Witnessing a loved one’s health decline steadily is never easy.

As a teenager, I saw my father’s health deteriorate with every passing month. Given his chronic kidney condition and prevailing medical advances and limitations, his end was foretold, though not with any precision. We grew up with the knowledge that we could lose him in the next year, month, or day. As time went by, we swung from expectations of ‘normalcy/recovery’ to the dread of ‘reversals/setbacks’. It involved many resets. Each of us in the family figured out our own unspoken ways of maintaining emotional distance from the inevitable, impending loss while carrying on with the regular routines of school or college, banter and bickering, joking and laughing.

Is it morbid or utterly natural to wish for someone’s immense and prolonged suffering to end – for life’s kindness to deal a death blow? I have wrestled with this question for some weeks now.

My uncle, well into his eighties, and suffering from numerous ailments that can at best be managed rather than cured, fell, broke his femur and was admitted to hospital for surgery. The surgery never happened. A series of setbacks had him knock on Death’s door and return each time. Wrong time, wrong door? Unfinished business? It has meant that he has since received varying degrees of life-support through drugs and machines. We have reached an equilibrium where ups and downs are managed through tweaks in drug dosage and machine settings, with slight improvements in the odd parameter, raising hopes even when the overall condition and prognosis remain poor.

He remains bedridden, unable to breathe, speak, eat, pee or move from his bed on his own. He has no visitors other than his daughter (my cousin) and me. He has been in hospital for three months now, of which two have been in intensive care. He harbours hospital-bred infections as a consequence of tubes inserted in different parts. By now, he doesn’t know night from day since he has not seen daylight in all these weeks. Thrice, on seeing marginal improvement, we contemplated bringing him home and offering specialised nursing care, and each time, he went right back on the ventilator following a serious setback.

Today, he is an extension of the machines, for the most part. I have often wondered about his situation.

I have also wondered about our choices. This ventures into delicate territory, where the unsentimental and pragmatic part of me has to dialogue with the ethical, emotional and the legal. I am convinced that aggressively persisting with invasive means and using biomedical equipment to keep someone alive is a form of violence and abuse, involving knowledge and power, where the one acted upon has no voice. Science and advances in medicine are pitted against the run of Nature, universal laws governing life and death, or the will of God, if you will… Now, are we to be subjects of these false Gods?

If, acting from my compassionate self, I were to consent to ‘pull the plug’, would I be unwittingly playing God or is it God’s will anyway? Many have privately confided their own struggles when confronted with this choice, fearful of social whiplash and legal ambiguities, burdened by unresolved guilt, and a sense of relief after. 

Would my uncle have wanted to continue this grim battle leading to many months of ill health? Would his love for life far exceed considerations of the poor quality of life that lay ahead? Would a life of dignity mean anything, or, even if all semblance of it is shredded, would one go on because life is a gift – not to be surrendered, bartered or cast away? We may probably never know.

Money, if in short supply, might have settled the matter without too much agonising. When there is pride, vanity and complexity added to wealth, the simple rules of life and death get rewritten into a multi-episode saga of love, attachment, sacrifice and heroism rather than a simple, single edition – but no less compelling.

What purpose is served by prolonging someone’s misery? Whose purpose is served? Is it possible to acknowledge to ourselves that we have extended the best care that our resources can command and that medicine can offer, that this falls short in offering a ‘life’, and therefore the prudent thing is to sign off?

I wonder sometimes if clinging on to the strings of attachment makes it doubly hard for those set to depart. Instead, what may release all is a prayer to the one suffering, an expression of deep gratitude and silent permission, should the sufferer decide to leave our midst.

The ‘living will’* is an idea whose time has come. Perhaps out of love for our family, we ought to frame one so that those in whose care we may find ourselves do not find themselves tossed by emotional storms, caught between duty, compassion, constraints and love.

*A living will is a ‘written statement detailing a person’s desires regarding future medical treatment in circumstances in which they are no longer able to express informed consent; especially an advance directive’.

Caregiver Saathi is an NGO in India that is committed to addressing the specific needs of caregivers and fostering their wellbeing. Caregivers are often decision-makers regarding the continuation and extent of healthcare for the critical or terminally ill, in the absence of specific directions that a living will provides. To know more about caregiving and how you can support caregivers, visit caregiversaathi.co.in.