Palliative, or hospice, care is difficult, if not impossible to find and a conspiracy of lies surrounds the deathbed: doctors are afraid to stop treatment for fear of the family’s anger and families hide the truth from their loved one for fear of what it will do to him
The conclusion I draw from the recent Economist Intelligence Unit Report on the quality of the death experience in 80 countries is that India is not the place to die in. The country is close to the bottom in the rankings – 67 – but the difference in scores between the bottom 20 is negligible if you are a person in pain at the end of your life and there is no help to be found.
That said, India was at the bottom of the list when the last ranking was done in 2010, so there have been some efforts at improvement (or other countries have simply gotten worse).
Palliative care, or care for the terminally ill, has advanced as a special branch of medicine in many parts of the developing world over the last 75 years. With advances in almost all aspects of medical science, diseases like cancer and AIDS that once killed quickly can now be controlled for many years and better public health systems in general mean that people are living longer world wide.
While both are good things in themselves, they created new challenges. Among them was the creation of a whole new class of patients who were called the terminally ill. They would linger, sometimes for years, in pain and suffering, victims, as it were, of the good nutrition, living conditions and health care the developed world is so justly proud of.
Palliative care was practiced by religious institutions going back to the 11th century, but it only emerged as a separate, scientific approach in the 1960s with the work of Dame Cicely Saunders in the UK. A doctor herself, she questioned the foundation on which medical care for the terminally ill had been based until then: continue to try to cure until the very end.
Dame Cicely introduced the idea of accepting death into the equation and everything changed. Pain management takes on a whole new meaning, for example, if you know the patient is dying. Who cares if she gets addicted? You give what she needs to be comfortable and pain-free. That reduces the fear and anxiety and that is the other equally important pillar upon which palliative care rests: the individual, with all her dignity and humanness intact, must be at the heart of the entire process. If the patient is anxious or afraid, she cannot have a peaceful death. So her emotional and spiritual needs are given as much importance as her physical ones.
Here in India, palliative, or hospice, care is difficult, if not impossible to find. A conspiracy of lies surrounds the deathbed: doctors are afraid to stop treatment for fear of the family’s anger and families hide the truth from their loved one for fear of what it will do to him. In his heart, the patient almost always knows what is happening (even children understand when they are dying) yet, for fear of upsetting their families, they suffer alone in silence.
This is perplexing in a culture which traditionally is open to and accepting of the natural cycles of life. Dr Anju Virmani, a Delhi-based endocrinologist, spoke to me about her experience as a young resident in AIIMS just 25 years ago:
“The tragedy is traditionally we do/did have this spirit: one was not supposed to die in hospital. It was considered inauspicious. In our residency days we have had scores of families say ‘OK Doc if you think death is inevitable, please let us go home.’ They would go LAMA (left against medical advice). The person would be at home, surrounded by loved ones, not go with doctors poking them desperate to find veins, give shots, give intracardiac injections…”
Those days are now gone. Doctors are legally bound to do all that is required to prolong life as long as the patient is in the hospital. This effectively eliminates poor people who can no longer afford treatment anyway and are discharged as soon as their resources give out. The rich are encouraged to do all that they possibly can (“You wouldn’t want to feel you hadn’t tried everything you could to save him,” distraught families are often counselled. “At least you’ll be able to rest knowing you left no option untried.”).
In the end, neither the rich nor the poor are well served. The poor die at home at least, in familiar surroundings and cared for by people they know and (hopefully) love. But they often die in agonising pain and squalid conditions, with people who do not have the skills to help them cope either physically or emotionally.
The rich, on the other hand, may die in clean and hygienic surroundings but they are just as likely to be in extreme pain, at least some of the time. Pain management is a science poorly understood in India and even when drugs are available they may be doled out in doses too small to be helpful or spaced out at arbitrary intervals which seem designed not to relieve suffering but to test endurance. What possible benefit can there be to bearing pain needlessly?
The irony of this particular problem is that India is the world’s leading manufacturer of morphine, the drug of choice for managing excruciating pain. It produces most of the world’s supply, yet exports over 90% of it, callously denying its own people – numbering seven million, according to a Human Rights Watch report – the relief they themselves cultivate, harvest and extract.
Terrified of its addictive properties, which are undisputed, the Indian Narcotic Drugs and Psychotropic Substances (NDPS) Act severely curtailed the medical use of Morphine, making it so difficult to obtain that most doctors never even bothered to apply for the six licenses which were required. Its scarcity meant that no one knew how to administer it; its use is not taught in 80% of the country’s medical schools.
Last year, however, an amendment to the NDPS Act was passed by Parliament, loosening the restrictions on morphine and paving the way for better pain relief for the terminally ill within the country.
There are other promising developments. Kerala has pioneered a palliative care movement which is a beacon of hope for India. The Institute of Palliative Medicine is just one such institution in the state – it runs certificate courses for doctors and nurses in hospice care, pain management and emotional support for the dying and it equips community volunteers – after a short, practical training – to provide spiritual, social and physical support to the dying. Local donations pay for more than half the program; the government covers the rest.
Perhaps the movement toward hospice in Kerala is so successful because it taps into that traditional mainspring Dr Anju Virmani referenced – perhaps it has not yet been totally forgotten.
It’s a start. It’s also a reminder that death, done well, can be a beautiful and liberating experience, a chance for families to come together and to heal, to share memories and hope, to embrace both the past and the future and to complete the great circle of life.
This is an issue we all have a terrifyingly total stake in: because not one of us is getting out of here alive.
The author is American by birth and a writer by profession. A mother of three, she has lived in India for the past 34 years with her Indian husband. She is co-founder and director of the Latika Roy Foundation, a voluntary organisation for children with disability in Dehradun. She blogs at www.latikaroy.org/jo