The government’s new draft bill on the care of terminally ill patients fails to address key questions about end of life care in the country.
Despite being surrounded by cultures that look at death as only a transition, many of us fear death. The legal jumbles around the end of life in India only add more confusion to these fears.
The Aruna Shanbaug case brought to the fore the limits of that legal provisions related to end-of-life care are at a nascent stage in India. In this historic case, a nurse working at the King Edward Memorial hospital was thrown into a permanently vegetative state because of a sexual assault. She ended up surviving in that state for 42 years, only to die naturally.
The court had gone on to give guidelines distinguishing between active and passive euthanasia, holding the latter to be legally permissible. This decision was challenged in the case of Common Cause versus Union of India, on the grounds that the decision on Shanbaug was based on a wrong interpretation of the Gian Kaur case, in which a constitution bench had held that right to life did not include right to die, and its reference to the UK’s landmark case on euthanasia, the Airedale case. In light of this, the Supreme Court referred the matter to a constitution bench for an authoritative opinion to resolve the inconsistencies regarding euthanasia and physician-assisted-suicide in India.
The constitution bench transferred the burden of coming up with a draft law on end-of-life care to the government of India. As a response to this, the health ministry proposed The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill (“draft bill”), a model law proposed under the 241st report of the Law Commission of India, and put it out for public consultation. Unfortunately, the draft bill in its current form falls short of addressing some pressing concerns surrounding end-of-life in India and highlights a lack of trust of the lawmakers in patients, their families and most importantly doctors.
How do we determine death?
The fundamental question that needs to be answered in order to legislate on end-of-life is, when can a person be considered dead? Is it when one’s heart stops functioning, or one’s brain, or one’s lungs? The advancements in medical technologies have made death to be more of a process, than a definitive point. Strangely, under the existing Indian law, the criterion for determining death in certain cases depends on whether or not she is donating her organs.
Under Section 2(e) of The Transplantation of Human Organs Act, 1994, a deceased person means a person in whom there is a permanent disappearance of all evidence of life, by reason of brain stem death or in a cardio-pulmonary sense. Now, the brain stem is that part of the brain that controls breathing and digestive functions. Once it stops working, there is hardly any chance that consciousness may be regained. However, even when a person’s brain stem has stopped functioning, the heart may continue to beat and breathing can continue if the patient is put on a ventilator. Aruna Shanbaug, for example, was breathing on her own, and was in the permanent vegetative state, which is not to be equated with brain stem death.
While the Indian Penal Code under Section 46 defines “death” as “death of a human being (unless context otherwise requires)”, the legal inconsistency occurs in light of other Indian legislation, such as Section 2 (b) of the Registration of Birth and Death Act, 1969 , which does not make brain stem death a sufficient criterion for death. As a result, a person whose brain stem is dead and is breathing through a ventilator would be considered to be alive under this Act.
As things exist today, if a patient is not donating organs, in order for it to be not considered murder or abetment to suicide under the law, a physician must wait for the patient’s heart and respiratory system to cease to function before they can be pronounced dead. While the regulations of the Medical Council of India provide for a consultation with a council consisting of the chief medical officer and another doctor nominated by him apart from the doctor in-charge of the patient, it does not absolve doctors of liability, nor does it add any clarity.
Internationally, there seems to be a growing consensus on keeping brain death as one of the standards for determining death, along with cardiopulmonary and respiratory standards. The Uniform Determination of Death Act in the US considers non-functioning of the whole brain, including the brain stem as the point of death. In the UK, as is evident in the Airedale case, it is brain stem death which is the definitive point of death.
In India, one often hears about cases where doctors do not know whether to take the patient off the ventilator or continue to let the patient remain barely alive. This has also led to the malpractice of extorting money from the patient’s family members in name of ‘treatment’ in the intensive care unit. Sometimes, in order to avoid liability, medical establishments resort to roundabout methods, raising countless ethical questions.
The draft bill: whose life is it anyway?
To start with, the draft bill does not define ‘death’ or resolve the inconsistency between the different laws in this context. Instead, it attempts to lay down the process by which the medical practitioner can withhold or withdraw life support for ‘terminally ill patients’.
According to the bill, this can be done by the consent of a ‘competent’ patient giving ‘informed consent’ in case of a terminal illness. In all other cases, where the patient is incompetent, or is not giving informed consent, the court needs to be approached for declaratory relief based on the findings of the expert committee, rather than make the decision itself. (This is the fundamental difference between the 196th and the 241st law commission reports; the draft bill is the one recommended under the latter.) To add to this limitation is the vagueness and inadequacy of each of these definitions. For example, the court is mandated to give its order in light of the “best interests” of the patient and according to the wide definition of “best interests” under this bill, it is not clear whether or not the financial situation of the family is to be considered in determining whether the medical treatment has to be withdrawn or withheld.
In a country where there is often an opportunity cost of another life for every patient treated because of a resource crunch and the courts are facing a huge backlog and remain inaccessible to certain sections of the society, such provisions in the draft bill highlight the need for an alternative way of dealing with the questions of the end of life.
While the case of a patient in permanent vegetative state or coma may be ethically contentious, whether the same process is to be applied in case of withdrawing ventilator from a person whose brain stem is dead requires clarification, and if that is indeed to be the case, it defeats the purpose and prolongs the misery.
Another serious shortfall of the draft bill is its rejection of advance directives by declaring them to be void under Section 11. Such a provision, in the context of the ongoing case, deserves an explanation. The only explanation given in the law commission reports is the potential misuse of advance directives. This just shows a deep-seated mistrust of people in general and the medical fraternity in particular. The state needs to reconsider such a blanket dismissal in light of the possibility of minimising misuse through the insertion of safeguards such as the possibility of registration or revocation of directives.
The ongoing case and the draft bill come across as the beginning of a journey towards resolving legal issues surrounding end-of-life and respecting people’s rights to die with dignity. Lawmakers have been called upon to draw a line between life and death; let us hope that it will be dealt with a focus on human dignity that befits the robust jurisprudence of the right to life under the constitution of India.