Informed Consent: Why Patients Refuse Dysphagia Treatment and What You Can Do

You’re starting to feel frustrated with Sam. He completed his instrumental assessment, but he has no interest in sticking to his treatment program. Even though you let him know that he was aspirating thin liquids… nothing.

Now what?

Education is vital to your patient’s therapy progress. You can’t expect them to follow through with treatment plans unless they understand what’s going on or why a treatment plan is recommended.

Did you know:

• Patients with dysphagia may believe that they will be on a modified liquid consistency for the rest of their life.
• Doctors may not write an order for an instrumental assessment because they already know that the person is aspirating and the SLP will thicken the person’s liquids anyway.
• 40 percent of patients with dysphagia who are capable of independent feeding choose to not follow their SLP’s recommendations.¹

Why Does This Happen?

Sam might be refusing your recommendations for a number of reasons. Some of the most common reasons for patient refusal include:

• Fear
• Denial
• Loss of independence
• Loss of pleasure
• Depression
• Family pressure
• Financial concerns
• Lack of information
• Religious/spiritual beliefs
• Previous experience¹

Some of these reasons are outside of your control, but pay particular attention to “lack of information.” You’re really good at what you do, but how good are you when it comes to explaining what you do and why—and then teaching your patients and caregivers what you know in terms that they can understand?

How much have you involved Sam in the decision-making process? How much education have you provided to help him understand the reasoning behind your recommendations?

Research shows that when patients have a better understanding as to why a specific direction was given and how it will benefit them, they are more likely to follow through.²

Tell Sam. Tell his family, his loved ones, and his caregivers (with permission, of course). Tell them what happened and what you found during your assessment. Most people don’t know the signs of dysphagia or even understand that it’s a thing. This is your time to shine and impress them with all your swallowing knowledge.

Tell Sam what happened during his instrumental assessment—”X happened because of Y, and now we’re seeing Z.” Tell him why he may need thickened liquids, and make sure he understands that with therapy, he will hopefully be able to return to regular liquids sooner rather than later.

Tell Sam why he’s in therapy. Tell him why you are doing specific exercises with him. If an exercise doesn’t make sense to a patient, they’re less than likely to do it.

Often teaching will need to span over multiple sessions, and it’s not just about verbalizing the information. Telling Sam that he needs to complete oral care isn’t enough. You need to show him what you mean by oral care.

Don’t Call Your Patients “Non-Compliant”

Instead of saying a patient is non-compliant, say that they are “utilizing informed refusal.” By calling it informed refusal, you are saying that despite the fact that you have made a good effort to teach a patient about swallowing, they continue to say no to therapy, thickened liquids, or pureed food.

Informed refusal is natural. People want to exercise their independence and make their own decisions. More than likely, the patient or their family has balanced the perceived benefits with the perceived burden and come to a conclusion that best fits their needs and their lifestyle.

You can help them get to that conclusion in a way that allows them to make the best possible decision.

The Problem with the Waiver

Patients are often asked to sign a waiver. This paper states the recommended diet level along with the negative consequences that may occur if the recommended diet level is not followed. Pneumonia, respiratory issues, and death are commonly listed on the waiver. The patient or family member then signs the waiver to release all liability of the treating clinician.

But the reality is that the waiver will not hold up in court. According to Berg, et al., “While a signature on an informed consent document provides some evidence that the patient agreed to an assessment or treatment, the signature does not necessarily show that the patient understood the plan and agreed without coercion.”³

Document the education you assign to your patients. If you don’t document it, it may as well have never happened. Ask your patients to repeat the information back to you and document this as well.

MedBridge offers a number of resources to help with the education and documentation process. The Patient Education Library includes handouts and videos on normal swallow, anatomy, aspiration, and oral care, presented in a patient-friendly way to help you explain these complex topics. Also, MedBridge integrates with several popular electronic medical record systems such as Casamba, Raintree, Nextgen, and Epic, making it simpler for you to document your education and protect yourself and your patients.