[Dysphagia] Ethical Issues

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

Hello All

I received this request to post.  I work with this team and have been involved 
with the person concerned in the past.  It's a complicated issue but 
communication has been open and frank since the start.  C's wishes have always 
been addressed.  (GP = US family practitioner, C lives in the US equivalent of 
an SNF).

As ever any input would be very welcome!

Thank you

Paula



We are seeing a 64 year old man (C) with Parkinson?s disease. He is currently 
wheelchair-bound and uses a lightwriter to communicate. He is physically 
unable to feed himself.
He has had gradually increasing difficulties with eating and drinking over the 
past 3 years and had a PEG fitted in December 2004. Since that time, he has 
had 3 phases of trying small amounts of oral intake. On each occasion, oral 
intake was stopped after a few weeks due to chest infection problems. Once 
chest status improved, the small amounts of intake have recommenced. On the 
3rd occasion (August 05), the client developed a chest infection after 12 days 
of having small amounts of oral intake. NBM status was implemented and he has 
not resumed oral intake since. One occasion of chest infection required 
hospital admission.

We had a meeting with nursing home staff, the client and the client?s wife to 
clarify issues.
Nursing home staff are concerned at putting C at risk by offering any oral 
intake. They are concerned that his chest problems develop very quickly and 
that he can be distressed and with breathing problems within half an hour of 
the problems starting to show.
C is very anxious to eat and feels that staff are being over ?cautious.

We agreed to arrange a Videofluoroscopy assessment of C?s swallow to clarify 
the nature of his swallowing difficulties. This showed that honey and pudding 
consistencies were swallowed without aspiration occurring but that liquid 
barium was aspirated silently. It was also not possible for C to cough to 
request to clear his throat.

We have had a meeting with C, his wife, nursing home staff, GP and ourselves 
to discuss the situation. The issues were:
SLTs think small amount of suitably textured input may be possible with very 
rigorous oral hygiene to reduce risk of oral secretions mixing with oral 
residues and being subsequently aspirated. Also recognise that C looking 
physically better since being NBM and that incidence of chest infections has 
reduced whilst NBM.
C ? very anxious to have some oral intake. Aware of risks.
C?s wife ? does not want him to have oral intake as she thinks C is much 
fitter since oral intake stopped and she is concerned with how poorly he is 
when chest infections occur.
GP ? concerned by serious chest infections that have made C very ill. Also 
very keen to recognise C?s wishes.
Nurses ? very reluctant to feed C because of risk to him and not wanting to 
make him ill.

Conclusion

Difficult ethical situation. All involved professionals seeking advice from 
colleagues and professional bodies before follow ? up meeting in 2 weeks.

Any advice or shared experience of similar situations would be very much 
appreciated!!

Paula Leslie
Degree Programme Director

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