About the Authors:
Dr. Vinutha Raman is a Senior Manager and a Palliative Care physician at SVYM.
Dr. Kumar G S is a Consultant Paediatrician at the Vivekananda Memorial Hospital, Saragur & the CEO of SVYM.
Dr. Sridevi Seetharam is a Volunteering Doctor at the Palliative Care Program, SVYM.
Dr. Seetharam M R is a Consultant Orthopedician at the Vivekananda Memorial Hospital, Saragur.
Dr. Dennis C Chauhan is a Public Health Specialist at SVYM.
Tribal communities in India have far worse health indicators than the general population, particularly among forest-based and indigenous communities. Several challenges like limited awareness, poverty, socio-economic-cultural practices, poor access and availability of services due to geographic and socio-political challenges etc are major factors for their poorer health outcomes. Palliative care too has remained poorly addressed.
Swami Vivekananda Youth Movement (SVYM), an NGO, has been delivering Health Care Services to marginalised tribal communities in southern Karnataka for over 3 decades. In the initial years, SVYM focussed on Maternal & Child Health and Communicable diseases. With time, issues inherent to chronic and non-communicable diseases emerged, including need for palliative care services. Presently, SVYM offers promotive, preventive, curative, rehabilitative and palliative care services, delivered through a combination of home, community and institution-based services. A network of grass root health workers, the Mobile Health Unit (MHU) and the NGO’s Secondary Care Hospital, in partnership with the Government Health System, together ensure continuum of care.
Several experiences and challenges guided the design of such a comprehensive model, which addresses the wider socio-economic and political determinants of health. The palliative care services are integrated into the overall package and not delivered in isolation. The entire care delivery incorporates principles of palliative care, emphasising early detection and management of symptoms, quality of life and rehabilitation for chronic and incurable illnesses. The services are supported by a certified Palliative Care Physician and specially trained Palliative Care nurses, counsellor and health workers attached to SVYM’s Palliative Care Program.
The spectrum of illnesses needing palliative care are mostly non-cancerous and include – Chronic leg ulcers due to Thromboangiitis obliterans (TAO), Sickle cell disease, Diabetes; Alcoholic and non-alcoholic Chronic Liver Disease, Chronic Heart Failure, Advanced Lung Disease, Spinal injuries resulting in Paraplegia etc. This observation emphasised the need to remodel a typically cancer-centric palliative care model to a broader approach which includes foot care, prostheses, nutrition, physical and psychosocial rehabilitation besides pain management, nursing care, bed sore management, bladder care etc. Counselling services were strengthened for a care-oriented approach rather than a cure-oriented approach.
Facilitating access to social entitlements, creating livelihood opportunities with residual faculties and managing economic crises due to life-limiting catastrophic illnesses is also an integral part of the palliative care services.
Some unique challenges have also been faced. The physical and emotional demonstration of their suffering from pain is often obtunded by their stoic nature. Near-total pain tolerance exhibited by a tribal, who was severely injured in a wild-boar attack reiterated how challenging pain assessment could be. While it provided scope for limiting medicalized pain management, it also provided scope for a more thorough assessment of ‘Total’ pain, hidden suffering and offered encouragement of expression of pain and seeking of help.
The need for palliative care is first recognized, either during the visit of the MHU or health worker to hamlets or during a hospital visit by the patient. The follow-up is through home visits or MHU or by a referral to a nearby healthcare facility. Patients don’t feel abandoned and continue to receive care. They are asked to travel to the main hospital, 30-60 kms away, only when essential. Especially in terminally illnesses, this approach reduced the burden on the already meagre family resources.
In severe illness, the tribals tend to avoid heroic attempts at saving life and prefer to take their patient back to their hamlet to die at home in the midst of family. The medical team is alert to not miss out on treatable conditions and
offers substantial support to continue treatment when cure is possible. When futility is recognized, the family is counselled and supported to return home if they wish.
Many of the families, likely due to their proximity to nature, accept death as a part of life. On a moving occasion, a grandmother was seen comforting the distraught doctor who could not save her grandchild. It is not to say that they are not anguished, but their grief is more silent and accepted with equanimity. When a patient dies in the hospital, the health workers take a forefront role in making arrangements to transfer the body to their hamlets to perform the last rites. They support the family during bereavement and facilitate access to social entitlements.
SVYM’s palliative care services have therefore constantly evolved over time to respect the cultural context, the emerging needs and the medical evidence.
 Report of Executive Committee on Tribal Health, 2018, Published by Ministry of Health & Family Welfare, Government of India, New Delhi https://nhm.gov.in/index1.php?lang=1&level=1&sublinkid=1110&lid=630