Do substituted decisions break the Golden Rule?

The way I learned the Golden Rule was: “Do unto others as you would have them do unto you.” Basically, it’s from the New Testament, but the concept goes way back to pre-Christian ancient civilizations in Babylonia, Egypt, India, and China.

So here I am, just trying to do my best as a spousal caregiver, and I started to realize that if I were to take the Golden Rule literally — I would be constantly breaking it. There are just so many things I do, and more importantly choose, for her, that I wouldn’t want myself! (OK, maybe I’d choose the chocolate nutritional beverage, too, over the other choices.)

The Golden Rule is a principle, of course, not to be taken literally, but it has its critics with philosophical, linguistic and religious points of view. The British wit and playwright George Bernard Shaw once said: “Do not do unto others as you would that they should do unto you. Their tastes may not be the same.”

Most folks in intimate relationships get to realize that there are vast differences in individual preferences, from food tastes to room temperature to what one finds funny or irritating or sad. Clicking with someone in a relationship seems to be a matter of some overlap, while also allowing — or even celebrating — some differences (like some weird Venn diagram).

But as a caregiver at a stage in which communication is uncertain, I’m finding that I’m a bit uncomfortable, at times, with my own “substituted judgments” and “substituted decisions.” I realize that legally, I do have “power of attorney” for paperwork issues. But c’ mon — those rarely come up.

It’s the day-to-day decisions — those minute-to-minute ones about things like clothes, food choices, food temperature, room temperature, music choices, volume, TV programs, a place to sit and bedtime — where I’m conscious of making a choice for her. Are they really what she would choose, or are they my choices? Wouldn’t she rather be on a cruise ship in the Caribbean, anyway?

Oh yeah, and wouldn’t she rather have George Clooney or Keanu Reeves in here … anyone else but me?

Here’s a little related wrinkle: aA parents, and in pediatric medicine, “substituted decisions” seem natural … until the kid gets smart and can talk back! After all, we want kids to be able to make “the right decisions,” which sometimes means you have to allow some learning from wrong decisions.

There is an acknowledgment of that concept, of a child’s understanding of choices, in research pediatrics, even an “assent” form to sign (not the legal “consent” form which needs a guardian). I’m not going to mention the silly IRB requirement of having sick seven-year-olds — proud of even having a signature — sign those things.

But I’m writing about caregiving for an adult with communication issues. Maybe empathy or emotional intelligence is in play here. I don’t know how one identifies those concepts in practical terms. But we’ve known each other for decades, so I really depend on familiarity and common sense. I’m conscious that it might be easy to treat her like a child, but I’m trying to avoid that. Perhaps more than anything else, that does fulfill the spirit of the Golden Rule.

Ron Louie is a pediatric oncologist.

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