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Household poverty reduction through palliative care – a pilot study in rural north India

Author: Dr Ann Thyle, Consultant Palliative Care, Emmanuel Hospital Association, Delhi & Ms Cathy Ratcliff, Director of International Programmes, EMMS International, UK
04 March 2016

Emmanuel Hospital Association (EHA) and EMMS International have completed a pilot study on reducing household poverty through palliative care in rural north India.

Emmanuel Hospital Association (EHA) is an indigenous federation of 20 hospitals, 42 community health and development projects, seven nursing schools, six HIV & AIDS projects and eight palliative care services.

Established in 1970, EHA seeks to serve the rural poor in north India. With a catchment population of nearly seven million, the hospitals treat over 700,000 patients annually.

EMMS International is a UK-based international healthcare charity which works in India, Malawi, Nepal and Scotland, on three programmes: palliative care, maternal and child health, and primary healthcare.

Poverty in rural India

In this middle-income country, inequality means that poverty is a major problem. 833 million people live in rural areas (1), with only 5% of households eligible to pay income tax or professional tax.

Only 9% of households have a salaried member in the government or private sector. In 74% of households the highest earning member earns less than INR 5,000 a month (2), and nearly half of rural households depend on casual labour (3).

Given the poverty of the people accessing their services, EHA staff noticed that many spend a lot of money on ineffective treatment before joining the palliative care service.

Yashoda and Mohammed’s stories

Yashoda lives in a village in Uttar Pradesh. She is a widow with no close family. Her husband, two sons, daughter and daughter-in-law succumbed to tuberculosis, leaving her with huge debt and with little social support.

Diagnosed with breast cancer and unable to meet treatment costs, she was destitute until the palliative care team provided holistic care.

Mohammed, also from a village in Uttar Pradesh, died of oral cancer. His wife and children were turned out of their home by his brothers.

Many patients’ families do not know that they are entitled to government subsidies for healthcare and government benefits such as widow’s pension and old age pension.

Many close family members of the deceased, in particular widows and children, are disinherited. 

Convinced that palliative care can address these drivers of poverty, EMMS International and EHA implemented a pilot project called Poverty Reduction in India through Palliative Care.

The research

Participants in the pilot study were people and their families accessing palliative care at three EHA hospitals in Uttar Pradesh where palliative care services were initiated from 2010 in response to the absence of such care among the rural poor. The principal investigator administered 129 pre-tested questionnaires, which was 83% of the caseload.

The findings

The pilot study reported the following findings:

  • 18% of the households enrolled for palliative care earn less than INR 5,000 per month
  • in 63% of enrolled households, the highest wage earner earns less than INR 5,000 per month
  • 66% of palliative care patients had lost their livelihoods due to illness
  • 26% of palliative care patients’ families had members who had lost livelihoods due to the illness
  • before joining the palliative care programme, 71% of households incurred costs of palliative care medicines, treatments and laboratory costs, and 18% incurred high costs of travel to healthcare. An overlap of 9% between these two meant that 80% of households incurred these costs
  • 98% of enrolled households have debts: 39% had loans with interest, and 59% had loans without interest, for which they had had to sell assets
  • 69% of households took out their debt after their family member fell ill; and
  • 11% of enrolled households receive government benefits; 49% have Below Poverty Line cards.
Poverty reduction through palliative care

Through the study, the researchers found that:

  •  85% of patients and their families spent less each month on medicines and travel after joining the palliative care service than they had before, due to the service’s symptom management, provision of cheaper or free medicines and home-based care
  • 31% of patients received free medicines on the palliative care programme
  • all patients reduced their use of Outpatient Department services after joining the palliative care programme; 20% reduced their use of Inpatient Department (IPD) services, after joining palliative care. Both contributed to patients spending less on travel.
  •  8% of palliative care patients were able to start earning again due to improvements in health through the palliative care service; and
  • Members of 10% of families were able to work again through palliative care support and respite.

Palliative care teams can tell patients and families of government benefits for which they are eligible, which forms they need to fill in and which documents they need to submit. One team educated 171 village heads with a 5% increase in palliative care patients receiving government benefits.

The way forward

After completing the study, the researchers concluded that EHA and EMMS International could further reduce the poverty of these most needy families if they enhanced and expanded EHA’s holistic palliative care services.  

To achieve this goal of poverty reduction, the service needs to be more systematic, on a larger scale, in more depth, and at an earlier stage of illness.

Palliative care has great scope to reduce desperate poverty from chronic illness. Early diagnosis followed by immediate enrolment in a palliative care service contributes to household poverty prevention.

EHA’s palliative care services are well positioned to refine the model and research further its effects on household poverty and on hospital economics.

Find out more about EHA and EMMS International online.

References

  1. Rural Urban Distribution of Population: Census of India 2011
  2. Socio-Economic and Caste Census 2011 for Rural India
  3. Hindustan Times, July 4th, 2015.

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