Georgetown Week 8

I spent Wednesday in the ALS clinic. This was my first real clinic experience, so it was a nice break from the usual inpatient units. It was very much a team approach, comprised of MDs - Neuro and Pulmonary, a respiratory therapist, dietitian (who they just brought one a few months ago), PT, SLP, and an equipment vendor rep who sets pts up with communication devices - because some people lose function of their hands, wheelchairs, etc.

ALS is also known as Lou Gehrig's Disease. It is a neurodegenerative disease and basically pts gradually lose control of voluntary muscle movement, which leads to respiratory distress and dysphagia. Life expectancy is about 5 years. A lot of these pts have PEGs because most of them eventually lose the ability to swallow.

For 2 of the pts, they were losing wt because of increased needs and decreased intake- either they are tired or had difficulty swallowing. So we provided them with tips of how to sneak in extra calories, and lists of nutrient-dense foods. They both seemed to like the idea of shakes/smoothies.

Another pt I saw made me sad. She couldn't use her hands nor could she speak, so she basically couldn't communicate with us, except blink, nod slightly, and smile. But, I heard shes getting a vision communicator that can read her eyes, COOL! Her sister was there with her, and she somehow seemed to know what the pt was trying to say - it was very sweet. The father was also there, and he took us aside and told us that the pt didn't want to go to a nursing home and she didn't want a PEG, she wanted to die naturally. But they were having a difficult time taking care of her at home because they themselves are old and the pt can no longer walk, so they have to carry her!

We ended up talking to her about a PEG. The pt wanted to know (per her sister) exactly what it is, how it works, if she can shower, still eat, taste any food, etc. So we gave a thorough explanation and said its good to have incase she's too tired to eat sometimes, and so that she doesn't have to worry about getting enough nutrition. Afterwards, the pt seemed more open to the idea of a PEG.

Just a note..it is important to discuss getting a PEG with these pts right away because as the disease progresses there is also a progressive loss of function in respiratory muscles. In the later stages, impaired respiratory status makes these pts not good candidates for PEG placement, and other nutrition options may be needed, depending on code status.