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!   

Usual Care in Dysphagia Rehabilitation

I am so excited to be a part of the journal article blogging group! Of course, my articles reviewed will be regarding dysphagia.

My first article, I found very interesting:

What is “Usual Care” in Dysphagia Rehabilitation: A Survey of USA Dysphagia Practice Patterns by Giselle D. Carnaby and Lindsay Harenberg.

This article was found on the Dysphagia Journal website DOI 10.1007/s00455-013-9467-8.

This article surveyed members of ASHA SIG 13. They were questioned on experience, work setting, schooling and treatment options given a scenario of a patient. There were 254 responses.

As a whole, we are moving away from use of compensation and maneuvers and working more towards exercise-based programs including Expiratory Muscle Strength Training (EMST) and the McNeill Dysphagia Therapy Program (MDTP).

This article defines evidence based as ” effectively combines clinical expertise, scientific research, and patient values to ensure that a client receives research-supported care that is tailored to his or her individual needs.”

60% of respondants routinely conduct an MBSS prior to therapy, but only 40% conduct and MBSS post-therapy.

55% of SLPs reported using self-developed assessment or outcome measures, 44% use facility-developed, 37% use published peer-reviewed tools and 29% use published tools with statistically confirmed validity.

Typical length of therapy is 30 minutes with 54% providing treatment daily. Of therapy techniques, 92% were derived from CEU courses, 70% were learned from colleagues and 44% were self-developed or 20% from journal articles.

37% reported that their patients were tube-dependent prior to treatment with 49% reporting patients at a FOIS level 5. Post-therapy, 48% reported their patients at a FOIS level 5. 19% reported return to a full oral diet without restriction. Only 54% responded that patients returned to their pre-injury diet.

With review of the patient scenario, 91% stated they would commence swallowing therapy. 52% would start with ice chips.

Seven swallowing techniques were suggested on whole:

Neuromuscular Electrical Stimulation

Shaker Exercise

Hyolaryngeal Elevation (Mendelsohn)

Effortful Swallow

Oromotor Exercises

Tongue-Based Retraction

Super Supraglottic Swallow

More than 47 different therapy techniques were recommended for this patient (only 3.9% of respondents indicated they derived their recommendations from a specific physiologic abnormality from provided data. 96 different combinations of therapy techniques were recommended with no single combination exactly repeated. More than 58% of the techniques recommended did not match the patient’s specific dysphagic symptoms. 13% of techniques were exercise-based interventions and 19% reported using an exercise-based intervention as their primary method.

This study is vital in looking at what we as dysphagia specialists do in our treatments. Although recent literature is showing us that it is vital to use exercise-based treatments for dysphagia, only 13% recommended exercise based therapy techniques.

No 2 people recommended the same exercise combination of techniques. Basically, from this large sample, there is no “usual” care and few are using valid tools to measure and assess. Only 19% reported patients returning to their prior-level diet!!

As a whole we should be rehabilitating the swallow. This article shows that we may not be doing what we are claiming. We have no “usual” care. We often decide on a variety of exercises, with no 2 clinicians using the same set of exercises. For dysphagia, we have no standardization.

Protocols such as MDTP and EMST give us the intensity, frequency and resistance we should be adding to our therapy sessions. Our goal is to rehabilitate the patient to their pre-dysphagia level and we have to work to the best of our abilities to get our patients there!