Hi and welcome to a late day 17 in the #AtoZChallenge. The letter Q post was what got me to quit the challenge last year, as I kept making up my mind about what I wanted to write about. Same today, until finally my husband suggested quality of life.
Quality of life is a public health concept determining the effects of health conditions or treatments on people’s functioning and wellbeing. It is a commonly-used term in assessing people a long time after an illness or medical treatment happened, to determine if treatment is worthwhile. For instance, in the mental hospital, we were expected to fill out quality of life assessments twice a year to determine if treatment was helping us.
Quality of life is subjective, but it is often tied in with objective measures of functioning. For example, someone who is unemployed is expected to have a lower quality of life than someone who has a job.
I feel very conflicted about the concept of quality of life, as in some cases, it is used to justify euthanasia or withholding of life-saving treatment. This is particularly the case with babies who are born prematurely. Here in the Netherlands, not all babies who can medically be saved, will be, as with those born under 24 weeks gestation, it is deemed that the risk of poor quality of life later on is too high.
I, having been born at the borderline of treatability in 1986 at 26 weeks, have always been concerned with this issue. In this sense, a comment by Dr. Fetter, who coincidentally was my treating neonatologist, in 2004, is striking. He said he sometimes meets former preemies whom he has saved about whom he thinks: What have we done?!” I was at the time 18 and just about to realize that I wasn’t going to be the successful university professor my parents hoped I’d be. I wondered whether I’d be seen as one of these “what have we done?” cases.
I’ve had some debates with my parents about quality of life. When I was in the NICU, my father asked Dr. Fetter what they were doing, setting the conditions so that I may survive? “No,” the doctor said, “we’re just keeping her alive.” He (or his nurse) added that, if my parents disagreed, they’d lose custody of me. My parents were legitimately concerned with my quality of life.
Now that I’m 32 and no longer live with my parents, and having told this story multiple times, I can somewhat distance myself from the feelings that come with this. Before this, I’d often feel that I had to prove I met my parents’ standards of a good enough quality of life or I’d sort of retroactively be left to die. This is, of course, nonsensical.