Hospice and Palliative Care Development in India: A Multimethod Review of Services and Experiences

Abstract

Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress.

Economic Impact of Terminal Illness and the Willingness to Change It

“…13 Pallium India, which provided the study site, is in Trivandrum, Kerala, on the southwest coast. Kerala has a long history of organized health care dating back to the 19th century.…”

“…There is no national palliative care policy, and the training facilities are inadequate for the population's requirements. 13 Thus, palliative care in India is characterized by an increasing number of home care services that largely rely on unpaid family support and volunteers. 15,16 Culture and family structure in India are readily accepting of such care since most people in India prefer to live and die at home.…”

Palliative Care in Low- and Medium-Resource Countries

“…13 Opiate availability is dependent on state government policies, and as per recent estimates, only 10 of 28 states have adopted simplified opiate regulations. 34 It is estimated that only 3% of India's 1 million patients with cancer pain have access to adequate analgesia. 35 The Indian state of Kerala is an example of an excellent model for palliative care delivery.…”

Physical problems and needs of patients in palliative care center

“…Since then with the efforts of committed individuals, including Indian health professionals as well as volunteers, in collaboration with international organizations and individuals from other countries, hospice and palliative care have developed in India. 3 Around 138 organizations are identified which are currently providing hospice and palliative care services, in around 16 states or union territories. These services are usually concentrated in large cities and regional cancer centers, with the exception of Kerala, where services are more widespread.…”