Dealing with Death.

(15 Nov ’09)

            Recently, we came to know about a friend spending his last hours/days on the planet in the ICU, on a ventilator. What was interesting was that his entire crop of friends, all very well placed and highly educated, were having prayer meetings for ‘his full recovery’. What chance did he have? Considering that he had been suffering from a dreaded disease for a long time, that he was at the very tethering end of his life, on artificial life-support, pumped with chemicals, by some chance even if he had survived, what a burden his family would have had to bear.  One wrote, “fight, fight, fight”. All of these same friends have given invaluable support to the wife in her time of trouble. But not one had written (this was on a networking site) about praying en masse for her comfort. We are still to accept death as inevitable. Miracles happen, people say. So do funerals.
            A generation ago, perhaps longer, it was considered natural. Now, since we have the means and the know-how to stretch life, we take that to be the norm. A lot of families are reduced to poverty because they ‘don’t want to give up’. A lot of people will borrow, borrow, borrow for medicines. Some will say the government must do this that and the other. But no one says a word about palliative care. In Mumbai, the only institute I know dedicated to end of life care is run by a bunch of very devoted nuns.
            We don’t mind shoving uncomfortable tubes and catheters into our beloveds, injecting them with drugs to raise the blood pressure, force the kidney or the liver or lung to work… all we’re doing is making him or her spend a couple of more hours/days uselessly on a bed, with several professionals tending to his/her ‘needs’. What, people might ask, if the patient were one’s own. I’d say, I’d expect good friends to help me to cope with what is inevitable, perhaps guide me to arrange finances and legal hassles, spend time until I can cope with the loss and stay as a support system for a long time to come. We have to learn to let go when the time comes. Easier said than done? Of course, but that doesn’t mean we mustn’t speak it out when times are good. In fact the best time to discuss our ‘living wills’ is when we’re in good health, good spirits, spending good times with family and friends.
            There are pain issues, non-pain issues, psychiatric and spiritual issues, communicating with family-members, not easy at all. Living wills allow one to decide whether one wants to die at home, not be kept on life-support, donate organs should that be feasible, etc. It allows family members to do certain things which one has wanted even whilst one is alive, but helpless and close to death. Some of the things may not be possible. “Please kill me” is one of those. Palliative care is caring for pain, discomfort, nausea. It doesn’t bring on or hasten the end. It is possible that even the treating doctor may be uncomfortable with end of life care. This homework should be done well in time so that when the family or the family doctor has to execute the will, it’s done smoothly… no, it isn’t easy even then. But it’s better than confusion when things in any case are hard to tackle. Distress in dying comes in many different forms. Reassurance and peaceful environments are a must. Cultural differences will bring about different reactions. These, if they’ve been sorted out well in advance, will help the family cope with both the dying-process and the loss. A dying patient may not be suffering. Not always.
            We all believe we’re immortal, that dying happens to others… and we all know that’s not true. There will always be a debate of science versus religion and more. No one wants a repeat of seeing a loved one go. Yet it’s one of the most profound experiences of one’s life. Fears have to be acknowledged, addressed, talked about. Do you want to die with your children around you? Say so. Do you want to be in an ICU fighting till the end? Say so. Whatever you want, TELL. Either is ok, it’s your wish. You are entitled to dignity, you are entitled to treatment, you are entitled to whatever you want and you must know your next of kin to know that. Or your family doctor or whoever you feel will be the decision maker. Even when very old people talk of their going, younger relatives joke about it.. “still a long time for you”, “you’re going nowhere”… better if they express what they’re feeling, better for the young to know.
            Then there is the grief for those left behind. Sorrow, regret, overwhelming sadness, a feeling of aloneness and loss. One never forgets, and there are cheerful days and tearful days, it’s not an even ride. Grievers need company and the loss, the dull ache is felt permanently, one learns to live with it. Anger, financial fears, add on to the burden. Hearing the person’s voice, feeling the presence, that is normal. But if after days, weeks, months there is no change, or there’s clinical depression (this has to be checked by a doctor, and is not just feeling low, there’s much more to it) professional help is required. This is specially true with unexpected, sudden deaths and more when the lost one is young.
            What might come as a surprise to many is that physicians also grieve over lost patients, but that’s another story.
@@@@@