Lessons in Palliative Care from Pallium India, Trivandrum We are two final year medical students who had the privilege to visit Pallium, Kerala in August, 2012. We wanted to visit due to our shared interest in global health, and our hopes to pursue a career in palliative care (Dan) and geriatrics (Felicity). We had an amazing time in Trivandrum, Kerala, and believe that there is much to be learnt from Pallium India, particularly in the context of ageing populations internationally.
What is the background? Describe what happened in the project Pallium, Kerala is an organisation founded by Dr Rajagopal in 2002 to develop palliative care services throughout India. Pallium cares for 15,000 patients with a wide range of chronic and life-limiting conditions. The organisation has a small office and 4-bedded inpatient unit in Trivandrum’s main Hospital, but provides the majority of its services through outpatient clinics held in public venues such as schools, and weekly home visits by multi-disciplinary teams of clinical staff and local volunteers. [1] Pallium relies completely upon a network of over 12,000 volunteers, and derives 90% of its funding from the local community. The incredible levels of societal support arise from the concept that “chronic and incurable diseases are social problems with medical complications”. After training, volunteers coordinate care in their local community; setting up clinics, identifying and visiting patients, and providing a communication channel between Pallium and patients. In the 10 years since Pallium’s creation the provision of home-based palliative care in the state has increased from 2% to 70%. [2]
What was the impact and what can be learned? Pallium’s work provide many relevant and transferrable lessons. The first is the potential to increase care provision and access to services through mobilisation of community funds and volunteers . Another is the focus on home-based care. The Cicely Saunders institute’s new systematic review suggests that whilst up to 87% of patients would prefer to die at home, in the UK less than 20% of patients do so [3]. Home visits empower the patient, enable staff to gain a holistic view of how the patient and family are coping, and provide an opportunity to educate the family and to assess what other practical support may be needed. The NHS’ End of Life Strategy emphasises the importance of ensuring patients can choose their place of death, and of training health professionals from a range of disciplines, which is also something Pallium also does well [4]. Next, is Pallium’s success using advocacy; the organisation has been very successful in lobbying government and higher body organizations to promote access to morphine and the development and usage of palliative care throughout the country.
Pallium defines palliative care broadly, encompassing not just life-limiting but also significantly life-altering conditions including cancers, neurological illnesses, and mental disorders. This ensured integrated service provision across all chronic disease, and extended the total care promoted by palliative care specialists (encompassing biological, psychological, social and spiritual dimensions) to all patients, and not just those who were likely to die imminently. Pallium provides impressively holistic support which is integrated with social care to provide food security, educational funding and vocational rehabilitation schemes for the most vulnerable families. These help to ensure that illness in one individual doesn’t lead to poverty and social exclusion for the whole family. Finally, this broad service, covering a wide range of conditions with multiple healthcare and social interventions, was tailored for the individual. Pallium worked with each patient to devise an individualised care plan from point of diagnosis. In contrast, in Scotland, 29% of patients die without a care plan in place [2]. Increasingly evidence is emerging showing that integrating palliative care early provides better quality of life, reduces time spent in hospital, is cost effective, and, in some conditions, can lengthen life. Thus in this area, as in many others, Pallium is ahead of its time.
Summary: “Chronic and incurable diseases are social problems with medical complications”. Pallium India is a community-based organisation founded by Dr Rajagopal in 2002 to develop palliative care services throughout India. It provides palliative care for 15,000 patients with a wide range of chronic and lifelimiting conditions. Pallium has many applicable innovations:
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Mobilisation of community resources, organisation and volunteers
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A focus on home-based provision of end-of-life care
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Training of health professionals from a wide range of disciplines
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A strong advocacy approach to implement systemic change
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Integrated service provision across all chronic and terminal conditions
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Holistic provision of both health and social services
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An individualised care plan from point of diagnosis
References: [1] Pallium India’s Website: http://palliumindia.org/about/ [Accessed 24/07/2013] [2] Smith R: A way to provide palliative care globally (25 Jun, 2012) http://blogs.bmj.com/bmj/2012/06/25/richard-smith-a-way-to-provide-palliative-care-globally/ [Accessed 24/07/2013] [3] Gomes B, Calanzani N, Gysels M, Hall S, Higginson I: Heterogeneity and changes in preferences for dying at home: a
systematic review BMC Palliative Care 2013, 12:7 [4] NHS and Department of Health: End of Life Care Strategy - Promoting high quality care for all adults at the end of life (2008) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf [Accessed 24/07/2013]