One would generally understand medical professionals to be following a set of ground rules that guide their conduct in daily engagement with patients and their caregivers. A ‘professional’ ethic is seen as providing a strong base for having an ‘objective’ approach while treating diseases, whereby emotions and emotional connections are to be avoided, lest it breaches the boundaries of the normative doctor-patient relationship in such settings. These understandings have found representation in popular culture as well. Movies and television shows alike have tended to carry forward images of such ‘expected behaviour’ being hailed as the foundational principle of the profession itself. An encounter between Boman Irani’s character with novice medical students in one of the scenes from Raju Hirani’s mass medical drama Munnabhai MBBS is telling.
A stark contrast to the above image was visible in our encounter with those engaged in Palliative Care in Kerala. Our research on Kerala’s Community-based Palliative Care Model at the Ernakulam General Hospital (Kochi) brought into light a thorough engagement of doctors with the patients and their families, transcending the mere requirement of technical medical attention. Following Dr G. Mohan - a cardinal developer of the Palliative Care Unit at the General Hospital - through the various wards, we saw a nearly fabled relationship unfold. The doctor and patient interacted with mutual patience, compassion and respect, forming a bond that went beyond the Admission Note. Admittedly, Munnabhai’s ‘jaadu ki jhappi’ pales in comparison.
The tenor is implanted in the grassroots mass movement initiated by Dr M. R. Rajagopal, the father of Palliative Care in India, in the early 1990s. Observing the state of dissipating humanness in hospitals, ignorance towards end-of-life-care and the larger dysfunctional nature of healthcare, he worked to enmesh Palliative Care into traditional healthcare, in letter, spirit and practice. Pallium India, founded by Dr Rajagopal, delineates Palliative Care with respect to, “the quality of life of the patient and the treatment required to maintain as normal and positive a life as possible, irrespective of the number of years of life left and whether or not eventual care is possible”. This holistic nature of care caters to both the individual and their family through an expansive community-based network.
However, this transmogrifying endeavour has been largely confined to Kerala. This limitation is intricately linked with ‘Health’ being under the State List in the Indian Constitution, leading to both disproportionate health initiatives and outcomes. While Kerala was the top-performing state with a composite score of 74.01, in Niti Aayog’s Health Index 2019; Uttar Pradesh occupied the lowest position with a score of 28.61, arresting India’s average at 53.22. Such imbalances have consequently resulted in a heavy burden of disease pervading the country.
In a 2019 research paper pioneered by the Indian Council of Medical Research, a measure known as the ‘National Burden of Estimates’ was constructed to quantify India’s burden of disease. The burden of disease can be understood simply, as the number of healthy lives lost every year - comprising premature death and number of years consumed by disease or disability - referred to as Disability-Adjusted Life Years (DALY). The study found that in 2017 alone, there were 9.7 million deaths and 486 million DALYs. Further, over three-fourths of the DALYs can be attributed to rural India. While 35.7% of all DALYs were caused by communicable, nutritional, maternal and perinatal causes, 46.6% and 50% are caused by non-communicable causes in rural and urban India respectively. While India’s disease burden has decreased significantly over the years, the burden remains to be one of the highest among its economic peers.
It is no coincidence that DALYs share a positive correlation with the quality of the healthcare system. For instance, the WHO reports that even though institutional deliveries have increased from 14% to 80%, maternal and child mortality rates have not demonstrated equivalent improvement because of the “poor quality of care provided at health facilities.” As already seen, maternal and perinatal DALYs along with communicable and nutritional causes is responsible for 35.7% of all DALYs. Hence, a high-quality healthcare system providing holistic care is important to reduce the burden of disease, with the larger goal of improving the wellbeing of all in an equitable manner.
These concerns are also highlighted in Niti Aayog’s roadmap for a ‘New India at 75’ by 2022, which aims to bring about significant changes across sectors, healthcare being one among the others. Here ‘Preventive Healthcare’ is to be integrated within the Public Healthcare System, wherein Palliative Care is taken up as one of the central projects in the expansion of Primary Healthcare. It aims to involve various stakeholders and acquire the character of a ‘people-led movement’ coming from the grassroots and catering to the masses. Hence, a clarion call has been raised to undertake a Jan Andolan in order to doctor the healthcare system in India. These recommendations find semblance in the pre-existing Community-centric Palliative Healthcare model of Kerala - wherein engaging people and expanding Palliative Care as a collective enterprise has been foremost.
The ethos of this lies in the larger Kerala Model of Development, which was a result of decades of social consciousness and public action emerging from the masses, and a responsive state apparatus. Mass movements carried out by students, workers, women among others led to a social change, wherein old hierarchical structures were challenged and progressive measures were seen as providing the language for development. The commitment and initiatives thus came from the people themselves, passionate accounts of which were visible throughout our research.
A commitment towards engaging the community in Palliative Care thus envisioned the volunteers and the larger spirit of volunteerism as its backbone. The General Hospital brings together a diverse group of people - senior citizens, NGOs, charitable organisations, college students, ASHA workers - all essaying integral roles in the system. This nature of care is, however, not bound solely to the patient, the model of Palliative Care ensures social, psychological and financial care to the family and other caregivers as well. A collaboration among sectors makes sure that their extra-medical needs are catered to. Monthly ration, monetary assistance, sharing household concerns, all are part of the larger network that is developed alongside caregiving facilities. The model also lends sufficient autonomy for such actors to render extra-medical care independently. We encountered House of Hope as one such community centre that provides ration, monetary help for important familial events, education counselling among others, to families with members battling a chronic illness.
A selfless dedication towards patients, being empathetic and being part of their journey is embedded within the practice of Palliative Care, the notion and spirit of ‘service’ echoing through and through. The staff, doctors and volunteers at the General Hospital work as a ‘team’, forging ties that surpass the institutionally marked hierarchy. A sense of informality goes hand in hand with recognising and respecting the part played by each and every stakeholder, contributing to a calm and reassuring environment for the patients and their families. Home visits are one of the defining features of this system. A team - comprising a nurse with medical expertise, a volunteer for extra-medical care and a driver belonging to the vicinity - visit the patient periodically. In one of the home visits to a bed-ridden cancer patient, we observed the volunteer had been continuously playing a positive role for the family. Most prominently, they had been counselling the children with respect to sincerely completing their education and discussing potential career directions.
To this effect people’s motivation, persistent engagement and collective zeal brought about a positive social change in the state. Taking inspiration from Kerala’s mass movement - struggle and success, this movement for health must be taken up as a Jan Andolan across the country. It must be known that this model was specific to Kerala, hence, other states must deem it imperative to tend to their local needs and aspirations to accommodate local experiences and disease burden. Commendable steps are already being taken in some states, wherein Palliative Care is part of the state policy, as in the states of Andhra Pradesh, Odisha, Tamil Nadu and Telangana. In others like Himachal Pradesh and Uttar Pradesh, small local initiatives such as training sessions and workshops have been conducted in the last few years. Here too, Dr Rajagopal’s Pallium India has been instrumental in showing the path forward.
With its burgeoning ambitions, India seeks to become an influential power in the changing world politico-economic order. However, the mark of any developed society is the health, education and skills, and productivity of its people. If the State fails its people in health, it cannot expect to succeed on any other account. Substantial investment and a bottom-up policy approach is necessary in ensuring the holistic wellness of the people. In a democracy, people are not mere subjects, but agents of rights, hence, people must lead the way in shaping the discourse on health as a Jan Andolan. A multi-stakeholder approach involving the Central, state and local self-governments, public and private healthcare professionals, NGOs and think tanks is required to fuel the movement and legitimise its democratic character.
Views expressed are solely those of the author. The authors conducted primary research on the subject with a focus on - ‘Volunteerism in the Community-based Palliative Care Model’ as part of their undergraduate degree in Sociology, in Kochi (Kerala), in January 2017.
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About the Authors
Reeya Rao has been India's representative at the 2016 G20 Youth Summit held in China. She is currently pursuing her Master's in Social Policy and Development from the London School of Economics and Political Science, and holds a graduate degree in Sociology from the Lady Shri Ram College, Delhi University. A former President of her college's National Service Scheme, Reeya's research interests include Education, Gender, Migration and Youth Affairs. A binge watcher of television sitcoms, Reeya also has a penchant for Modern Calligraphy.
Sagarika Pradhan is an M.Phil. student at the Centre for Study of Social Systems, Jawaharlal Nehru University, New Delhi. She holds a Master’s degree in Sociology from the Delhi School of Economics and a Bachelor’s in Sociology from Lady Shri Ram College for Women in Delhi. Over the years she has worked with Tamana, an NGO and Special Needs Education Centre based in Delhi. Her research interests lie in Education, Disability Studies and Gender at large.