The child with cancer seems to be on the last lap of his life. He screams in pain incessantly and does not get pain relief. His mother has been told a cure is not possible, but as his condition deteriorates the doctor suggests that he should be taken to the intensive care unit. “You will be able to see him twice a day,” they reassure her. She hugs the child and cries forlornly. She fervently prays for death to relieve him of his pain.
An elderly man lies wheezing on the hospital bed. He has been in and out of the ICU thrice in the last 2 months. He begs the family not to send him back there again. He asks to see his children; he has not seen his daughter in the last 8 months. Before she arrives, the hospital tells the family, “His oxygen saturation is dropping; we have no choice” and wheels him into the ICU despite his protests. The daughter arrives the next day and gets to see him for 5 minutes. While they yearn for a last hug, the numerous cables, bleeps and alarms stand in their way. The girl weeps uncontrollably, hugging her mother. But the man is unable even to weep; his throat has a breathing tube which prevents him from speaking, and his arms and legs are tied to the bed. The doctor does tell the family that there is no hope; and they venture to ask, “Can we take him home?” The doctor says ‘No’. The patient’s life depends on the machines and the doctor is not sure of the legal position of taking him off them.
The middle-aged manual labourer with advanced cancer had undergone a futile surgery, but the sutures gave way because of distended abdomen, what the doctors called a ‘burst abdomen’. They offer another surgery to close the wound up. But the family does not have the money. The mother had sent the son home to mortgage or sell their home and bring in some money. But it was an impossible task to accomplish overnight. The young man said they would get only a pittance at such short notice, not enough for the hospital bill. The mother is furious and curses the boy. They all weep in anger.
Do these stories sound like exaggerations? I can assure you they are not. These are all real life stories.
This is where palliative care can help.
Relief from suffering
Palliative care is an approach that improves the quality of life of patients and their families facing problems 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, psychosocial and spiritual.
India does have some of the best cancer treatment facilities in the word, but less than 2% of the people in pain have access to pain relief. Inadequacies in professional education as well as legal and procedural barriers stand in the way of relieving suffering.
But public awareness is important. We need awareness of the depth of suffering. None of us should judge someone else’s pain based on our personal experiences, such as pain following a fracture, an operation or labour pains. The depth of pain or other symptoms in many disease states like cancer can be beyond our power of imagination.
Devastating health expenditure
And the impact of catastrophic health expenditure is a growing threat – a giant menace that grew silently over a few decades that we almost failed to notice it. A 2008 report in the British Medical Journal points out that in one year more than 5.5 crore Indians are pushed below the poverty line by healthcare costs and that this is a growing phenomenon. India is among the world’s worst 12 countries as far as such economic destruction by healthcare expenditure is concerned.
Health is officially defined as “Physical, social and mental well-being; and not merely the absence of disease or infirmity”. Yet by not treating pain or other symptoms and by ignoring mental and social well-being, by adding insult to injury in someone’s twilight years by aggressive inappropriate disease-focused healthcare, and by grossly and adversely impacting health by the cost of care, the healthcare system fails to provide true healthcare.
This is by no means to say that healthcare has only negative impact on public health. No doubt it has done wonders by eliminating many infectious diseases and by keeping many non-communicable diseases under control. But everything has its rightful place. Attention to well-being and to quality of life is what we have failed to provide.
It is not as if solutions are not easy. Palliative care is low-cost – we can treat pain and other symptoms effectively and affordably. We can replace inappropriate hi-tech intensive suffering with compassionate care aimed at well-being and by enhancing relationships, palliative care can solve many of the issues at end-of-life. It can directly reduce catastrophic health expenditure and healthcare costs for the government. For busy hospitals, it can free up precious intensive care beds and equipment for those who need it in life saving situations.
The beginnings have been made. In 2012, India’s Ministry of Health created the National Programme for Palliative Care, which is currently being reviewed. In 2014, Parliament changed the law governing access to opioids, making it easier for hospitals to procure them. The Medical Council of India has reformed the MBBS curriculum and from 2019, medical students will learn the basics of pain management, ethics, communication and many other aspects of palliative care.
But in our country, implementation of most of these changes is slow. And often loving families and ill-informed relatives may inflict more suffering by insisting on aggressive life-prolonging treatment even when it is futile. If we all face the issue, acknowledge the problem and decide to do something about it, the healthcare system and those who run the country can be on the same side and easily effect change.
But much too often we shy away from unpleasant things, but we cannot avoid it forever. If only we muster the courage to talk about it, solutions will emerge.
The Astana declaration of 2018 on primary healthcare declares that “health for all has to be health with all”. Health is everyone’s business and we need to discuss them in our families, the communities that we live in, our work places, wherever. Remember, there will come a time when cannot run away any longer.
Dr MR Rajagopal is the Director of the Trivandrum Institute of Palliative Sciences and a 2018 Padma Shri awardee.