Saying good-bye with dignity

“In India, the poor die in agony in neglect, the middle-class die in agony in ignorance, and the rich die in agony on a ventilator,” says Dr. Sankha Mitra, the British oncologist, referring to the sometimes inhuman treatment meted out to people in the end-stage of life. “No one gets a dignified and pain-free death.”

While the poor are rejected by hospitals and told that “there is nothing more we can do, so go home”, the middle class gets futile treatment that breaks the family financially. Those that still have some resources left are imprisoned in intensive care units and put on meaningless artificial life support measures that often cause intense physical, psychological and financial distress.

Death is the one certainty in life. You and I have only about 10 per cent chance of a sudden death. The rest of us will have to go through a bed-bound stage before we finally go. About 8.4 million people die in India every year. At least five million of them will have significant suffering during the bed-ridden state — pain, breathlessness or a host of other symptoms, not to mention the emotional and social distress that may be associated.

The good news is that much of this suffering is unnecessary. Palliative care, as is available in many countries, can relieve the distress and make life as comfortable as possible under the circumstances. This enables the person to live, and when the time comes, to die, with as much comfort and dignity as possible.

Paradoxically in India, while high-quality curative treatment is available, less than 1 per cent of the needy have access to palliative care. In 2015, the Economist Intelligence Unit published a study of 80 countries on Quality of Death index. India was ranked among the 15 worst countries to die in. In the words of the United Nations Special Rapporteur on Torture, “the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment”. And when “the failure of states to take positive steps, or to refrain from interfering with health-care services, condemns patients to unnecessary suffering from pain, states not only fall foul of the right to health but may also violate an affirmative obligation under the prohibition of torture and ill-treatment”.

In the absence of palliative care, treatment of incurable diseases becomes inappropriate. The implications on the family are seldom recognised or discussed. In the absence of any form of support, family members have to leave their jobs and the next generation is forced to drop out of school.

A medico-social experiment in Kerala that started in 1993 in Kozhikode city, which later spread through the State, has clearly shown a way forward. The community got so interested that palliative care came to be seen as a social need and a social obligation. Today, there are more than 200 organisations in Kerala providing palliative care, far more than all the rest of the country put together.

The Government of Kerala, acting also on the basis of a proposal submitted by the non-governmental organisation Pallium India in 2005, declared a palliative care policy three years later, making it the first government in a developing country to do so. The policy envisaged introduction of palliative care in the primary, secondary and tertiary levels of healthcare. It also made provision for the introduction of palliative care into medical and nursing education and for access to opioid pain medicines for those who need them.

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