Notes in the Margin - 3 May 2024
Code status, caregiving, writing, AI minotaurs, and bland data
Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations. If you want to come along with me, subscribe and every new edition of the newsletter goes directly to your inbox.
Every so often, I’ll share things I’ve been reading with a few words of mine scribbled in the margins. If you have something to share, please do! The comment section is open.
Baffling. Maddening. Infuriating. “It’s worth noting that although I am a White, native- English-speaking senior physician at the same umbrella institution, even I couldn’t control what happened next. Hospital security understood ‘dying mother’ and let us in, but both doctors and nurses repeatedly refused us entry to the CCU. Three hours later, when they finally opened the doors, it was too late. I took a photo of the lines and bags of medications at my mother’s bedside. She was distressed and confused. They had done everything she had so eloquently asked them not to do, and I had been powerless to stop them. All that had been documented of our trauma room discussion was ‘DNR/DNI.’”
Twist and Shout, I Told My Dying Husband
describes her experience caring for her husband while they received the gestures of care from a home hospice agency. I’ve heard her story many times from other caregivers - wandering in strange territory with assistance that like one would hope, and receiving blithe advice from clinicians who fail to appreciate that, although this is a routine part of their work day, this is the crisis of your life. helps describe what is so important about writing: it’s how I think. Maybe it’s how you think as well. It’s hard for me to grapple with any substantive idea while it’s still in my brain. Getting it out there on a page is sometimes a challenge because I need to be honest about the limits of my own knowledge. Sometimes it starts with literally just putting words on a page, not even connected in sentences, and then building from there. Nevertheless, there remains a role for both meditating on ideas, as well as time spent not writing. Physical activity is particularly good at jostling some things around so I can come back renewed to my thinking.What are we expecting when we work with artificial intelligence (AI)?
expands on metaphors from : working with AI can make us like centaurs (AI’s involvement is easily distinguishable from the human’s work) or like cyborgs (AI and human work are more closely entwined in ways that are harder to differentiate). Brake adds to the list an important consideration: minotaur mode. “In minotaur mode, we'll outsource our thinking and agency to the machine. In working with AI as a minotaur we'll retain the appearance of holding the reins, but in reality, the AI will be calling the shots.”C. Thi Nguyen warns against the perils of “value collapse” as we chase after easily transportable, digestible, commodified data:
Some very important things don’t make their way into the data. It’s easier to justify health care decisions in terms of measurable outcomes: increased average longevity or increased numbers of lives saved in emergency room visits, for example. But there are so many important factors that are far harder to measure: happiness, community, tradition, beauty, comfort, and all the oddities that go into ‘quality of life.’
Consider, for example, a policy proposal that doctors should urge patients to sharply lower their saturated fat intake. This should lead to better health outcomes, at least for those that are easier to measure: heart attack numbers and average longevity. But the focus on easy-to-measure outcomes often diminishes the salience of other downstream consequences: the loss of culinary traditions, disconnection from a culinary heritage, and a reduction in daily culinary joy. It’s easy to dismiss such things as “intangibles.” But actually, what’s more tangible than a good cheese, or a cheerful fondue party with friends?
It’s tempting to use the term intangible when what we really mean is that such things are hard to quantify in our modern institutional environment with the kinds of measuring tools that are used by modern bureaucratic systems.
Thank you, Josh, for sharing your experience. It’s heartbreaking that you should be barred from being with your mother during her last moments. I can’t imagine the pain. Thank you for the shout-out to my post as well. It’s important to connect with others who are facing these challenges and sorrows.