The Blind Leading the Blind

Recently, I was asked to see a patient with a newly replaced PEG for bolus tube feed recommendations. This patient had a PEG placed one week prior at another hospital but had complications and ended up having it replaced at our hospital.

When she came into the hospital, she had a vague idea of her home tube feeding regimen. When I spoke to her with another dietitian in our department, she easily became confused about her regimen, frustrated, and even tearful. She was able to provide us with the contact information of the dietitian who had educated her but had not contacted that dietitian for clarification about her regimen.

Houston, we have a problem.

When I reviewed what she thought was her regimen, it wasn’t exactly appropriate and I thought that the patient had been confused. It’s understandable since she had not been given written instructions to follow. Her problem just demonstrated a larger one that dietitians face inpatient.

Transitioning to Home

Many people have a PEG placed for tube feeds and then discharge home. They may have an obstruction or swallowing difficulty requiring them to need nutrition support for the forseeable future. The process goes something like this:

1. Dysphagia or diagnosis indicating unable to meet needs through oral diet identified

2. Decision to place PEG made with pt and family (or pleasure feeds/hospice alternate)

3. PEG placed

4. Tube feeds initiated- usually continuous feeds

5. Transition to bolus/discharge home

In general, we do a good job with every step except for #5. Often, our patients discharge quickly after they’ve had the tube feeds placed and we aren’t able to do adequate teaching with them. They may receive one bolus before they discharge. While we do set up home health in most cases, I don’t believe that we do an adequate job of educating our patients and preparing them for success at home.

Education Barriers

The hospital isn’t a great place for education, in general. The stress, lack of sleep, and other factors make it difficult to spend an hour with patients to ensure that they are educated. Additionally, the patients themselves may not be able to understand the education, meaning that you then have to find a time to educate family members or caregivers.

Time is also a constant barrier in the hospital setting. In the best case scenario, I would teach a patient how to do a bolus and then have him use the “teach back” method. While effective, this method will take at least an hour to complete. With home tube feeds, you also have to teach how to resolve other complications and problems that may arise at home so it’s a booklet full of new information.

What to Do?

It would be great if we had a home care team in-house to make that a smooth transition but that doesn’t happen in all cases. We’re currently working on putting together a kit that we can take to patients who are going to be going home on tube feeds to make it easier to educate patients and families. The process is still going to be a challenge but, like everything else that happens in the hospital, beneficial changes often take time.

Going back to my example, my colleague and I educated her with handouts and

provided our contact information while providing a bolus at the time. It was a painstaking process and took over an hour. However, it was well worth our time. Moving forward, we need to add a few more steps to our process:

• Educating patients and families early on home tube feeding regimens

• Having patients and families practice giving bolus regimens while inpatient

• Ensure that patients and families have troubleshooting contact information AND feel comfortable contacting those individuals

• Schedule a follow-up appointment with a dietitian through the hospital or outpatient infusion center