You cannot deny or ignore the truth forever. But we have managed to do
just that in case of the human issues surrounding death, terminal illness
The euthanasia debate rolls on endlessly , but people talk of entirely
different things in relation to it. We need urgently to get our
terminology right. We debate whether the Constitution allows us the right
to die, or whether such a sanction would let unscrupulous elements commit
In countries that accept active euthanasia, it takes place under strictly
regulated conditions mandating that the patient be conscious and capable
of deciding independently . But that's a rare situation, when we neglect
to see the elephant in the room.We must move away from the narrow term of
reference of euthanasia as an intention to kill to an intention to care.
The central issue is how we intelligently and compassionately care for
the dying or those beyond medical salvage. It would be a travesty of
medical care if we were to treat them the same way as we do those with a
chance for cure or tolerable quality of life.
For the doctor the standard of care would be to go all out in the latter
context. But in the former, it would thrust man-made agonies not only on
the patient but also on distraught families. Legislation has been sought
by physicians and the public to decriminalise and facilitate legitimate
withdrawal or withholding of disproportionate interventions, as strongly
recommended by international professional opinion.
The terms that must be used are, “end of life care“, “comfort care“ or
“treatment limitation“. These terms refer to the shift in the focus of
care that is appropriate to a terminal or non-salvageable condition,
certainly not to any form of euthanasia.Such a conceptual structure is
based on ethical principles grounded in the patient's inalienable rights.
Physicians and next of kin of the patient have a moral obligation to
place the patient's preferences and wholeperson interests above all other
conside rations. Here the law should be in consonance with this most
fundamental ethical principle in modern medical care.The individual's
right of choice or selfdetermination should be sustained even when he
It would follow that an Advance Will would enable the family and
caregivers to be aware of hisher choices made when in full possession of
faculties. While accepting the underlying basis, the 196th and 241st
draft bills of the Law Commission of India turned it down. In their
opinion, such a provision would be subject to misuse under Indian
It is unacceptable that the Indian citizen's rights be trampled upon in
so cavalier a fashion by considerations that are extraneous to hisher due
care towards the end of life. When faced with a dismal outlook as with
terminal cancer, the patient and family deserve opportunities for
discussions around prognosis and the informed choices of the patient, as
also for palliative care and emotional and spiritual support. Where
medical care is refined to include such advance care planning, most
patients are found to opt for comfort care in a hospice or at home,
avoiding the futility of technology-laden care in a hospital or ICU.
With the advancement of life-saving interventions, the bioethical
principles governing their appropriate use have evolved over the last 40
years. The first “Do not resuscitate“ (DNR) order was written in the US
in 1974 and later codified to law in 1988, going on to case laws
decriminalising withdrawal or withholding of ventilators and life support
in the 1980s and 90s. Death with Dignity legislation now exists in most
of the developed world together with worldwide consensus guidelines.
In the wake of the hearing of Common Cause versus Union of India, by a
five judge bench of the Supreme Court, there is a new opportunity to open
the debate to a wider and deeper level. There is already much work done
by professional associations integrating ethics and global standards of
Seminal works have been published, in the form of ethical guidelines and
standard operating procedures with built-in safeguards, by the Indian
Society of Critical Care Medicine (ISCCM) and the Indian Association of
Palliative Care (IAPC).Recently , the Indian Academy of Neurology (IAN)
joined hands with the ISCCM and IAPC to build advocacy for patient's
rights and physician's protection for appropriate end of life and
palliative care legislation.
“Commercialisation“ of medical care is commonly perceived to be driving
practices that keep patients on ventilators. But it is the medical
profession that is seeking decriminalisation of appropriate treatment
limitation. Misuse of treatment withdrawal has been overplayed while
being oblivious to the injudicious use of high-tech, highly expensive
life prolonging interventions that the absence of such provisions would
If we are to be a thoughtful and caring nation, we must not dither in
making laws that would reduce the devastating consequences of such
intervention to the patient, survivors and society as a whole. The time
is ripe for open discussion on the inescapable reality of death, the
tragedy of unnatural prolongation of dying and the ways we can help
people through a “good death“.
When we restore the individual rights of choice and privacy , and extend
protection to the honest caregiver, we as a people will have taken a