While the author was dealing with a poor elderly father struggling to shift his gravely injured young son to a government hospital due to the high cost of intensive care, her friends across the globe were discussing euthanasia in the social media. While marginalised groups of people are struggling to access care in India, friends who have moved to developed parts of the world were discussing one’s choice to live or die! The poor father, after battling to save his son and reaching out to many people for help, could not save him. Early treatment might have helped the young boy. The incident left the author thinking about how the poor are denied care simply because they cannot afford it. Others debate when to pull the plug on the patient. … How many families can afford such care in India? When nearly 71% of the people are paying out of pocket for healthcare and 16% are pushed below the poverty line every year, can we even think of universal health coverage? It just sounds like a fancy term to be used at conferences and meetings because the ground reality is completely different.
On a day when we were busy organising the first anniversary celebrations of our charitable hospital, an elderly man came to me, seeking help. As a director of the hospital, I was busy with the arrangements for the programme and could hardly pay attention to the gentleman, who kept following me around. Initially, all I knew was that his adolescent son was in a critical condition and a government hospital had refused to admit him, after which he had been admitted to a private hospital. I decided to look into the matter after the day’s programme was over. However, he did not stop following me, and his expression said, “Can you do something soon?” This made me very uncomfortable throughout the programme. After the programme, I realised I was hungry and joined my staff for lunch… when I saw that this elderly person was standing outside the room. Feeling guilty, I left lunch halfway, called him to my chamber and said, “Tell me how I may help you.” He replied, “Get my son admitted to a government hospital in Bengaluru,” and mentioned a well-known tertiary care centre. I did not understand and asked him to explain in detail.
With moist eyes, physically drained, and with no hope, he said, “Madam, my young son met with an accident two days ago and is now admitted to a private hospital. He has not spoken since the accident. I can’t afford the intensive care and ventilator charges in this private hospital. Can you help me shift him to a government facility?” I wanted more information, which he did not have. Before talking to the treating doctor, I made many calls to government and private hospitals, asking about the availability of a ventilator and seeking help. It is always better to check for the availability of a ventilator before shifting the patient. My experience in cities like Bengaluru has not been good, as the refusal rate is high. I called up all government hospitals with a ventilator facility and a few medical college hospitals, but in vain. All of them gave me the same answer: “Sorry, we don’t have a bed with a ventilator.”
When I spoke to the treating doctor, he said that the boy’s condition was very critical and shifting him involved a high risk. Now I had the tough job of explaining this to the father. He seemed to be very clear on the situation: “Madam, anyway the doctors in this hospital are not treating my son. I’m not buying medicines from outside…I have no money. I will leave it to god and move my son to another private missionary hospital which has kindly agreed to support the patient.” I insisted that he discuss the matter with his family and let me know their decision.
The whole process took nearly 90 minutes and it made me feel that people in need may not get ventilators in government hospitals. With no insurance coverage, it becomes even more difficult for a family to mobilise funds. Most private hospitals charge a minimum of Rs 15,000 – 20,000 per day for ventilator support, and this does not include the other expenses. The patient’s’ family also has to purchase medicines, along with syringes, needles, and in some hospitals, even plaster. How can a daily wage labourer afford this?
On my way back home, I opened my social network application and found heavy traffic in my doctors’ group, which was discussing euthanasia and the patient’s right to pull the plug, the role of the family, etc. The arguments both for and against were very intense. The case of Aruna Shanbaug, an Indian nurse who spent 42 years in a vegetative state after being grievously assaulted at work, had ignited interest in this subject among my fellow doctors across the globe. Some friends strongly supported the patient’s right to die rather than suffer. Others were concerned about the role of doctors in communicating about the situation to the family and helping it to take a decision. Doctors in the UK and the USA viewed the subject differently from those in India.
During the discussion on individuals who are terminally ill or in severe pain, and their right to live or die, I wondered about those patients whom a doctor or hospital administration decides not to treat because they or their family cannot afford treatment. What about their rights? Maybe in India, the poor patient would say that his/her fate was not good. Blame it on god. Private hospitals might say, “We have invested so much that we can’t afford to give free care.” Is it ever ethical to deny care?
The father could not save his son even though he lived in a metropolitan city and reached a hospital on time because there was “no free bed with a ventilator” in the hospital. Early treatment might have helped the young boy. However, the father made no complaint because for him, “it was god’s call”. The decision to pull the plug comes only when a family is in a position to afford care… up to a point. How many families can afford such care in India? According to the NSSO survey, utilisation of the public sector is slowly decreasing; and in 2014, 68% in urban areas have used the private sector for inpatient care. Eighty per cent of the rural population and 82% of the urban population are still not covered under any public-funded health insurance schemes (3). When this is the current situation, can we even think of universal health coverage (UHC) in the near future? I hope there will be more measures taken to achieve UHC than just discussing it in meetings and conferences!
Conflict of Interest: None to declare.