Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. Policies and efforts towards revamping medical education, expanding public health and community health interventions, and overall improvement in health systems are key factors driving palliative care in India, and the movement towards a more integrated and holistic health(care) ecosystem.
16th October, 2021
According to the WHO website, palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
Palliative care is a crucial part of integrated, people-centred health services. Relieving serious health-related suffering, be it physical, psychological, social, or spiritual, is a global ethical responsibility. Thus, whether the cause of suffering is cardiovascular disease, cancer, major organ failure, drug-resistant tuberculosis, severe burns, end-stage chronic illness, acute trauma, extreme birth prematurity or extreme frailty of old age, palliative care may be needed and has to be available at all levels of care. Among low- and middle-income countries, 78% adults and 40 million people are in need of palliative care every year.
The Indian Context
Dr M R Rajagopal, referred as the father of palliative care in India, in writing for the Indian Journal for Medical Ethics in 2016, outlined the evolution of palliative care in India and the need for medical education to include pain management and palliative care in their curricula.
Much has changed since over the last decade, as explained in a recent article in the Indian Express.
- 2014 amendments to India’s Narcotic Drugs and Psychotropic Substances (NDPS) Act has increased access to morphine for hospitals and pharmacies by removing bottlenecks.
- Palliative care (along with preventive, promotive, curative and rehabilitative services) has been included in the National Health Policy 2017.
- Palliative care has been introduced in post-graduate and undergraduate curricula for medical students.
In the same article, Dr Rajagopal also makes recommendations to include palliative care in tertiary care settings, training of community health workers (CHWs) and inclusion of palliative care in Covid management strategies, and that these changes can make India a model for palliative care among low- and middle-income countries.
The National Policy for Palliative Care (NPCC) is a centrally sponsored scheme that is aimed at increasing the capacity of palliative care facilities in the country while among states, the Kerala State Palliative Care Policy 2019 stands out for its progressive planning and rollout.
Pallium India, the organization started by Dr Rajagopal in 2013, is at the forefront of this change in India. Two of their initiatives that may be most relevant for the readers are highlighted below.
Launch of the Sukh-Dukh helpline in partnership with Caregiver Saathi, MIND India and Edjacklegs.
Launch of the state-wide directory of institutions offering palliative care in India
Pallium India’s resources page (and the website itself) is a rich resource for those looking to learn more about palliative care in India, policies, access to drugs, end of life care and much more. You can also follow the developments and stay updated on events by following their twitter page.
Cipla Foundation‘s Palliative Care & Training Centre in Pune and pan-India efforts supporting palliative care providers is one of the very few corporate-led initiatives in this space, and can be a model for many others trying to support this space. The foundation’s efforts towards enhancing care during Covid including tele-consultations and support in launching the Saath Saath helpline helped bring the various players together, to create a more holistic care experience. You can read more about Cipla Foundation’s work in palliative care here.
The Saath Saath helpline was launched by Cipla foundation in partnership with leading palliative care organizations. Partners in this effort include include reputed hospitals and non-profits like Karunashrya, Romila Palliative Care by Sneha Mumbai, King George Memorial‘s Sukoon Nilaya in Mumbai, CanSupport, Dr Barooah Cancer Institute in Guwahati, Tata Memorial Centre in Mumbai, PalCare India and PRPCS in Hyderabad.
The Indian Association for Palliative Care (IAPC) was formed in 1994 as a national forum for individuals and institutions involved in palliative care. Here are some of their key initiatives.
- You can subscribe to the IAPC newsletter to learn more about the various activities and initiatives.
- The Indian Journal of Palliative Care is a peer-reviewed quarterly journal focused on latest (technical and other) developments in the space.
Research and data around palliative care in India is evolving as more hospitals and health establishments are setting up such facilities and extending palliative care services. This 2018 study published by Dr Sonali Sarkar at the Department of Preventive and Social Medicine at JIPMER in Pondicherry makes a case for palliative care for those in their old age regardless of the conditions that warrant such care. A 2018 national survey by Agewell Foundation covered over 10000 respondents across the country and focused its survey on long-term and palliative care among elderly.
Palliative care is an area that may be of considerable importance to those working on broader SDGs towards universal health access, and working in health-focused institutions, seniorcare companies, hospitals, non-profit organizations and advocating for better quality of life.
Medical education, public health and community health interventions, and general health systems are evolving to meet the emerging needs of the evolving demographics and changes, and moving towards a more integrated health system. Specialized care services that are yet not universally available (dementia screening, palliative care, etc) are slowly but steadily becoming part of the larger health spectrum and integrated at all levels (primary to tertiary, society, community, family and individual) due to the efforts of individuals and organizations working closely with the governments. With a growing older adult population, and the desire for better quality of life over a longer lifespan, tertiary hospitals are also likely to move from a disease-focused approach to a more holistic treatment + care approach. Seniorcare organizations that have insights into the needs of older adults are well positioned to create a care continuum outside the hospital ecosystem, and likely to support and augment health needs in an effective manner.
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