End-of-life care: Indian perspective

Abstract

According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues.

Public, patient and carers’ views on palliative and end‐of‐life care in India

“…However, it has been identified that less than 2% of Indians in need of palliative care have access to palliative care services (Sharma et al. ). The Global Atlas of Palliative Care reported that palliative and end‐of‐life care provision in India is categorised as grade 3A – a generalized provision of care (Worldwide Palliative Care Alliance and World Health Organisation ).…”

“…Similar to many other countries (Gao et al 2013), hospital services are greatly utilized (76%) during the last days of life among Indians (Directorate General of Health Services, 2012). However, it has been identified that less than 2% of Indians in need of palliative care have access to palliative care services (Sharma et al 2013). The Global Atlas of Palliative Care reported that palliative and end-oflife care provision in India is categorised as grade 3Aa generalized provision of care (Worldwide Palliative Care Alliance and World Health Organisation 2014).…”

Perspectives of Health Care Providers on US South Asians’ Attitudes Toward Pain Management at End of Life

“…Hindus may underreport pain believing pain to be a sign of a bad death. 29 Hindu patients may view suffering as a result of karma, the sum of a person's actions in one's current and previous lives that influence one's fate, and thus be disinclined to seek treatment for pain, 14 however, a belief in karma need not necessarily interfere with treatment of pain and suffering at the end of life. 18 Experts recommend that, as with all other aspects of end-of-life care, decisions regarding pain management should be based on a thorough biopsychosocial assessment and made by health care providers in partnership with patients and families, based on their unique needs and preferences.…”

Do we need a more inclusive model for understanding Ethics in palliative care in the developing countries?

“…Lack of awareness among professionals, administrators, educators and the public along with narcotic regulation also add to the list of barriers [9] . At the same time they also come with the unique strength associated with an intact family structure and values and spiritual lifestyle [13][14]. Because of the uniqueness of the ethical dilemmas and issues of the region it is difficult to explain them with the western model of palliative care ethics.…”

“…Firstly the decision making is not done by the patient alone. This is a task which involves the family members as well as the physician [14] . Secondly the physician is considered next to God [15].…”