India is the worst place to die. Don’t take my word on it. Consider the Quality of Death Index of 2015 which ranks India 67th out of 80 countries, below South Africa (34), Brazil (42), Indonesia (53) and Sri Lanka (65). The index prepared by Economist Intelligence Society ranks UK at no. 1 which makes it a pretty decent place to say our final goodbyes.
The index is prepared by considering 20 odd criteria such as palliative healthcare, human resources, affordability and quality of care and community engagement.
Palliative Care, the concept of pain management and care-taking that started tentatively in the mid-1980s in India but faced multiple problems in its expansion in the next two decades like – population density, poverty, restrictive policies like opioid prescription and lack of institutional interest in palliative care.
It showed a surge in the latter-half of the 1990s, with centres coming up in Delhi (CanSupport), Chennai (Jivodaya), Bangalore (Karunasraya) and other states like Assam and Goa. But the rise is still insufficient considering the population boom in India over the years.
What is palliative care?
As defined by WHO, palliative care is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual.”
It is often seen as only being for cancer patients, but actually has a much wider arena of care-giving to most incurable diseases like HIV and even chronic neurological problems. The core team is of doctors, nurses and social palliative workers. Nutritionists, pharmacists, massage therapists may also be a part of the team. The care can start as soon as a conclusive diagnosis is provided and the treatment is initiated.
Why Palliative Care?
In simple terms, palliative care improves the quality of life of the patient, something that is often overlooked by doctors in the course of locating the tumor, or finding the cure for the illness. The trauma -both mental and physical, endured by the patients in the course of the treatment often make them detest life itself and the plight of the relatives also takes a downfall upon seeing the distress of their loved ones. Symptoms such as fatigue, shortness of breath, constipation, nausea are taken care by them. The solutions to such symptoms follow a simple course but as mentioned, are often neglected in the larger scheme of medical healthcare in India.
To take the instance of Rajkumari, age 75 years, who was experiencing discomfort in swallowing food, due to the blisters that had developed in her mouth, a common side-effect of chemotherapy. She refused to intake food because of the pain and this led to the entire family not eating.Enter CanSupport, a palliative care for cancer patients. They administered a few rounds of mouth washes with sodium bicarb in water and Rajkumari felt relieved almost instantaneously and she resumed eating, to the great relief of the family.
Palliative Care focuses on improving the quality of life irrespective of how long the patient has to live and whether or not a cure is available.It has often been referred to as the Jaadoo ki Jhappi from Munnabhai MBBS.
Palliative care deals with the tough confrontations that lies ahead in the patient’s life regarding his/her illness. The balance of hope and denial have to be worked out with care.Truth can be soothing if administered in the right dosages at the right time. It has been said, “Break bad news well and you will always be remembered, break bad news badly and you will never be forgotten.”
The Kerala Model
Kerala, though it covers only 1% of India’s land mass and contains 3% of India’s population, has now more palliative care services than the rest of the country put together. Two-thirds of the country’s palliative centres are in Kerala.
The Kerala model of Palliative Care has been known to work. The Neighbourhood Network in Palliative Care, a community-owned programme in Kerala, is a project that evolved out of a series of need-based experiments in the community.
The initiative has now grown into a vast network of more than 500 community-owned palliative care programmes looking after more than 15,000 patients at any given time. It has a workforce of more than 15,000 trained community volunteers, 50 palliative-care physicians and 100 palliative-care nurses, according to WHO’s Global Atlas of Palliative Care at the End of Life, 2014, report.
A relatively recent development had been in the period 2005-08, when on the request of Pallium India, The Government of Kerala appointed a committee to draft a policy on palliative healthcare in the state. The policy came into being in 2008 and its implementation has been left with the National Rural Health Mission which has been a success.
The Obstacles Faced
The Narcotic Substances and Psychotropic Substances (NDPS) act of India brought out in 1985 made procurement of morphine very difficult and also attached a stigma to its usage. It imposed heavy penalties on even small clerical errors and needed 4-5 licenses all valid at the same time , procurement of which required the concurrent functioning of multiple departments of the government. Thus, gradually pharmacies stopped stocking morphine such that in the year 1997, India saw a massive drop of 92% in morphine consumption, whereas the global consumption during the same period went up by 437%.
Though the NDPS has now been simplified, it has still not been implemented by State Governments. The National Programme in Palliative Care, which had been instituted in 2012 also suffered in propagating further due to budget cuts.
There are some things that are definitely looking up for the palliative industry like the National Palliative Care Strategy (2012) that has been sketched out. Also with AIIMS starting the first MD in Palliative Care and a DM in cancer pain management shows that palliative care has been finally acknowledged as a proper discipline.
Palliative Care requires lot of passion and commitment as its services go beyond the biomedical aspects of life to the right of living with dignity while accepting death as an inevitable part of life. It is the absence of such services that lead patients to demand for mercy killing or euthanasia. Hence it becomes imperative to combine medical treatment with palliative care to provide holistic treatment to the patient.
Swati Sudhakaran is currently pursuing MA Public Policy at Mount Carmel College, Bengaluru