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!   

Bad Week….We All Have Them

Warning this post may contain explicit language. Yes that is just the kind of week I had last week. I’m not saying that I don’t have bad week at other times but last week was a super shitty week. It makes me think back to a couple of weeks ago to the bird sitting in the middle of the road that tried to fly away as I drove along but instead bounced off of my windshield and it ended in a rain shower of feathers. That kind of shitty week.

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I Just Can’t Fix Them All

I went into the field of Speech Language Pathology to help people.  It started out that I was definitely going to work with children and more than likely work in a school system.  I had ZERO interest in working with adults while I was still in graduate school.

It was a wonder that I actually completed an adult-based internship.  I was in a Level 1 Trauma hospital working in the rehab unit.  I actually enjoyed it.  I was a little grossed out at the time with some of the dysphagia techniques, but eventually grew to love it.

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Starting Somewhere

It’s so easy to become judgmental and forget that we all had a beginning point in our careers.  It becomes so easy to forget all of our screw-ups and not so perfect evaluations and therapy sessions.   It’s so easy to forget those times that you thought you didn’t need an instrumental assessment because you already knew what was wrong with your patient.

Facebook groups have been a blessing for many and a source of frustration for many others.  Comments come off as snarky and know-it-all, even when that’s not the intention.  We often don’t want to hear about what we’re doing that wrong.

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Dysphagia Awareness

Dysphagia Ramblings

June is Dysphagia Awareness month. This is great, it really is. I love that we finally have a month. Dysphagia Awareness is so needed and so necessary in our field. We seriously need to have Dysphagia Awareness Day, everyday.

I can’t even begin to tell you how many patients I have that have never heard of dysphagia. When my patients have trouble with swallowing, they always tell me, I never knew that was a thing!

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