Living and Dying with ALS/MND in India: Public Policy and Private Realities

Amyotrophic lateral sclerosis/motor neuron disease (MND/ALS) is an uncommon disease in India with a prevalence of about 4/100,000. Available care is shared with other chronic diseases and is largely pay-as-you-go. There are no dedicated multidisciplinary clinics or services for management. Almost all patients are cared for at home by family or by paid caregivers. Palliative and rehabilitative care are particularly underdeveloped in India. The major barrier is a taboo on the discussion of death and dying; truth-telling is the exception and collusion is the rule. The legal system has only just begun to recognize advance directives, and medical aid in dying may not be considered for at least two decades. The way ahead consists of neurologist training in the basics of palliative care, advocacy for appropriate end-of-life legislation and public awareness and support for palliative care. The emergence of a patient-run support group for MND is a major positive.