Poverty reduction in India through palliative care: A pilot project
Introduction: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare – a pilot project. Settings and Design: EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. Subjects and Methods: EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. Statistical Analysis: An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Results: Poverty of palliative care patients
Poverty reduction through palliative care
Conclusions: Holistic palliative care can reduce the desperate poverty driven by life-limiting illness, and can do so systematically, on a large-scale, in-depth, especially if started early in the illness. Home-based care also frees up hospitals to serve more patients with treatable conditions.
Keywords: Bereaved families, Government benefits, Inheritance, Palliative care, Poverty reduction
India is 135th of 187 countries in human wellbeing. Most rural households are poor. Staff of eight Emmanuel Hospital Association (EHA) hospitals providing palliative care noticed that: many patients have spent a lot on ineffective treatment; many families do not know about government benefits; many patients and families cannot work; many bereaved people are disinherited. 6 million people annually need palliative care, but fewer than 1% of these obtain it; 36 million household members annually are thereby impoverished. 0.7% of children needing palliative care receive it. Poverty reduction in India through palliative care (PRIPCare) studied EHA's palliative care programme's effects on poverty.
A questionnaire was developed as follows:
The questionnaire was administered and data were collected in three hospitals in Uttar Pradesh, as shown in [Table 1].
The consultant administered the questionnaire through in-depth interviews with patients and their family members, with their written consent. The consultant also conducted focus group discussions with staff members. An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed the data using Excel.
Indicators of poverty
Nearly 18% of households earn <Rs 5000/month. 39% of households have debts which they will find difficult to repay. In 63% of households, the highest wage earner earns <Rs 5000/month. Families with chronically sick members often have to cut their monthly expenditure on food items.
Nearly 63% of households earned their income from casual work or begging. 0.8% are drivers, 1.5% are teachers, 5% are farmers, 12% are retailers, and 18% are regular labourers.
Costs associated with treatment before palliative care
Before joining palliative care, 71% of households had incurred costs of medicines, treatments and related laboratory costs, with monthly costs ranging from Rs 100 to Rs 500,000. 14% of households had spent between Rs 100,000 and Rs 500,000/month on medical costs. 18% of households had paid high costs of travel to healthcare, between Rs 5000 and Rs 50,000/month. Households had taken on debts or sold assets to meet these expenses: 39% of households had taken loans with interest, and 59% had taken loans without interest but had to sell assets to pay for this otherwise favourable loan. 69% of households had fallen into debt after their family member had fallen ill.
Time from diagnosis to enrolment in palliative care
59% of respondents had received their diagnosis over 2 years ago, as shown in [Graph 2].
However, only 19% of respondents had joined palliative care over 2 years ago. From this, we deduce that many patients do not join a palliative care service soon after diagnosis, as shown in [Graph 3].
This is significant, because when patients enrol at a late stage, the palliative care team can deliver patient care, but time and the patient's health often do not permit a significant poverty reduction effect or a long time on the programme. Patients who have been on the palliative care programme for <6 months do not yet experience significant poverty reduction, while they stabilise their health, income, and expenditure. These patients are building up to poverty reduction, as their health improves, their family starts to experience respite, government benefits are sought, inheritance plans are made, and reduced expenditure on hospital visits and medicines starts to mean increased expenditure on paying off debts and improving nutrition. Patients who have been on the palliative care programme for between 6 months and 2 years receive the maximum benefit from the programme and the greatest poverty reduction for themselves and their families.
It is thus vital to enrol patients early in their illness. Ideally, patients are diagnosed early and are immediately enrolled on both treatment and palliative care, contributing to maximum health, dignity, and poverty prevention and reduction.
Key findings: The effects of palliative care on poverty in India
Inherent household poverty reduction in palliative care services
Household poverty reduction in holistic palliative care designed for India
In the three EHA programmes examined:
Effects of palliative care on hospital services to its catchment population
Palliative care caused 36% of patients to reduce use of out-patient department (OPD) and 20% of patients to reduce use of in-patient department, and therefore allowed regular hospital services to provide their subsidised services to other vulnerable patients. (In fact, all patients reduced their use of OPD after joining the palliative care service, but not all reasons were directly attributable to the palliative care service; they included inability to afford OPD by this stage in their economic decline.)
What happens without access to holistic palliative care?
Seema, aged 24 and injured since childhood, was given a sewing machine and regular dry rations through the palliative care programme. Team members then got her a tricycle from the social welfare department for commuting. Now Seema is an independent woman earning a decent livelihood for her mother and herself, through sewing. Recently, she was awarded a “pucca” house under a government housing scheme. Soon she will have a disability pension. The palliative care programme's multidisciplinary approach to networking reduced her poverty [Figure 2].
Chronic illness causes poverty worldwide. In the USA, cancer is more prevalent among poor people. The 2014 Global Atlas of Palliative Care at the End of Life finds that palliative care is cheaper for families and health-care services than alternatives. Moreover, government expenditure on health is extremely inadequate in almost all low- and middle-income countries. Patients in these countries rely heavily on out-of-pocket financing for basic healthcare, resulting in a high prevalence of catastrophic payments and a large poverty impact of these payments.
In India, where 1% of the population suffers from chronic or terminal illness, patients stop working, families prioritise care over income, and households increase expenditure on treatments and cures. As households fall into greater poverty, they sell assets, take out unsustainable debt, and the situation spirals out of their control. The poorest households are particularly affected, as their illiteracy and lack of influence make it most difficult for them to gain access to government benefits.
Palliative care in India has an inherent potential to reduce household poverty, including through reducing households' expenditure on medical care, assisting patients and their family members to receive government benefits, and enabling some family members and patients to work again. EHA's palliative care services are achieving these poverty reduction impacts even before EHA has developed them for poverty reduction. With the development and refinement of these services, more patients and family members could enrol in palliative care, and earlier. More households would spend less money on inappropriate treatments and hospital visits and medicines, would make these savings earlier, would enrol for all government benefits, would earn more again, would save more money over the course of the illness, and would organise inheritance to benefit women and girls. Severe illness devastates poor households' income and expenditure, driving them into hopeless poverty. Holistic palliative care has vast potential to limit all these effects.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
EMMS International thanks Dr. Jane Bates for her pioneering work in developing the concept of palliative care for poverty reduction, which she is researching with EMMS in Malawi, in a project funded by the UK's Department for International Development and The True Colours Trust.
Financial support and sponsorship
Funded by EMMS International.
Conflicts of interest
There are no conflicts of interest.
[Figure 1], [Figure 2]