Let's Talk About Death

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

or irreversible coma.

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

legal murder.

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

would lose capacity .

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

conditions.

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

care for the dying.

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

allow.

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

historic leap forward.