[Dysphagia] RE: Dysphagia Digest, Vol 25, Issue 9

[Aideen.O'Riordan at mailp.hse.ie (Aideen O'Riordan(Senior Speech & Language Therapist, CUH))]

Hi Paula, 
I faced very similar ethical issues on a case over the last 2 years, with a lady who felt/feels the same as C. The issues continue, however she has capacity to make her own decisions and this is of paramount importance. To enable her to understand everything we used the video of both her MBS(videofluroscopy) and FEES. Se reported that this was extremely helpful and more informative than the frequent discussions that relied on diagrams.  She, herself, decided to dictate a letter stating her wishes, which was signed by her brother, and given to her solicitor and GP. Most of the nursing staff refused to feed her, however she stated in her letter that she would not hold any of the staff responsible for any complications that may ensue. There are a few individuals among the care staff that are very committed to carrying out her wishes and continue to feed her. 
I no longer work with this particular lady however my predecessor continues to be involved. I have to say, the 2 years I spent working with her were among the most informative of my career. She taught me a lot about respecting a person's wishes and right to eat, especially when the quality of life is poor. She enabled me to understand that taking a few risks and coping with ensuing complications may outweigh the inevitability of decline in specific illnesses. She also allowed me to understand that a life with no pleasure is a very sad one. I feel privileged that I was allowed to work with her for so long and feel that our role is to ensure that whatever decision is made is an informed one. I would advocate the use of videofluroscopy and FEES if possible to ensure that this is done. I would also advocate spending time with his wife to ensure she understands his views. It is also important to acknowledge that we can all change our minds. It may be that C, after a priosd of time with recurring chest infections may change his mind, so a review of his needs will ultimately be necessary. 
Reference to the new mental capacity bill for the UK (2005)would also be essential.

Good luck
Aideen



-----Original Message-----
> From:	dysphagia-bounces@b9.com [SMTP:dysphagia-bounces@b9.com] On Behalf
> Of Paula leslie
> Sent:	December 7, 2005 1:57 AM
> To:	Dysphagia List
> Subject:	[Dysphagia] Ethical Issues
> 
> 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

-----Original Message-----
From: dysphagia-bounces@b9.com [mailto:dysphagia-bounces@b9.com]On
Behalf Of dysphagia-request@b9.com
Sent: 07 December 2005 19:13
To: dysphagia@b9.com
Subject: Dysphagia Digest, Vol 25, Issue 9


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Today's Topics:

   1. RE: Pediatric GI Discomfort (Beecher, Robert)
   2. RE: Ethical Issues (Benoit, Mia [PH])
   3. pediatric assessment (Staci Otto)


----------------------------------------------------------------------

Message: 1
Date: Wed, 7 Dec 2005 10:13:38 -0600
From: "Beecher, Robert" <RBeecher@chw.org>
Subject: RE: [Dysphagia] Pediatric GI Discomfort
To: <ppollywogger@juno.com>, <dysphagia@b9.com>
Message-ID:
	<9E6D52F532809247BDA1783680E92C56051F58BA@CHWEXC.chwi.chswi.org>
Content-Type: text/plain;	charset="iso-8859-1"

If your nephew has not seen a pediatric GI physician, he should. The BA swallow is a structural evaluation. There are many other problems that can cause GI discomfort that need to be investigated. A baby is not fussy unless something is wrong. Babies are not fussy because they want to be fussy. Please keep the list informed about your nephew as it will be beneficial for all of us. We wish you and your nephew our best and a quick resolution to his problem.

Bob

Robert Beecher, M.S., CCC-SLP
Senior Speech/Language Pathologist
Board Recognized Specialist-Swallowing
Children's Hospital of Wisconsin
Masters Family Speech and Hearing Center  M.S.#785
P.O. Box 1997
Milwaukee WI  53201

 -----Original Message-----
From: 	dysphagia-bounces@b9.com [mailto:dysphagia-bounces@b9.com]  On Behalf Of ppollywogger@juno.com
Sent:	Tuesday, December 06, 2005 7:44 PM
To:	dysphagia@b9.com
Subject:	[Dysphagia] Pediatric GI Discomfort

my nephew is 4 months old, healthy weight, breast fed, developing well - but cries constantly & seems to be in pain and has great difficulty burping. my sister has limited her diet - no gas producing foods, spices, dairy - with little effect. he had a BA swallow last week which r/o'd any GI abnormality - the MD said that he'd "grow out of it." the baby is more than the typical "fussy baby" and any suggestions or futher info would be appreciated!_______________________________________________
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------------------------------

Message: 2
Date: Wed, 7 Dec 2005 09:24:35 -0800
From: "Benoit, Mia [PH]" <MBenoit@providencehealth.bc.ca>
Subject: RE: [Dysphagia] Ethical Issues
To: "Nancy Burnett" <NBurnett@cmh.org>, <dysphagia-bounces@b9.com>,
	"Paula leslie" <Paula.Leslie@newcastle.ac.uk>,	"Dysphagia List"
	<dysphagia@b9.com>
Message-ID: <8A84506599137644A2FF5024B6BA90A5145848@vchexmb8.vch.ca>
Content-Type: text/plain;	charset="iso-8859-1"

Ethically, if C is compentent and able to make his own decisions then he should be able to eat if this is his choice. Maybe another honest talk about the risks should be had and then it is C's decision. It becomes more complicated if C is not competant and a substitute  decision maker needs to be found. 
Everyone has the right to make decisions about their own quality of life and what is important to them and I believe as health care professionals we must respect that. 
Mia

-----Original Message-----
From: dysphagia-bounces@b9.com [mailto:dysphagia-bounces@b9.com]On
Behalf Of Nancy Burnett
Sent: Wednesday, December 07, 2005 5:48 AM
To: 'dysphagia-bounces@b9.com'; 'Paula leslie'; Dysphagia List
Subject: RE: [Dysphagia] Ethical Issues


Hi Paula,
It seems to me that C's wishes are paramount if he indeed is aware of and
cognitively able to weigh the risks and benefits of oral feeding. Perhaps
the compromise that is suggested ie honey and pudding consistencies with
aggressive oral hygiene would satisfy C and minimize his risk for chest
complications. Always in search of the "lesser of the evils".
Good luck...Nancy

Nancy Burnett,
Speech-Language Pathologist,
Cambridge Memorial Hospital,
700 Coronation Blvd.,
Cambridge, Ontario.
N1R 3G2
Telephone: 519 - 621 -  2330 ext 1126/Pager 1104
Fax: 519 - 740 - 4978  Attention Nancy Burnett 3BN
Email: nburnett@cmh.org


> -----Original Message-----
> From:	dysphagia-bounces@b9.com [SMTP:dysphagia-bounces@b9.com] On Behalf
> Of Paula leslie
> Sent:	December 7, 2005 1:57 AM
> To:	Dysphagia List
> Subject:	[Dysphagia] Ethical Issues
> 
> 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
> 
> 
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------------------------------

Message: 3
Date: Wed, 07 Dec 2005 13:11:43 -0500
From: "Staci Otto" <otto@email.chop.edu>
Subject: [Dysphagia] pediatric assessment
To: <Dysphagia@b9.com>
Message-ID: <s396df99.000@email.chop.edu>
Content-Type: text/plain; charset=US-ASCII

For research purposes, looking around for any clinical evaluative
measures of oral motor and feeding skills in infants... what is out
there???
thanks

Staci Otto MS CCC-SLP
Children's Hospital of Philadelphia
215-590-7959


------------------------------

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End of Dysphagia Digest, Vol 25, Issue 9
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