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The Daily Mail from the UK reports that a woman in Great Britain held her baby for two hours until he died while doctors stood by, refusing to help. Why? Because he was born two days too soon. Guidelines in Britain hold that any baby born prior to 22 weeks not be resuscitated because such resuscitation would be futile and the baby would die anyway. Little Jayden was born at 21 weeks and 5 days.
Even if the mother pleads for help? Which she did? Sorry-no can do-was the message to her.
Such is the effect of clinical care guidelines on medical practice, guidelines in Britain developed by a think-tank called the Nuffield Council on Bioethics, guidelines that extinguish human compassion from the care equation and provide cover for doctors to deny care and for the National Health Service (NHS) to save money. Jayden was born and died on Oct. 8, 2008. His mother, Sarah Capewell, now leads a campaign to change NHS policy on treating premature babies.
As an OB-GYN, I find it difficult to picture an actual physician refusing a patient's plea in such a circumstance. Theory is one thing. But standing toe-to-bed watching a mother holding her dying child and saying no chills my soul.
Extreme prematurity is not an easy issue. The earliest survivals on record occurred at 21 weeks 5 days and 21 weeks 6 days. Many times, the babies who survive such prematurity are left with lifelong physical and mental disabilities and always the cost of such care startles our fiduciary sensibilities. (Over $1 million is not unheard of.) Thus, those who see no value in imperfect life or fail to see the worth of expensive life often carry the day in committees that set guidelines.
The Daily Mail article describes the British Association of Perinatal Medicine doing some fast backtracking following this incident and the mother's complaint, saying the guidelines were not meant to be a "set of instructions." But guidelines soon become protocols and protocols morph into rules; rules that, if broken, require explanations and result in discipline for the rule-breaker. Rules that, if followed, save the NHS millions of pounds.
There have been times I've told mom and dad that resuscitation would be futile and that they should cherish the short time they have with their child prior to his passing. I've never fallen back on a guideline to justify my actions, however. I've simply told the parents the baby would not, could not survive our best efforts. But I've also never turned down a request to help a baby if asked.
One night in my residency, a young woman experienced preterm labor. She was deemed too early for intervention (but was close to the line) and went on to experience an unsuspected breech birth, which I attended. Unfortunately, the baby's head became stuck in the mother's cervix, making delivery impossible and death certain for the struggling premature baby. I cut the mother's cervix to release the baby's head, much to the parents' relief. The baby died in spite of resuscitation efforts. Although my superiors criticized this intervention, I can still see the faces of the parents as their baby struggled and wiggled, half in and half out. I've no doubt I did the right thing.
The medical cutoff for extreme prematurity is a target in motion, with modern technology resulting in survival of more and more premature babies. Such a moving target contradicts hard and fast rules and should require the best judgment of those physicians at the bedside. Doctors should bring together all the information possible-the stage of the baby's development, the parents' wishes, the availability of treatment, the doctor's skills-then reach a compassionate and appropriate decision with mom and dad on board.
-Matt Anderson is a practicing OB/GYN in Minnesota and blogs regularly at mdviews.wordpress.com