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Posts by dysphagiaramblings


Dysphagia with Head and Neck Cancer

As I have worked more and more with patients with head/neck cancer, I’ve discovered how much I like working with that population.  One thing I have really learned with these patients, is they need to do SOMETHING, particularly during treatment.  They need education well before treatment begins.

Many of these patients get a PEG tube prior to treatment and most just don’t feel like moving while undergoing treatment.  If the patient doesn’t have a PEG tube prior to treatment it is likely they will get one during treatment.

Presenting the Research

In 2012 at the ASHA convention, Dr. Crary and Dr. Carnaby presented on a topic called pharyngocise.  The results of this study were really not much of a surprise, but very interesting.

The full, free article can be found here.

The Article

The article title:  “Pharyngocise”: Randomized Controlled Trial of Preventative Exercises to Maintain Muscle Structure and Swallowing Function During Head-and-Neck Chemoradiotherapy.  by:  Dr. Giselle Carnaby-Mann, Dr. Michael A. Crary, Dr. Ilona Schmalfuss and Dr. Robert Amdur.  This article was published in the International Journal of Radiation Oncology at the above link.

This study looked at 58 patients with head and neck cancer of the oropharyngeal region.  These patients were being treated with chemoradiotherapy (CRT).   These patients also had no history of nonoral feeding for cancer-related illness.

Study Groups

The patients were split into 3 study groups including “usual care”, standardized sham treatment and pharyngocise groups.

Inclusion/Exclusion Criteria Included:

“Inclusion Criteria: – Head / neck cancer of the oropharyngeal or adjacent regions, confirmed by clinical history and exam, with positive cross sectional imaging studies and histopathological biopsy excluding other pathology. – Planned to undergo external beam radiation therapy, – No previous history of nonoral feeding for cancer related illness, – Able to undergo MRI procedures. – Physician / patient agreement to participate Exclusion Criteria: – Planned surgical intervention – Existence of a co-existing neurological or medical disorder known to cause dysphagia – Prior radiotherapy or surgery to the head / neck region that could contribute to dysphagia. – Previous swallowing therapy within four weeks of randomization”

The usual care group included treatment, if offered of supervision for feeding and precautions for safe swallowing including positioning, slow rate of feeding by the hospital SLP.

The sham group included a buccal extension maneuver that the research group calls “valchuff” (quick lip blowing, mouth opening and puffing tasks) 2 times daily with 10 reps over 4 cycles each 10 minutes and dietary modification.  Therapy sessions lasted 45 minutes.

The pharyngocise group or the “standardized high-intensity swallowing therapy group” included a set of exercises:  falsetto, tongue press, hard swallow and jaw resistance/strengthening using a Therabite Jaw Motion Rehabilitation System and dietary modifications.  Therapy was 2 times daily with the SLP, for a max of 6 weeks (duration of CRT) including 10 reps over 4 cycles each lasting 10 minutes.   Therapy sessions were 45 minutes.

All subjects received a clinical and instrumental exam of the swallow system prior to CRT.

Home Exercise Program

All patients also had a home practice program, with greater compliance with the sham group than the pharyngocise group.


Muscle loss was measured by MRI for the genioglossus, mylohyoid and hyoglossus.  All groups had muscle deterioration.  The genioglossus, mylohyoid and hyoglossus showed more deterioration in the usual care group with greater preservation of these 3 muscles with the pharyngocise group.

31% of patients had a reduction in MASA score (worsened) during CRT.   Swallow ability deteriorated less in the pharyngocise group.  All subjects consumed a normal oral diet at their baseline level.  23% (9) subjects maintained a normal diet throughout CRT.  Subjects in the pharyngocise group (42%) maintained oral feeding at a greater rate than the usual care group (14%).  Tube feedings received were 20% in the pharyngocise group and 30% in the usual care group.

FOIS scores declined in all subject groups, usual care group declined from a median of 7 to a median of 4, the sham group from median 7 to median 4 and pharyngocise group from a median of 7 to a median of 5.

Outcomes at 6 weeks for usual care vs. pharyngocise includes respectively:
Normal diet:                              2/14 to 5/12
Nonoral feeding:                       6/14 to 3/12
Functional swallowing:             2/14 to 6/12
Weight loss (>10%):                 6/13 to 4/14
Salivation decline:                    12/13 to 8/14
Taste decline:                           10/12 to 9/14
Smell decline:                           6/11 to 2/13
Any complication:                    7/14 to 5/12

Results of this study:  exercise helps to prevent muscle loss, decline in swallow function and decreased cost for patients with head and neck cancer.  Diet modification alone results in increased nonoral feeding, increased weight loss, increased decline in taste and smell.  While any exercise is good, pharyngocise demonstrated superior results as related to muscle maintenance and functional swallowing ability as there was a standardized protocol with these patients.

Remember, pharyngocise was studied and created for patients during CRT.  More intense therapy will be required for patients following CRT.

Outcomes Measures for Patients with Head and Neck Cancer

Most tools for measuring outcomes for patients with head and neck cancer can be found online including:

Mann Assessment of Swallowing Ability-Cancer (MASA-C)
Functional Oral Intake Scale (FOIS)
MD Anderson Dysphagia Inventory (MDADI)
MD Anderson Dysphagia Symptom Index (MDASI)


Carnaby-Mann, G., Crary, M. A., Schmalfuss, I., & Amdur, R. (2012). “Pharyngocise”: Randomized controlled trial of preventative exercises to maintain muscle structure and swallowing function during head-and-neck chemoradiotherapy. International Journal of Radiation Oncology Biology Physics , 83, 210–219.

Research behind the MASA-C

Crary, M. A., Mann, G. D. C., & Groher, M. E. (2005). Initial psychometric assessment of a functional oral intake scale for dysphagia in stroke patients. Archives of physical medicine and rehabilitation86(8), 1516-1520.

Schindler, A., Borghi, E., Tiddia, C., Ginocchio, D., Felisati, G., & Ottaviani, F. (2008). Adaptation and validation of the Italian MD Anderson dysphagia inventory (MDADI). Revue de laryngologie-otologie-rhinologie129(2), 97-100.

Armstrong, T. S., Mendoza, T., Gring, I., Coco, C., Cohen, M. Z., Eriksen, L., … & Cleeland, C. (2006). Validation of the MD Anderson symptom inventory brain tumor module (MDASI-BT). Journal of neuro-oncology80(1), 27-35.

Wang, X. S., Williams, L. A., Eng, C., Mendoza, T. R., Shah, N. A., Kirkendoll, K. J., … & Cleeland, C. S. (2010). Validation and application of a module of the MD Anderson Symptom Inventory for measuring multiple symptoms in patients with gastrointestinal cancer (the MDASI‐GI). Cancer116(8), 2053-2063.

Head and Neck Cancer Course Part 2

Today, I’m taking a look at the Second Part of the Radiation Associated Dysphagia (RAD) course from Dr. Kate Hutcheson available on MedBridge.

This course, Radiation Associated Dysphagia (RAD) Part II:  Evaluation and Management which you can find here.

The first part of the course was all related to learning as much as possible about etiology of swallowing following radiation treatment and learning terminology related to tumor, nodes and metastasis.

Part 2 focuses heavily on management and treatment of RAD.   The course looks at outcome measures used at MD Anderson, compensatory strategies, incidence of G tubes and Dysphagia Bootcamp (therapy program).

My takeaways from this course:

Radiotherapy often effects a critical swallowing structure.

Tissue effects can be: edema, fibrosis, denervation

Dysphagia can be graded.   Grades include:

  • 0-No dysphagia
  • 1-Symptomatic, eats a regular diet.
  • 2-Symptomatic-eats an altered diet/altered swallowing.
  • 3-Severely altered-Tube/TPN/hospitalization indicated.
  • 4-Life-threatening-Needs urgent intervention.

Pathophysiology of RAD:  Mechanics:  Laryngeal closure, Bolus closure, Esophageal opening


  • Eat and exercise is indicated:  Remember 1 of the 10 Principles of Neuroplasticy is Use it or lose it.
  • Therapy may include compensations to normalize the swallow as much as possible.
  • When looking at a Home Exercise Program (HEP), the HEP is often not followed and there is a lack of progression of the exercises included.
  • Dysphagia Bootcamp looks at 2 areas:  Biofeedback or tool based (Surface Electromyography sEMG, Iowa Oral Performance Instrument IOPI, Expiratory Muscle Strength Training EMST) and MDTP or bolus driven exercise.

Just remember, the assessment of dysphagia, whether it is due to head and neck cancer or not, is your building block to developing an appropriate treatment plan.   The treatment plan is how you will most impact the swallowing.  When you use a thorough assessment protocol and determine the pathophysiology of the swallow, you are able to develop an efficient plan for your patient and hopefully will be able to impact the swallowing function of your patient.

You don’t currently have a subscription with Medbridge?  Not a problem!  We have you covered!!  For $95 a year, you can have access to this course and many other great courses covering a wide variety of SLP-related topics.

Go here to sign up today!!

Use the code DysphagiaRamblings at checkout!  (I do make a small amount of money for each person that signs up under me, however this all goes right back into the blog!)

Head and Neck Cancer Course

So, let’s say you are a medical SLP.  You get an order for a new patient with a recent diagnosis of head and neck cancer.   You have never worked with head and neck cancer, so you just really aren’t sure what to do.

Not that you will learn EVERYTHING you need to know, but you most certainly can learn a lot of background knowledge from a course.

Medbridge actually has a 2-part course on head and neck cancer by Kate Hutcheson.  The first part is called Radiation Associated Dysphagia (RAD) Part 1: Etiology and Toxicity.

This is such a great review of complications arising from radiation therapy including:

  • odynophagia (pain with swallowing)
  • xerostomia (dry mouth)
  • mucosal damage/irritation or mucositis

Tumors are staged using 3 factors:

Tumor (T) indicating the size of the tumor or the extent of the involvement:

  • TX:  The primary tumor cannot be assessed
  • T0:  No evidence of primary tumor
  • T1:  Les than or 2 cm in the greatest dimension
  • T2:  More than 2 cm and less than 4 cm in the greatest dimension
  • T3:  More than 4 cm in the greater dimension
  • T4:  Invades any adjacent structures

Nodal Status (N) this is an important predictor of patient survival

  • NX:  Regional lymph nodes cannot be assessed
  • N0:  No regional nymph nodes
  • N1:  Single ipsilateral node, less than or equal to 3 cm
  • N2a-c:  Single ipsilateral node 3-6 cm or multiple nodes at less than 6 cm
  • N3:  Greater than 6 cm single or multiple ipsilateral nodes

Metastases (M) Rare at presentation but is typically lung

  • MX:  Distant metastases cannot be assessed
  • M0:  No distant metastases
  • M1:  Distant Metastases

If you work with or think about working with the head and neck cancer population, you definitely want to take a look at this course.

You don’t currently have a subscription with Medbridge?  Not a problem!  We have you covered!!  For $95 a year, you can have access to this course and many other great courses covering a wide variety of SLP-related topics.

Go here to sign up today!!

Use the code DysphagiaRamblings at checkout!  (I do make a small amount of money for each person that signs up under me, however this all goes right back into the blog!)


The Medical SLP

The Patient

Being a medical Speech Language Pathologist (SLP) is quite different than working in a school.   Most people know that an SLP working with children often work on sounds that are produced in an incorrect manner or language skills.  The SLP may also help with reading and reading comprehension.


Did you know that an SLP can also work on social skills with students who have difficulty with appropriate interactions with others?


An SLP may work in a pediatric hospital and work with babies and children who have swallowing difficulties.   Many babies in the NICU require SLP services to learn to eat or suck using a bottle or even with breastfeeding.


As a medical SLP, I really believe the most common phrase I hear is…..”I don’t need speech therapy.  I talk just fine.”  Seriously, if I had a penny for every time I heard that, I could retire in style.


Our name is very misleading and barely touches on the wide array of deficits the SLP can rehabilitate.  Many SLPs have speech and language in their title, but never work with either.

Read more

The Patient

I know.  You hear all the time about the importance of instrumental assessment and how vital instrumental assessment is in your plan of care.   You get all the research, you read all the articles and posts about instrumental assessments.   

There are still people out there totally and completely confident that they are able to tell when a person aspirates or does not aspirate by use of a Clinical Swallow Evaluation alone.  

I am completely in agreement that the Clinical Swallow Evaluation is critical in the assessment puzzle.  Like any good investigator, you have to fill in all the pieces to make the picture as complete as possible.   

I’m going to tell you a story.  All identifying information has been changed to protect the identity of the patient.  

Harold is 87 years old.   Harold was in the hospital for a second stroke when the Speech Language Pathologist was called in for a bedside evaluation.   Harold also has COPD but is otherwise fairly healthy.   Harold has severely impaired with expressive language due to aphasia and nursing was concerned because Harold choked when they attempted the Yale Swallow Protocol.   The Speech Pathologist came into the room, armed with crackers, pudding and water.   Harold was asked to complete a series of 1 step directions and was unable to follow most directions at the time.  Harold had a labial droop on the right side, indicating CN VII (Facial Nerve) damage.

Harold was given an ice chip with no difficulty noted with swallowing.  When given a drink of water Harold choked to the point that he was unable to catch his breath and his face was turning different shades of red.  When Harold recovered, he was given a bite of pudding and seemed to swallow the bite of pudding without difficulty.  Harold also was able to use his tongue to remove a small amount of pudding that remained on his upper lip.   The second bite of pudding resulted in choking again.

It was recommended at that time that the SLP would return in the AM to reassess patient status and determine if patient would be appropriate for a Modified Barium Swallow Study (MBSS).  Modifieds can only be performed on specific days as the radiologist is not on site every day.

Patient was re-assessed and it was determined by choking that patient was still aspirating and not ready for MBSS at this time while in acute care.

Patient had a G tube placed for nutrition and hydration and was sent to acute rehabilitation.   While in rehab for several weeks, patient was seen by the SLP.   It was determined by Clinical Swallow Evaluation that patient was not able to manage his secretions and no instrumental assessment was completed while staying in acute rehab.  

When Harold was sent home, he was recommended for Home Health Services.    Harold had not eaten in nearly FOUR months and due to the aphasia was unable to state what he had been doing in therapy.   During his evaluation, Harold was given a pureed consistency to try.  At this time, Harold had difficulty maintaining saliva in the oral cavity, due to continued right sided labial droop/weakness with poor lip closure on the right side.  Harold had to keep a towel nearby.   Harold swallowed the pureed consistency with no signs of difficulty other than some mild pocketing on the right side which he cleared easily with cues.   Harold ate the entire portion with no coughing.   

Harold went to the doctor later that day for an appointment who scheduled Harold’s first MBSS since his stroke for the next day.

Harold was placed on a pureed diet with nectar thick liquids and was soon upgraded to thin with mechanical soft and eventually regular food.

Harold was happy and started communicating more.  Harold no longer needed a towel because he had no further issues with drooling, other than occasional anterior loss of bolus with thin liquids on the right side due to mild labial weakness.   Harold was so happy to be eating and started improving in all areas of therapy.   

Moral of the story:  Harold wasn’t able to tell the acute care SLP that he frequently has choking with liquids and without due to his COPD.   The choking seems severe when it happens and his face will turn 50 shades of red when the coughing happens.  Harold has had no respiratory compromise with any of the choking events.   Sometimes our bedside ears deceive us and we need to see what is happening in the pharynx to be able to create the most effective plan of care for our patients!

3 Reasons You Should Never “Fake it Till You Make it” in Dysphagia

I really don’t know where the phrase “fake it till you make it” came but it’s one phrase that absolutely makes me cringe in relationship to dysphagia.

Don’t get me wrong.  You should always go in confident in your skills.  How can you possibly be confident though in skills you don’t possess?

The scary part is, with dysphagia, if we don’t know what we are doing, but go in to diagnose and treat on the “fake it till you make it approach” we can play a key role in the person’s death.

Not necessarily that the person even chokes on something.  When we change a patient’s liquids and thicken the liquids, the person can then experience dehydration, sepsis, UTI or a multitude of other effects.

So let’s get to it.  The THREE reasons why you should never fake it till you make it in dysphagia therapy.

Reason One

It’s actually against our code of ethics provided by ASHA.

“Individuals shall not misrepresent their credentials, competence, education, training, experience, and scholarly contributions.”

When we “fake it” we are actually telling patients that we are competent in an area that we may not have a clue and misleading that patient.   Ideally, we should help that patient find a competent clinician if you do not feel that you fit that bill.

Reason Two

How can you assess and diagnose what you don’t know?

Yes, we diagnose dysphagia.  This is the reason we are Speech Language Pathologists in the US.  We are able to diagnose a range of speech and swallowing related disorders.

If you don’t understand the normal swallowing process and know the deficits, how can you possibly diagnose dysphagia?  Did you know that when a diagnose is given to a patient, that diagnosis stays with the person.

Misdiagnosis often leads to inappropriate diet changes, unnecessary therapy services and possibly secondary issues that can arise from those inappropriate diet changes.

I mean, do you really know any person that has been excited about having thickened liquids?  Have you ever had a patient comment on the amazing taste of thickened liquids?

What if you are the person responsible for the Modified Barium Swallow Study (MBSS) or Flexible Endoscopic Evaluation of Swallowing (FEES)?  Do you know how to complete the test or interpret the test.  If the answer is no, then you’ve just wasted, money, time and effort.  Accurate completion and reporting of either of these assessments is vital in diagnosing, referring or providing treatment for dysphagia.

Reason Three

Just like you can’t assess and diagnose dysphagia, how can you possibly treat dysphagia when you don’t understand it.

I mean sure, you can throw a list of exercises at a patient, you can modify the diet, but what are you doing for the patient?   What are you actually accomplishing with this patient?

This patient is relying on you to be the expert, to be honest with them and to help them with an issue that is a major roadblock in their recovery.

What can you do?

Don’t turn to social media the night before an evaluation or treatment session knowing nothing about the disease process, the assessment or the treatment protocols.

If you are interested in dysphagia but don’t feel comfortable or confident in dysphagia, find a mentor, read journal articles, shadow, read textbooks.  Learn everything you possibly can about dysphagia.

Be honest with your patient.  I am terrible with fluency.  If I have a referral for a patient with dysfluency, I will more than likely refer them out to an SLP with more experience.  It’s the right thing to do.

Hold paramount your patient’s best interest and never, ever “fake it till you make it.”

  • Tanner, D. C. (2010). Lessons from nursing home dysphagia malpractice litigation. Journal of gerontological nursing36(3), 41-46.
  • American Speech-Language-Hearing Association. (2004). Knowledge and skills needed by speech-language pathologists performing videofluoroscopic swallowing studies.
  • American Speech-Language-Hearing Association. (2002). Knowledge and skills needed by speech-language pathologists providing services to individuals with swallowing and/or feeding disorders.
  • Boaden, E., Davies, S., Storey, L., & Watkins, C. (2006). Inter professional dysphagia framework. University of Central Lancashire, Preston.
  • McAllister, L., & Rose, M. (2000). Speech-language pathology students: Learning clinical reasoning. Clinical reasoning in the health professions, 205-213.
  • Kamal, R. M., Ward, E., & Cornwell, P. (2012). Dysphagia training for speech-language pathologists: Implications for clinical practice. International journal of speech-language pathology14(6), 569-576.
  • ASHA Code of Ethics


Do you set New Year’s resolutions?  New year, new you?

I have decided to stray from the traditional resolutions.   I mean does anyone ever really keep them anyway?  I’m going to exercises more, I’m going to lose weight, I’m going to watch a CE course everyday?

The problem with resolutions is that they are so vague they’re easy to just give up.

Think about it this way.   If you make goals for your patients the same way you make goals for yourself how often would you be able to show progress or even know what to do with your patient.

Patient is going to talk more or patient is going to eat without coughing really isn’t a goal.

Write goals for yourself that are measurable and attainable.

By December 31st, I will have earned 15 CEU’s.  How will I get there?  I will join Medbridge or Speech or both and take ________ courses.   I will take 5 courses on aphasia, 5 courses on dysphagia.  You get the idea.

The beautiful thing is that your goals don’t have to be all work related!  I always set personal goals, work goals and family goals.

Another trend has been to choose a word.  A word that represents your year.   What word would you choose to represent your 2019?

I still haven’t found “the” word.  I will though.  My goal is by the end of January.

Don’t beat yourself up if you stray from your goals or fall off track.  Jump right back on that train.  You wouldn’t let your patient down if they don’t meet the goal exactly as you’ve written it.  Don’t you let yourself down.

My motto for this year is “A better me, a better SLP”.  If I take care of myself and am happy, then my patients will get the best me they can get!

What are some of your goals for this year?

Be the Change



Let’s face it, we’re not all leaders. Some of us are happy going to our jobs and just done at the end of the shift. Many of us tend to get on social media and complain about issues that we feel are out of our control.

The problem is that just voicing our concerns on social media does not solve the problems. We have to look beyond ASHA and our boss to make these changes.  Now don’t get me wrong, ASHA, management, your state association can be a great start.

You might be asking what are some of these gripes and complaints. Productivity is the big one. We are often asked to work billable time for the majority of our day not allowing us any break for consultation or paperwork that is required of us.  How many of us go in to work,  clock out to maintain our productivity while completing paperwork, making phone calls or some of the necessary but not billable time possible while maintaining 90% productivity or more.   Maybe the reason the productivity expectations exist and the reason that it keeps getting higher is because people are actually meeting these standards. When we give 100% the next expectation will be 110%.

So maybe we can sit and stew about the fact that I’m working on my own time or maybe I can join my state association or ASHA and help bring about change to that productivity.

Another frequent complaint is the lack of instrumental assessment.  Some facilities will not allow instrumental assessment,  however have you presented the cost associated with an pneumonia or with any re-hospitalization compared to the cost of an instrumental assessment?  How can you possibly build an accurate plan of care for your patient when you can’t assess your patient?

When we actually think outside the box that’s when we can get things done.

Continue to educated yourself.  Stop being so complacent with your job.  Stop using non-evidenced based practice and the same oral motor exercises that have been used for 25 years.  Keep up with new practices.  Be a champion and advocate for yourself and for the profession you hopefully love.

When you start standing up for yourself and demonstrating efficiency and competence in your job is when we can show other medical professionals the value in the Speech Language Pathologist in the area of dysphagia.

Stop just posting to gripe on social media and make a change!!

Why Won’t They Do What I Say??

I mean, let’s face it.  When we go through all that work of assessing a patient and making these phenomenal recommendations, we get a little testy when they are not followed by the patient, nursing staff or family.

Do we ever ask WHY these recommendations are not being followed?

Let’s face it.  We really don’t need a comprehensive study to determine that thickened liquids are not as tasty as regular liquids and pureed hot dogs just don’t cut it at a baseball game.

Colodny in 2005 found that 40% of patients with dysphagia that are capable of independent feeding choose to NOT follow the recommendations of the SLP.

Why would that even be a question?

Think about these factors:

  • Fear
  • Denial
  • Loss of independence
  • Loss of pleasure
  • Depression
  • Family pressure
  • Financial concerns
  • Lack of information
  • Religious/spiritual belief
  • Previous experience

These factors were all found to contribute to non-compliance.  How many patients or family members have ever said to you…..”I never knew that swallowing could be affected.”

There is such a lack of understanding of dysphagia, among the medical field, patients and lay people.

How do we bridge this gap?

Seriously, nursing staff should be compliant with my recommendations, right?

Not always.  And why would that be?

Another study by Colodny in 2001 looked at why nursing staff does not follow SLP recommendations.  Barriers to following recommendations:

  • Hassle
  • Knowledge
  • Disagreement

Nursing staff found that it was a hassle and time consuming to thicken liquids and to prepare food to meet patient needs.  They maybe lacked knowledge of feeding techniques, why the recommendations were made or even WHO needs to have the diet modifications.  Nursing staff also may disagree with our recommendations.  They may see Patient Joe that is chugging away at a glass of water.  He never coughs.  Nope, he’s a silent aspirator.  He won’t cough.   The problem is, the nurse doesn’t see any overt clinical symptoms that are expected with aspiration.

So, don’t go getting mad at your patients, families or staff.  Maybe they just don’t understand.  It’s amazing what a little education can do to bridge the gap.  Now, this isn’t always the case, but it’s always worth the effort.

  • Colodny, N. (2001). Construction and validation of the mealtime and dysphagia questionnaire: An instrument designed to assess nursing staff reasons for noncompliance with SLP dysphagia and feeding recommendations. Dysphagia16(4), 263-271.
  • Colodny, N. (2005). Dysphagic independent feeders’ justifications for noncompliance with recommendations by a speech-language pathologist. American Journal of Speech-Language Pathology14(1), 61-70.
  • King, J. M., & Ligman, K. (2011). Patient noncompliance with swallowing recommendations: reports from speech-language pathologists. Contemporary Issues in Communication Science and Disorders38, 53.
  • Morris, L. S., & Schulz, R. M. (1992). Patient compliance—an overview. Journal of clinical pharmacy and therapeutics17(5), 283-295.
  • Ekberg, O., Hamdy, S., Woisard, V., Wuttge–Hannig, A., & Ortega, P. (2002). Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia17(2), 139-146.

They won’t follow my recommendations so let’s burn them at the stake!!

OK, so we’re probably not going to be burning any patients at the stake. I’m fairly certain that you may lose your license for that!

I’m sure we’ve all been there though.  We do a thorough assessment of a patient.   We obtain instrumental assessment just as we were advised.  We make recommendations based on the assessment and instrumental assessment. Then the patient decides they don’t want to follow those recommendations. They decide that they don’t care for the thick liquids and they’re just going to drink regular liquids. So then what do you do with this immaculate plan of care that you’ve taken hours to write.

Some People say that if patients don’t follow recommendations then we need to educate the patient and discharge them due to noncompliance.

Why would you discharge a patient because they don’t follow your recommendation? Isn’t this the person that probably needs your help more than any other?

So think about this scenario. You go to the doctor and find you put on a few extra pounds.   The doctor may recommend that maybe you need to add exercise to your day. Your first thought is sure pal where do you think I’m going to add this exercise into my day? Before I start waking the kids to hours before they actually have to be up so that I can get them out of bed?  Should I add it in at the end of my day after I worked a full time job to go to my PRN job(s) and then to cheer on my kids in whatever sporting events they might be participating this season?  Maybe you don’t understand what I do and how busy I am and I’m top of everything else I have to do at home and at work, I’m expected to keep up with journal articles and best practices. So you tell me when I’m going to add exercise into that day and still have time to sleep at night.  You probably don’t say that.   You may think it as you tell the doctor you’ll do your best try to get a little more exercise.

You go back to the doctor and you’ve only exercised a couple of days in the last four weeks. Now how would you feel if your doctor then said, you know, you haven’t done what I’ve asked you to do and if you continue this lifestyle you are going to end up with high cholesterol, high blood pressure, diabetes, or a number of other conditions. So since you are not following my recommendations, I’m going to sign off on you as a non compliant patient.

Now think of this patient that has possibly had some life altering issue. Maybe they’ve had a stroke or maybe they were recently diagnosed with Parkinson’s disease and all of a sudden have a swallowing problem.  In walks Susie SLP who says everything you eat and drink is going down into your lungs so what I’m going to need you to do is put this delicious thickener in your drinks and then purée all your food.   If you don’t do this, you can aspirate, develop pneumonia and possibly die.   

Some patients try.   They really do. Like you tried that new diet that eliminated all sugar. You did really well until somebody brought in a cake that was just a little too tempting. It’s the same thing for patients. They see other people eating during commercials on TV for whatever restaurant is seen being advertised. They try the thickener in their drinks and say heck with this I’ll take my chances with pneumonia.

The bottom line is, the patient is the one that makes the final decision. Our license and our CCC allows everyone know that we have completed the requirements to practice speech language pathology in each state or in a given facility. Our license does not state that we are now food police and have to monitor every item that goes into our patient’s mouth. If we make recommendations that are ethical and driven by best practice for our patient why would anybody take away our license because the patient decided to not follow all of our recommendations.

Document document document.

Educate educate educate.

Have a conversation with your patient and explain to them why you made the recommendation and what is going on. Educate on oral care and compensation if tested and effective during instrumental assessment.    Let the patient decide on their plan of care with you and the care team.   Maybe the decision is to not follow diet recommendations but to follow a plan for oral care and rehabilitation for the swallow.   

Stay tuned to more information on why your patient may refuse!