India: A peep under the surface of palliative care

Following the learnings and connections we gained from our Jon Baines Palliative care tour to north India in February 2023, it was not a difficult decision to embarkon a palliative care tour of south India in March 2024. We were further induced when we learnt that David Olivere, a social worker and consultant in psychosocial palliative care, was going to be our tour leader once again.

Our tour encompassed visiting two states in southern India from the cultural melting potof Kerala into the ancient land of Tamil Nadu. It interspersed sightseeing experiences with talks, exploring the approach of ayurvedic medicine and liaising with hospital and community hubs providing palliative care. Our tour group comprised a group of diverse palliative care health professionals including five social workers, a nurse educator and nine nurses, two general practitioners, a dentist, a psychotherapist and a death doula. The varying perspectives in our group fostered rich discussions and insights that added a depth to our experiences.

Our visit to the Nagarjuna Ayurvedic Centre soon after we arrived in Cochin highlighted the adjunctive role ayurvedic medicine can play alongside modern medical palliative approaches. Ayurvedic medicine is an acknowledged medical approach that originated and has been practiced in India for the past several thousand years. While ayurvedic treatment has a unique perspective of offering natural remedies and focuses on restoring the body’s equilibrium, it shares with palliative care a common goal of enhancing the quality of life for palliative patients.  

Our visit to this centre was followed soon after by the hospitality and information sharing we received at “Signature Care” in Kerala. It is a privately operated Hospice, Rehabilitation and Geriatric Service with a focus on providing TLC (tender loving care) and comfort to patients. Underpinning the predominantly nurse driven support is the services mission of “Honouring Life, Offering Hope”.

The relevance of context, policy, geographical location and legislation became apparent as we explored the contrasting palliative care services and were privileged to hear  the inspiring talk by Dr Saif Mohammed, Faculty Member of the Institute of Palliative Medicine in Calicut. His passion was clear as he spoke about the community care dynamics that his organisation fosters. David Oliviere provided some invaluable insights from his vast experience and knowledge of India when he presented “Stories of Palliative Care in India and International Palliative Care Experiences”, including some of the ethical dilemmas he had encountered.

From Cochin, our next stop was at Trivandrum where we had the unique experience of spending two days with Pallium India. Our visit to the Trivandrum Institute ofPalliative Sciences will remain strongly etched in my memory. The inclusion of our group members in the community team’s home visits, provided invaluable insights into the issues facing patients and their families ‘on the ground’. The following day, Dr Rajagopal, Chairman Emeritus of Pallium India spoke aboutthe community having to be part of the organisation’s work “to create wonders” and this was evident in our visits. While the level of poverty was confronting, we also witnessed ‘hope’ and a sense of connectedness during our visits. In areas where there was such physical deprivation, we observed people moving through their lives with unwavering strength, faith and joy.

It was inspiring to witness the psychosocial and medical support facilitated by the professionals who work for Pallium India and also the mobilisation of support from within their community with the strong presence of family and neighbours.

We were deeply appreciative of the consideration and planning put into the second day we spent with Pallium India during which several speakers explained theirvarious roles within the organisation. We learnt of the institute’s collaboration with WHO and its role in facilitating research and education as well as expanding their clinical services. We were privileged to be addressed by Dr Rajagopal who spoke so inspirationally and with much humility on how he founded and developed the organisation. The holistic and “bottoms up” community approach he spoke of was witnessed during our home visits the previous day. A number of us were so motivated by his talk that we felt compelled to further our knowledge about his experiences by purchasing his book “A Walk with the Weary”.

Ashla Rani, a worker with the organisation, was a speaker that day who spoke movingly about her spinal injury damage resulting from a fall from a train. Her transparency about her experience was impactful. When asked about her coping strategies for managing her physical limitations, her reply was “there is still hope and we just have to hold on to that”.

Another inpiring visit was to Dr Mohan’s busy inpatient unit in Tiruchirappalli where most services are delivered to patients at no cost. Dr Mohan’s delivery of palliative care is influenced by the completion of courses he has completed in countries such as Australia and Singapore. Indeed, he had been the student of our tour leader David Oliviere at St Christopher’s Hospice in London.

Our warm greeting at the Aarupadai Veedu Medical College and Hospital in Pondicherry included mutual introductions and an informative presentation and tour highlighting the centre’s model of palliative interventions and plans for the future. Beneficial discussions and mutual exchanges and learning between the two parties followed.

Our exposure to a varying range of palliative services during our 14 days of travelling left us with an excellent overview of the realities of providing palliative care in India. The many challenges facing palliative care practitioners speak loudly, yet underneath the material poverty and limited resources, we witnessed grace and fortitude. Our time in India was an unforgettable adventure that has forced us to be introspective as we contemplate the different social and political contexts. It will have an everlasting impact as we continue to turn inward to reflect on ourperspective and practice. Several group members have expressed a wish to return to India to support developing services in some way.

We share one of our group’s own perspectives on ‘India’ on the morning we left the palliative care colleagues who had given us so much time, care, and hospitality plus the many unforgettable tourist visits we had made, the exchanges and laughter of an amazing tour group and bade farewell to the sights, sounds and colours of India.

India ❤ What an adventure! An abundance of beauty exists within this crazy, less than perfect metropolis. Amidst the chaos I found calm. Amongst the poverty I experienced generosity. Within the diverse population I observed harmony and kindness. In a place where some things make no sense (to me) and contradictions rule, humans move through their lives with unwavering strength, compassion, faith and joy and are always quick to greet you with a smile. New friends have been made, new knowledge has been gained. This place forces one to turn inward, to face one's discomfort and to reflect on personal perspectives, beliefs and judgements. Growth is inevitable and I feel more gratitude than ever before. Tracy Duggan, Palliative Care & ICU Nurse, Australia

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To find out more about Jon Baines Tours Palliative Care Study Tours please visit www.jonbainestours.com

 JBT forthcoming Palliative Care Study Tours include :

Chronic Disease Management and Palliative Study Tour in the Northern Territory
25 August – 1 September 2024
Led by Shyla Mills

Explore the beautiful landscapes of the Northern Territory as you learn about the history and practice of chronic disease management and palliative care in the region. The itinerary looks at both traditional and contemporary approaches to palliative and end of life care.

Palliative and End of Life Care in Nepal
‍24 March – 4 April 2025
Led by Shyla and Jason Mills

This tour explores the development of palliative care in Nepal, alongside its traditional and spiritual support structures, with professional visits to organisations such as Hospice Nepal, who are key to filling the gap in palliative care, particularly in rural areas.

‍To receive further details, please contact Jon Baines Tours on +44 (0) 207 223 5618 / +61 (0) 3 9343 6367 or info@jonbainestours.co.uk