The ongoing Charlie Gard case in Britain has garnered great attention and even drawn President Donald Trump and Pope Francis into the fray. Charlie’s parents are currently in court fighting to take their son to America for a last-ditch experimental treatment.
Despite this attention the issue at the center of Charlie’s case—futile care theory—has not been sufficiently explored.
There are legitimate end-of-life situations when medical care is truly futile and could actually harm a patient. Futile care theory goes beyond medical judgements, however. It subverts the definition of “futile” by using “quality of life” as the important standard. It doesn’t just mean a patient’s personal desires, but allows others to determine a patient’s quality of life for them. A medical treatment can be wanted and working yet deemed “futile” if doctors or insurance companies decide the patient isn’t worth their effort.
Let’s explore futile care theory in action through the example of one of our own staff members.
Genevieve Marnon works in our Lansing office on legislative issues. Genevieve’s father, Bob Tank, suffered from a terminal chronic condition. Bob wasn’t ready to die and was enjoying the twilight of his life with his family.
One day severe pains brought him to the hospital with a dangerous blood clot. Genevieve said once the hospital staff learned of his chronic condition their zeal to treat him disappeared. Bob was conscious and expressing a will to live while in the hospital, but that didn’t prevent a secret do-not-resuscitate order being placed in his file and other serious problems.
The only thing Bob wanted was treatment for his acute condition so he could go home and prepare for his death at some point in the future. The hospital decided for him that his life was “futile” and not worth it.
Genevieve and her family fought for simple care for her father, but they lost. The hospital threatened to take them to court, forcing them to surrender to the hospital’s wishes so they could at least be present when Bob passed.
Bob’s story is not that unique to Michigan. We’ve heard many similar stories.
People have a right to refuse unwanted treatments, but futile care theory has created the idea of unwanted people who can be refused wanted medical care. The follow-up to futile care theory is doctor-prescribed suicide, which offers a cheaper and more immediate solution to patients whose lives are deemed futile.