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Moving from the Right to Refuse to the Responsibilities of Control


When infants are born very early - 22, 23, 24, or 25 weeks into a pregnancy rather than at the full term of 40 weeks - they face a future of extreme uncertainty. Many die within 12 hours. In order to survive, all require active, aggressive treatments for problems with their lungs, hearts, and other organ systems.

Of those born at 22 weeks, 95% die without leaving the hospital. At 23 weeks, 74% never leave. By 25 weeks, the percentages have flipped: 75% leave the hospital alive. 

Of those that leave the hospital, about half have moderate to severe neurodevelopment impairments. They may have cerebral palsy, limited cognitive, communication, and motor skill abilities, or some combination of these.  

Historically, medicine has been a paternalistic enterprise. Decision-making power was concentrated in the hands of the medical team, in the physician most of all. Should the patient know about their diagnosis? It was the physician’s call. What treatment should this patient receive? It was the physician’s call. Should we try to save this premature infant? Physician’s call. Should we resuscitate this patient? Physician’s call.

But it’s no longer solely the physician’s call as it once was. Physicians are no longer expected to make these decisions for patients. Instead, power has been given to patients as decision-makers. The legal demands of informed consent have given patients the power of refusal. Physicians are now expected to consult the patient’s values and views before decisions about appropriate medical care are made.

We shouldn’t be surprised, then, by the recent NPR storythat reports how physicians ask parents to make decisions about aggressive treatments for neonates born at 22, 23, 24, or 25 weeks. Historically, the physicians decided when it was worth it to repair the heart or to perform the surgery. Now, they’re asking the parents to decide. 

It’s hard to fathom. In the past 24 hours you’ve had the surprise early arrival of a child. Born at 22 weeks, it only has a 1 in 20 chance to leave the hospital alive. Now we find out it needs surgery to survive at all. Will your child survive the surgery? We don’t know. Will your child leave the hospital alive? We don’t know. 

But it’s your call. Should we put your child (and you) through the struggle of a surgery and recovery with limited (if any) prospects for survival? Or should we simply provide comfort? 

Patients and their surrogates are now more powerful than they have ever been before. They have gone from demanding the right to refuse to the responsibilities of control. They are required to consent to the care they receive. They are encouraged by pharmaceutical companies to ask for medications. They are required by insurance companies and their high-deductibles to decide what medical treatments are worth the cost. They are encouraged to plan for their care at the end of life. And they are required to make decisions about aggressive treatments for their premature infants. 

It’s one thing for parents to claim the right to decide how their premature child should be treated. It’s another thing to make the decision to stop aggressive treatment.

Demanding the power to make a decision is one thing. Taking responsibility for that decision is something else.