Baby RB: Ethical dilemmas of modern medicine

In the days before informed consent – when doctors knew best and it hadn’t occurred to patients that they had rights – newborn babies with life-threatening birth defects were declared “stillborn.” The motives were compassionate: Spare the parents an agonizing choice and a lifetime dedicated to full time care. This medical practice continued well into the post-World War II era.
Today, due to a combination of technological advances in medicine and the rise of bioethics, that’s not what happens. Premature babies, for example, can be kept alive. Those first few months may be very difficult on the parents psychologically, and — if they have good health insurance — may cost a million dollars, but premature infants are saved all the time.

Preemies can even grow up to live relatively normal lives. Looking at the bright side, a study published in The New England Journal of Medicine found that 20% of very premature infants had no problems at age six — problems such as cerebral palsy, IQ in the special needs range, and hearing and vision problems.

An entire life lived on a ventilator

Other babies, premature or not, are born with life-threatening deficiencies that preclude a normal life. They too can be kept alive with advanced medical care. No longer are parents spared an agonizing choice – assuming again there is adequate insurance.
In the UK, insurance is not a problem. Everyone is covered by the National Health Service. Last year a baby boy known only as Baby RB was born in England with a rare subtype of a genetic neuromuscular condition, congenital myasthenic syndrome. Almost all of his muscles were useless: He could not move his arms or legs, he rarely opened his eyes, and he could not breathe on his own.
Within an hour of his birth Baby RB was connected to a hospital ventilator. He remained there for the first year of his life. His airways were regularly suctioned to remove fluids. Since his brain was fully functional, he may have found this procedure painful, but there was no way to know.
Baby RB’s young parents were separated. The hospital argued that life support should be withdrawn and, with the mother’s support, took the case to court. The father adamantly disagreed. Here’s a news report on the court proceedings.

Baby RB’s father reconsidered his opinion after hearing medical evidence. The hospital’s legal team argued that the baby faced a “miserable, sad and pitiful existence.” According to his doctors, the child could only look forward to “a future of painful operations” and was unlikely to see his third birthday.
Baby RB was taken off his ventilator on Friday, November 13 and died in his mother’s arms.

Welcome to the machine

In the twenty-first century, no one – no parent or patient anyway – would argue that life-and-death medical decisions should be left to doctors and hospitals, relieving us of the burden of agonizing decisions. This is the modern medical world today, modern both in technology and in patients’ rights.
In the future – in highly developed first world countries at least – medical technology will prolong the lives of millions: Infants, the elderly, and all those in-between. Lives that would simply have ended without life-saving technology will be tethered to machines. And agonizing decisions will become increasingly common.
Thanks to Thaddeus Pope and his blog, Medical Futility, for updates on this story.
Related links:
Baby Isaiah May, October 24, 2009 – March 11, 2010
Baby Isaiah: Ethical dilemmas of modern medicine (1)
Baby Isaiah: Ethical dilemmas of modern medicine (2)
The death of a child
Death be not visible
The enduring benefits of saving children
Climate change: Bad news for children’s health
When a doctor’s child is ill