[Dysphagia] PEG feeding and Down syndrome

[Paula.Leslie at newcastle.ac.uk (Paula leslie)]

Thanks for this Irene

Being a mainstream rather than adult with learning disability SLP, my 
experience of PEG and dementia has often been an ill thought out reaction to 
the terminal phases of an illness.  And PEGs don't stop oropharyngeal 
aspiration and they do exacerbate gastroesophageal aspiration.  We swung way 
towards PEG as a cure all, now we're swinging away from it - such blanket 
opinions are dangerous and what we're trying to tackle.

The request came to me from a nonSLP and possibly from a team with no SLP 
input - common in ALD.  And I posted it as it came so things may well have 
been phrased not quite as meant.

The situation with ALD in the UK is that some consultants refuse to consider 
tube feeding in this population full stop.  And there is a pervasive attitude 
that eating/drinking difficulties and/or aspiration and/or persistent chest 
infections are "just part of the ALD/syndrome etc."   So people who present 
with dysphagia are either not diagnosed as having the problem or are presumed 
to be at a much more advanced stage than they might actually be.  Carers have 
often been gradually accommodating to a declining swallow and by the time 
someone asks for help it is late stage.

The experience of some specialist centres is that earlier consideration of 
supplementary feeding has increased the quality of life of many people in this 
client group.  That "tubes" are not a late stage, desperation measure or an 
all or nothing.  As with other population groups sometimes we can't get all 
the nutrition/hydration we need orally and if we don't, the whole system 
(including the swallow) is compromised.  It's very distressing for a patient 
to go blue everytime they feed, when all other manoeuvres etc, have been 
tried, we had one case where such extreme coughing triggered fits.  And if the 
tube alleviates some of this then so be it.  Obviously it's a case by case, 
team decision about a very complex situation, as you've always said.

What people are now trying to think about in ALD is the use of supplementary 
feeding at whatever point the person would benefit from this , but it's a real 
struggle with physicians.  My experience of nurses/SLPs etc working with this 
group, is that they persevere with spoon/cup far feeding longer than us in the 
mainstream population because they are more used to the idea that all possible 
prompts and proprioceptive clues must be given to the patient/client.  
Swallowing is cued and triggered long before the bolus is anywhere near the 
oropharynx.

Some of our ideas and cautions in mainstream are being turned on their heads 
in ALD.  And hopefully vice versa if we keep sharing our experiences.

I think that this area will have a fair few lessons for the mainstream.  It's 
all still an area for debate and learning.  A colleague and I are presenting a 
seminar on this ALD-PEG issue at ASHA in November.  We hope to generate as 
much debate in the US as this is here.  I hope some members of the list will 
be able to join us?


Paula



***************************************************************************

The consultant's belief is that our
experience is
not replicated in the community where the consultant claims
clients die
soon after the onset of dysphagia, although we suspect this
is because
such patients dies from lack of nutrition, not from the
dementia.


>===== Original Message From Irene Campbell-Taylor <eripley@yahoo.com> =====
>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
>refer!
> red 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
>Exclusive Distributor:
>www.interactivetherapy.com
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Paula Leslie
Degree Programme Director

Note: UK Swallow Research Group Inaugural Meeting 2nd December, London
Please contact me for details!!!!

Surgical and Reproductive Sciences
Faculty of Medical Sciences
University of Newcastle
Newcastle upon Tyne
NE2 4HH
UK
+44 (0) 191 222 6279(T)/8988(F)
http://www.ncl.ac.uk/sars/postgrad/MSc.htm