HOW DOES A desperately poor family cope with one of its members having a terminal illness and no hope of recovery but which would destroy whatever little financial security they have? In Andhra Pradesh’s Chittoor district, they apply to the courts for mercy killing. Two months ago, for instance, the parents of a six-year- old with a rare neurological condition did so, and, as is inevitable, the application was turned down. The parents were labourers in a cloth weaving unit. The Hindu article which reported on this case also said, ‘During the last six years, half a dozen families approached the courts in Madanapalle and Tamballapalle of the division, appealing for mercy killing to their members, mostly those with terminal illness.’ There is usually no intention of going ahead with the action. It is a means of bringing attention to their plight in a country inured to suffering. A gambit like this, understandable and even legitimate, however, has a side effect in the debate over the right to die in India, veering it into what makes the biggest headlines. Extreme instances dominate the discourse, making it difficult for a rational policy that would concern the average.
At present, a five-judge bench of the Supreme Court is hearing a public interest litigation filed by the NGO Common Cause on legalising Living Wills—advance directives by a person on what to do about pulling the plug should he be kept alive on artificial support and unable to communicate his desire to die. The Constitution Bench is also going to clarify the legal position on the right to die. In court, the Government argued that it had a draft bill on passive euthanasia ready but it was still not okay with Living Wills.
The Government’s bill was based on Supreme Court guidelines in 2011 in the case of Aruna Shanbaug, a nurse in Mumbai’s KEM Hospital who was raped, strangulated and remained in a vegetative state for 42 years. Aruna’s case, however, was an outlier and adds to the confusion between euthanasia and withdrawal of life support in ICUs of hospitals. Euthanasia is a deliberate action that leads to death, while what the medical community wants to address is how to make death easier for patients who are almost certain to die and are being kept alive through artificial means. The latter goes by the nomenclature of End Of Life Care. The distinction is important.
“In our country, we are all the time talking theoretically about whether there is a right to live or die, whether euthanasia should be allowed, is it socially acceptable, is it right by the person. We are not touching the core issue, which is, how to care for those people who are facing incurable or terminal illnesses. Or where treatment has completely failed. Not through putting them on ventilators and such interventions. It is through End of Life Care which involves palliative care,” says Dr Raj Kumar Mani, CEO (Medical) Nayati Healthcare and Chairman, Critical Care & Pulmonology.
In 2005, Mani wrote the first ethical guidelines on End of Life Care in India on behalf of the Indian Society of Critical Care Medicine. As an intensivist, he had got interested in the issue a few years earlier after noticing the large number of people who were unnecessarily going on life support even when death was imminent. “The first case of Do Not Resuscitate (DNR) was done in the US in 1974. Can you believe it? Forty years back. They were so far ahead of us because there medicine developed and so did medical ethics. What has happened in India—we easily adopted all new technologies, brought them into the country, but we did not care about the ethical framework. When intensive care technology developed only in the 90s in the country, how are we going with ethical codes that existed before the 90s? It has to evolve. To my horror, I found that we had absolutely no law, nothing in existence regarding DNR or withdrawal and withholding of treatment,” he says.
He went to a lawyer friend who gave him law books and Mani found only two case laws dealing with end of life. One was Gian Kaur versus State of Punjab in 1994 and prior to that there was P Rathinam versus Government of India in which the Supreme Court said that the law criminalising suicide attempts was antiquated, establishing a right to die. “But that was overridden by the Gian Kaur judgment in 1996 where they said that the right to die does not exist. But it also observed that right to die with dignity exists,” he says.
The guidelines in Mani’s 2005 paper was further revised over the years. “In 2014, ISCCM and Indian Association of Palliative Care together wrote a very well- researched document which is called ‘Integrated Care of the Dying’. Unfortunately, not a single [court] judgment, none of the lawyers have read these. Why do we mull over old questions all the time? We keep confusing DNR with euthanasia. We keep confusing any kind of refusal of life support [with] euthanasia. These are big errors,” he says.
DR JV DIVATIA, Professor and Head, Department of Anaesthesia, Critical Care and Pain at the Tata Memorial Hospital, Mumbai, was one of the members of a committee of doctors appointed by the Supreme Court to examine Aruna Shanbaug when it was hearing a petition to end her life support. While it rejected the plea, the court in 2011, however, laid down guidelines under which such a procedure could be done, thus legalising it. A key element was the need of a High Court sanction even after the family and doctors of the patient had made the decision. Many in the medical profession, Dr Divatia included, find this provision impractical.
The distinction between End of Life Care and euthanasia is important. The latter is a deliberate action leading to death, while the former deals with how to make death easier for those who are almost certain to die and are being kept alive through artificial means
He says, “A lot of people are talking about euthanasia, terminal illness, vegetative state, end of life care and withdrawal of life support. They appear to have a lot of intersections but are all quite different. A brain dead person is legally dead. Second is what Aruna Shanbaug was—in a vegetative state. A vegetative state patient is not on life support, is not going to die in the near future unless there is a complication. There is no question of withdrawing life support because she is not on it. At the most, she is getting artificially fed, that is the only artificial treatment being given to her. If someone wants to withdraw life support treatment to such a person, the court procedure is doable. Because there is time to go to the court and get an order,” he says. But the process is not feasible in most of the cases that come before doctors treating terminal end stage cases with no chance of recovery in ICUs, where death is being held off through machines and medication. “Because here, if you just let nature take its course, the patient will be dead in hours or days,” he says.
What his committee suggested to the Supreme Court was hospitals have an in- house committee giving approvals. This model already exists when it comes to organ transplantation. “It has to be something that can be done quickly to prevent excessive treatment, excessive charges and basically suffering to patients. When the dying process has set in, the final outcome will be death, the only difference being whether he dies after 30 days of full treatment spending lots of money or he does so after three days once we have all realised that nothing is going to work. That has to be a reasonable determination made by a doctor or a board of doctors. That is the way to go forward. But the court did not agree. They only trusted the courts to act as proper oversight for such things,” he says.
Dr Divatia believes what the Supreme Court rules on Living Wills now is very important for a number of reasons. “One, it is an expression of your right to decide what happens to you, an extension of right to privacy and autonomy. Second, it tells someone about the state of mind of the person. For example, while I am in a conscious and competent state, if I say that I do not want to be subjected to prolonged life support treatment if I am terminally ill or brain damaged or something like that, it is a statement of my intent. In future, my relatives, family, wife, treating doctors, will know what my intent was and it makes decision making that much easier,” he says.
THE REASON THE Government won’t legalise Living Wills is that it fears misuse. Dr Nagraj Huilgol, chief radiation oncologist, Nanavati Hospital, Mumbai, and also president of the Society for the Right to Die with Dignity, finds in it a reflection of the curious contradiction in modern Indian society’s approach to death.
“This is a country which looks at death in a very non-Abrahamic way—the idea of karma, the idea of cyclical birth and death, or in Janism wherein Sallekhana, dying while meditating, was the highest form of death. In fact I picked up from my library a thesis [in which] Jainism classifies something like 61 types of death. We looked at death in a very sober way, not as something demonic. In the Katha Upanishad, Nachiketa, the boy sage, wants to know what is the ultimate truth about life and death and beyond. He goes to Yama [the god of death] and treats him as an entity which is also a custodian of the ultimate truth. Very often we say intellectually we are still colonial slaves. We get stuck to our Western idea of birth and death,” he says.
He says that even though the law is unclear about withdrawal or withholding of treatment, some form of it is already in practice in the medical community. “Through jugaad we have come out with our own system of passive euthanasia where somebody starts DNR and de-escalating treatment. But it is nebulous and can be contested,” he says.
Dr Huilgol also doesn’t buy the Government argument that a Living Will can be misused. “Most of the countries where a Living Will is a legal document, I don’t think there is any evidence to support [the charge that] it has been misused. Any law can be misused. There must be enough safeguards,” he says.
Apathy towards quality of death is also evident in how little we are concerned about reducing pain in the final moments. In 2015, The Economist Intelligence Unit came out with a Quality Of Death index, a survey rating countries by palliative care. India was at the bottom, ranked 67 out of 80 countries. Its profile on India noted, ‘Excessive bureaucracy limits access to pain medication, and opiates are under tight legal restrictions. Furthermore, doctors are not trained in dosage and use; thus most do not utilise effective pain management treatments. The need for psychosocial support exceeds available resources… On the whole, most terminally ill Indians are unaware of palliative care options and do not benefit from pain alleviation prior to death.’ But there was one notable exception in the state of Kerala. ‘Kerala’s palliative care system stands out as a model for the region. Local authorities effectively harnessed centrally devolved power to set up clear state guidelines and adequate funding. However, at the national level India faces major shortages in specialists and facilities, and lacks coordination,’ said the report.
Dr MR Rajagopal, founder and chairman of Pallium India, an NGO that highlights palliative care, has been instrumental in making Kerala focus on the issue. He blames India’s poor ranking on health care turning into an industry with profits and not service as its prime motive in the last three or four decades. ‘With the popularity of new diagnostic measures like CT and MRI scans, our ability to diagnose diseases (and therefore to cure) improved, but concurrently there was a decrease in personal interaction between the patient and the doctor. As the disease became more important than the person, ‘suffering’ became less and less a focus, death became the enemy and attempts at prolonging life at all costs became commoner. Eighty per cent of healthcare in India being in the private sector, with the increase in high-tech corporate sector of the healthcare industry, especially in the absence of pain relief, end-of-life came to be either total rejection of the poor patient with no relief of pain or other suffering offered at the end of life or inappropriate and painful life prolonging treatment for the rich,’ he says over email.
He finds the Government’s reluctance to legalise Living Wills unacceptable because it violates the fundamental right to life with dignity. ‘I believe I have that right till my very end, and have the right to protect myself with the Living Will (advance directive) against the onslaught of the medical system which will violate my body even when I have no chance of recovery, hook me up with a tube in every orifice and cables connecting me to machines while at the same time leaving me imprisoned in isolation in pain and suffering, in the process destroying my family financially,’ he says.
Dr Mani says the impracticality of the existing process for withdrawal of life support, as laid down by the Supreme Court in 2011, is evident in that there has not been a single application by families of patients till now. “This ruling has never been utilised at all, it can never be. That is why finding these flaws, the SC has decided to review all these things,” he says.
He expects the court to come to a decision soon and is optimistic that it will legalise Living Wills. After that, there is still the necessity to make the procedure as simple as possible, but it will be a huge step forward. He says, “Accepting a Living Will means we accept the patient’s autonomy, preserving a very precious right every citizen has.”