Who Decides for Whom? A Reflection on Urban Biases in Planning Rural Programmes

Palliative care can be considered as the most basic expression of compassion. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO nd). It recognises palliative care as an essential component of comprehensive cancer and AIDS care. To me, palliative care consists in relieving patients of pain and other distressing symptoms during any phase of treatment, curative or otherwise.

The Lancet Oncology, in November 2012, observed that in most countries palliative care has been integrated first as part of oncology care, before being extended to patients with non-cancer diagnoses (Payne et al 2012). This resonates with the shift over time witnessed at several not-for-profit organisations working on palliative care that I have visited in India. However, the experience of reviewing and setting up palliative care services managed by different not-for-profit organisations in metro and tier-2 cities left me curious about the unmet need for palliative care in rural/tribal areas. Further, while non-communicable diseases (NCDs) contribute to 52% of the total disease burden and 60% of all deaths (that is, 5.87 million deaths annually) in India (WHO 2014), they are fast spreading into rural/tribal settings, causing a triple burden of disease that is too fast with which to cope.

A suitable location to study the rural/tribal situation presented itself in Gudalur and Pandalur talukas of the Nilgiris district, Tamil Nadu through the Association for Health Welfare in the Nilgiris (ASHWINI), a non-governmental organisation (NGO) working with four particularly vulnerable tribal groups (PVTGs) in the region for the past 25 years. The community health programme was started in 1987, with a community-owned hospital having been set up in 1991. Over the years, Gudalur Adivasi Hospital has developed into a 60-bedded facility that provides advanced medical services to about 20,000 tribals from 326 hamlets, as well as to poor non-tribals in the vicinity. Healthcare services are provided through a three-tiered structure with the hospital at the apex, two health animators at each of the eight area centres—so located as to cover a group of hamlets and cater to a population of 1,600 to 5,000—and village health guides (volunteers) for every 2–3 hamlets.

The health animators at each area centre are tribals themselves, selected from the community and trained in various healthcare practices. Building on the in-depth knowledge of and acceptance by the tribals amongst whom they live, they have been taught to design village-level micro health plans most suited to field realities. Hence, a survey form was created to understand the requirement for palliative care among the tribals, with this cadre of health animators in mind as respondents. It was planned that the data on disease burden and the corresponding nature of palliation required was to be collected for three broad categories: (i) cancer; (ii) non-cancer, for example, stroke, end-stage organ failure, hemiplegia/paraplegia/bedridden, accidents/injuries/fractures, etc; and (iii) geriatric conditions. However, the survey tool proved to be rather cumbersome to administer. What emerged as eminently more practical was allowing the health animators to dictate a list of persons in their area centre who they felt could benefit from palliative care services. Justification for such a classification was provided in the form of briefs on each patient’s condition. 

The results that emerged were quite unlike the scenario I was used to in urban areas. The burden of cancer, which dominates the pain relief requirement in city-based services, was less than 5%. Further, approximately half the cancer cases were of the oesophagus, wherein patients are unable to swallow food and gradually enter a state of ketosis, post which they are unable to feel pain and merely slip into death. I also did visit the homes of cancer patients who desperately needed pain relief, who had reached the end stages due to the inability to put together sufficient funds for a chemotherapy session at the stipulated time, and who kept family and neighbours awake at night with their screams of pain.

More than half (56.5%) the stated requirement in the villages was actually geriatric in nature: physical frailties and mental impairments related to old age. Stroke (cerebrovascular accident) victims formed a significantly large (9%) portion of the need too, while cases of hemiplegia/paraplegia/bedridden state due to other causes were much smaller in number. Being a forested area, goring by wild animals, like elephants, bears, or boars, resulted in immediate death in most cases. The other significant groups requiring palliation were cases of heart (3.8%) or lung (3.2%) diseases.

Focusing on Sickle Cell Disease

However, nothing I had heard during interviews (with beneficiaries of other palliative care programmes or subject specialists based in cities) prepared me for what proved to be the single largest unmet need for immediate pain relief in this tribal community: sickle cell disease (16.5%). Sickle cell disease (SCD) is a common genetic disorder characterised by the presence of abnormal haemoglobin in the red blood cells, causing them to become rigid and crescent-shaped (sickled). When large numbers of sickled red blood cells collect, they hinder blood flow, which results in acute painful vaso-occlusive episodes (sickle cell crises). Such episodes are unpredictable in terms of frequency, intensity, affected sites, and duration of pain, lasting an average of 4–5 days, with protracted episodes lasting up to three weeks. Episodic (acute) SCD pain occurs more often in children, as early as 6–12 months, and affects the quality and quantity of sleep. Persistent SCD pain is more common in adolescents and adults, resulting from avascular necrosis due to poor blood oxygenation causing chronic pain in limbs and joints, poor circulation leading to chronic leg ulcers, and vertebral collapse leading to chronic back pain (WHO 2012: Section 1.3.3). Treatment options of repeated blood transfusions or bone marrow transplantation result in economic pain and drain. Interference with the individual’s intellectual pursuits and societal activities leads to social pain. Finally, realisation of the hereditary nature of the disorder inflicts deep spiritual pain, and breeds a sense of guilt in the parents.

Yet, this painful condition is barely spoken about in healthcare-planning circles. Being a genetic disorder, SCD gets assigned a caste connotation, since marriages in India are largely consanguineous. However, ailments like thalassemia, occurring in upper-caste communities, receive greater visibility and funds for treatment, while SCD, more prevalent among Dalits and tribals, is ignored as a marginalised people’s disease. The Government of Maharashtra is, perhaps, the only state government to have shown keen interest in systematically caring for persons afflicted with SCD under the National Health Mission (GoM nd). Protocols for management of SCD are currently derived from resource-rich countries with adequate facilities, while those from comparably resource-poor countries like Nigeria (Adewoyin 2015) are yet to be appropriately researched and adapted for India.

Undoubtedly, the basis for any successful community intervention is the buy-in from the community itself, which can only be formed by building a relationship with the said community and identifying their unaddressed needs and priorities. Yet, urban planners, no matter how well-intentioned, often remain oblivious to these contextual nuances. It is ironic that tribals from the Nilgiris should point out the absence of SCD in my palliative care needs assessment tool, since it was there that sickle haemoglobin was first detected by H Lehman and M Cutbush in 1952 (Kaur et al 2013)!

Acknowledgement

This study was carried out in April 2016, with travel costs being borne by Tata Trusts. I am grateful to the health animators of Association for Health Welfare in the Nilgiris (ASHWINI) for sharing their time and knowledge towards the needs assessment of palliative care in the region, as well as revealing to me my urban biases, albeit inadvertently. I thank Nanda Kumar Menon, Shylaja Devi and Mahantu Yalsangi (ASHWINI, Gudalur) and Abhijit Dam (Koshish, Jharkhand) for their support in carrying out this assessment. I also thank Johnny Oomen (Christian Hospital, Bissamcuttack, Orissa) and Sunil J Parikh (Haematologist, Mumbai) for insightful discussions on sickle cell disease and its management.