[Dysphagia] PEG feeding and Down syndrome

[eripley at yahoo.com (Irene Campbell-Taylor)]

Paula Leslie wrote:

 

The local consultant is asking for evidence to support our experience

that

 

1) Dysphagia occurs in the middle/late third of the condition, not as a

new symptom in the terminal stages (ie hours or days) as in other forms

of dementia.

 

*** There is NO form of dementia in which swallowing impairment manifests in the last hours or days. It exists and progresses for a considerable time. See: Campbell-Taylor I, Fisher RH JAGS 1987; Finucane et al JAMA 2001; Gillick M. NEJM 2003 and many others.

 

2) PEG feeding improves the quality of life of these patients by

reducing chest infections and preventing symptoms of malnourishment

 

*** PEG feeding, especially in the older person and those with developmental disabilities does not diminish but increases the risk of aspiration pneumonitis and is NO guarantee of either adequate nutrition or hydration.

 

3) Not inserting a PEG results in a prolonged illness of repeated chest

infections and malnutrition symptoms which, if the patient can manage

some feeding, may go on for more than 6 months (18 months in one of our

ladies).

 

*** The exact opposite is the case. Having said the above, I would add that I find the prevalent view of , at best, paternalism re the DD population to be appalling and decisions made about restricting the rights of those with Down syndrome and other neurodevelopmental disorders to be totally unacceptable in any civilized society. The NHS is particularly bad in this respect.  The guidelines for use of PEG feeding in adults is that it be used ONLY for those who either cannot or will not eat. There must be a functioning gut and ready access. The assumption that persons with swallowing impairment will necessarily aspirate and, as a result, develop respiratory infections is unfounded. The far more common scenario, especially with children and adults with DD is that of reflux induced aspiration pneumonitis sometimes followed by bacterial pneumonia, GERD having a very high incidence/prevalence in children and adults with DD. (See Franquet et al )The repeated chest infections referred to
 above are of this nature- pneumonitis followed by bacterial pneumonia. In any patient who is failing and for various reasons becoming immunocompromised, it is, in the final stages, unavoidable. The latest information is that there is little or no discomfort associated with restriction of food and fluid in the terminally ill ?note terminally. Without knowing the patient I cannot comment of the wisdom of withholding PEG feeding in this case but the reasons given by the consultant are spurious although the consensus of opinion is that for persons suffering progressive neurological disease and approaching death, PEG feeding is not indicated while careful spoon feeding is desirable.



Dr I Campbell-Taylor
Clinical Neuroscientist
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