As doctors we do our best for patients. As in many surgical cases of Neurosurgery, Oncology , we are faced with issue of reality vs ethical ego. Is survival the outcome or survival with out the disability? Lets look at it from the realistic view. Everyone is bound ethically, doctors are ethically bound to save life and morally obliged to welfare, and no doctor would like abandoning any patient , so I will not blame anyone here. Rather than playing blame games , it is a critical and analytical aspect. Only through criticism and questioning can things change and solutions improve. Without a question, there isn’t a space for search and study as well.
In Charles Darwin’s Theory of Evolution, one of the theories is ” Survival of the fittest” which always seemed logical in all other domains, but when it come to saving of extremely premature babies, the clause is silenced and we are taking deeper dives into our interest. Now the neonatologists are able to save babies as premature as 23 weeks in the most sophisticated NICUs, but not without any consequences.
Two “egoisms” are commonly distinguished:
- (1) Psychological Egoism, that every human act is motivated by a desire to promote one’s self-interest
- (2) Ethical Egoism, that each person ought to act in such a manner as to promote (or maximize) her or his self-interest
In our part of world, where economy is a major issue, we have data to present to the parents as survival of extreme premature babies are tiny and we are still struggling to save the babies born in the community and improve our statistics. We still do not have the facility for saving a preterm less than 27 weeks, to utter the fact. But soon the demands will be there as what we do is all what the guidelines the West and Developed nations set, as far as today.
But where the society is resourceful and sophisticated setup are available, the line of demarcation is going lower in terms of gestation. What was considered an abortus in the past, we are now able to save the babies and are now considered viable. Enthusiasms are deepening and time can improve all the outcomes. But question is can we create an alternative setup for maternal womb like those seen in Si-Fi movies. If so, it is worth, only when we can give most of them an life-free of disability and a productive social and economic life.
The Issue – Line of Gestational Demarcation
There is a huge debate and division among the people and doctors as to which gestation a line should be drawn. What will decide which baby will go to NICU? Will it be outcomes, countries prosperity, availability of sophisticated facilities or gestation? How much can we do, is it a miracle happening or just an ethical ego? We are dragging the parents into ethical and moral obligation by bringing down the survival lines and viability lines.
The Cost – Price of Saving a Preterm
And the cost in hospital bills could come in millions, leaving apart the caring for the special needs the child may need, might completely compromise the living condition of parents and opportunity of next sibling. And the cost might initially be bore with emotions but will soon become both psychological and financial issue even for economically sound parents.
How much is it against nature?
Third issue is when ever people have tried to go against nature’s rule, we have suffered badly. Even in centers with the best neonatal intensive care facilities, survival rates are about 30%. -45% survival rates at 23 weeks – around half of whom have significant disability, defined as cerebral palsy with motor impairment; learning difficulties with an IQ of less than 70; and, in a small number of babies, blindness or deafness.
We should be talking about a disability free survival rather than outcomes merely in terms of survival. We are only able to say we brought premature survival rate up from 19% of 1995 as to now.
How much reality and how much of expectation?
As we explain to parents of the outcome of various complications of prematurity, do we do it at the first moment. About the possibility of Intraventricular hemorrhage, BPD, Cerebral palsy, Growth and learning problems, vision and sight, the cost of management of PDA, IVH. Most of we do, as the course get complicated.
Do we give the actual data of chance of event free survival and long term outcomes of various conditions?
We are scared that a negative counselling will cause parents to withdraw decision of treating the baby and it feels pretty unethical to take a live baby without providing NICU care . On the other hand, a very positive counselling can lead parents to unrealistic expectation and cause issues later on. So a balance of truthful counselling is needed, show outcomes and future as per current understandings.
Final Verdict- is still a question
The margin of Gestation for Saving a Preterm will always vary between the Developed world and developing world. Priorities will also vary in these two different economies. But as we tend to follow the West blindly, we are ethically and morally bound as the newer developments occur there.
How do we balance and create a realistic margin and is saving extremely preterm babies doing justice on the babies, parents and economy or just creating more suffering for the baby and parents.
The debate is not created by me , but its a debate going around in many Ethical communities, Doctor communities and I guess it is a thing that internally conflicts even the Neonatologists.