The Constitution of India guarantees life with dignity as a fundamental right. Generally speaking, we enjoy this right. But it all changes if we get an incurable disease. Or when we eventually wither and die of old age. In those circumstances, we should still have the right to live the way we want to and die where we want to. But we find that we no longer have any choice.
An Economist study found that India was one of the worst 15 countries in the world to die in, coming 67th out of 80 in “quality of death”. In India, as we near the end of life, we cease to be treated as human beings and become mere containers of disease.
Until it is seen or experienced, it is not easy to understand the degree of assault on dignity by inappropriate medical treatment in incurable diseases. Typically, even if one is fully alert and able to take decisions for oneself, one finds oneself stripped of that privilege.
Whether it is advanced cancer or some other illness, the family takes over and makes decisions, and the “patient” is bundled into a hospital. There, in turn, the family loses control; hospital protocol takes over and transfers the patient to an intensive care unit.
In his last days, when one should be with the loving family with a gentle touch, one finds oneself isolated from dear ones when they are needed most. At a time when the deepest desire is to see a grandchild once more and to bestow a kiss on that cheek, one finds that children are not permitted into the holy intensive care unit.
The immediate family is allowed in for five minutes twice a day, but they are afraid to touch; the body is literally covered with cables; there are alarms screeching. Even when everyone knows that the patient is dying, a tube is inserted into every orifice in the body.
Among the many tubes, one is likely to be passing through the voice box into the wind pipe. These are some of the most sensitive parts of the body. A catheter periodically pushed into it to aspirate mucus is one of the most painful things one can experience – “like a red-hot iron pushed into you and twisted as it is withdrawn”, as one person described it. You have never known that such pain was possible; it is beyond the average person’s power of imagination.
When one feels a weariness of a degree that cannot even be imagined and longs for some peace to shut the eyes, it is prevented by a perpetually lighted room with no distinction between night and day (does that remind you of torture chambers?), with dozens of frightening beeps and screaming alarms, and weird masked creatures walking around.
Fear overcomes the person; there is an urge to know what is happening; but that tube in the voice box prevents speech, and no one bothers to give any information. When one panics and tries to pull out the tubes, the nurses bind the hands and feet. The right to life with dignity is violated in the cruellest way.
I am a doctor and have been an intensivist. I know very well that intensive care can dramatically save lives. But i also know that it is the most horrendous infliction of suffering and violation of human dignity in the context of incurable illness. We should be able to recognise that death is the inevitable consequence of life and that the person should be allowed to go with as much dignity as possible.
The government of India has prepared a draft law on the subject, available at the website of the ministry of health and family welfare. Its objective is to “protect” the terminally ill; to ensure life and death with dignity and to provide for palliative care as the humane, viable alternative to intensive care.
However, as drafted, the law confuses between euthanasia, which is wilful termination of life, and withdrawal of life support, which is only permitting natural death. Today, you have the privilege of leaving advance directives – which, in the absence of any existing law on the matter, has the backing of Medical Council of India. But this new draft law says that “every advance medical directive (called living will) or medical power of attorney executed by a person shall be void and of no effect and shall not be binding on any medical practitioner”.
The implication of the draft law would be that when one is no longer competent to communicate decisions and the family decides to respect the person’s expressed wishes to refuse life support measures like artificial ventilator, they will have to apply to the state high court. The draft law provides for ‘quick’ action by the division bench of the high court – in one month. One month. One month in which every moment is agony. One month, in the first week of which treatment costs in an intensive care unit would have impoverished the family and left them homeless.
This law is not really about them. This is about us – each one of us and our families. The new law threatens to violate our autonomy and dignity at the most vulnerable time of our lives. We must all protest and prevent it from coming into force.
DISCLAIMER : Views expressed above are the author's own.
M. R. Rajagopal, MD, (born 23 September 1947) is an Indian palliative care physician. He is the Founder Chairman ofPallium India, a palliative care non-governmental organisation based in Kerala, India. He is often referred to as the 'father of palliative care in India' in honour of his significant contribution to the palliative care scene in India