The End of Life

There are ethical and legal complexities with treating terminally ill patients in India. There is a thin and grey line between palliative care and assisted suicide. We need clear legislation regarding living wills and the right to die with dignity.

This article was first published in The Mint. You can read the original at this link.

As regular readers of this column might have already gathered, I am bullish on the future of medicine. Advances in DNA sequencing, a better understanding of the gut biome and the ability to monitor ourselves 24x7 using wearable devices has allowed us a better understanding of the workings of the human body. But despite the hope these advances hold out for the future, there are still vast empty spaces in our knowledge. [[Cancer]] and other terminal illnesses are an uncomfortable reminder of the amount we have still to learn about the way our bodies function and how to fix them when they fail.

While treating the [[terminally ill]], doctors are forced to tread a treacherous path. Whatever course of action we choose, our outcomes are circumscribed by the limits of human understanding and modern science offers scant hope for full recovery. Yet doctors, bound by ethical and legal obligations, are obliged to utilize all the technologies at their disposal to keep patients alive.

At some point down this path, when medical complications begin to develop, treating physicians have difficult decisions to make about what they should do next. Do they keep their patient alive at all costs—using [[life support]] if needed—or limit themselves to simply treating symptoms as they present themselves, keeping the patient as comfortable as possible as the end draws near?

In anticipation of decisions such as these, terminally ill patients often issue explicit directions to their medical team stating that, in the event their condition becomes terminal, it is their desire that they should receive treatment to manage their symptoms but not artificially prolong life. These instructions, recorded in the form of a “living will" or specific “do not resuscitate" instructions, are handed over to the hospital at the time of admission. These patients expect their treating physicians to refrain from performing CPR or other life-saving interventions, when their condition worsens, but instead keep them comfortable towards the end of life.

As much as this is an autonomous decision taken by a patient of sound mind, there are important legal implications to consider as the line between palliative care of the terminally ill and assisted suicide is thin and grey.

The Supreme Court, in the case of Aruna Shanbaug vs Union of India, was called upon to determine whether the right to life included the right to die with dignity. The court held that doctors cannot do anything that would result in the patient’s death—even if she happens to already be in a permanent coma. An earlier decision of the Supreme Court made it clear that euthanasia is illegal in India and can only be made lawful by legislation.

As a result, medical practitioners today cannot initiate any action that results in the cessation of life earlier than in its natural course. These judgments make no distinction between active and passive euthanasia and have not gone into the question of the validity of a patient’s express instructions as to end-of-life treatment. Current law, is therefore, annoyingly silent as to the legal sanctity of a living will.

Arguments in favour of treating terminal diseases with a constant focus on cure are rooted in a doctor’s ethical obligations towards his patient. But this ethical construct was developed before the advent of modern life-support systems. It bears mention that those systems were designed to allow patients with a normal expectation of life the opportunity to extend it despite the intervention of an incident that threatens to curtail it. To be required to deploy life support even in conditions where modern science has no cure seems to be the equivalent of extending life beyond the ordinary course dictated by their terminal condition.

Scientific literature suggests that aggressive cardiopulmonary resuscitation, when applied to patients displaying end-of-life symptoms of a terminal disease, has little to no effect on the final outcome. On the contrary, artificially prolonging life at this stage leads to distress and suffering, unwarranted by a terminal prognosis. That said, given the judicial decisions that clearly prohibit medical treatments that could result in the cessation of life sooner than otherwise possible, it is possible that this sort of treatment strategy could be viewed as equivalent to passive euthanasia.

In my view, this is unfortunate. Implicit in the right to life is the right to live with dignity and the state must allow terminally ill patients the ability to choose, of their own free will, the path they wish to go down in the final days of their lives. Recognizing the seriousness of the issue, the Supreme Court has referred the matter to a Constitution bench for an authoritative opinion. But that should not stop the legislature from passing a law that makes the position clear.