The Right to Choose Dignified Death at the End of Life: A Welcome Paradigm Shift in India
Advances in medicine, technological interventions and refinements of care protocols along with increasing life expectancy have resulted in considerable dilemmas for both physicians and the public. An increasing number of patients who are of advanced age or of incurable illness often expect, and are offered, aggressive life-saving procedures. The physician is, somewhat unrealistically, expected to save lives under all circumstances. However, little attention is paid to the quality of life as a consequence of successful resuscitative attempts that only serve to postpone death or to prolong life in a virtually vegetative condition. The subject of medical futility and its adverse impact to the individual and the society is not openly explored in medical training or in public discourse. A thoughtful holding back of aggressive interventions in the face of medical futility is expected to cut short the dying process but would save the patient much imposed suffering. Also, there is little focus on the loss of dignity of the patient and the immense emotional trauma and financial burden to the family when disproportionate efforts to save a patient are made. There is always a lurking doubt in the minds of caregivers and family that they may not be doing enough to save the patient. And balancing this with the genuine intention of not putting the
patient in more pain, weighs heavily on them.
The judgment of harm exceeding benefit of a medical intervention and timely shift to a more holistic care focusing on comfort and palliation has to be made by the bedside, and this needs training and expertise. In such circumstances, the professional consensus is to prioritize Patient Autonomy i.e., to take into account the wishes and values of the patient, expressed either directly or through his/her family. This must always be coupled with the physician's obligation to act in patient's best interest, without doing harm to the patient as a whole person. A shared decision-making model between the patient or family and the caregivers is ideal in today's world.
The centrality of patient Autonomy is clear as per the mandatory need of consent and the recent Supreme Court verdict validating Advance Will to record one's wishes regarding treatment, which is effective when one becomes incompetent to convey them directly. The judgment Common Cause Vs The Union of India of March 2018 thus provides clarity on withdrawing and withholding futile treatments based on patient autonomy that would hugely reduce aggressive interventions and the physical, emotional and financial burdens that go with them. This would also have beneficial impact on caregivers' moral burden, potentially freeing up medical manpower and resources for salvageable patients especially in our heavily resource-constrained environment.
The Living Will is thus a legally valid instrument that can be executed by anyone and can be revoked or modified. Its implementation is through a medical process with safeguards as per benchmarked clinical pathways. The actual contours of the legal framework are being worked out by the Ministry of Health and Family Welfare, Government of India.
Withdrawal and withholding decisions are common all over the world. They are not regarded as accelerating death as it is merely an act of 'non-interference' with a disease that is driving the death process. They should not be confused with active euthanasia or physician- assisted suicides- the acceleration of death through an intervention of a lethal injection, which are not legal in India, although increasingly allowed in several parts of Europe and North America.
The right to life issues relate to active shortening of life as opposed to avoidance of futile medical interventions. On the issue of the right to death, the Supreme Court has clarified that the right to life enshrined in the Constitution includes the right to a dignified death. *Dr Narottam Puri, Advisor-FICCI Health Services; Board Member & Former ChairmanNABH and Advisor-Medical Operations & Chairman-Fortis Medical Council, Fortis Healthcare and Dr RK Mani, Chair-FICCI Task Force on Living Will & CEO and Chairman-Critical Care, Pulmonology & Sleep Medicine, Nayati Healthcare.
An honest discussion on the efficacy of proposed treatments should be done and the patient's choices and refusal of aggressive interventions should be respected. Economic impact of expensive medical interventions is of catastrophic proportions – driving up to 50 per cent of families of patients in ICUs to debt or even bankruptcy.