Zoraya ter Beek is an attractive 28-year-old Dutch woman who is scheduled to die in May. She has depression, autism, and personality disorder in addition to a boyfriend and two cats. Both she and her psychiatrist have given up on her life. If done by due process, she can choose to die by lethal injection. This is an acceptable expression of individual autonomy in the Netherlands and is referred to as euthanasia. Unfortunately, euthanasia is a garbage bag of a term, especially beloved by Indian law and media. It confuses and distorts our understanding of end-of-life care. Unless we give up on using this term we cannot progress further.
My friend TK, had a labrador that finally died at the ripe old age of 18. When the dog passed on, he could barely move because of severe arthritis, he was incontinent and he was a big dog. Taking care of him was a huge effort. But TK and his family loved him and the dog loved them back and emotions ran high when they decided to take him to the vet for a final injection. This is perhaps the only appropriate use of the term euthanasia. It applies to animals and not to sentient human beings.
Some 20 years ago, a friend of mine was a senior resident in an ICU in London. One evening one of the patients, MJ, suddenly had a cardiac arrest. The defibrillator was used, the patient’s body jerked violently and the heart restarted. Minutes later, it happened again and then, after some time, again. Finally, it settled down. An hour later the patient was fully conscious and coherent and he asked for the doctor on duty. My friend reached the bedside. MJ held his hand firmly and said, “Doctor, you will not do that again to me! Let me go in peace.” My dumbfounded friend could only nod. The next morning, the patient was moved out of the ICU, and discharged, and he passed away at home a week later. We term this foregoing life support or Do Not Attempt Resuscitation (DNAR) or Allow Natural Death. This is part of the umbrella concept of Advance Care Planning, in which an individual can plan for their own last days. These instructions come into effect during life (hence the need of a Living Will, in which a person stipulates what kind of end-of-life care they want, and who should be responsible for implementing it) when the individual can no longer express or communicate her own wishes. When the patient above decided to refuse cardiac resuscitation, performing it would be seen as an assault and not as a standard medical procedure. In India, we use the term, passive euthanasia instead, to honour the wishes of the dying to die in peace.
About three years ago, a man in his 30s walked into a Dutch hospital with his wife. An hour later, he was dead by the injection of a lethal dose of a sedative. He had a clear genetic diagnosis of early-onset dementia. He had seen enough of his relatives dying in their 40s and 50s due to it, and he was sure he did not want that for himself. The Dutch medico-legal system supports this kind of decision-making under the aegis of Medical Aid in Dying or Physician-Assisted Suicide. As of now, 11 countries around the world have legalised this, and the list is expanding. But the practice is heavily circumscribed by medical and legal requirements. For instance, if Zoraya’s doctors do not strictly follow due process, they can be charged with murder.
The dark history of the word
For humans, euthanasia is a word with a dark and sordid history. A little over a century ago, towards the end of the WWI, Germany was facing imminent defeat, short of everything including food. This led to the rise of the concept of useless mouths. Almost 70,000 institutionalised and dependent neurologic and psychiatric patients were starved to death. Between WWI and WWII, Germany went through terrible privations, and the term euthanasia, or good death, began to take hold among the general public. In an atmosphere of hate, it soon began to be applied to those deemed as lesser beings, and who did not deserve to live. Just before WWII, the Nazis began the gas chambers and they first experimented on neurology and psychiatry patients, causing almost 100,000 deaths. The German medical profession was largely complicit in this horror. Eventually, the Nazis did this to Jews, as well as gypsies and homosexuals among others. Euthanasia merged into genocide.
Legal scape in India
In March 2018, the Supreme Court pronounced the validity of our right to autonomy in healthcare choices, with a right to dignity in life till the very end and hence dignity in dying and death (Common Cause and others v Union of India). This was the second of a triptych of remarkable judgments — the other two being on the right to privacy (Puttaswamy v Union of India, delivered in August 2017) and sexual choice (Navtej Johar and others v Union of India, delivered in September 2018), which hauled the political concept of liberty from the Indian Constitution into our personal space.
In the words of the then Chief Justice Dipak Misra, “a competent person who has come of age has the right to refuse specific treatment or all treatment or opt for an alternative treatment, even if such decision entails a risk of death. The ‘Emergency Principle’ can be given effect only when it is not practicable to obtain the patient’s consent for treatment and his/her life is in danger. But where a patient has already made a valid Advance Directive which is free from reasonable doubt and specifying that he/she does not wish to be treated, then such directive has to be given effect to..”.
This is now the law of the land, which unfortunately few, including doctors, are aware of.
In the Common Cause judgment, the judges ordered the involvement of a judicial magistrate to validate Advance Directives and for to bring them into effect. This condition was impractical and onerous and the judgment became operative only when it was simplified in January 2023 by removing the need for judicial sanction. This finally allows Indian citizens to take charge of their own last days, if they choose to do so, without obstruction from the law.
The bigger obstacle
To take charge of our last days, we need to individually and collectively be willing to accept when we are in the last stages of life. Death discussion and literacy must no longer be taboo. We then need to elaborate and document our wishes in Advance Medical Directives as a part of Advance Care Planning. When it becomes obvious to doctors that further treatment will not help, regulations have to be put in place to withdraw or withhold (forgo) life-sustaining treatments and to allow the dying to die in peace. Once our jurisprudence and medical systems are familiar with all of this decision-making, only then can we begin to evolve to the final stage of Medical Aid in Dying (MAiD).
We estimate it will take India at least two or three decades to evolve to the level of the Netherlands where if you suffer from a terminal disease, and if you choose to end your suffering, the state is not a hindrance but an enabler. By then perhaps we will be familiar with palliative care, advance medical directives, forgoing life support and do-not-attempt-resuscitation orders — and the term euthanasia will have died a natural death.
This piece has been co-authored by Dr Roop Gursahani, Dr Raj Mani and Dr Srinagesh Simha, who form part of the steering committee of the End of Life Care in India Taskforce (ELICIT), formed by the coming together of the Indian Academy of Neurology, Indian Society of Critical Care Medicine and Indian Association of Palliative Care. The views expressed are personal.
