Dr X was my professor in medical college. An imposing figure, he had always commanded respect. But now, I was seeing him as a 'patient' living with dementia for many years. He was well looked after by a home nurse, with one of his several daughters and one son taking turns to be with him.
I saw him because the family requested help with artificial feeding. Things were getting worse, and he was no longer consuming enough food.
I knew this was a tricky situation. The international recommendations for dementia are to avoid artificial feeding if at all possible. That could set in motion a cascade of interventions which may torture him to his death. The only thing that can be judiciously done was to be patient with feeding, accept the time that he takes to swallow one mouthful and stop when he no longer opens his mouth.
Interestingly, two of his non-doctor children had no problem accepting this, but not the medical side of his family. They decided to put in a feeding tube through his nose. Of course he would pull it out. So, he had to be physically restrained with wrist-and-ankle-bands that made him immobile. In three days, he had multiple pressure sores which eventually became painful. In someone with dementia, physical restraint is known to cause agitation. The agony of this human being with his hands and feet tied was unthinkable.
He died one of the cruelest deaths that I have seen.
Roughly around the same time, the home nurse's twin sister was looking after her mother with advanced cancer in their humble home in a nearby village. They both used to go to work; but now they had arranged that one would work as a home nurse and earn for the family, while the other would stay back and care for the mother.
Support from the healthcare system came in the form of a palliative care unit offering her a home visit roughly once a week. When she got pain and later breathlessness, it was effectively handled with simple medications. She eventually died at home, receiving love and care, and giving love.
It is a queer paradox of modern life that despite all the social iniquities, end of life may be kinder for the poor than for the affluent. The rich end up in intensive care units. This violates all medical guidelines in the context of terminal illness.
For example, one published guideline (Choosing Wisely India) from the National Cancer Grid says, "Do not treat patients with advanced metastatic cancer in the ICU unless there is an acutely reversible event." But this is violated both by medical systems and loving families who want 'the best care' for the loved one when there is some money in the pocket.
This is violence on the part of the healthcare system and the society. Violence can take many forms. It can be the passive violence involved in belittling, laughing at or even ridiculing elders or patients. What lies behind this is abuse of power. The healthy and the young hold all the power; the poor and frail are powerless. The imbalance of power leads to abuse of power. It is easy to laugh at, ignore, or even abandon the powerless, all of which constitute passive violence.
Violence could also manifest as usurping decision-making powers away from the person when there is a serious illness. A typical example would be an elderly person who has gone through episodes of panic during the previous admission to ICU begging not to be taken back there, and a 'loving' son declaring, "Ignore his emotional outbursts doctor, we want the best for him. Take him to ICU." This is violence too, no longer passive.
Active violence can also be in the form of infliction of catastrophic health expenditure on the patient and the family. The numbers are huge. The oncologists Boby J M, Rajappa S and Dr Aju Mathew found in three different states that about 52% of patients with cancer were subjected to catastrophic health expenditure. The impact of this is easy to imagine. It can cause multigenerational poverty and denial of education and decent upbringing.
Unfortunately, today, violence has also become even more active, like the forceful incarceration of dying elders in ICU, where they are subjected to solitary confinement, with needless and painful interventions and a tube in every orifice. The tube in the breathing passage can cause agonising pain every minute till the person eventually dies in days, weeks, or even months. Unfortunately, this kind of violence happens more in India than elsewhere.
Thankfully, a Supreme Court verdict of January 2023 shows us a way out. If the person has expressed wishes regarding care at the end of life in the form of an advance medical directive (living will), that should be respected. It is not only acceptable, but also necessary to withdraw artificial life support measures when they are no longer effective in bringing the person back to a reasonable quality of life.
There are procedures to follow, though. For example, such a 'living will' needs to be countersigned by a gazette officer or notarised. Once that signature comes in, it becomes a legally valid document. There are many institutions offering help for such activity. There are many institutions offering help for such activity. There are many institutions offering help for such activity. The form can be customised according to individual preferences.
In addition to helping the medical system to plan end-of-life management, discussions around this would clarify the path for loving families and help them to accept the reality that the person would eventually die.
Unfortunately, growing nuclearisation of families has resulted in a death-denying culture. As the Lancet Commission report on The Value of Death pointed out in 2022, we have become a death-denying society and so it is important to 'bring death back to life' with a planned death-literacy campaign.
This is why on 23 and 24 August 2025,Pallium India is organising a death literacy festival in Bangalore. Indeed, every community needs discussions like this to prevent the gross injustice that is being meted out to hapless dying humans.
(Dr M R Rajagopal is Founder/Chairman Emeritus, Pallium India)