A seven-year-old with a certain chance of recovery was removed from ventilator support and died because his parents could no longer afford it; a 13-year-old girl died without life support because her parents didn’t want to spend any more on their daughter. Two paediatric intensivists -- Akash Bang and Arvind Kasaragod -- discuss the tragic ways in which economics and gender bias decide who will benefit from medical technology in India
Intensive care consists of life support -- ventilator, dialysis, intravenous medication, and nutrition -- along with intensive monitoring. The equipment used includes mechanical ventilation, equipment for acute renal failure, intravenous lines, nasogastric tubes, suction pumps, drains, catheters, disposables -- all provided by specialised staff. ICU expenses can be many times higher than treatment in a ward or room.
Patients are admitted to the ICU when their condition requires certain procedures and intensive monitoring. They are treated here until they recover to be cared for in a ward. Guidelines for admission to ICUs restrict admission to those who are expected to recover. Unnecessary admissions result in avoidable financial burdens and can prolong the distress of the patient and family.
Finally, once a person is put on intensive care, it may become legally impermissible to remove a patient from it, even when further treatment is futile and the family accepts the need to withdraw life support.
Two intensivists, one from a community hospital and the other from a corporate set-up, comment here on the dilemmas they face.
‘Cost is the deciding factor’: Akash Bang
Ethical challenges in intensive care arise out of three situations: because certain investigations or treatments are just not affordable; because a decision must be taken for or against a particular investigation or treatment, and the available scientific evidence in this regard is inadequate; and because developments in science have changed the definition of death.
The first one -- cost -- is perhaps the biggest concern in India.
Challenges in monitoring
Intensive care involves two things: intensive treatment and intensive monitoring. The focus of intensive care worldwide is shifting towards more intensive treatment modalities and intensive mechanised or automatic monitoring. Automated monitoring is ideal because it gives you minute-by-minute variations in body functions and the opportunity to act with the least time lag. Compare this with manual monitoring with human factors like fatigue, ignorance, inaccuracy and disinterest playing a part. How frequently can you check a patient’s blood pressure? Every 30 minutes? Every 15 minutes? Definitely not more than that. But we know that a steep drop in blood pressure that persists even for a few minutes could cause brain damage and start a vicious spiral of low blood pressure leading to more brain damage which in turn brings the pressure down further until it goes so low that there is multi-organ dysfunction and then failure. This can be prevented if there is minute-by-minute monitoring.
But the problem is the cost to the patient. We need specialised needles, lines and catheters for such monitoring. In most places, the patient’s family must actually buy these needles. This leads to the first screening: those who can’t buy the needle will back out at this point itself. Second, we need costly machines and paediatric intensive care units. Patients must cough up the money for all these. Third, intensive monitoring needs specialised nursing staff and doctors. Their salaries are also finally sucked out of the patients’ bills!
This is true for all types of intensive monitoring: invasive blood pressure monitoring for a patient with shock or infection; central venous pressure monitoring for a patient with cardiac or renal failure or shock; intracranial pressure monitoring for a patient with raised intracranial pressure, and so on. All these types of monitoring are so interlinked that they are needed for almost all seriously ill children. And the cost of the needle or catheter to even start this monitoring is between Rs 2,000 and Rs 5,000.
There are many situations where paediatric intensive care units (PICUs) in community hospitals don’t even start intensive monitoring. We know that one day of intensive monitoring could prove so costly that it could finance the cost of maybe five days of medical treatment for the patient. This poses an ethical challenge to us intensivists: we know that by not starting intensive monitoring, we are giving sub-optimal therapy, but we may still choose to do it as a trade-off.
Then there are PICUs where the child is not admitted until the parents come up with a deposit of Rs 15,000-20,000. The day the bill exceeds the paying capacity, the child is transferred to a less expensive hospital. They will probably justify this by saying: “Our motto is to provide the best possible care as long as it is affordable to the patient. Once the patient cannot afford it, we don’t believe in providing sub-optimal therapy.” Nobody is right or wrong here. Isn’t life full of shades of grey?
Apart from cost, automated intensive monitoring has probably led to overdependence on these gadgets. The clinical acumen, intuition and judgement that the earlier generation of doctors possessed and practised are being underutilised due to machines. I have seen trainee doctors noting down the patient’s heart rate from the monitor rather than by feeling the patient’s pulse. When everything is on display on the monitors, who has the time, energy and drive to crosscheck these by doing it manually?
Challenges in treatment
There are many essential but expensive therapies involved in life support: renal replacement therapy for renal (kidney) failure; inotropes/vasoactive medication for severe shock; liver transplant for liver failure; the ventilator for respiratory failure, etc. The most common therapy and a typical example would be the ventilator, the cost of which could range from Rs 500 to Rs 3,500 a day. A child may need a ventilator for a few hours or for a number of weeks.
Once, during my PICU fellowship training in Bangalore, I was involved in the care of a child from a very poor family from Madanpalle district in south Andhra Pradesh. He was brought to our PICU with Guillain-Barre Syndrome. This is a disease where the muscles become progressively weak and respiration becomes difficult -- all with a perfectly intact consciousness and comprehension. Recovery occurs after a period that could range from a few days to a few weeks. It is probably one of those rare instances where a complete recovery can be expected; you just have to tide over the period of muscle weakness.
Somehow this child didn’t recover quickly. We continued ventilating him as we knew that sooner or later he was going to recover. The family was poor so we took it upon ourselves to generate some money for him. Through the departmental fund and by talking to IT professionals, we gathered around Rs 20,000. However, sometime during the fourth week of ventilation, the family decided they couldn’t go on any longer. The child -- a seven-year-old -- understood that he was going to die. He was perfectly conscious; the only problem was his muscular weakness. He probably just needed a few more days on the ventilator. Due to the length of his stay, we had developed a fondness for him and used to play music for him on night duty. On the day he was being taken away by his relatives, he was a mute spectator to preparations for his own death. I can never forget his gestures signalling us not to take him off the ventilator. He left the PICU with tears in his eyes, obviously calling out for a chance to live. We counselled and requested the relatives repeatedly, but they had decided to take him home. One of the nurses had taken the relatives’ number and called the family the very next day. The family thanked us for all that we had done but informed us that the child had died within two-three hours of his departure from the PICU.
It’s a challenge to explain to relatives that intensive care may not yield the expected results. More often than not, they believe that if they are spending so much why shouldn’t the child recover? Or, worse, they may say: “You tell us exactly what the chances are that this child survives. Depending on your answer, we will decide whether to spend the money. And if we do decide to spend, we will decide how much.” How can anyone answer such a question? In children, it’s even more difficult (than in adults) to predict the outcome. They have very delicate systems which can head either way -- improvement or deterioration -- at the slightest trigger, and at very short notice. Sometimes with no notice at all!
An intensivist goes through extreme stress on- as well as off-duty. Practising intensive care can be very rewarding, and at the same time very frustrating. It can infuse you with life, zeal, thrill and enthusiasm. And it can also suck the life out of you. You can become a humble facilitator, or an arrogant demigod.
Which ever way it works, one thing cannot be argued: it brings you closer to philosophy, spirituality and the creator, whether you call it Nature or God. It makes you realise the most naked truth of human life -- that nothing is permanent. As they say, we must have courage to do what we can, humility to accept what we can’t, and the wisdom to understand the difference.
‘She’s a girl, just take the tube out’: Arvind Kasaragod
Paediatricians are the most humane group of people in any field. They rarely do anything that is not in the best interest of the child. But there are situations where, for example, the child has a malignant tumour and has just a few months to live, but on a ventilator. The parents say absolutely not; if the child is going to die let it happen. I have heard of doctors removing the breathing tube and putting the child into a car, with the knowledge that the child will die soon after the life support has been removed. This can’t be documented anywhere. Some of the cases which are recorded as “discharged against medical advice” will have been cases like this.
The other thing that I have seen is the huge gender bias. More often than not, if it is a girl the family doesn’t want to spend money. If it is a boy, they say: “Do everything you can.” This is true not just among the very poor; it happens even with the middle class. There was a 13-year-old girl with dengue shock syndrome. We got her late in the course of the disease, but we were able to resuscitate her. At the end of 24 hours we knew she was going to turn the corner. But by then the bill had touched Rs 80,000. We pleaded with the parents to give her 24 hours. The father said: “She’s a girl; her body won’t be good for marriage. If she had been strong she would have made it through by now. We don’t have a problem with withdrawing care. Just take the tube out, she is probably meant to die anyway.”
This is even more acute with neo-natal intensive care. Today, any baby above 26 weeks gestation, especially more than 750 gm, has a chance of survival. But at the counselling stage, if the parents are from a low socio-economic class, when we tell them what the medical chances are and what it is going to cost, they are quick to respond: “Transfer us to a public hospital. If the patient survives in spite of that, fine.”
The decision is finance-driven. Affordability is a huge issue. Even people from the middle class will try for another baby rather than attempt to save this baby.
(Akash Bang is in the department of paediatrics at the Mahatma Gandhi Institute of Medical Sciences, Sewagram. Arvind Kasaragod runs the intensive care department at Columbia Asia Referral Hospital, Bangalore)
Infochange News & Features, December 2010