Futility, Quality of Life, and Medical Care: A Tale of Two Patients

Over at The Squeaky Wheelchair, I found a sad story (with a happy ending) about a child with a neurodevelopmental disability and a heart defect being denied a heart transplant based on lies and misconceptions about his perceived quality of life. I do not know anything about Maverick’s syndrome or the risks it causes in cases of heart transplantation, so there is still a chance thAT Maverick’s parents sought to minimize the risks of infection in order to make him a more hopeful candidate. Then again, the doctors were making up different stories about why Maverick would be denied a transplant, and his neurodevelopmental disability apparently did play a large part. This is sad, because, unless truly the risk of infection or tumors is increased with this syndrome, the improvement in quality of life for Maverick would be at least as much as that for a non-disabled chhild undergoing heart transplantation.

I feel compelled today to write about the opposite attitutde, one where improvement matters at least as much as perceived normalcy of outcome. My story did not have a happy ending, but that was not the doctors’ fault. The story involves my being approved for cataract surgery this year. This is not as complex a surgery as a heart transplant of course, but it does prove that some doctors are willing to take risks (again, not as big risks as with a heart transplant) for an outcome that may seem futile to non-disabled people. Those who have visited the various places on which I’ve blogged over the past half a year will know the facts of my story already.

I was born three months premature and developed an eye condition that’s relatively common in premature babies. From this condition, I have been legally blind, with as best a visual acuity of about 20/400 to 20/800 with a restricted field of vision, all my life. When I last went for a regular eye exam at age nine, my visual acuity had dropped to the ability to see someone’s hand move at measuring distance. I was considered functionally blind.

I developed a cataract in my only eye which had useable vision at aroung age fifteen. By age seventeen, it had grown so much that I’d lost all but light perception. I never sought treatmetn, assuming that no doctor would be willing to remove the cataract given the perceived outcome. Until 2013 that is. I decided I wanted to know for sure, and if the doctors at Radboud University Medical Center would decide against surgery, that’d be fine with me. (Of course, the decision was a joint one ultimately, but as Maverick’s case shows, sometimes doctors deny care based on perceived futility, and they have a legal right to.) I went through eye exams and my old records were read. Then the doctor gave me the facts – the best outcome would be hand motion vision but there was no way of knowing whether I’d get any improvement until after surgery and there was a risk that I’d lose my remaining light perception. He gave me the choice and I went for surgery. Unfrotunately, it did not result in any improvement. Now please realize that hand motion vision, as I said, is considered useless by most. This is understandable, but from a disabled perspective, and the doctor was the first to actually say so, it is a significant improvement from no sight at all. The outcome may objectively have been futile, but subjectively, it could’ve been significant.

Now let’s go back to Maverick’s story. I am not one to say that any life is better than death, but this is not up to a doctor to decide. Only the patient (and I’m still unsure about the parents in cases of children) can know whether life is valuable to them. Doctors can advise on possible risks and outcomes, and sometimes the risks of the treatment failing outweigh the benefits (as may’ve been the case had Maverick’s condition in fact led to more infections or tumors). As I said, doctors have a right to decide treatment is futile. I could’ve understood this in my own case, and as I said if Maverick truly ran an increased risk of complications. This is quite different from considering a life not valuable because it is lived with disabiities that are irrelevant to the conditin being treated.

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