Defining Quality of Life
Lately I have been thinking a lot about “quality of life,” and how it is defined when you are elderly.
My brother in law took up the guitar years ago so he wouldn’t have to just “sit around” if he fails physically, like his own grandparents. And yet sitting around is pretty much what my Mom does these days. Don’t get me wrong, this is not a woman who used to run ultramarathons. But she did putter around the house, and go to the grocery store, and teach piano students at home and at the local Community College, and gather and play with her fellow musicians in the Etude Club. And she would read, read, read.
Which is why, when her sister in law alerted me Mom had complained of fuzzy vision in her right eye, I thought it prudent to take her to the eye doctor. Since my mother’s primary pastimes these days are reading, playing music, and watching TV, I figured she would want to preserve the faculties she has left that are required for those activities.
What I neglected to consider is the toll these visits take on her (and me, and my work day, and my vacation time).
Not only does the doctor’s office have a standard wait time of two hours — as evidenced by the conversation and complaints of regulars in the lobby — Mom also proved physically incapable of sitting at the machines, or keeping her eyes open for testing and observation. Throughout the assessments I had to stand at her back, pushing her head into various positions while propping her torso up. Then we would BOTH have to freeze in that position for five minutes, sometimes with me holding her eyelids open (alternatively considered helpful or shocking by the staff).
In good news, my past practice advocating for my elder inspired the doctor to whisk mom into a room for an impromptu cataract “scrub,” instead of asking us to come back for another 3 hour session. Even still, we had to return the next week to assess the outcome, so I was relieved to see the doctor pull out the “old school” eye chart instead of a torture device. ALL Mom had to do was read the letters (or say she couldn’t) and we would be out of there.
Which turned out to be an impossible task.
What happened next, to the untrained eye (pun intended), was that a frail old lady had a cognitive breakdown. Despite the doctor and me urging her to simply “TELL US WHAT YOU SEE,” Mom was so stunned that her 87-year-old eye hadn’t been miraculously cured by last week’s procedure, she couldn’t function. Occasionally, when she allowed our words to enter her ears, she would adjust her trifocals and prove that peering out of the CORRECT part of the lens made Mom perfectly capably of reading the letters. My attempts to explain her behavior to the doctor as Mom’s typical ostrich-approach to healthcare only resulted in another appointment. THIS one would check her brain function, provided mom could sit MORE still for LONGER periods of time.
It took a ton of negotiation for the assessment not to be scheduled ASAP amidst the weekly oncologist, pulmonologist, and cardiologist appointments already on the calendar. So when I questioned the necessity the doctor urged, “it’s for her quality of life!” and got a look on her face that has become very familiar to me. It’s the expression made by a talented and well-meaning specialist who is fully-focused on the goal of “fixing” someone, without taking into consideration the cost — literally, physically, and emotionally — to the elder, and their caregivers.
Which made me realize … following last year’s rounds of crisis care I have gotten SO used to the weekly maintenance appointments with Mom’s many, many specialists, I am out of the habit of stating our expectations: “Mom and I have read Atul Gawande’s Being Mortal. She lived a good, long life. She didn't expect to live this long. Her quality of life is good. We don't want any extreme interventions. And so anything that's about to happen in this next medical appointment needs to happen in that context.”
Mom’s specialists are basically keeping her alive. The “quality” part is turning out to be a fascinating subjective experiment…!