substitute judgment and intelligibility

4 May

Two things.

First, I really felt like a graduate student on Sunday. I went to the library to try to find a journal article and I had to go in the basement to the STACKS (dun dun dun duuuuuuuun). They were so sweet. It’s all of these talltalltall bookshelves that are snug-up against each other. And I’m all, “Uh, how do you get to the books?”

And that’s the best part – they have a MOVE button so you press it and it moves all of the shelves so that there’s enough room for you to get to the shelf you want.

SO SWEET.

Anyway, I sat down there forever looking through the Journal of Gerontology trying to find a Cohen-Mansfield (1988) article on Informed Consent in Nursing Homes.

This was my view:

As an SLP, I'm used to sitting on the floor

The article talked about this concept of “substitute judgment” that I found really interesting. When dealing with research participants who are deemed “not-competent” their caregivers often sign informed consent forms. But you have to consider – who is making the decision? Is the caregiver saying yes or no based on their own biased view of research? If so, they should be encouraged to use “substitute judgment” – or they should put themselves in their ward’s shoes.

For example, if  my mom was asked today to participate in a research study, I think 99.9% of the time she’d say NO. Now, IF somewhere down the line I became her caregiver and she was asked to participate in a research study I would likely be inclined to say yes. I’m thinking, hey I’ve done research so I understand they need participants, and research is how we learn to help people with her mystery-condition so we should pay it back.

BUT, if I used substitute judgment, I would be inclined to say no. Because in real life my mom would probably not participate in a research project.

Make sense?

Secondly, on Monday my client’s mom was telling me how good my client is doing and how their family and friends can understand him so much better now and it was just warming my heart. Then she said that the other day he called one of his siblings a butthead and she told him not to say that. And he said,

“YOU CAN UNDERSTAND ME?”

OhmyGosh. LOVE. This mom was so excited that she caught her son calling his sibling a name. What a weird and special moment that must of been for them.

That’s why I chose this field.

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