Dignity & End-Of-Life Care In People Living With Dementia: The Indo-Uk Dialogue

Dementias or major neurocognitive disorders (NCD) are a group of neuro-degenerative disorders characterized by progressive impairment in cognition, behavior, judgement and functioning. As the illness progresses and overall cognitive abilities deteriorate, the moderate and severe stages are often fraught with challenges of palliative and end-of-life care (ELC). ELC support encompasses multiple domains of living, including physical, medical, emotional, social and spiritual. In fact, ELC may extend to the caregivers even after the demise of the patient. ELC in dementia assumes an added importance with relation to dignified care of the individual with compromised cognitive abilities as well as protection from coercion, involuntary decisions and legal hassles. Physician-assisted death (PAD) has also emerged as a controversial yet important area in ELC. This involves several medical, social, ethical and legal connotations with no “one right path” to choose. The last few decades have noticed several legal moves in this direction globally, from the Oregon declaration to legalization of euthanasia in several European nations to passive euthanasia being supported in India. Several factors complicate ELC in dementia including do-not-resuscitate orders, ability to comprehend, communicate and execute an informed choice, contextualizing the suffering of the affected, and finally right to live (versus right to die). This is even more pertinent in the light of advance directives being implemented through the Indian Mental Healthcare Act, 2017. In a rapidly ageing country like India with a rising dementia burden, it is thus imperative to start a collaborative dialogue regarding ELC and PAD in dementia through a multi-disciplinary approach. In a rights and dignity-based mental health era, social justice in dementia care can only be achieved if ELC is based on a patient-centric approach respecting the individual’s choices and autonomy. With this background, this symposium generates an East (India) – West (UK) dialogue related to ELC in dementia management, discusses the legal provisions of PAD in the two nations, focuses on dignity-based dementia care and finally highlights the stand of the Indian Psychiatric Society (IPS) with relation to this matter. The individual sessions are as follows: 1.Dignity in dementia care: Focus on human rights and autonomy; (Dr DEBANJAN BANERJEE, Consultant geriatric psychiatrist, Kolkata, India); 2.End-of-life care in neurocognitive disorders: The Indian caveats; (Dr Neelanjana Paul, Associate Professor & Head, Dept of Psychiatry, ICare Institute of Medical Sciences & Research, Haldia, India); 3.End-of-life care in dementia management: Perspectives from the UK; (Dr Sujoy Mukherjee, Consultant Old Age Psychiatrist, West London NHS Trust, U.K.); 4.Physician-assisted-death and end-of-life care in dementia: The Indian Psychiatric Society (IPS) stand; (Dr Gautam Saha, Director, Clinic Brain Neuropsychiatric Institute and Research Center, Kolkata & President, Indian Psychiatric Society).