Many would say India is not an easy country to live in. But dying well in India is an even more difficult exer cise. In 2011 and 2015, The Economist published Quality of Death reports. In the first, India was placed last out of 40 large countries. In the second larger report, they had found another 13 countries (including China and Pakistan) that were worse than us.
A good death depends firstly on knowledge: of when death is approaching and what can be expected. This knowledge allows goodbyes to be said and for emotional accounts to be settled, without which a peaceful passing is not possible. In India, death is ‘apshakun’. The terminally ill individual is kept in the dark as far as possible out of a misplaced solicitude.
Families don’t seem to realise that lack of information and powerlessness lead to greater despair. Doctors are not trained or empowered to begin and carry forward these conversations with empathy. Normalising death will require a major effort at public awareness.
The next requirement is for control, dignity and privacy. All of these require an autonomous individual who takes charge of her own last days and who has the right to choose or refuse medical treatment. This autonomy has to be exercised in advance by communicating one’s choices to an ‘effector community’ of family, significant others, doctors and hospitals through a living will (LW). If this communication becomes legally binding, it can be termed an Advance Medical Directive (AMD).
Lakhs of Americans have used these over the past four decades. The Supreme Court, in Friday’s judgment, has given limited clearance to these instruments and has explicitly accepted our constitutional right to autonomy. Citizens, doctors and the legal community must now prepare to learn how to use LW/AMD effectively. Ideally, we need a comprehensive legislation that looks at LW/AMD together with the right to appoint a health care power-of-attorney. This legislation should also cover decision-making in medical futility.
Dying well requires freedom from pain of all kinds: physical, emotional, spiritual. In the West, this is a recognised medical specialty: palliative medicine. In addition to doctors, much of the work is done by palliative-care nurses. Counsellors help patients in coping and making decisions. Volunteers and social workers pitch in with support.
Except for Kerala, this kind of network hardly exists in India. No undergraduate medical student receives even an hour of effective teaching on this care. We are trained only to cure and when that becomes impossible, we abandon our patients because we do not know what to do!
Without these three components: public awareness, legislation and professional capacity, end-of-life care in India will remain low quality and sketchy. So it must be accepted that the Supreme Court’s decision is just the beginning of a long road.
Roop Gursahani is a consultant neurologist and epileptologist at P D Hinduja National Hospital, Mumbai. She was in the team of medical experts that advised the Supreme Court in the Aruna Shanbaug case.