We work with two burdens in India. One, we do not understand or promote palliative care. Second, we think it should be only for the end of life
M R RAJAGOPAL AND JAGDISH RATTANANI
An 18-year-old girl had been brought out of one of the best-known public hospitals in the country and left at the curb. She had been discharged from the hospital because “there was nothing more to be done”. The girl had a huge swelling from incurable cancer in her lower limb with a foul-smelling unsightly ulcer and maggots crawling over them. She was writhing in pain.
A kind-hearted doctor, who was walking by, a private practitioner with a consultation practice, stopped to take note. While everyone else had walked away or had looked on with empty sympathy, this man took her to his own consultation room. It turned out that the girl was a tsunami-orphan. She and her brother (now 14) had been rejected by the extended family during the aftermath of the disaster and had made a living on the streets, she working at odd jobs and the boy going out on deep-sea fishing boats, each trip for weeks at a time. In short, she had no family at all.
The doctor sent requests for help all over the country, looking for an institution that would accept the girl for care. When Pallium India heard about it and established contact with a palliative care team in the girl’s city in another state, two days had elapsed. The girl was now in a “terminal care centre” run by a religious organisation. We found that they did what they could but had no palliative care facilities and could not offer pain relief or the appropriate wound care to the girl.
A palliative care doctor and medical student in the neighbouring city hired an ambulance the next day and drove for three hours to the terminal care centre, carrying with them essential medicines and supplies. They found the girl still in agonising pain, maggots still thriving and feeding on her legs. They gave her morphine in enough dose to take care of her pain. They knew that the right dose of morphine does not cause significant sleepiness. They took her to a palliative care centre in another city.
The girl, now pain-free, started calling the medical student ‘Anna’ (elder brother) and the doctor ‘uncle’. On the way, she wanted them to stop for her favourite fizzy orange drink and an omelette – the ultimate of luxuries for her. She got them. At the palliative care centre, started on regular morphine, she started calling everyone ‘Akka’ (sister) or aunty. The maggots were taken care of. The treatment for maggots is simple but something that is practically never taught in medical and nursing colleges except in theory. It is much easier and less smelly to get rid of the patient.
With the maggots gone, the wound clean and free of pain, the girl was chatty. It was clear that she was near the end of her life. She wished to see her brother again; but the boy was out in the deep sea. She wanted to watch television; a television set was brought to her room. It was a vegetarian institution, but when she wanted chicken curry, they had it brought to her.
The girl died a week after reaching the place. But she got pain relief and life without the maggots and foul smell for five days. She got simple wishes. And she got love and affection. All that mattered. They mattered not only to her, but to us also, if we are to take pride in belonging to a cultured society.
We work with two burdens in India. One, we do not understand or promote palliative care. Second, we think it should be only for the end of life. This girl, even before the diagnosis of the cancer was established, should have got pain relief. Her physical, mental and social well-being should have been attended to. All through her treatment in hospital, she had no family and the society should have taken responsibility to care for a duo of orphans both, in health and in sickness.
It would be easy to point fingers at the doctors, who discharged the girl because “there was nothing more to do” or at the nursing orderlies, who rolled her out on a trolley and abandoned her at the curb of the hospital. Our society has a collective responsibility to look after the ailing and the suffering around us. The World Health Organisation defines health as “physical, social and mental well-being and not only the absence of disease or infirmity”. If the healthcare system had accepted that it has a duty not only towards people with curable illnesses, but also has a duty to make life liveable for those with incurable diseases and if they had accepted that they have a duty to treat pain and suffering, systems would have evolved to make that happen.
A Lancet Commission report on global access to palliative care in 2017 estimated that seven million Indians are in unrelieved serious health-related suffering; but we know that this is a gross under-estimate. The Commission had to go on available data. There simply is not enough data about a large body of suffering out there. More than ten million would be closer to reality. An article published in British Medical Journal in 2018 showed that 55 million Indians are pushed below poverty line by catastrophic health expenditure every year. What happens to the children in those families? How many million children are deprived of education and of a future because of such destruction?
And this social destruction by healthcare costs is growing every year.
The picture is dismal, but there is some glimmer of light far away at the end of the tunnel. A 2017 National Health Policy does include palliative care, which according to World Health Organisation needs to be integrated into all healthcare at every level (primary, secondary and tertiary) and across the continuum of care from the beginning of the health-related suffering to the end, concurrent with the treatment of the disease.
But if this were to happen, each one of us would also have to accept the recommendation of the Astana Declaration of 2018, where world nations collectively declared that ‘healthcare for all’ is achievable only if it is “healthcare with all”. This means that without the participation of the community, true healthcare is not achievable. Central and state governments should have plans for palliative care as part of their health systems, of course. If the doctors, nurses and hospital attendants knew of another way of handling the situation, they would not have been placed in the position of having to throw the girl out on to the curb. They could have provided true healthcare if the community had accepted that it is essential and lent a hand.
The second Saturday of October, every year, is World Palliative Care Day. October 10 every year is World Mental Health Day. The two fall on the same day this year. These are not dates for a token recall. They are red letter dates in many ways because the way we treat those with suffering is a reflection of who we are and what kind of a society we will build. That has a material impact on how our children will grow and serve. In doing less for those who suffer, we short-change the sufferers, we short-change ourselves and we short-change the next generation as well. We make all of us poorer, forever.
(Jagdish Rattanani has also contributed to the article. Rattanani is a journalist and faculty member at SPJIMR)