In Speech and Language Pathology graduate school, things seem very concrete. If a patient is doing X, then we, as the professional, are supposed to do Y. When it comes to dysphagia management, it’s our job to rehabilitate the patient’s swallow function, and recommend the safest, least restrictive diet texture to optimize oral intake. Seems, straight forward, right? WRONG. Oh, how I wish I could go back in time and tell the young graduate student version of myself that things just are not going to be that simple…
So, how are we supposed to manage dysphagia in a way that balances our professional recommendations, the safety of the patient, and also the wishes of the patient and their family? Unfortunately, there’s no concrete answer to that question! Here, I will attempt to address it the best I can.
First and foremost, EDUCATION. As the professional, it is our job to educate the patient and family about our recommendations, and why we’re recommending them. Remember- if you’re unable to speak to not only what, but why, then maybe we need to rethink what the plan for that patient is.
Providing education in multiple mediums is also helpful in assisting patients and families with understanding diet recommendations. A one time, quick verbal education session often isn’t enough when it comes to ensuring carryover and understanding. Providing handouts, reference websites, and pictures are all helpful to assist family members with demonstrating ‘teach back’ to ensure everyone is comfortable with what is occurring. In addition, doing a ‘hands on’ training is also very beneficial for both the patient and their caregiver. Many people are visual learners, and even more learn by doing so having them practice thickening liquids in real time is very beneficial for all involved. We all know it take a few tries to get the technique ‘just right’ and practice really does make perfect when it comes to this!
Next, you need the DOCUMENT that education clearly, and concisely. A very wise professor in graduate school once said to my class “If you didn’t document it, it didn’t happen.” Be specific, and thorough. Make sure you capture whom (spouse, child, etc.) you talked to, when you talked (during therapy, in after a meal, during a meal) to them, and how you talked to them (in person, phone, WebEx).
Also, include any education materials you provided, and be specific. You want to avoid a “I wasn’t aware,” or “I didn’t know” situation when it comes to family and caregivers. You do not always have to wait for the family to contact you – if you feel it is a complicated case, or there has been “illegal contraband”, food items brought to the patient take the initiative and call the family or caregiver (and document that phone call!)
Focus on the client
Be sure to ask the patient what THEIR GOALS for therapy are. We need to practice person-centered care, and take the wishes of the patient into account when formulating our therapy plan. It is THEIR therapy – not ours! Our patients are not going to participate in they feel like they were not a part of the conversation. You are not going to get very far if you do not take the time to establish a rapport with that patient, and get to know them. What are their likes and dislikes? Are you using food items in your session that the patient likes? Did you even bother to ask them what they like? It is so easy just to go on autopilot and grab graham crackers and applesauce from the hospital pantry without remembering that not everyone likes applesauce… or graham crackers.
Accept the fact that not all patients and families are going to like you, or agree with you. Having someone sign a ‘diet waiver’ or discharging a noncompliant patient from your service is not going to alleviate you of responsibility – you cannot abandon your patient just because they are not ‘buying what you are selling’ (I’ve also been told that ‘diet waivers’ do not hold up in court). Everyone is entitled to make their own decisions… even the bad ones. As the professional, it is your job to educate, counsel and DOCUMENT.
Also, involve administration if needed. Early communication is the best, and if everyone is in the loop, the situation can be better managed. Make sure the doctor, nursing staff, dietary, and all other personnel involved in that patients care are onboard so you are able to present a unified front. Have the data to back up your recommendations, and have the paper trail to prove that the patient and caregivers were educated about the recommendations, risks, and consequences of diet noncompliance.
If there is a particular food item that the patient is requesting, show the patients and caregiver how to alter it to make it safe and compliant for the prescribed diet texture (and document it occurred!). Many of the times, eating and food are the only items within a patient’s control, so they exercise that control when they can. There is (usually) someone presiding over every aspect of their care and they cannot even use the bathroom alone. We need to be sensitive to the fact that sometimes we are just the easy target to take out their control issues on.
The last point to consider here is that a lot of families and friends say, “I love you” with food. It is how they show they care and show their support. They often feel powerless when a loved one is sick, and one of the few things they can do is provide food for comfort. Again, we circle back to the education component of dysphagia management. Educating those involved with the patient’s care regarding diet recommendations/needs is paramount so the appropriate items can be brought to the patient as a sign of support from those closest to them.
EMPOWER the families and caregivers to PARTICIPATE in the patient’s plan of care regarding dysphagia and diet texture management. Most of the time we are asked, “What can we do with them when we visit? How can we help? Are there any exercises we can help them do?” If your patient is able to complete a home exercise program (HEP) during their downtime, show the patient’s loved ones how to assist them with completing it outside of therapy time. Be very concrete and deliberate in your instructions, and make it clear that completing some exercises with the patient outside of speech therapy does not give them the license to trial food and liquids that are not within the recommendations (and DOCUMENT it).
The moral of the story here is there is so much more to dysphagia and diet texture management then structure and function of the swallowing mechanism itself. As a clinician, you really need to take a step back, and look at the big picture. If someone is noncompliant with their diet recommendations, do some self-reflection. Have you educated them appropriately? Has the family been educated? Have you made yourself available for questions and concerns, and are you open to considering those concerns? Is the rest of the care team behind you?
Please check out the International Dysphagia Diet Standardization Initiative website at https://iddsi.org/ for further information re: IDDSI diet levels, education materials, and handouts.
For more information about the social and ethical implications for dysphagia management, check out ARC Seminar’s 0.3 ASHA/AOTA CEU, practical short course “Life with Dysphagia: Breaking down social and ethical barriers”.
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