Dying in Mumbai
This is a four-part series exploring death and dying in Mumbai
The Care-Givers’ Hell!
People die all the time. While sudden deaths leave havoc in their wake, at the least, they are quick and “good” deaths.
Many people though, linger at the edge of death. Ill and diseased with multi-organ complications, or infirm and old and losing their physical or mental grip, in and out of hospitals, with one form of treatment leading to complications in other systems, the family and care-givers are constantly on edge, wondering when and where the next complications or problems would occur.
Even Do Not Resuscitate (DNR) or Do Not Hospitalize (DNH) instructions are difficult to comply with. It is not easy for the son or daughter or the extended family to accept not to do anything, even if the person has laid down specific instructions about not being taken to the hospital or being put on a ventilator. If they are conscious, the patients may object, but if they are drifting in and out of consciousness, all decisions are left to the care-givers. And it is often impossible for care-givers to sit back and do nothing.
Like the family physician who was disabled, in bed for many years and had given explicit instructions that he was never to be taken to a hospital. One day he aspirated and was gasping for breath. One of his doctor sons just could not bear it and took him to the hospital, where he was put on a ventilator so he could live another wretched few weeks.
Like the brain dead person down the road, who is on a ventilator at home receiving dialysis twice a week, while the care-givers can’t let go.
Or like my mother-in-law, who wanted to be at home, in her last days, but yielded to her childrens’ decisions.
The first time she went to the hospital a few weeks ago, it was necessary. She came out fine. Then, on steroids, things started going downhill at home, and there came a day when a decision had to be made…we took her to the hospital. Four days later, another decision had to make…we decided to shift her to the ICU. She died a day later. She would have preferred to die at home with her family around her, perhaps with someone reading the Jain “navkar mantra” to her, but that was not to be.
But how would we ever know! How would we know that she wouldn’t have been more miserable at home than at the hospital. How would we know that she wouldn’t have survived better in the ICU and then perhaps made it through this episode and come home fine? How would we ever really know whether the decisions we make are correct or not! And how can we necessarily justify not doing anything, just because our parents or elders have given instructions?
When your father or mother suddenly becomes unconscious, which may perhaps be due to a treatable acute subdural hematoma, would you really not take him/her to the hospital, despite a living will that says never to do so?
And yet, when do we finally decide that enough is enough? At what point in the ICU when on a ventilator and on extended life support, do we care-givers finally say, “we’ve done all that we can and we should let go!”
And how does the care-giver live with that decision? Especially when it takes one “well-wisher” to say something stupid like, “But what if she had survived.”.
Those who die, die…sometimes well, sometimes badly! The care-givers either way go through hell!