I am appalled at this Baby Joseph story on so many levels.
The issue is who has control, not the baby’s end or quality of life.
The parents’ control must be limited by reality – ie an ethics board.
Because there is a point at which attempting to maintain a life is torture and in the desperation to keep their child alive, the reality of the torture is lost on the parent.
The refusal to give up hope heedless of the cost is harming the patient and the parent and the health care system – not only by diverting resources that triage practice demands be spent on patients who have a survivable chance.
Worse is that godbots use this as a wedge issue to divert money and energy away from healthcare and solutions that improve the quality of live for everyone; to create an conflict ridden environment, where the apparent stakes are ramped up beyond reality into a life and death struggle of david and goliath – but where David is not the hero, but a selfish, frightened child defying goliath/authority.
By appealing to a vague deity who claims all life is sacred (regardless of quality), but holds out a promise of eternal bliss or torture.
If religious belief has any truth for the believers – then baptizing the baby and sending it off for eternal bliss in heaven would be the preferable action to maintaining the baby on machines, tortured in status in a state of life, but not having a life at all.
The actions of believers is not only inconsistent, but at odds with their stated beliefs.
So they distract us from what their actions and stated beliefs are really achieving, by dragging us into a debate over what they claim they are doing and saying.
We need to not engage them on their terms – but on ours – which is on the terms of reality.
If they are so sure that there is a heaven, then why do they fight so hard against removing life support?