“Palliative care is a neglected issue in the Indian healthcare system, with few exceptions. The peer community – individuals, patients and their families, medical professionals, and lawyers – is sharply polarised in the discourse on the ethics of assisted dying or euthanasia in the Indian setting.” This is an excerpt from the editorial in the January 2016 issue of the Indian Journal of Medical Ethics (Vol.16, No.1), titled “Healing and Dying with Dignity: Where does India stand?” by Sunita Bandewar and Sanjay Nagral.
M. R. Rajagopal writes in “Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act” about the history and current status of palliative care in India. “Often death is over-medicalised, and a system seems to have evolved in which a lot of people die in intensive care units on artificial life support even in the face of obvious futility of treatment, without the ethical alternative of withdrawal of artificial life support and introduction of palliative care. While death was preceded by the withdrawal of artificial life support in up to 90% of cases in intensive care units in the USA, the Indian figure for the withdrawal of life support among cancer patients was only 29%.”
In “The caregivers’ point of view“, Sheela Jaywant looks at the caregivers’ role in taking care of the patients. “The disabilities brought on by illness can force the dying into a position of complete dependence. Their quality of life can be so poor that they might actually prefer to leave this mortal world rather than linger on in a sub-human life, and the family might feel the same way. The helplessness of caregivers, who are generally family members, stems from extreme economic adversity as well as the insensitivity of the healthcare system.”
This issue of the journal is devoted to palliative and end-of-life care, and presents five papers which together offer insights into the complexities of the subject from ethical, legal and medical perspectives against the backdrop of the Indian healthcare system and the entrenched inequities in peoples’ access to healthcare. The authors of these essays have been part of the processes involved in shaping key policies, programmes and laws on these issues.