Does right to life include advance directives?

The Supreme Court has held that right to live with dignity includes within it the obligation to smoothen the process of dying for terminally ill patients who have no hope of recovery but has imposed too many bureaucratic processes on the exercise of that right.

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

Almost a year ago, I wrote an article about the moral challenges with extending the life of terminally ill patients beyond the natural length dictated by the illness. If the article seemed inconclusive it was because it was written shortly after I lost a friend to cancer and the wounds were still raw. At the time, the law on the subject was unsettled and the piece was a lament about the legal uncertainties that made these situations hard to deal with.

Last week, a Constitution bench of the Supreme Court bravely attempted to resolve, at least in part, some of this uncertainty.

There is little argument that involuntary euthanasia—where the patient’s life is terminated without consent—is illegal. Since it is hard to effectively distinguish between the administration of a lethal injection for the purpose of alleviating pain and suffering, and murder, it is probably best to leave these issues for resolution by the legislature. And so the Supreme Court, rightfully, focused its attention on passive voluntary euthanasia—where the patient has decided to forsake medical treatment while still in complete possession of his/her faculties.

Unfortunately, even after the patient has provided informed consent as to the details of end-of-life treatment, the law makes it difficult for attending physicians to abide by these instructions. The Indian Penal Code criminalizes the commission of any act that is carried out with the knowledge that it is likely to cause death. It provides no exception for situations where terminally ill patients have consented to this course of action. Doctors who refrain from putting their patients on life support when they need it, know that their decision will cause the patient to die and consequently run the risk of being held guilty of a crime.

In India, these considerations are often exacerbated by economic factors. Life extending treatments are expensive and beyond the capacity of poor families to afford. Under these circumstances, do we really want to insist that doctors and medical establishments administer these treatments even when the patient’s family can ill afford to pay for them—and when they have received explicit instructions from the patient not to do so?

At a certain stage in the progress of a terminal disease, it is often in the best interests of the patient to switch the focus of treatment from trying to cure the disease to palliative care. Science has shown that when patients are relieved of the extreme pain and discomfort that accompanies end-stage diseases like terminal cancer, they live out their days in greater comfort. As a result, they often live longer than they would have had their body been pumped full of drugs in the mindless pursuit of a cure. However, for any patient who decides to go down this route, cure is no longer an option. As a result, any recommendation of palliation over cure raises hard questions of moral equivalence. If a doctor has tools available at his disposal to potentially cure the disease and he chooses not to use them, is he not guilty of allowing, by such inaction, the person to die?

The reason we are faced with these tough choices is because of rapid advances in modern medical science. We now have many tools at our disposal that allow us to prolong life even as the body shuts down against the onslaught of a deadly disease. Yet, when we deploy these tools, we are allowing technology to alter the very nature of life itself. The Supreme Court was acutely aware of this new reality and its entire decision revolved around the need to re-evaluate the relationship between technology and the meaning and quality of life.

After a detailed analysis of the jurisprudence around the world and in India, the court held that the right to live with dignity includes within it the obligation to smoothen the process of dying for terminally ill patients who have no hope of recovery. Accordingly, doctors who abide by the wishes of terminally ill patients expressed through advance directives are not guilty of having committed a crime or operating in violation of their ethical obligations as medical practitioners.

That said, the court could not resist the need to stipulate safeguards to ensure that advance directives are not misused. The judgement sets out details of how the document needs to be prepared, requiring that it be signed by the patient, attested by two witnesses and countersigned by a judicial magistrate. Before carrying out a directive, the hospital is required to inform the collector who has to constitute a medical board to separately evaluate whether or not the directive should be carried out.

This is where the judgement falls short. In its attempt to avoid misuse, it has imposed bureaucratic processes that ignore the reality of how terminal illnesses evolve. Patients often deteriorate rapidly—too soon to consult with the collector or to constitute a board. If doctors have to follow these new procedures, they will have to put their patients on life support till they get the approval of the medical board defeating the very purpose that the judgement set out to achieve.

What is, perhaps even more unfortunate, is the lack of reference to palliative care and the need to allow doctors the freedom to recommend these options without fear of recrimination. As important as it is to use technology to cure aggressive disease, we must recognize that we will, sometimes, need to accept defeat.