Sipping tea on a cold winter morning in Oxford, a ghastly story back in India caught my attention: premature twins presumed dead, then one found alive. But as I read further, the horror of the tragedy got worse and worse. If true, the babies had been unbelievably handed to the shattered parents in a plastic bag!
I work as a neonatal consultant at the John Radcliffe Hospital in Oxford. Every year, we care for about 8,000 deliveries of which some 18% are born extreme preterm with a birth weight of less than 1,500 grams. The story of the twins born at 22 weeks at New Delhi's Max Hospital is an absolute tragedy – not just for the babies and the parents but, yes, also for the clinicians.
So what would we have done in a similar situation?
22-WEEK PRETERM BIRTH: NOT VIABLE FOR LIFE
Firstly, as a neonatologist, I would not expect to be called in to attend the delivery of babies which are that preterm. To put it in context, when a mother carries her baby for 9 months, that's 40-week gestation. Survival at 22 weeks gestation is only about 3% in the UK and 5% in the US. These babies, weighing anywhere between 250 grams and 500 grams, are extremely fragile and have such severely immature organ systems that current technology struggles to transition them to full maturity. It is accepted practice to not offer resuscitation at 22 weeks. This may change in the future, but for now, the prognosis is grim for babies born at 22 weeks.
TALK TO PARENTS, EXPLAIN, CARE
Before delivery, however, our obstetric staff would counsel the parents on the abysmal outcome of babies born so prematurely. Many would not even survive the process of labor. However, if they did, parents would be offered support and may choose to hold the babies, to stay with them and take their time to say their prayers and goodbyes. For a baby born alive, the parents would be explained that the babies might continue to show signs of life for several minutes or even hours. It may sound shocking, but we do come across cases where the heart rate was so faint after birth, the breathing so shallow and intermittent, that the doctor attending the delivery presumed that the baby is dead. So while it is crucial that the healthcare professional is 100% sure before death is pronounced, there have been cases where death has been falsely presumed.
NO VENTILATOR SUPPORT: MAX DID THE RIGHT THING
The Max hospital was within the norms of practice in letting the parents go and not putting the babies on ventilators. One could argue that the hospital, which then put the surviving baby on the ventilator, was doing something that we wouldn't (given the abysmal outcome) usually do in the Western world. But I can only imagine how difficult it would be for the doctor in this situation to say no to parents who have just discovered that their baby was alive and have rushed in with hope and expectation. In the UK too, if parents insisted to place a 22-week-old baby on ventilator, we would find it extremely hard to refuse. However, I haven't (in my practice) come across a single case where parents have pushed for this.
BABIES IN PLASTIC BAG: NEVER EVER
Survival statistics aside, the handing of the babies in plastic bags (if, indeed this is what happened) was unbelievably callous. It reflects a poor attitude towards human dignity and the lack of understanding of the enormous tragedy befalling the parents. Here in the UK, many parents would consider the death of a baby at 22 weeks as a miscarriage and may choose not to carry out final rites. But if they wanted a burial, the body would be handed over respectfully.
CHANGE WORK CULTURE (SLOWLY)
The easiest and wrong thing to do would be to just fire the doctors and end it there. Mistake made, guilty found, punished and now let's resume operations. The difficult and right thing to do would be to take this opportunity to explore and fix the 'culture' of the place. Culture, simply put, is 'is the way we do things around here'. Readers in India may be surprised to read about the scandal at the Staffordshire Hospital in England. Mortality was unexpectedly high which prompted a public enquiry. The statistics showed excess mortality related to a chain of clinical mistakes. However, it was the narratives of patients that were heartbreaking. For example, some elderly patients were left to quench their thirst from water in the flower vases! The commonest word in the word cloud of the public enquiry report of Sir Robert Francis was, surprisingly, 'culture'. He described a hospital culture where poor practices thrived, people were scared to report bad practices and how perverse incentives allowed the worst practices to flourish. Culture can be changed but the rewiring of practices takes time and concerted effort. It is not a course that one can attend and learn from, but a continuous cycle of learning and reinforcing good practice.
COMPASSION IS NOT AN ADD-ON OPTION
I may be accused of not understanding the peculiar pressures that face doctors in India who have to prioritize urgent care over the perceived 'luxury' of time that we have for compassionate consoling in the West. I would disagree. Compassion is not an add-on option and it has to be demonstrated in practice as much as felt. There is no such thing as a trade off between profit margins and 'soft skills'. Our business is compassion and everything else stems from it. Corporate hospitals need to have (more of) a facilitating attitude towards compassionate practices and create guidelines to support it. A compassionate attitude of staff in clinical medicine is more important than all the fancy science, star CVs, flashing monitors and state of the art kit put together.
Numerous studies have shown that the poor/inconsiderate/uncompassionate communication is at the core of why patients sue. So investing in a programme, which embeds a culture of transparency, openness and compassionate communication, makes both moral and financial sense. I would suggest that they set up a Bereavement Service (and make it free).
But first, make contact with these poor parents, meet them if they are willing and then listen to them. When you think enough listening is done – listen some more (and switch your mobile phone off when you do!) – and then apologize for the pain they have gone through. Don't do a non-apology. An apology is not an admission of guilt, but it an acknowledgment of the pain they have been through. And tell them what you would do so that other parents don't go through this experience.
WHAT ABOUT THE DOCTORS?
Let's not forget the doctors who have been through this awful experience. An enquiry is underway and I am in no position to pass judgment (though in the public eye – they have been judged already!) on their culpability or accountability.
However, it is worth remembering that doctors are capable of self-flagellating themselves far more that any recriminations that you can throw at them. These doctors need our support first and foremost. Support and accountability are not mutually exclusive and I am not making a case for accepting poor practice or pleading to save the two from my own tribe. Research repeatedly tells us that more often than not, errors are related to poor systems rather than people. There may be issues relating to how protocols have been designed around death and dying, training issues, workload etc. Again, these are not excuses to escape accountability, but failing to grasp the whole picture will only ensure that errors will happen again.
To the powers that be – let's not threaten to shut down the hospital. As happens with all such tragedies, righteous anger and an urge to punish subsume the narrative of human pain. Both doctors and patients will continue to be victims if the only response we can come up with are recrimination and finger-pointing.
(Dr Amit Gupta is a Neonatal Consultant, John Radcliffe Hospital, Oxford. Views are personal and do not reflect those of Oxford University.)
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