“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.
Looking back, Kerala’s palliative care policy was designed to do what, six years later in 2014, the World Health Assembly exhorted all member-countries to do — to integrate palliative care into routine health care, through the continuum of care (from the time of diagnosis when the suffering starts until there is a cure or death, and then continuing to support the family during bereavement) across all levels (meaning the primary, secondary and tertiary levels).
But unfortunately, the Government of Kerala made no budget allocation to implement the policy. With funding from the National Rural Health Mission, however, palliative care was introduced at the primary level. Today, most of Kerala's 900-odd panchayats has one trained palliative care nurse each. The bed-bound villager in Kerala who is unable to travel to a hospital now gets at least a monthly home visit by a nurse.
Kerala’s success story in palliative care is based mainly on two factors. One of these is the involvement of the community in the form of service by volunteers and in the form of the local self-government institutions taking responsibility and doing what it can. The second factor is the coverage through much of the State. This is a success story that should inspire action by the Central and State governments.
Drawbacks in the implementation of Kerala’s palliative care policy also must be recognised. The involvement of the medical system is poor. An incident in Kanjangad in north Kerala in June 2014 brings the problem into tragic focus. A couple killed their nine-year-old son in a hospital and then hanged themselves. They left a note saying that the reason for this extreme step was their inability to see their son’s pain. To many, it seemed inconceivable that hospitals would not provide pain relief in a State known for its palliative care system. However it is true; morphine is listed as an essential drug in the Government of India’s list, yet most major hospitals even in Kerala do not stock or dispense it. And even today, the basic principles of modern pain management are not being taught to medical and nursing students.
A solution at the national level seemed promising when the Ministry of Health of the Government of India created a National Programme for Palliative Care (NPPC) in 2012, for the current Five Year Plan. However, the required budget allocation was lacking.
Though the NPPC could not be implemented, it still remains a document of statement of need. The subsequent amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act in 2014 removed many regulatory barriers to access to opioids for pain relief.
If these positive developments are to result in any significant reduction in suffering due to life-threatening diseases, it is necessary to have a viable, funded nationally programme. The progress made in the last few years makes this the right time to move forward.
