The fight for dignity in death
When life becomes unbearable because of terminal illness or chronic disease, isn't euthanasia a logical option for the person who suffers? Every person is entitled to dignity in death. So, isn't it time to review our laws?
Photo: K.K. Mustafah
Tough choices: When the pain becomes unbearable.
Life is a miracle that never ceases to fascinate doctors, scientists and researchers alike. In the same breath, one must add that the line between life and death is rather thin. Where there is life, death is pretty much a given, though the manner and time of death are often not in human hands. Fatal injuries, terminal illnesses and life-threatening disorders all play a part in snuffing out lives, sometimes instantaneously, sometimes after a prolonged and extended battle. Yet, in recent times, when people are racked by unbearable pain from a terminal illness or when the prognosis looks extremely bleak or when day-to-day care becomes a huge burden and grossly violative of human dignity, the E word — Euthanasia — is actually being thought of and articulated in a country that is pro-life and where the legal system does not permit it at all.
What exactly is Euthanasia? It is a word that has its origins in the Greek language and when loosely translated means ‘good death'. According to the Indian Society of Critical Care Medicine Committee for the Development of Guidelines for limiting life-prolonging interventions and providing palliative care towards the end of life , “Euthanasia is the intentional killing of a patient by the direct intervention of a doctor ostensibly for the good of the patient or others. ”
According to Dr. Mrinal Sircar, Senior Consultant and Head of the Department of Pulmonlogy and Critical Care, Fortis Hospital, Noida, “Euthanasia (active killing) is a strict no-no both ethically and legally.” Making a pointed reference to other related terms in circulation like “passive euthanasia” which is taken to mean and encompass actions like withdrawal of life support systems, e.g. turning off a respirator, stopping medications or food and water and allowing the person to dehydrate or starve or not delivering CPR (Cardio Pulmonary Resucitation), Dr. Sircar says these are phrases that have been coined by people along the way. “Euthanasia is active killing. Withdrawal of treatment is a different issue and does not qualify as euthanasia.”
Drawing attention to a critical difference between the West and India regarding withdrawal of treatment, Dr. Mrinal Sircar explains, “Withdrawal of treatment, mainly intensive care support when considered medically fruitless in a patient considered to be beyond the point of no return, is routinely practised in the West. It is estimated that 80 per cent to 90 per cent of deaths in the ICU in the UK and the US happen after such withdrawal of support. This is firmly grounded in evidence-based medicine and is also backed by the law in these countries. Unfortunately, no law explicitly exists in India either for or against such withdrawal of treatment. This unfortunately leads to aggressive treatment being continued in patients obviously beyond the stage of being medically useful, as doctors are reluctant to take the obvious course due to fear of possible legal complications later. This in no way helps such patients e.g. those with disseminated malignancy, severe irreversible brain damage, severe sepsis with multi-organ failure who continue to go downhill despite best care etc and leads to wastage of resources, unnecessary cost to the family and denial of such resources to other patients needing such care.. Such withdrawal of useless treatment or decision not to escalate support or orders for ‘ do not resuscitate' are backed by law of the land in the western world and always takes place with the consent of the family and patient (if latter is in a state to give consent). Occasionally when families and doctors do not agree, orders have to be obtained from the court of law. With availability of advanced treatment facilities in India we need laws to keep pace. Withdrawal of treatment, limitation of treatment escalation is not the same as Euthanasia. The lay press often makes that mistake of taking one to mean the other.”
At the crossroads
Dr. Sunil Shroff, Managing Trustee, MOHAN Foundation and Professor and Head of the Department of Urology and Renal Transplantation, Sri Ramachandra Medical College and Research Institute, Chennai, states: “If we in the medical profession follow the Greek physician Hippocrates' traditions and Oath — "To please no one will I prescribe a deadly drug nor give advice which may cause his death”— then any form of euthanasia would be wrong. However, since times have changed, the medical profession is at crossroads and doctors are often left to decide on behalf of their suffering patients. Some doctors who take care of terminally-ill patients or those suffering from chronic neuro-degenerative conditions with very poor quality of life believe strongly in euthanasia while others who do not see such patients are either non-committal or have no firm views on this subject.”
Under what circumstances is Euthanasia sought? Explains Dr. Sunil Shroff: “There are generally two types of cases where euthanasia requests are made — in terminally ill patients with cancer suffering from intolerable pain where most of the options to control pain have been exhausted. Having said that, with modern pain management strategies, we can take care of 90 per cent of the pain but such centres offering it in India are few and far between. Sometimes the requests come from patients themselves and at other times from relatives. In these situations to practise euthanasia the physician will have to increase the dose of pain killers and sedatives or inject a lethal drug (both of which are legally unacceptable in India).
The second is a patient in a state of prolonged coma where the day-to-day care of the patient needs institutionalising and the family is not able to afford such care or a patient in ICU for a long period where a request is made to withdraw life support to hasten death.”
Sister Lalitha Theresa of Jeevodaya, a home for terminally-ill patients, recoils in horror. “How can we kill? I have no right on the life of someone else or my own life. We have not come into this world out of our own liking. It is a gift from god. We prepare our patients for death which we consider a normal event. We help them to breathe their last in an atmosphere of peace and calm. One who has come into the world has to die. But one cannot kill. Euthanasia cannot be justified. The human psyche is such that today a person might, out of pain or distress, say that he wants to die and it is quite possible that tomorrow he might change his mind. We cannot gauge the mind of a patient. Also nobody really likes to die.”
According to Dr. Amit Agarwal, Oncologist, Fortis Hospitals, Noida, the key issue in the debate is “absolute lack of public awareness and clear-cut legal directions on end-of-life terminal care. Whenever we are in a situation where nothing is going to be achieved by aggressive, life-sustaining treatment in a terminally ill patient, we honestly tell the patient and the family and take into consideration what the patient would have wanted. We also do everything to make the patient as comfortable and pain-free as possible.”
Providing a legal perspective, Jayna Kothari, an advocate practising in the Karnataka High Court says, “In India euthanasia or mercy killing is not permitted legally. If someone assists in mercy killing or commits it, then that person can be held liable for abetment of suicide under the IPC Section 306 or become punishable for culpable homicide not amounting to murder under Section 304 (by virtue of attracting Exception 5 to the said Section 300 where consent of deceased is obtained) and when there is an intention to kill on the part of the doctor such cases would fall under Clause 1 of Section 300 of IPC). That is why in the Aruna Shanbaug case the journalist has filed a petition in court seeking permission of the court to stop her feeding because otherwise she would be guilty of any of these criminal offenses. In countries like the US and the UK the courts have permitted the terminally-ill to refuse life-sustaining treatment and have not held doctors or family members liable for this if consent of the person was obtained. It is a very difficult situation in India because we have always been very much pro-life. On the other hand, our constitution also lays great emphasis on the right to dignity. And although we have not yet articulated a right-to-die as have other Western countries, we have strong articulations of what the right to dignity entails.”
Euthanasia represents a huge ethical and moral dilemma. “One of the reasons is that the advancement of science has created more ethical and moral issues in a society which has not advanced as rapidly as the science itself,” points out Dr. Sunil Shroff.
For most doctors who have been oriented and trained not to do harm, active euthanasia amounts to nothing short of murder.
Most religions also support the view that life is sacred. However, those who put personal autonomy above all else argue that the individual should have a say over the time and manner of death. They contend that by refusing euthanasia to terminally-ill patients, the medical profession does not prolong life but is only prolonging death. Right-to-die advocates maintain that everyone has a right to minimum dignity and when the state of his/ her existence falls below that he/ she must be allowed to end his/ her tortuous existence. Euthanasia, it is believed, allows one to die in dignity and not be kept alive by artificial means.
Striking a note of caution before any legislation is passed in the country Dr. Sunil Shroff says, “The dangers of exploitation of a law favouring euthanasia is the greatest danger in my opinion. We have to think deeply of how to preserve the interests of both the patient and society before such a legislation is passed. The process of giving permission for euthanasia needs to be well defined, on a case-to-case basis, the criteria laid out without any ambiguity and the decision has to be a collective one. The brain death certification process in the Transplantation of Human Organ Act is one such example of a collective decision but the euthanasia panel needs to be more elaborate. No one looking after the patient should be part of such a committee.”
It is also feared that vulnerable people would indeed be under serious pressure not to be a burden if euthanasia became an easy option.
And there could be misuse of power over life and death. As a medical ethicist pointed out 20 years ago, “We shall begin by doing it because the patient is in intolerable pain but we shall end up doing it because it is Friday afternoon and we want to get away for the weekend.”
A legal right
The Netherlands was the first
country to legalise euthanasia and
assisted suicide in 2002, if the
following conditions were met:
1.The disease is incurable
2. The patient's suffering is
3. Patient's condition is terminal
4. Patient requests death
Other countries which have
joined this select group are
Belgium, Luxemburg, Switzerland,
wherein a medical doctor provides
patients with the means to kill
themselves and enables patients
to administer lethal injections
themselves is legal only in the
State of Oregon in the US., where
the Death with Dignity Act 1997
In 1995 the state of the
Northern Territory of Australia
enacted the Right of Terminally Ill
Act 1995 to permit terminally ill
patients to opt for mercy killing
ie Euthanasia under the strict
supervision of medical
practitioners in accordance with
the guidelines provided in the
Right of Terminally Ill Regulations
1996. However this was shortlived
and the act did not last for long.
It was turned down by the Court
as unconstitutional and on March
24, 1997 the Australian National
Senate repealed the Northern
Territory's Law which permitted
COMPLEX QUESTIONS: Aruna Shanbaug.
Landmark cases in India
Twenty-five-year old K. Venkatesh, a former National Chess Champion had been stricken with Duchenne's Muscular Dystrophy and was on ventilatory support. He wanted to be subjected to Euthanasia to facilitate donation of his organs as he had learnt that they could not be used once infected. His mother initially approached MOHAN Foundation, Hyderabad for Organ donation. When they refused on the grounds that he was not “brain-dead” his mother appealed to the Andhra Pradesh High Court to seek permission. The court ruled that the petition sought to violate the Transplantation of Human Organ Act 1995 which had no provisions that allowed individuals to donate organs before they were brain-dead. Finally only his eyes were donated after his death. Incidentally, patients with Alzheimers or Muscular Dystrophy can only donate tissues such as corneas, skin, heart valves, cartilages or bones. Solid organs like heart, lungs, liver, pancreas and kidneys can only be taken if the person is brain-dead.
Once a spirited young woman, Aruna Shanbaug, who worked as a nurse in Mumbai, was attacked and strangulated with a dog chain and raped in the basement of the hospital in November 1973 by a sweeper. Her brain stem was damaged in the process and the gruesome incident left her blind, deaf and paralysed. She remains in a vegetative state ever since. The treatment of patients in a persistent vegetative state, that is patients whose higher brain functions have ceased but who can still breathe unaided, presents a huge challenge. Should they be allowed to die since they can never recover to live a normal life? Aruna's friend Pinki Virani, journalist and author of the book Aruna's Story has filed a petition which has been admitted in the Supreme Court of India, to end Aruna's life.
The petitioner has said that Aruna is “not able to talk, hear or see anything and is like a vegetable, totally devoid of any element of human life. Aruna is forcefed by nurses at KEM Hospital twice daily.” In her petition Pinki Virani requested the Supreme Court to issue instructions “forthwith to ensure that no food is fed to Aruna.”
According to Pinki Virani “the continued vegetative existence of Aruna is devoid of any human dignity and it is not life at all and that putting mashed food in her mouth amounts to violation of human dignity. Aruna has a right not to be in this kind of sub-human condition. Worse still none of her brothers or sisters or any other relative has ever bothered to visit her, enquire about her or take care of her in the last 36 years.”
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