Mar 172006
A UK judge ruled earlier this week that a hospital could not, against the wishes of the parents, turn off the ventilator of a 19-month old child known only as Baby MB. The child has an extremely severe form of spinal muscular atrophy, even more severe than my own form of the condition. The judge ruled that the child is likely fully aware of his environment and takes pleasure from simple things like watching cartoons and being with his parents. However, the hospital is not obligated to revive the child if he goes into cardiac arrest or administer antibiotics if he develops a respiratory infection.
It’s difficult for me to read about this case and not relate it to my own circumstances. When I read some of the statements that medical experts made during trial about the child’s perceived quality of life, I cringe. They would probably make a similar assessment of my quality of life, even though I would strong disagree with them. But I also don’t think we can avoid discussions regarding the appropriate use of limited medical resources. Would the judge have ruled any differently if the child had been severely brain damaged? Should we look at a person’s functional level of cognition when deciding whether to devote thousands, possibly millions, of public dollars to caring for that person over a lifetime? Do I have a fundamental right to consume all of the resources that keep me alive and comfortable?
I’m not saying I want to be tossed in a ditch and left for the wolves (although I’m afraid the wolves wouldn’t find me terribly filling). Cases like this illustrate the monumental difficulties of establishing standards for allocating limited health care resources, should that ever become necessary. Let’s hope we can fix our broken health care system before we reach that point. In the meantime, I wish Baby MB and his family the best.
The thing I found so disturbing about this case was that it wasn’t really about limited resources – although inevitably certain decisions are made on this basis, under any system of healthcare, they never used that sort of language.
The question was an ethical one, and at the heart of it; Is this child’s life worth living?
The doctors argued, not that the child’s life was too costly to sustain, but that he was better off dead, that he had no quality of life to hope for.
This I find a little scary, especially as our cultures move towards the idea that life is not as sacred as once believed and that there are some fates worse than death.
There are some fates worse than death, but my fear is what degree of mobility, sensory or cognitive impairment would the non-disabled majority reckon to be such a fate?