and capacity. For others it has brought tremendous change.
Humanity as a whole is being forced to contend with some big, not-so-pleasant questions, and adapt to new realities. We are witnessing events that will, without doubt, alter the course of our collective existence.
Amidst the chaos and pain afflicting the world, we would do well to remember that we can affect change within our own spheres of influence. And no matter how small, every drop of kindness adds to a Kinder Sea.
We take a brief pause here, to reflect on this past year. To measure the distance travelled. To acknowledge our fellow-travellers. To take a breath before we begin our next trip around the sun.
In this moderately long read, we share with you some highlights of Pallium India’s journey in 2023.
“Service is what prayer looks like when it gets up off its knees and walks around in the world.”
– Michael J. Graham, S.J.
From our demonstration site in Trivandrum (TIPS), as of November 30th, we have cared for 5346 individual patients this year, with a total of 75,112 services provided.
We launched a new Evening Special Home Care service, available between 2PM and 8PM, to attend to emergency requirements of patients registered with us. We cared for 138 patients in 76 days through this service.
Integration of palliative care with other medical specialties is a building block of larger healthcare integration. To this end, we initiated a Palliative Care Open Programme at Pulayanarkottah Chest Disease Hospital, Thiruvananthapuram, in November. This outpatient programme serves people with respiratory problems twice a month.
Our paediatric palliative care team hosted a well-attended international conference, bringing together attendees and speakers from India, Timor Leste, Singapore, Philippines and Nepal. The conference highlighted the need for awareness about paediatric palliative care, psychosocial interventions, interdisciplinary collaboration, pain management and supportive care for patients and their families.
“There is no power for change greater than a community discovering what it cares about.” – Margaret J. Wheatley
Holding true to this year’s World Hospice and Palliative Care Day theme of ‘Creating Compassionate Communities’, our team renewed its focus on empowering communities to participate in care delivery.
We held 10 training programs across 4 districts, in collaboration with local panchayats, religious groups and a government hospital.
Pallium India were the official partners with the National Service Scheme (NSS) cell of the Vocational Higher Secondary Education Directorate. In this capacity, Pallium India in association with the Kerala Chapter of Indian Association of Palliative Care, coordinated awareness programs in 341 schools in Kerala, in a span of 7 days.
On October 2nd, Gandhi Jayanthi, we organised the Students Initiative in Palliative Care (SIPC) Day, which saw 15 colleges and over 150 students participating in the one day event hosted in Trivandrum. Students presented the inspirational work they were doing for the underprivileged with life limiting illnesses.
On October 14th, World Hospice and Palliative Care Day was hosted at the Institute of Hotel Management and Catering Technology, Trivandrum. We witnessed the magic that enthusiastic youth can bring. Over 700 people were hosted by students of the institute. The students did all of the cooking and serving themselves, including feeding the patients and escorting those with disabilities to the lavatory.
As part of Pallium India’s endeavour to further engage with the community, a squad of 6 social officers and a doctor visited Malappuram, famous for the Neighbourhood Networks in Palliative Care (NNPC), and IPM, Calicut, the WHO Collaborating Centre for Community Participation in Palliative Care. Learnings from here are already finding its way into policy and action for us, which will be implemented further in 2024.
5 quality improvement projects were submitted and selected for the prestigious Stanford-NCG EQUIP (Enable Quality Improve Patient Care) Program.
Most private hospitals lack access to palliative care services. This is a major gap in our country. We are very pleased to share that a partnership with PRS Hospital, Trivandrum enabled a senior palliative care physician from our team to be stationed at the hospital, resulting in referrals from 10 major departments, and 140 patients receiving palliative care. Other avenues of collaboration are underway.
“Live as if you were to die tomorrow; learn as if you were to live forever.”– Mahatma Gandhi.
Education is one of the key pathways to integrate palliative care with mainstream healthcare. Our academic and upskilling programs provide various levels of training, imparted through different modalities.
This year we trained a total of 1108 physicians, nurses, and allied health workers, in palliative care. We launched our first ever Global Fellowship program that was attended by 26 fellows from 7 states of India and 4 other countries.
Elements of pain relief, palliative care and end of life care were introduced to the Indian medical undergraduate curriculum in 2019. As a new aspect of medical education, capacity building amongst trainers is essential. We trained 188 faculty across 107 medical institutions in India.
As per the Indian Nursing Council framework, we held two-day workshops for 343 nursing students in 4 colleges.
We conducted a 10-day Foundation training in Palliative care in Guntur, in collaboration with the National Health Mission of Andhra Pradesh, for their doctors, nurses and physiotherapists from government district hospitals. 30 counsellors from APSACS (Andhra Pradesh State AIDS Control Society) were trained through our online program. We also conducted online training for the doctors and nurses of Haryana district hospitals and then got them hands-on training at PGI and Chandigarh Hospice.
Joining hands with the National Health System Resource Centre (NHSRC), we conducted online and in-person training for Community Health Officers in Uttarakhand, Assam and Ladakh.
Another Ten-day Foundation Training in Palliative Care was conducted for the doctors and nurses of Liver Foundation, an NGO in Kolkata, West Bengal working to bring enhanced care for people with liver diseases.
We began an initiative to integrate palliative care with Multi Drug-resistant Tuberculosis care.
We introduced the self-directed Essentials of Palliative Care – India (EPCI) programme and the hybrid Integrated Basic and Advanced course in Palliative Medicine (ICPM).
Virtual education has been an essential mode of training, especially through and after the pandemic. Our collaboration with Extension for Community Healthcare Outcome (ECHO) of Albuquerque, New Mexico and ECHO India have enabled us to train approximately 4000 people since the partnership commenced. We were delighted to receive the ECHO excellence award of 2023.
This year, we had the honour of signing a Memorandum of Understanding (MoU) with Dr. MGR Medical University, Tamil Nadu to carry out research in end of life care.
“If you want to go fast, go alone. If you want to go far, go together.” – African proverb
This year birthed the Clinical Implementation Team (CIT) programme. The CIT, consisting of a social worker, nurse and a senior palliative care physician, support palliative care teams in locations across India through a process of clinical hand-holding and framework development. So far, the CIT has spent five-days at the Akkara Foundation in Kasarcode in July, a month at the Baptist Christian Hospital in Tezpur, Assam in September, and 3 weeks in West Bengal in December.
In 2023, Pallium India reached 49,857 new patients through our partners across the country. We catalyzed or enhanced 73 new palliative care centers – 39 in the private sector and 34 through collaboration with National Health Mission and other government hospitals.
The commitment to raising awareness is evident through the execution of 114 impactful programs. Capacity-building initiatives have successfully trained approximately 57 organizations. We collaborated with three community led initiatives to deliver palliative care services in their localities in Tamil Nadu, West Bengal and Punjab. We collaborated with the stakeholders in the state of Maharashtra and created a network of volunteers to support patients needing palliative care in different areas.
We are grateful for the continued relationship with Dr. Gilly Burn, who has been at the forefront of raising awareness about the importance of palliative care from its inception in India. Accompanied by our regional facilitators, Dr Burn covered 34 cities in 13 states and 3 Union Territories, covering a distance of 22034 km. This effort engaged 4725 participants from diverse backgrounds in one year.
We are also thankful to Dr. Sudha Royappa, a physician of Indian origin from the US, through whom, we acquired a deeper understanding of the palliative care needs in Tamil Nadu. The initiative covered six cities over 1891 km, including medical colleges, hospitals, and palliative care centres, engaging 1085 participants. The goal was to dispel myths within medical communities and prepare the next generation of healthcare professionals.
In collaboration with The Life Foundation, we successfully distributed Oxygen Concentrators across India, partnering with institutions in Bengaluru, Mumbai, and Kerala. Our team conducted Quality Surveys of the palliative care services at Sher-i-Kashmir institute of Medical Sciences (SKIMS), Srinagar, Romila Palliative Care, Mumbai and Cipla Palliative Care (CPC), Pune.
We signed an MoU with the Government Medical College (GMC), Kollam to integrate palliative care services across all specialties. A weekly Palliative care OP was started at GMC, and our team will continue working together till the GMC’s own services are full-fledged.
We signed another MoU with the National Health Mission of Maharashtra, focusing on starting palliative care clinics, providing knowledge support, ensuring access, and improving the quality of life in the government district hospitals in the state.
“The arc of the moral universe is long, but it bends toward justice.”- Martin Luther King Jr.
It is estimated that approximately one million people in India suffer from moderate to severe pain every year due to advanced cancer. If people with non-advanced cancer, HIV, and a variety of other progressive, incurable or otherwise life-limiting health conditions are included, experts estimate 7 million people in India are experiencing moderate to severe pain at any given time.
We remain dedicated to alleviating unnecessary pain and suffering in our country. Part of this work entails working closely with various central government departments and agencies to track and evaluate morphine access in India.
It also requires changing existing laws to improve access. To this end we submitted suggestions for amendments in the Narcotic Drug and Psychotropic Substances (NDPS) Act of 1985 to the Department of Revenue, Ministry of Finance, with support from 30+ palliative care organizations. We presented our work on the amendments of NDPS 2014 at the annual summit of India Cancer Society and at over 14 national and international conferences, including those organized by the NCD Alliance and the Indian Association of Anaesthetists.
We facilitated the development of a mental health policy for Maharashtra in collaboration with Association For Scientific And Academic Research (ASAR) and are continuing with various research initiatives.
We facilitated 27 Recognized Medical Institutes (RMIs), and access to opioids in government hospitals across 17 states/Union Territories. We conducted 15 opioid accessibility workshops across Ladakh, Meghalaya, Chandigarh, Punjab, Haryana, J&K, Odisha, West Bengal, Nagaland, Goa, UP, Bihar, Himachal Pradesh, Delhi and Chhattisgarh. These workshops were presided over by the respective State Drug Controllers for better implementation of the Narcotic Drugs and Psychotropic Substances Act in order to improve access to pain relief.
We worked with five state National Health Missions (NHM) namely Uttarakhand, Haryana, Andhra Pradesh, Ladakh and Assam, training their medical and para medical staff and working with them in implementing their National Program for Palliative Care (NPPC).
“All progress happens outside the comfort zone.” – Michael John Bobak
On the international front, Pallium India continues to speak up for not just India, but for all Global South countries that experience unacceptable disparity in access to pain relief and palliative care services. We work closely with international partners and agencies to ensure that Low Income and Lower-Middle Income Country contexts are considered when framing guidelines and policies.
We relaunched an updated Morphine Manifesto with inputs from colleagues at the International Association for Hospice and Palliative Care (IAHPC) and Dr. Eric Krakauer (Director of the Global Palliative Care Program at Harvard Medical School). This Manifesto now has endorsements from 57 global, regional and national level bodies and over 100 individuals. It was presented at a UN Commission on Narcotic Drugs side event and calls on governments of all member states to make access to affordable immediate release oral morphine a priority.
Pallium India participated in the South East Asia Regional Palliative Care workshop to improve collaborations between SEAR countries for better palliative care policies and delivery.
We were invited to make two presentations at the 18th World Congress hosted by the European Association for Palliative Care (EAPC) – one on ‘Reframing Palliative Care through a Global South Perspective’, and the other on ‘Loss, Death and Suffering’ as part of a larger discussion on the Value of Death Lancet Commission.
Pallium India is part of a WHO working group on palliative care which was convened to foster information sharing, coordination, and collaboration between WHO departments, regions and partners to better implement WHA Resolution 67.19. (“to integrate evidence-based, cost-effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes.”) and strengthen palliative care in countries.
Home is where the heart is…
Pallium India turned 20 in December, and this birthday was made all the more special because we finally have 1.14 acres of land on which we will build our permanent home.
Binod Hariharan took charge as the Chairman, and Dr. M R Rajagopal took on the role of Chairman Emeritus.
The board of trustees was significantly strengthened by the addition of a few stalwarts, Dr Soumya Swaminathan, Dr Vijayakumar, Dr Rajam Iyer and Dr Vandana Gopikumar.
Our wonderful IT team has been working tirelessly keep us ticking and keep pace with rapidly evolving technology. Data capture and clinical documentation is now completely digital. A brand-new Learning Management System was utilised by our first batch of Global Fellows.
We introduced Danamojo as our payment gateway for Indian and FCRA donors, which allows donors to make recurring donations and receive automated 80G receipts, which was not possible before.
Fleet management systems allowed us to track our vehicles. We now know that the 8 home care teams that travel 5 days every week to visit patients in their homes, covered enough distance in 2023 to equal 4 trips around the earth.
To care for our own team, the clinical team held a well-attended medical camp for all employees and volunteers. This was followed by an eye camp by the Regional Institute of Ophthalmology. Additionally, we held professionally led art therapy sessions for all our team members across a period of one month.
Our Research and Innovation department commenced the Journal Club and Seminar Series, and conducted Good Clinical Practice (GCP) and Bioethics training for ethics committee members and staff of Pallium India. This year, we reconstituted the ethics committee with 11 members, and initiated the Department of Health Research registration.
Our English e-newsletter, with news and updates from the world of palliative care, has around 7400 email subscribers, and our Malayalam print magazine, Sahayatra, is sent by post to approximately 5400 readers across the country.
We extend our heartfelt gratitude to our institutional donors Azim Premji Foundation, CARE & SHARE, Chittilappilly Foundation, Cipla Foundation, ECHO India, Federal Bank, General Motors, IMS Health Solutions , IQVIA, MRF Foundation, Pakhar foundation , QBurst Technologies, Queens University , SADA India, SFS Homes and UST Global. These funds have helped us sustain Pallium India’s major projects.
As always, we are infinitely thankful to individual donors who have unfailingly enabled us over two decades to care for patients and their families.
As we transition into the new year, we would like to offer deep gratitude to all our friends, collaborators, partners and supporters for placing your faith in us.
You have our continuing commitment to alleviate suffering in the world.
We thank every patient and caregiver who has given us the privilege of walking with them.
You have our respect, support, and our hearts, always.
We remember all those who have left us in this last year. We wish them peace.
We stand with loved ones left behind. We wish you fortitude, courage and grace.
May 2024 be a year through which we all breathe hope, stand for justice, remember our shared humanity and be resolute in our compassion.
May we all find ourselves sailing on a kinder sea.
(Prepared by Smriti Rana, Head – Strategic Programs and Partnerships, with inputs from all departments of Pallium India.)