[Dysphagia] olivopontocerebellar atrophy

[slp01 at hotmail.com (E V)]

Long-time lurker, first-time poster ? please bear with me!  A colleague 
asked for assistance with a patient, a woman in her 50?s with a dx of 
olivopontocerebellar atrophy.  She was admitted to acute care with cough x3 
weeks, weight loss, and ?worsening speech, and was found to have a lung 
abscess.  A swallowing eval and VFSS was ordered on admission.  Apparently 
the family was told by the MD even before the VFSS was completed that 
"she'll probably need a PEG."

Clinically and on VFSS, her primary problem is poor oral control with thin 
liquids and slow A-P transfer with thicker consistencies; pharyngeal phase 
was functional.  No penetration/aspiration on VFSS and no s/s of aspiration 
at bedside when using a sippy-type cup to help control bolus size.  Family 
reported that the pt was eating the equivalent of a mechanical soft diet at 
home (including whole hotdogs, yikes!).  She required extra time for meals 
(1 to 1 1/2 hours).  Currently she has been eating 100% of her meals in the 
hospital.  The RD put TF recommendations on the chart per doctor?s order, 
but wrote that the PEG should be used for supplementation only given the 
pt?s current po intake.  Her albumin/prealbumin is low, but my colleague 
felt this was likely due to a less-than-ideal social situation in which she 
was not provided with the most nutritious foods and was more or less left to 
fend for herself food-wise.  At discharge she will be entering a skilled 
nursing facility.

Despite my colleague's recommendations for a modified mechanical soft diet 
(approximately NDD-2) and thin liquids, along with a calorie count if intake 
is a concern, the MD's have been pushing the family for permission to do a 
PEG, telling them that "we can do the PEG now, or she'll just wind up coming 
back in and having it done later."  So much for informed consent!  
(Incidentally, that was the line my colleague got as well when she 
questioned the doctor on the rationale for the PEG and pointed out that the 
pt is currently tolerating her diet well.) Are we correct in thinking that 
treatment for this patient should be palliative, and that a PEG is NOT 
indicated, even once swallowing function deteriorates further?

I am very familiar with the literature on end-stage dementia and feeding 
tubes, but the MD?s are not accepting those recommendations since ?it?s a 
completely different dx.?  Any other references we could share with these 
docs?  Family does not really seem to want a feeding tube for this pt, but 
feels the MD?s are indicating this is the only way to go.  My colleague has 
spent a lot of time educating the family about the results of the VFSS and 
clinical assessments, but with the MD?s not on the same page, where do we go 
from here?

Thank you for your input!

E. Thrush, M.S., CCC-SLP

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