What Clinicians Can Learn from Life with Fred

Abstract

I am a dietitian working in home nutrition support. I know a lot about it because I can assess a patient’s nutritional status and monitor their progress on home enteral or parenteral nutrition. I even know that long-term patients prefer to be called consumers because they aren’t “patients” anymore—home nutrition support is a way of life. That of course is what I thought until I got to know the consumers. Truthfully, I didn’t know about home nutrition support, not really. Technically, yes—but living the life—no. Robbyn Kindle’s article entitled “Life with Fred” details her experiences not only with home parenteral nutrition (HPN) but also with multivisceral organ transplant. Robbyn and other consumers have taught me about the reality of home nutrition support. I cannot remember all of the names nor the nutrition support regimens over time but I can remember the stories and the homes. I remember the retired couple, the husband receiving home enteral nutrition, who were one of my first to visit at home. I provided the information to a family—not just a patient. One gentleman on HPN I met with told me how to refinish a piece of furniture as he had done in his home—that was what he was proud of. My friend Bill, a 26-year veteran of HPN, provides me with the history of HPN because he has been receiving it that long. It is essential that nutrition support practitioners who work with home nutrition support consumers try to understand the challenges of living with home nutrition support. Do you know what it is like to store supplies for enteral or parenteral nutrition at your home? Did you as a clinician figure out a tube feeding formula that is easy to prepare or did you mix two different formulas together along with a modular product? Could you do that at home? Will it be paid for by your consumer’s insurance company? Do the HPN infusion hours meet your consumer’s needs, or could they be changed and improve their quality of life? That is why Robbyn’s article—her story really— is so important. It is the truth about HPN. HPN has been her lifeline as it is for many long-term consumers—that doesn’t mean she has to like it all of the time or that she has to infuse because you the clinician tells her she has to. She and others like her make a conscious decision, every day, to take in nutrition. We are a team—the consumer and the nutrition support practitioner. By working together, we can learn from one another. Ask questions of the consumer, even hard questions. Robbyn says to listen, take time, and understand the reality of home nutrition support. This will benefit us all. Thanks, Robbyn, for sharing your story. Correspondence: Carol Ireton-Jones, PhD, RD, LD, CNSD, Coram Healthcare, 1730 Countryside Drive, Carrollton, TX 75007. Electronic mail may be sent to drcijrd@attglobal.net.