Palliative Care in India – A SWOT Analysis
Dr. Divya Mishra MD, M.Med, NFPM
Consulting Physician, LBSNAA, Mussoorie
Yesterday, 12th October was the occasion of World Hospice and Palliative Care Day and as part of the palliative care community of providers, I observed a unique celebration of the concept on the logo- ‘My Care, My Right’ through several creative and academic events in healthcare institutions and NGO’s involved in palliative care delivery. These included paintings, photography, training programs for nurses, health volunteers, doctors, awareness programs for patients and caregivers and zealous roleplays for lay public- all reflective of the upbeat and positive outlook for palliative care in India. It seems like a quiet movement is picking up and on its way to refresh the delivery and perception of medical care. Even while advocacy for Opioid Availability, health professionals’ education and public awareness efforts must continue, sustenance of the momentum will require palliative care professionals to simultaneously strive for achieving excellence and demonstrating quality in all that we do. Palliative care must go through the critical analysis and continuous improvement process so that it shapes up as beautifully as its core. Here is a SWOT analysis from the Indian context:
1. The seeds for the transformation of health sector in India have already been sown. The diligent advocacy efforts of our palliative care champions have led to development of a policy framework of the National Palliative Care Program (NPPC-2012) aims for availability and accessibility of rational, quality pain relief and palliative care to the needy, as an integral part of Health Care at all levels, in alignment with the community requirements. Efforts are being made for its integration with synergistic National programs (of NCD’s, elderly) to sustain financial and operational viability and the NPPC provides guidance to states on the financial, infrastructural and educational aspects of its implementation. No separate budget is allocated for the implementation of National Palliative Care Program. However, the Palliative Care is part of the ‘Mission Flexipool’ under National Health Mission (NHM) and states/UTs can submit proposals for the ‘Program Implementation plans’ to avail of the funds (1).
2. The National Health Policy 2017 made an important change from very selective to comprehensive primary health care package which includes geriatric health care, palliative care and rehabilitative care services. It commits itself to culturally appropriate community-centred solutions to meet the health needs of the ageing community.
3. National Health Mission (NHM), the country’s flagship health systems strengthening programme, particularly for primary and secondary health care envisages “attainment of universal access to equitable, affordable and quality health care which is accountable and responsive to the needs of people”. In February 2018, the Government of India (GOI) announced that 1,50,000 Health & Wellness Centres (HWCs) would be created by transforming existing Sub Health Centres and Primary Health Centres to deliver the expanded range of services including palliative and geriatric care through Comprehensive Primary Health Care (CPHC) and declared this as one of the two components of Ayushman Bharat (2). The other component of Ayushman Bharat, namely the Pradhan Mantri Jan Arogya Yojana (PMJAY) aims to provide financial protection for secondary and tertiary care to about 40% of India’s households. It is hoped that together, the two components of Ayushman Bharat will enable the realization of the aspiration for Universal Health Coverage. The budgetary allocation towards this scheme of the GOI and has been increased from INR 24 Billion (FY-2018-2019) to 64 Billion (FY-2019-2020) (3).
4. In early 2019, the erstwhile regulatory body for medical education, the Medical Council of India (MCI) included palliative care in undergraduate medical curriculum as part of its new AETCOM (Attitude, Ethics and Communication) module (4). This important development has the potential to prime undergraduates to the ‘whole person approach’ and feel more in control when dealing with ‘the inevitability and uncomfortable realities associated with decline and mortality and hopefully imbibe the essence of a ‘continuum of care’, unto death and beyond.
5. Postgraduate education in Palliative care is now a reality with many premier colleges offering Masters program and Fellowship programs in palliative care thus readying a steadily increasing workforce for bridging the demand-supply gap of trained professionals.
1. India has been rated to be among the worst 15 by the ‘Quality of death index” for 80 countries (5). We were found sorely lacking in Infrastructure, Access, trained professionals and in Community Engagement- that includes availability of volunteers, as well as in public awareness of palliative care. The demonstrated need for integrating palliative care into public health systems has never been more urgent and yet the pace of adoption and action at the ground level has been slow.
2. At present, there are approximately 1000 palliative care units in India, with about 90% of these being located in Kerala which caters to only 3% of country’s population (6). Palliative care delivery institutions across the country are dispensing services in a fragmented manner, unaided by any comprehensive framework, referral network or financial support. Coupled with this, the absence or lack of effective primary care, which until now hasn’t focused on the unmet needs of chronic NCD patients at community level, inevitably leads to fragmentation of services and burdening of secondary and tertiary levels.
3. A recent report based on data from the National Sample survey observed that out of all qualified health workforce in India, 77.4% were located in urban areas, even though the urban population is only 31% of the total population of the country. This urban–rural difference was higher for allopathic doctors (density 11.4 times higher in urban areas) compared to nurses and midwives (5.5 times higher in urban areas) (7). The lack of availability of skilled manpower in public health facilities (up to 40% vacancies of Medical Officers and Staff nurses at PHC’s in some large states) and approximately 70% vacancies of specialist positions in CHC’s is one of the main reasons of underutilization of public health facilities.
4. Health Information Management systems (HMIS) in India are often under utilized. Their application to maintain patient records for needs assessment, monitoring of health status and as decision aides is not a priority at the moment in most public health facilities possibly due to a lack of ‘objective data culture’ (8).
1. The rising numbers of Non-communicable diseases (NCD’s), whose onset occurs in India a decade earlier (≥45 years of age) than many developed nations and contribute to 60% of deaths in the country, our ageing population, with life expectancy having crossed 67 years, many with multiple chronic problems that remain undiagnosed and uncared for either due to due to lack of awareness and insufficient health-care access (9). In a recent report of India Council of Medical Research (ICMR), titled India: Health of the Nation’s States: India State-Level Disease Burden Initiative (2017), it is observed that the disease burden due to communicable, maternal, neonatal, and nutritional diseases, as measured using Disability-adjusted life years (DALYs), dropped from 61 per cent to 33 per cent between 1990 and 2016. In the same period, disease burden from non-communicable diseases increased from 30 per cent to 55 per cent (10). This points to a huge unmet demand for palliative care services.
2. Utilization of the same infrastructure as for delivery of Primary health care in a synergistic delivery model to implement community-based palliative care can and will strengthen PHC as well.
3. Involvement of Community Health Workers and community volunteers in palliative home care may increase social solidarity, trust and cohesion besides encouraging vocational rehabilitation of patients where possible.
4. Utilization of existing ASHA workers in the comprehensive primary health care services presents a unique opportunity to leverage their relationships and awareness of the communities in doing a Needs assessment for palliative care, for conduct of follow up visits, for facilitation of medical services delivery and communication needs of patients.
5. Training of all registered medical practioners in PHCs and CHCs with basic palliative care knowledge and skills has the potential to serve as a ready resource for primary palliative care provision in communities where people reside.
6. The mandatory allocation of 2% of average net profits of three years on corporate social responsibility (CSR) per the Companies Act, 2013 may prompt the large corporate bodies associated with health sector to invest in palliative care work in institutional or non-governmental settings.
1. Clinical Care Outcome measurement in palliative care is not as straightforward to assess as morbidity, mortality assessments due to the subjective nature and declining context of health and will never represent all care. Assessments of Quality of life are complex and time consuming and research oriented. Brief assessments tools of suffering are available but not routinely used either. In such a situation, the government and the private sector may not find it attractive for investment.
2. Palliative Care as a whole needs to acquire credibility in the eyes of policy-makers, health professionals, healthcare institutions and patients alike. The Secondary and Tertiary Care Private Hospitals driven by motives (high turnover of patients, costly investigations and prescription of expensive drugs) — do not see much gains in investing in Palliative care. The Value argument (high efficiency, low investment, enhanced Return On Investment ) for institution of palliative care services must be prepared to make business sense and enable easy assimilation of routine palliative care services into disease management programs.
3. A critique of the Comprehensive Primary Health Care (CPHC) scheme, which aims to provide palliative care in its ambit of services, would be the unrealistic resource categorization for the intensive and focused nature of tasks. As evidenced in a PHC based set up in Maharashtra, the multiple responsibilities that the Medical officer at the PHC is tasked with, may significantly reduce attention to palliative care services and consultation time. Moreover, the absence of medical allopathic doctors at the grass root level of the HWC may compromise the delivery of curative services as well as reflect adversely in the overall functioning of the health team due to lack of fall back option for the non medical staff.
4. High turnover of palliative care staff and burnout due to the nature of the responsibility towards patients and families is a recognized possibility in the absence of supportive and collaborative team and recognition of work well done
5. Every palliative care delivery system needs to recall the lessons learned from the failure of the Liverpool pathway for end of life patients in the UK. Examples of it being used as a tick-mark exercise, oversights and pitfalls of inadequate training, misinterpretation of guidance, shocking stories about lack of compassion on the part of nursing staff were observed.
We have set out on the road to integrating the palliative care approach into comprehensive health care delivery at all levels of care. It’s an onerous task, given the magnitude of disparity and variability among states.
1. National Program for Palliative Care, National Health Mission. MoHFW. https://nhm.gov.in/index1.php?lang=1&level=2&sublinkid=1047&lid=609. Accessed on 12th October, 2019
2. Ayushman Bharat- Comprehensive Primary Health Care through Health and Wellness Centers, Operational Guidelines, NHSRC, 2018
3. indiabudget.gov.in. Accessed on 12th October 2019.
4. Medical Council of India includes palliative care in undergraduate medical education. https://palliumindia.org/2019/03/medical-council-of-india-includes-palliative-care-in-undergraduate-medical-education/. Accessed on 12th October, 2019
5. Economic Intelligence Unit (2015). Economist Intelligence Unit. The 2015 Quality of Death Index. Ranking palliative care across the world 2015.
6. Kumar S. Models of delivering palliative and end of life care in India. Curr Opin Support Palliat Care 2013; 7:216 22.
7. Rao KD, Shahrawat R, Bhatnagar A. Composition and distribution of the health workforce in India: estimates based on data from the National Sample Survey. WHO South-East Asia J Public Health 2016; 5:133-40
8. Ranganayakulu Bodavala, Evaluation of Health Management Information System in India- Need For Computerized Databases In HMIS. Harvard School of Public Health. 1998.
9. National Health profile, 2018. 13th Issue. Central Bureau of Health Intelligence, DGHS, MohFW, GoI.
10. Health States, Progressive India: Report on the Ranks of States and Union Territories. Health Index, June2019. Downloaded from http://social.niti.gov.in/.