Quality of Life: Its Impact on Me #AtoZChallenge

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.

5 thoughts on “Quality of Life: Its Impact on Me #AtoZChallenge

  1. I understand your ambivalence towards this concept of measuring Q.O.L. because it’s a subjective measure for the consumer and supposedly an objective reading of the data for the researcher. Of course this is the case with any research but Q.O.L. is particularly emotive given how data can be interpreted to suit the system. Great thoughts Astrid. Love your writing, have I said that before? I think so 🤔 (Linda)

    Liked by 1 person

  2. Astrid,

    I still remember the time I read the Fetter story in 2004-05 when I was really getting into your blog [perhaps the DiaryLand one].

    And, yes, there is a difference between being medically saved and socially saved – or saving/compensating yourself.

    Have just been around Love that Max’s edition of the blog round and encountered some wonderful children like Willow [who like you has CP and is autistic] and Ely [who has Batten’s].

    Thank you Jeroen for suggesting this topic. I would also have gone with Qualifications or Quirky.

    And so many people are proactively or retroactively “left to die”.

    And hardly anything in research is objective, QP and Eye! It’s as subjective for us/them as it is for the researched, maybe even more so.

    You wonder, though, if there is a basic agreement and contract.

    Brian: good to read your comment on Halfway up Rysy Peak when I had written about A Stroke of Endurance by Margot Cole.

    Astrid: A Stroke of Endurance has good audio descriptions by Tyler.

    Thinking too, how does blogging contribute to quality of life and especially blog challenges like these?

    Liked by 1 person

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