The only certainty in life, is death. However the manner and time of death remains totally uncertain and unpredictable. Today there is an ever increasing population spending more and more time preparing for eventualities; insurance being a prime example. Let us therefore look at the possibilities of the manner of death.
The first is the sudden death, typically from a road traffic accident or a sudden heart attack in an otherwise apparently healthy individual. These are by definition unanticipated and dramatic leaving the family unprepared and devastated.
The second is the gradual and more or less predictable downhill of a terminal illness like cancer. Remissions and survivals apart, these can be broadly anticipated both in terms of time and clinical detail on the basis of clinical literature. This is quite distinct from the third mechanism of death namely the gradual decline of multi-organ failure resulting from various clinical conditions like diabetes, hypertension, liver or kidney failure and cardiac conditions. Here the deterioration is often prolonged and the time factor difficult to estimate.
The fourth mode of death is that associated with the frailty of old age. Within a span of a single generation, the life expectancy in India has increased by two decades and counting, with senior citizens in their seventies and eighties now a common feature of society. Here the decline is also gradual but linked more to age related health problems rather than specific disease. Restricted mobility, skeletal frailty and a decreased capacity for physical effort are prominent features with the associated fallout.
Suicides remain in a special category because whilst they may be sudden and unexpected for the family, specialists are generally agreed that there are always tell tale warning signs that are missed. Whatever the minutiae, they remain sudden and dramatic.
Apart from sudden deaths, a major emerging concern in these groups is the question of medical care in the final days of one’s life. There is a growing suspicion, sometimes well founded, that patients spend their final days in the intensive care units of corporate hospitals more in the interests of the financial health of the hospital rather than the interests of the patient. Patients are put through cycles of expensive chemotherapy, scans, drips, and tubes; hooked up to an impressive array of gadgets which beep and flash occasionally; but which in the final analysis do not make a blind bit of difference to the patient in terms of quality or longevity of life. The only variable is the degree to which the family is impoverished.
As a result more and more people, perfectly rational and well informed, are making it clear to their family that if ever they are in such a situation, they most definitely want to die at home and not in a hospital bed with dozens of tubes going in or out of them in an exercise of sublime futility. Whilst on the one hand patient autonomy gives every individual the right to decide on the extent of treatment, it is interesting to examine the provisions of the law on this matter in India.
This is not at all about active euthanasia, or physician assisted dying which are prohibited in India by law. Autonomy is a matter of a healthy individual of “sound mind and body” who decides that if ever there is a situation where he is kept alive in the legal definition of the term, but dead in all other respects, he would not wish the agony prolonged with high tech equipment, but would prefer a peaceful death surrounded by family. Surveys have established conclusively, that the overwhelming majority would prefer to die at home.
The problem is that this enters a very grey area in Indian law. Making such an official declaration amounts to a “Living Will”. Justice Katju in the Aruna Shanbaug judgement stated: “In 1977 California legalized living wills, and other States soon followed suit. A living will (also known as advance directive or advance decision) is an instruction given by an individual while conscious specifying what action should be taken in the event he/she is unable to make a decision due to illness or incapacity, and appoints a person to take such decisions on his/her behalf. It may include a directive to withdraw life support on certain eventualities.” The key question is whether a “living will” is legally valid in India in the light of the concept of patient autonomy.
The Aruna Shanbaug judgment referred to the constitutional guarantee of the right to life as opposed to the right to die which the constitution does not provide for. The Gian Kaur vs. State of Punjab (1996) judgement upheld the right to a dignified life as well as a dignified death under Article 29. On 25-2-2014, the SC disposed of a writ petition (215 of 2005 -Common Cause v/s Union of India) which sought to establish the legal status of a “living will” relying on these two judgements. The doctors’ dilemma of his oath to save life conflicting with respecting patient autonomy and turning off life support, was also discussed. It may be mentioned that the Aruna Shanbaug judgement outlined a procedure for passive euthanasia so complex as to render it unworkable.
The writ petition judgement concluded: – “Accordingly, we refer this matter to a Constitution Bench of this Court for an authoritative opinion”. The matter remains pending before a 5 judge Constitution Bench. In other words the legal validity of a “Living Will” is still a judicial grey area. Yet if there is a proper living will backed by an affidavit and signatures of witnesses; and if the family agrees and requests so in writing, it would be extremely difficult for any hospital to refuse to carry out the directives of a living will.
The matter needs urgent resolution as there are a lot of people out there expressing their desire to “die peacefully”.
(Dr Gladstone D’Costa is the Chairman, Accreditation Committee and member, Executive Committee, Goa Medical Council.
