Living Will is the first step

The Supreme Court had recently given a verdict allowing persons to create a Living Will – specifying removal or discontinuation of life-support to a person in a permanently vegetative state due to brain death and who is surviving due to medical life support. This is a historic judgment. It will benefit many who are in such stage of a meaningless life. It will save money for their family members who have to bear the burden of financing and supporting such care. Hospitals may lose some revenue, but it will be made up by vacating such beds for more serious and savable patients needing urgent care.

This is the first step in the process of ending needless suffering. The next step will be to set up mechanisms to implement the judgment quickly and efficiently with proper administrative arrangements. Acts and judgments do not mean much unless they are implemented well.

So, the first duty of the government will be to make administrative arrangements for such cases and then the proper mechanism to scrutinise them quickly and then allow hospitals and doctors to stop medical life support. All of these need a rapid, decentralized mechanism – not the long bureaucratic and legal system which takes months or years. The purpose of the living will be defeated if it takes more than one month to take it from application to the end of life.

Hospitals today charge anywhere between Rs 5000 and Rs 50,000 per day for intensive care and life-support. Cost of delay due to bureaucratic procedures could bankrupt the family. Of course, proper safeguards need to be in place so that this living will is not misused as a license to kill. Deep thought is required to create such safeguards, which will not delay the process but give due protection.

The second point is that this SC judgement has been called “Passive Euthanasia”. Some dictionaries do have a term “passive euthanasia” which is defined as: “a form of euthanasia in which medical treatment that will keep a dying patient alive for a time is withdrawn”. This, to me, is a complete misnomer. The meaning of euthanasia is “the painless killing of a patient suffering from an incurable and painful disease or in an irreversible coma” or “Mercy killing”.

What the court has allowed is for a person to exercise his free choice on not taking any treatment or discontinuing any life-saving or life-sustaining treatment if he or she becomes permanently brain dead but the heart and lungs are made to work with life-support systems, what is called as a permanent vegetative state.

Removing life-support system will lead to death. But it cannot be called “Euthanasia” or “killing” for mercy. What we are doing by removing life support is to allow the disease to take its natural course of progress which will lead most likely to death – and this is purely based on the sweet will of the individual – a living will. This should be and is based on the fundamental right to life and liberty– to refuse treatment.

To force treatment on an unwilling person is a crime. Thus, Passive Euthanasia is not a correct way to describe the situation which happens by living will.

I earnestly urge the medical community, society and the legislature to move one step further to think about allowing euthanasia. There are so many patients in terminal stages of cancer and other diseases where medical treatment is not at all curative but can only prolong a very painful, passive, debilitated and dependent life by few months or a year. In this process the family finances are wiped out – a lifetime of earning can be lost in few last months of painful existence of a moribund person.

Our public health system is so incompetent that people, with a good chance of survival, die or suffer due to poor care, inadequate attention and paucity of resources. Where do we have space and resources to provide pain-free prolongation of life of terminally afflicted patients? Many times such patients are advised informally by hospital staff; or relatives may insist on “Discharge Against Medical Advise”, so that the patient dies at home in a short time at no cost to the family rather than living painfully for a bit longer in a hospital and draining precious family resources.

The time has come to take the next step of thinking seriously about mercy killing (actively) of terminally-ill patients with no hope of survival or cure. We have around 2.5 million people living with cancer. Every year 7 lakh new cancer patients are added and 5,56,400 cancer-related deaths happen. I am sure many cancer patients in their terminal stages would like to exit from life at their will rather than suffering pain.

We are not alone in this. Several states in the US and some European countries have allowed euthanasia. We do it to seriously injured animals or our own pets who suffer badly with no hope of improvement. Why are we so reluctant to think of the same for humans? We are mortals. Of course, any such actions have to have huge safeguards to prevent slightest chances of misuse. But is it just to let thousands of people suffer excruciating pain waiting for a natural death to happen? Let us be bold and take the next step to remove pain from the lives of those unfortunate humans.

The writer is Director of Indian Institute of Public Health Gandhinagar. Views expressed are personal.