According to the diagnosis given to me by a leading hospital in Bengaluru in February 1998, I ought not to be alive today — I had 18 months, at the most, the doctor said. Eighteen years later, I am not only alive but also travelling around with a busy schedule of assignments, speaking engagements and activism. What brings the death warrant of 1998 to mind now is the Supreme Court’s recent directive to the Union government on the issue of euthanasia (mercy killing for patients diagnosed as having no chances of recovery). A bill permitting the withdrawal of life support in such cases is pending with the Law Commission, and the Central government has time till February 1 to clarify its stand before the apex court.
‘You have,’ the specialist doctor who did a bone scan of my body in 1998, declared, ‘multiple metastases (cancer which has spread to multiple sites in my body). Radiation treatment has to be started tomorrow morning. If the treatment works, you have 18 months — but since several vital organs are in the abdominal region, and you have large patches on your skull, pelvic bone, vertebrae and toes…’ You may understand the rest of what he said.
As it happened, due to circumstances (mostly coincidental and hard to explain) that added up to a long story, I did not start radiation treatment the next morning (if I had, perhaps the treatment would have killed me, rather than any malignancy I had). Since then, I have often wondered: Is there such a thing as a “hopeless” case?
A leading oncologist friend (who insisted on putting me through a series of additional tests over the next four months, which contradicted the diagnosis based on the bone scan) conceded, frankly, that “doctors keep learning from each patient” and that “seemingly miraculous” recoveries do occur. Boston-based surgical oncologist Dr Atul Gawande, in his best selling books, has recorded how, often, patients whose cases he considered to be “relatively minor” with high chances of recovery, succumbed unexpectedly, while cases that he thought were “serious” with low chances of recovery, managed to pull through — again, unexpectedly. So how does one — whether doctor or patient — decide when a case is “hopeless” and therefore, not worth the effort of keeping the patient alive on life support ? The BBC reported on a case where a patient who had been given up as a “hopeless” case with no chances of ever being able to sit up, regained consciousness after being in coma for years, and is now walking. I have with me another case where a mother sat with her “vegetable” son kept on life support, for many months, and saw him get well enough to start speaking.
There are no explanations for such cases. It is, of course, cruel (as Atul Gawande points out) to keep very ill patents on life support, hooked to machines, in procedures that can only be torture to them. Modern medicine does not give the patient the right to choose how much, and what kind of, ‘treatment’, to undergo. “Saving lives” without considering what kind of life they are being saved for, is unethical, unjustifiable, and contentious, notwithstanding the Hippocratic oath that doctors take.
Gawande describes the case of his own father, who retained autonomy over his body and procedures, till he passed away. Who decides? How far can the doctor overrule the patient’s preferences? This is where euthanasia becomes complicated. Sure, there is scope for malpractice, if the family (for a variety of intra-familial reasons) decides in favour of mercy killing. On the other hand, even a terminally — or incurably — ill person has the right to dignity, if he/she does not want to live on as a vegetable. But then, what about cases like mine, (or other cases of ‘miracle’ cures) where the diagnosis about hopelessness, turns out to be wrong? I know of at least three cases in my own immediate circle, where life support was switched off, with the consent of both family and doctors. This is what the patients had opted for, before they were hospitalised. I have drafted a living will, declaring that I do not want to be kept alive on machines, but the law is yet to recognise such living wills.
Passing legislation to grant the right to patients to decide how they want to ‘live on’, and how important it is for them to leave with dignity, is the crux. If legalised euthanasia can be misused, so can wills pertaining to property inheritance too — instances are not unknown where wives are under pressure to will their property to their husbands, or children force elderly parents to hand over their houses etc to progeny. The fear of misuse does not negate the legalities of wills for inheritance.
Ultimately, it is a question of extending the right to live with dignity as a human being, to include the right to die also with dignity (not out of despair). The Jain munis’ custom of giving up life at a time of one’s choosing, makes sense from such a perspective. Would I have opted for euthanasia when I was diagnosed as terminally ill?
Honestly I don’t know — I was too busy coping with other logistics, to give it a thought. My father was going on 98, he would not have been able to cope with my death-knell diagnosis. To hide my diagnosis from my parents, I had to continue with a semblance of normalcy in my routine. If the diagnosis was horribly wrong in my case, it could be wrong in others’ too. I did not feel terminally ill, though I was in intense pain. One doctor concedes that there is such a thing as the “mind curing the body” (probably mine did — my attitude was commended as contributing to a recovery from whatever the ailment was — the pain disappeared after eight months).
The bottom line, then, is that even the best of doctors are not God — they are still learning from each case (especially unusual ones like mine). And the mind’s role cannot be ignored in effecting physical recoveries. Discussions on euthanasia have to take note of these dimensions that the medical fraternity does not always take into account.
The author is an award-winning journalist and consumer activist. Email: sakunara@gmail.com