A few years ago, a Canadian social scientist asked a large gathering of doctors in Asia how many of them would wish to die in a hospital, like their patients. A hush fell over the audience and no hand went up. Doctors do take pride in their profession and firmly believe that hospitals can save lives and restore or improve the state of health in many seriously ill patients. However, they have also often seen the sad spectacle of terminally ill and comatose patients being tethered to tubes and run by machines in a state that offends human dignity. Little wonder, then, that doctors cannot visualise their own final passing as captives to the technological tyranny of intensive but insensitive care.
My mother was an obstetrician of repute who helped to bring many a new life into the world. As she approached death at 90, she was very clear she wanted her passing to be at home. Gentle but firm, as always, she said “no tubes, no wires and no ventilator”. I, and a large extended family of many doctors, honoured her wishes even as we provided end of life nursing care with all the love that we wanted her to feel and all the sadness we wished to hide. She died in peace.
However, that choice is mostly denied to persons who die in a hospital. There, the decisions on treatment are taken by doctors who have been trained never to give up and are psychologically conditioned to see every death as a professional defeat. Doctors in hospitals feel duty bound to try every device and drug available to them to prolong life as much as possible. Even if it violates the body and damages the dignity of the dying patient for whom there is no hope of revival.
Under those circumstances, the close family too feels helpless. Can they tell the doctors to give up those futile efforts, without experiencing guilt that they are hastening the death of a person they cannot bear to lose? Even if they steel themselves to do so, how will they overcome the doctors’ refusal? So the distressing saga of medical assault continues, with a misplaced sense of duty that defies sensibility and defiles human dignity.
The only escape from this torturous trap is to write a “living will” when one is of legal age for independent decision-making, fully conscious and in sound mind, clearly stating one’s wish to avoid resuscitative procedures and life support systems that cause protracted physical suffering or prolong a life of irredeemable pain. Such a will must, however, have legal sanction to liberate both the doctors and the family members from the obligation to continue intrusive terminal care.
The Supreme Court of India has now provided that much needed legal endorsement to the validity of a living will, in an erudite, eloquent and impassioned judgement. The court was careful to distinguish it from suicide, physician assisted suicide or euthanasia. The patient’s right to refuse unwanted treatment is recognised and respected, when that decision is made in advance, anticipating a grave medical situation wherein volitional consent can neither be given nor withheld. Safeguards against misuse are to be provided, through medical boards which will examine the relevance of the living will in the context of the clinical profile and prognosis. Judicial review is also a potential avenue for appeal.
The issue of “passive euthanasia” poignantly came to the fore for judicial scrutiny in the case of Aruna Shanbaug who lived in a vegetative state for 42 years in a Mumbai hospital after a violent sexual assault. In a landmark judgement of 2011, the Supreme Court issued guidelines for permissible “passive euthanasia” which involves withdrawal of life support (treatment, nutrition or water). The court averred that the decision must rest with parents, spouse or a close relative, in whose absence a “next friend” is empowered to take that decision in the patient’s interest. That decision must be upheld by a high court.
In Aruna’s case, there was obviously no living will as that young nurse could have scarcely foreseen that horrible future. However, each of us who is alive and in a state to decide on how we wish to navigate the final passage can now write a “living will” to assert our right to depart with dignity. The Supreme Court has affirmed that the right rests with the individual, provided it is a rational decision stated in advance. We cannot decide when and how we will die but we can decide on how not to die. Apart from dealing with the inevitability of death through stoicism, the court also invites us to see death as a “celebration” of a life well lived without the avoidable agony of terminal traction clouding those memories.
In writing such a living will, we can state the conditions under which we do not wish to have life support instituted or prolonged. By doing so, we spare ourselves the indignity of being traumatised by unhelpful medical interventions that doctors resort to from compulsion rather than conviction when dealing with a terminally ill person in a vegetative state.
Equally important, we can spare our loved ones the agony of helplessly watching us painfully waste away while being plagued by doubts on what they should do for us in that situation. Perhaps that is the best parting gift we can give them, even as we ease ourselves out of a life that is not worth being stretched further at the cost of prolonged suffering. A graceful exit is now possible, thanks to the Supreme Court. I salute the judgement — as a doctor, caring family person and one who is about to write a “living will”.