This set of issues illustrates some of the purest examples of disability stigma I know....
Typically, advanced care planning programs, including National POLST Paradigm affiliates, describe the risks of tube feeding while minimizing or ignoring the benefits. How can people be expected to make a decision about this life-sustaining technology when so much of the available information is biased? Clearly, more awareness is needed.
People are always shocked when I say that the quality of my life improved dramatically when I got a feeding tube. They are expecting to be supportive around my feelings of loss from the progression of my disability, inability to enjoy table food and eat socially with friends, and the physical discomfort of having a tube in my belly.
I’m sure there are people who have those experiences, but for me getting a feeding tube was a profound relief.