Keaton Crull, a three-month-old baby from Indiana being treated in Kentucky, is on the verge of being removed from life support following objections from his parents. It is because they no longer have a say. Their parental rights over his medical decisions were taken away – and it looks like this drastic step could have been taken because they refused to give up on it.
Keaton has a severe case of muscular dystrophy and has broken bones from birth that do not heal properly. He is under pain control. Doctors say Keaton’s health is deteriorating and he won’t live a year, so sustaining life is futile. But according to the parents, doctors previously said he would only live for a month. These things can be very uncertain.
Doctors want to do away with life support and parents don’t have a say. Extract from the story of ABC57:
“They arrested him on… I mean August 22,” Kyle said.
According to confidential documents we obtained at a Kentucky Child Protective Services hearing, Norton doctors claim that the Crulls abandoned their son with “minimal involvement,” so the state of Kentucky has took custody of Keaton, giving the hospital the power to make a medical decision. instead of the Crulls.
“They expect us to be there with him 24/7, and we can’t,” says Kyle. “We have other kids and bills and stuff like that that we have to take care of, so we made the decision, as a family, to go there on the weekends,” Kyle says.
“I informed the hospital that I would be working between 5:00 a.m. and 3:00 p.m., so I couldn’t answer every call I received, especially as a new employee,” says Jennifer, adding that her last job hadn’t worked because of Keaton’s constant need for care…
“On the 29th (September) there will be a court and basically my wife and I have to stand up for why our son should take this drug and why we should keep fighting for his life and not give it up.”, Kyle said.
Difficult cases lead to bad decisions. The question is: where should the decision benefit of the doubt be given? I say in family. Some points.
- This is an example of “Trivialities” or “inappropriate care”, a theory of bioethics under which physicians or bioethicists are allowed to do the decision to stop life support instead of the patient or his family. In Texas, this can be done directly. In this case, the right to decide was taken away from the parents by a court, and apparently given to the hospital, where it does not belong. This is not the first case of this type of parents stripped of their custody because of such conflicts – as I documented in my book Culture of death: The era of “Do Harm” medicine.
- From what I can tell in the story, the doctors took this action because the Crulls refused to do what they wanted. If they’d agreed to disconnect, I doubt Protection Services would ever have been called.
- But the excruciating decision to go on and try long-term drugs is not so much a medical decision as it is value judgement. When the time is right to stop the fighting and let nature take its course, it shouldn’t be for physicians unless the desired intervention is physiologically ineffective. That’s not the case here. Clearly, the desired treatment works, that is, it keeps the patient alive.
- At the end of the day, these decisions are often a question of money as well as a conflict of values between physicians and family.
Coercion destroys civility in health care. Imposing frivolous care undermines patient autonomy. Cases like this are difficult, but they fuel the continuing disintegration of people’s trust in our medical institutions.