The right to execute a Living Will was given a nod last year by the Supreme Court, yet only 27% know what it entails. Experts tell SHALINI SAKSENA why this figure is worrisome & what can be done to overcome it
In a landmark ruling in march 2018, the Supreme Court had explained at length that “we need to understand that euthanasia is basically an intentional premature termination of another person’s life either by direct intervention (active euthanasia) or by withholding life prolonging measures and resources (passive euthanasia) either at the express or implied request of that person (voluntary euthanasia) or in the absence of such approval/consent (non-voluntary euthanasia).
In other words, it had stated: That human beings have the right to die with dignity, allowing a Living Will. However, it has set out strict guidelines that will govern when and how it is permitted. In a nation where relatives go to any lengths to save a patient’s life whatever the cost, the fact that the apex court allowed Living Will was remarkable.
More than a year later, a survey asked citizens what living well meant to them during last days of their life. The survey conducted with a sample size of 2,400-plus showed that 88 per cent wished for the independence to decide their line of medical treatment during the last days of their life rather than leaving it on their family. The survey also showed that despite having strong opinions about their last moments, only 27 per cent are aware about the concept of Living Will.
While the ‘living well’ factor may differ from person to person, most had a wish regarding how they want to live the last few moments of their life. The Supreme Court’s verdict on Living Will, withdrawal and withdrawing of life support becomes an important factor enabling people to ‘live well’ in their last moments. What we now wish is to have simplified process laid down to help people execute their Living Will.
Dr RK Mani, head of End of Life Care in India Task Force, tells you that the need for the survey was due to the rise in the population of the aged and rise in non- communicable diseases.
“In a situation like this there will be people who need to make their wishes and values known. Maybe not consciously, but they feel the need to make others know how they want to spend their last days. Since the SC’s landmark judgement, we wanted to know how much that judgement had percolated,” Dr Mani says.
The lack of awareness about Living Will is worrisome since there is a another survey that says that 83 per cent of people want to die at home — with their family. How does one decide and execute it? This rests with the Living Will. Even if the SC says that Living Will is valid, we are still struggling with creating awareness, how to do it and how to honour it.
“Another reason why there is such low awareness is that many confuse Living Will with euthanasia. But this is not the case. What is being debated is avoidance of excess treatment when there is no benefit. People should be in control of how you are being handled by recording your values and wishes,” Dr Mani says.
Dr Gaurav Thukral, COO, HCAH says that the worrying burden on the family and wanting a suffering free dignified end of life highlights the maturity of the Indian people in dealing with a difficult situation. “The values of putting needs of the family before your own was evident as 96 per cent of senior citizens who thought Living Will to be a relevant concept. They see it as an important way to reduce financial stress on their family while 93 per cent of respondents in the 25-35 years group found it relevant to put an end to suffering of patients on artificial life support,” Thukral says.
Living Will is a person’s right to live with dignity and how a person want to live his life. Active and passive euthanasia are just mediums. Just like in passive euthanasia, Living Will kicks in when the person writes down in clear words that under these circumstances the will needs to be executed. Any person of sound mind can make a Living Will. He will appoint a person who will then make a decision on behalf of the person who has made the will that under unsalvable condition, he doesn’t want to be put on ventilator.
This is the execution part of the Living Will. “Then comes the honouring part where the friend or family member needs to inform the hospital. But the problems occur in the execution itself; honouring comes later. Take an example. In the last five years, a lot has been done in organ transplant and there are clear guidelines laid down when the person is declared brain dead. The same needs to be done in Living Will like it is in several western countries,” Thukral shares and tells you that there are several challenges that will come while executing a Living Will.
First, we don’t talk of death till the person actually dies. We go with the ethos that the soul never dies, only the body does. Nobody plans for death in our country unlike the West.
Second, lack of awareness exists due to the stigma that is attached if the elderly are not taken to the hospital during the last days of their life. Statements like ‘they didn’t take care of the parents in their last moment and kept them at home’ are commonplace. Then there is son versus the daughter, where the son would be more practical than the daughter. All these social scenarios complicate the situation.
There is a reason why we don’t want to talk about death. Devdutt Patanaik, physician-turned-mythologist, says that the connection between religion and death is that religion gives meaning to death and explanations to what happens after death. Science has no answers.
He tells you that the reason why we are scared of death given that all our scriptures say that the only thing certain in life is death is not based on scriptures. “This fear is based on the idea of secret — that we attract what we think about. If we think about death, we will attract death. And the attachment to life is plain and simple. The same reason why leaders don’t delegate or retire, and behave like control freaks,” Patnaik says.
Thukral says that even though these are social complications, we forget the most important aspect here.
“We forget to factor in what the person wants. Does he want to live his last days where someone else has to change diapers for him?,” Thukral asks and tells you that there are safeguards to prevent foul play.
“Just one person can’t and doesn’t make the final decision. Like in brain dead people, there is not one doctor who takes the decision, it is a committee in tandem with the family members. Similar process can be in place for Living Will,” Thukral says.
Dr Mani says that the only misuse can stem from taking a hasty decision in withholding and withdraw the treatment even though there maybe cases — a rarity— where a forged document maybe submitted for which there can be safeguards. But this doesn’t and should not take away the right of the person to live with dignity. The question is how to go about it in practice. It doesn’t have to be a legal sounding document since we have the right to will even if not done in front of the magistrate.
Second, inherent to medical practice, there are protocols for safeguards. It can’t be unilateral done by one individual. There are standard operating procedures which needs to be followed. From the legal side, there has to be a constitutional right which is now there. But the problem is in its implementation. Majority of the time, the decision has to be down within hours or maybe days and not month. The courts’ procedures are not easy and nobody has the time — the family members or the doctors to go to court when their patient in on ventilator.
“Also, we can’t expect the legal luminaries nor the judges to understand the medical challenges on the ground. It is the duty of the medical professionals to educate them and advocate them in the interest of the patient otherwise the patient’s suffering continues as does the financial burden on the family. Therefore, an appeal has been made to the Government and appealing to SC to revisit the procedure for clarification and modifications,” Dr Mani tells you.
Some of the modifications include: To execute the Living Will you need to get signature of first class judicial magistrate which then needs to be archived with the district court digitally and in a hard copy. Many times, access to this can be difficult. The option can be getting the Living Will notarised or signed by two witnesses.
Second, in order to honour the will there are three levels which involves the hospital medical body, the district collector and the district magistrate. This is not feasible since end of life care is usually taken within a week.
People wanting to make a Living Will need to keep some key points in mind. First, anyone can execute it whether one is anticipating trouble or not.
Second, if you have a serious illness, there should be a discussion with the treating team on the treatment and the limits and what happens when the situation deteriorates or death occurs so that the family and the patient can express their apprehension and be prepared. This can even involve candid discussion with psychologists, counsellors and even spiritual guides. When there is a holistic approach to what one can anticipate, one can take the right decision.
According to Dr Mani, the importance of Living Will rests on the premise that death is inevitable. “There was a time when it came naturally. Today, due to advancement in medicine death now is unnatural— hooked on to medical equipment. In such a situation one becomes just another entity. Hence it is important to execute one,” Dr Mani says.