Issues in access to end-of-life care in low-resource areas

by Dr. Yogesh Jain and Dr. Gajanan Phutke

Dr. Yogesh Jain is the Co-Founder of Jan Swasthya Sahyog and HEAL Site Advisor. Dr. Gajanan Phutke is HEAL Fellow 2017 – 2019 working at JSS. 


Even though 1% of people require palliative and end-of-life care in low-resource situations, it remains an uncharted arena. Yet it is as important as curative care to alleviate suffering. Palliative care is not only a need in cancer and HIV disease; but is needed in a diverse group of illnesses ranging from tuberculosis, renal failures, paraplegia to chronic lung diseases. In a lower resource setting, the gaps in palliation may be the need for more technology and interventions or more healthcare professionals. Thus, palliative care will initially mean ensuring that life-prolonging treatment that most patients do not get is ensured to them. It is morally unacceptable to focus on comfort care as an alternative to advocating for patients’ rights for appropriate life-prolonging treatments. If organised well and standard protocols are developed to support health workers, appropriate care can be provided for all people. Ethical principles of autonomy, nonmaleficence and benevolence will have to guide this development. We will have to prioritise for high value care which means choosing cheaper alternatives that are just as effective as more expensive diagnostic or therapeutic modalities. There is a need to settle the priorities between palliative and disease-modifying or curative treatments. Major roadblocks that limit access of the rural poor to palliative care relate mainly to the misconceptions among policy-makers and physicians, large gaps in health worker training and cultural mindsets of care-providers. A specific example of misplaced policies and regulations is the poor availability of opiates, which can make end-of-life care so much more dignified in illnesses that have chronic pain or breathlessness. A three-tiered structure is proposed with a central palliative care unit which will oversee several physicians and specially trained nurses for noncommunicable diseases, who will oversee primary healthcare centre-based nurses, who in turn, will oversee village health workers.