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 18% of households enrolled for palliative care earn Rs 5000/month In 63% of households, the highest wage earner earns Rs 5000/month 66% of palliative care patients had lost their livelihoods due to illness 26% of patients' families had members who had lost livelihoods due to the illness Before palliative care, 80% of households paid for medicine, treatment, laboratory tests and travel to healthcare 98% of enrolled households have debts; 59% had sold assets to gain 0-interest loans 69% of households took out their debt after their family member fell ill 11% of enrolled households receive government benefits 49% of households have food cards or below poverty line cards Many patients do not know their rights to government benefits Many patients lack documents to enroll for government benefits Many village headmen demand bribes to list people as eligible for benefits Patients do not plan inheritance; many bereaved women and children lose everything. Poverty reduction through palliative care 85% of patients and families spent less monthly on medicine and travel after joining palliative care than before, due to symptom management, cheaper medicine, and home-based care 31% of patients received free medicines on the palliative care programme All patients reduced the use of OPDs after joining palliative care. 20% reduced use of IPDs. Both contributed to lower travel expenditure 8% of palliative care patients started earning again due to improved health Members of 10% of families started work again through palliative care respite Staff tell families of benefits to which they are entitled and how to get them One hospital palliative care team educated 171 Pradhans and increased by 5% the proportion of palliative care patients and families who receive government benefits Early diagnosis plus immediate enrollment on palliative care contributes to greater household poverty prevention and reduction, and greater dignity Palliative care's awareness-raising has increased the number of patients enrolling on palliative care. Expanded services could enroll people earlier in their illness, since 59% of patients were diagnosed over 2 years ago, but only 19% of patients had been on the palliative care programme for 2 years Reduced use of OPD and IPD free up regular hospital services for others. In India, approximately 645,441 children on any 1 day need palliative care, but only 0.7% of them receive it (ICPCN, EMMS, 2015). If only 0.7% of needy adults are receiving palliative care, then the benefits above could be delivered to 143 times more families, if targeted effectively at poverty reduction. 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.