Old age and palliative care
Old age and palliative care go hand-in-hand. World Health Organization and Worldwide Palliative Care Alliance estimate suggest that among adults in need of palliative care, 66% to 69% are elderly over 60 years of age.1 Among conditions requiring palliative care1 Alzheimer’s, Parkinson’s, chronic respiratory diseases, cardiovascular diseases, diabetes, rheumatoid arthritis and cancer are common amongst the elderly. Old age related weakness in absence of any other medically diagnosed condition though not listed anywhere in the literature available as requiring palliative care will constitute a major proportion of the need of palliative care services in India. In a study done in urban areas of Puducherry to estimate the need of palliative care in the general population, it was found that 9 out of 22 people (44%) in need of palliative care were suffering from only old age related weakness.2 The assessment was based on three questions. First, is there anyone in your family who is bedridden? Second, is there anyone in your family who is unable to go to work because of a physical illness? And third, is there anyone in your family who is not well and needs help to look after his/her activity of daily living? On an average, at 60 years of age, people in India are expected to live for another 18 years.3 So, whether or not, elderly are suffering from any of the conditions requiring palliative care, they will be in need of palliative care services as they are living longer with frailty and problems, which are psychosocial and also spiritual. But in the health programme for the elderly, NPHCE (National Programme for Health Care of the Elderly), which was launched in 2010-11, there is no mention of palliative care.4
Elderly in rural areas
With the demographic transition in India, the number of elderly is increasing. The projected proportion of elderly in the total population will be 11.1% in 2025 (United Nations Department of Economic and Social Affairs [UNDESA], 2008), up from from 7.5% in 2010. In terms of absolute numbers, elderly population in India is projected to reach 158.7 million by 2025 (United Nations Department of Economic and Social Affairs, 2008).5 Most elderly in India will be in rural areas as the trend suggests. As per the 2011 census and SRS 2013 data, 68.8% of the total population is in rural areas, whereas for elderly, 70.5% reside in rural areas. The situation is worse in rural areas with higher proportion of elderly living with disabilities, mostly locomotor and visual and higher dependency ratio as compared to urban areas (15.1 vs 12.4).3 Care for such elderly is becoming difficult because of increasing trend towards nuclear families and also migration of younger population to urban areas leaving the elderly behind in villages with fewer caregivers. Poverty is also more in rural areas increasing the burden of psychosocial care for the elderly. The implications of this being that elderly in need of palliative care in rural areas are either uncared for or minimally cared with immense strain on the caregivers. Palliative care, which focuses not only on the patients, but also the caregivers and family members has become necessary in the present situation.
Health services for elderly in rural areas
All the health programmes are presently being implemented through the sub-centres manned by MPHW-M (Multi-Purpose Health Worker - Male) and MPHW-F (Multi-Purpose Health Worker - Female) catering to a population of 5000 in plains and 3000 in difficult terrains.6 This being equivalent to five to six villages, which in some states and less densely populated areas is scattered over wide geographic areas. The number of MPHW-M is very low in all states of India. Number of MPHW-F is also lower than the requirement as per the norms.6 Primary responsibility of the MPHW-F is maternal and child health. She is also expected to do multiple activities under various other national health programmes like NPCDCS, NMHP and so on. It sounds logical to add the responsibilities as mentioned in NPHCE under the sub-centre level - Domiciliary visits for attention and care to home bound / bedridden elderly persons and provide training to the family care providers in looking after the disabled elderly persons. But given that the services under the RMNCH+A (Reproductive, Maternal, Newborn, Child and Adolescent Health Programme) are quite demanding especially with concentrated efforts in reducing maternal and neonatal deaths, the MPHW-F is overburdened. Considering a more pragmatic approach, in the given scenario, the expectation of the NPHCE to cater to the geriatric age group through the MPHW-F in the rural areas is utopian. Elderly will continue to remain a neglected group.
The principles of palliative care need to be incorporated into the NPHCE and focus should shift from providing services through the health care system to community based palliative care coordinated and supported by the health care system. Lessons learnt from Kerala in developing a successful model of community involvement in providing palliative care to the needy are still not infused into the rest of the country. But if we want a better quality of life for the elderly and more comfortable death for the fast aging population of our country, we need to consider palliative care for the large number of elderly in the rural areas of India. Greater collaborations with community based organizations and Non-governmental organization will have to be in place to spread the message of palliative care in the villages, encourage volunteer centered community based palliative care programmes, which should be supervised by the health system through the Primary Health Centres (PHC) and Sub-centres. The Medical Officers of PHC and MPHW-M and MPHW-F at sub-centres need to be trained in palliative care to be able to do this. A more inclusive programme is required for sustainability of the palliative care services for the old and suffering population of this vast country through collaborations at various levels and various organisations for capacity building, provision of services, supervision and monitoring.