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10 June 2014

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 June 10, 2014
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This month’s Research Tuesday is devoted to ethics in the provision of speech pathology services.  We encourage you all to check out Gray Matter Therapy’s article roundup on Thursday to gain insights in ethics from all areas of speech pathology – from neonates to geriatrics.

His Right to Aspirate
When I saw it happen, I gasped.  His arytenoids didn’t approximate, his larynx didn’t elevate, there was no tell-tale “white out” of the swallow, the liquid just splattered into his trachea, joining the eggs that were apparently still there from breakfast.  He was my first FEES exam to meet bailout criteria (silent aspiration on 2 trials thin, nectar and puree) and I knew the only option was to recommend alternative means of nutrition and hydration.  I sat down with him and his family to discuss my plan.  The only safe option was a feeding tube, I told him. He looked me straight in the eye, shook his head and said “absolutely not.”  It wasn’t an option for him.  I’m sure at the time I got really flustered.  I probably turned red.  I left the room and tattled on him to the doctor hoping she could talk him into it.  He never got a feeding tube.  He died a few weeks later, and I never heard if it was an advancement of his cancer or from pneumonia or from some other medical malady.  He died.  I was sad.  I knew I had handled the situation poorly, but I was new and arrogant and had to move on with my patient list.  If only I knew how many more times I would be put in that same situation, offering good advice based on the best resources available, to be met with an unemotional “no.”  Maybe I would have worked harder to learn how to handle those kinds of situations better, and maybe I could have made my patient’s experiences (and possibly last few weeks of life) a little better.
Kaizer, F.,  Spiridigliozzi, A.M., Hunt, M.R.  2012.  Promoting Shared Decision-Making in Rehabilitation: Development of a Framework for Situations When Patients with Dysphagia Refuse Diet Modification Recommended by the Treating Team.  Dysphagia.  27:81–87. (Full text here)
This article comes from Dysphagia Journal and documents the creation of a diet modification refusal protocol in a hospital in Quebec.  The full article can be accessed in the link above.  It is short and well worth the read.  Though this protocol may not suit your practice or your hospital, the framework behind it can be used for creating your own protocols.
The article begins with clarifications of the ethical terms of autonomy, informed consent & beneficence.  I have provided the authors’ paragraph on autonomy below.  If you do not read anything else in this blog post, read this (emphasis is mine).
“Autonomy is typically understood as an individual’s right and ability to make choices and practice self-determination [15]. Respect for autonomy also places a negative duty on others not to interfere in the exercise of an individual’s autonomy without compelling reasons for such interference. In health care, autonomy is closely linked to the doctrine and practice of informed consent. Informed consent is a process by which a competent patient, or the duly identified surrogate decision-maker for an incompetent patient, is provided with the opportunity to receive relevant information regarding a medical decision, ask questions, weigh options, and enact decisions that are consistent with their goals and values, and free from coercion. In a range of circumstances, respecting a competent patient’s informed refusal of an offered treatment is consistent with the principle of autonomy.”
The authors from the Jewish Rehabilitation Hospital (JRH) in Laval, Quebec developed an interdisciplinary dysphagia team to ensure proper management of patients with dysphagia.  During team meetings, it was determined that a protocol should be developed for patient refusal of diet recommendations, and an outline was created.  They had experienced the same rejections as I had, what a relief!  The outline is below.
protocol for refusal
I found it interesting that during the development process the group considered and then rejected the “quick fix” of having the patient or family sign a waiver when refusing a diet – something that has been attempted at hospitals in the past to help reduce liability.  I’m not saying that these waivers are right or wrong, but that they do not solve the problem.  With the waivers the focus is placed on the SLP/hospital, not on the patient.  It is easy to have the patient/family sign a form, discharge the patient from services, and never think about them again…until they come back, usually worse off than when you left them.  The truly difficult thing is to continue to maintain your unconditional positive regard for your patient and to provide excellent education and services, if permitted.  At SA Swallowing Services, this is called “care-planning.”  This includes a process like the one above, involving patient, family and staff.  Out of the care plan meeting comes a written document specifying the patient’s diet refusal and that everyone is aware and on the same page.  Also note that waivers may not actually hold up in court.
Numerous times in my career I have been asked to “talk” a patient into a particular diet or feeding tube.  These requests usually come from a concerned family member or caring doctor, but unfortunately I have had to remind these individuals that coercion and manipulation are not part of an effective clinical skill set.  Education and counseling are, but when a competent patient makes a decision to refuse treatment we offer to them, we must respect their decision.  Just because we do not like their choice does not mean that it is wrong.
At the 2014 Dysphagia Research Society Meeting, Dr. Paula Leslie presented a beautiful lecture on ethical considerations in dysphagia management.  One point she made that has really stuck with me was the concept of “eminence-based practice.”   This idea is common in medical professionals and occurs when a clinician tells the patient to ‘do it because I say so and because I know what is best for you.’  This patriarchal assumption that the clinician “knows best” is outdated and is not best practice.  We should be communicating with patients to best develop plans centered around the patient’s goals, not our own.
The concept of patient autonomy was a huge challenge for me as a new clinician, but I hope that as I have gained years of experience under my belt, I have become better at respecting my patient’s right to make their own choices.  I have found that the burn of refusal never really goes away, but my reverence for my patients has grown, as has my realization that my clinical practice is not about me.  Its about them.

Kelley Babcock, MS, CCC-SLP, BCS-S, is a voice and swallowing therapist from Nashville, Tennessee.  She works as a clinician and educator for SA Swallowing Services which provides basic, advanced and custom FEES courses for SLPs across the country.  For more information on FEES and dysphagia, check out sasspllc.com or connect with Kelley on Twitter or LinkedIn.

(Image courtesy of Stuart Miles / FreeDigitalPhotos.net)

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