These days, she’s not been able to communicate as much and doesn’t even swallow her food properly. She looked interested in our conversation, but it was unlikely that she knew what the discussion was about. But still, her expressions followed the tone of our conversation – flowing between curiosity, and concern.
At the table nearby, her daughter was relating an episode about how she felt so guilty when another doctor told her that not using tube-feeding for her mother was like “starving her to death”. At the moment, we’re hardly near that stage. But the daughter and family already know that drastically reduced food intake is an eventual consequence of the decline from dementia.
We’d already gone through options for care, including whether patients might benefit from tube-feeding. The facts objectively laid out and clear. She thought she had it all planned out and decided, until that encounter. Would have been easy if humans just relied on being rational and logical. Now she’s unsure if she’s doing the right thing, with some guilt lingering.
Being judged on what choice (tube feeding) one makes for his or her parent is never helpful; maybe even harmful. Instead, understanding that choices are always made in contexts that we can never fully appreciate is wiser. Accepting that there are very different choices which can be made, not necessarily a right or wrong choice is good enough. Just choices, and supporting the patient and family – whatever the choice.
link to NY Times article on tube feeding
American Geriatrics Society – position statement on tube feeding in advanced dementia