Research Tuesday: “Dysphagic Independent Feeders’ Justifications for Noncompliance With Recommendations by a Speech-Language Pathologist”

Can you believe it’s already the second Tuesday of the month?! Where has time gone. We are continuing the SLP Blogger challenge set up by Rachel Wynn over at Talks Just Fine! Which means it is time to share and critique more research. (If you missed last month’s posts, here is a summary of all the articles people reviewed–even if I’m not reviewing something pertinent to your caseload, I’m positive at least one of the other bloggers is!)


Since I just started my new medical SLP position doing acute inpatient care in a hospital, I figured an article about dysphagia would be perfect for me, and hopefully for you, too. Even if you don’t typically work with dysphagia, the article has some implications for noncompliance that I think can be generalized to many settings and populations. I had actually read this a couple years ago in grad school; however, it has taken a whole new importance now that I am working in the field, and it is giving me a lot to ponder.

Article: Colodny, N. (2005). Dysphagic independent feeders’ justifications for noncompliance with recommendations by a speech-language pathologist. American Journal of Speech-Language Pathology, 14, 61-70.

Background: “[Noncompliance is] the best documented and least understood health behavior.” Dysphagia in particular may be specifically traumatic to patients because most of them have never heard of this or could have anticipated it happening to them. The social-cognitive transition model asserts that patients have metacognitive assumptions about themselves, and a diagnosis such as dysphagia does not fit with these ideas, causing patients to have to essentially reconstruct parts of their identities. Denial is a functional first reaction, but can easily become dysfunctional if it prevents learning new coping strategies. Since dysphagia is typically secondary to at least one other disorder (e.g. cancer, stroke), not only are patients forced to readjust their self-perceptions based on the dysphagia diagnosis, but they are also facing other life-altering readjustments as well. Noncompliance with dysphagia recommendations can cause serious problems: in one previous study, 4/5 people admitted to the hospital for aspiration pneumonia/chest infections were noncompliers. In the same previous study, 6/7 people who consciously chose not to follow SLP recommendations died within the next 18 months. And SLPs have been shown to greatly overestimate patient compliance. But there is so much ethical conflict: medical indications vs. patient preference vs. quality of life vs. contextual influences. How do we balance beneficence, nonmaleficence, autonomy, justice, and fidelity?

Purpose: “Examine the various ways in which independent-feeding patients with dysphagia justified their noncompliance with swallowing recommendations suggested by the SLP.”

What They Did: 63 noncompliant, severely dysphagic, independently self-feeding individuals in a large nursing home participated. All had been noncompliant for at least two weeks after the SLP had performed a fiberoptic endoscopic evaluation of swallow (FEES) and had made recommendations. Data was collected via interviews over five years, with all individuals having been determined by their health care team/physician to be legally competent in making their own health care decisions. The author was the SLP for each of these individuals.

During the interview, the SLP asked each individual, “Would you mind telling me why you did not wish to follow the recommendation for [the particular recommendation]?” The individuals’ responses were then broken down into at least one (often two or three) of the following categories: open denial, dissatisfaction with the product (e.g. pureed foods), calculated risk, rationalization, minimization (e.g. downplaying severity), accommodation (e.g. saying they would change actions but not showing intention of doing so), projection (e.g. becoming angry at the SLP), and deflection (e.g. citing a doctor/family member as saying they did not have a swallowing disorder). After the author categorized each individual’s responses, another SLP not otherwise involved in the study rated the individual’s responses to provide a reliability measure.

Results:

1. Quantitative Findings (mean percentage of two SLPs ratings of why individuals were noncompliant): 

  • Denial – 50%
  • Dissatisfaction – 39.7%
  • Calculated risk – 22.2%
  • Rationalization – 21.4%
  • Minimization – 19%
  • Accommodation – 17.5%
  • Projection – 11.1%
  • Deflection – 5.6%

2. Qualitative observations: The study provides excellent quotes and anecdotes representing each of the above areas. Some of my favorites (because I’ve heard them so much):

  • Denial – “I can eat and drink fine.”
  • Dissatisfaction – “Have you tasted that thick stuff. It tastes like crap. I don’t want it.”
  • Calculated risk – “I’ll take my chances. I don’t want that horrible stuff…”
  • Rationalization – “So it [choking] happens once in a while. It’s not uncommon in older people…”
  • Minimization - “I have a problem once in a while, but I’m careful. All old people eat carefully because that’s the way it is. You just have to take your time.”
  • Accommodation – “I do it [drink thickened liquids] as much as I can.”
  • Projection – “I don’t have a problem. You’re the problem, you blind fool. I don’t need your shenanigans.”
  • Deflection – “I’m leaving here soon so I don’t need to listen to you. My son thinks I don’t have any problems swallowing.”

Real Life Applications: The author goes into some excellent discussion about the psychological bases of noncompliance–I’d encourage you to check it out. However, I’d like to focus more on the implications for practice that the author mentions.

1. We need to be more aware of noncompliance, and we need to not take it personally. Noncompliance is not a personal insult.

2. We must view noncompliance as the patient’s way of coping while. We need to find a balance of objectivity and empathy.

3. We must have unconditional positive regard for our patients and also attempt to understand the multiple factors affecting the patient’s noncompliance.

4. Support groups may help with a number of the issues that compound noncompliance.

5. We need to be part of a bigger, interdisciplinary team and know when to refer to mental health experts!

Inserting my thoughts here. I’ll admit, I was a little surprised by the results. I think I expected calculated risk to be a little higher on the list. Only about 1 in 5–that’s not terribly high. This represents a daily struggle for me. I love promoting patient autonomy. All of my training and workplace experience up to this point has centered around an individual’s right to make their own decisions. This attitude (it really is an attitude/life outlook) was really ingrained in me and cemented through my work and education in the developmental disabilities (DD) community. Yet in a hospital, even a good hospital like the one in which I work, this does not appear to be the overwhelming attitude. And it is a struggle to find that ethical balance. Especially since so few patients are reporting noncompliance based on calculated risk. It’s one thing to accept a patient’s decision when the have weighed the risks and benefits and chosen to follow a non-recommended path. It’s another when they do not appear to be making an informed choice. It’s hard to encourage autonomy when a patient does not appear to be considering all the factors, such as in the case of open denial. While this article certainly doesn’t provide all the answers to such ethical dilemmas, it provides excellent information from which to base my future practice. The recommendation to refer to mental health specialists was a good reminder, too.

Suggested Further Research: 

The author provides a number of suggestions, including how family plays a role in noncompliance, the relationship between quality of life and noncompliance, and more. Some related ideas that came to mind…

1. I’d love to see how/if this study would differ if it looked at compliance across SLPs. Could this study have been biased based on the fact that only one SLP’s caseload was observed? For example, maybe other SLPs are better/worse at patient education or building rapport. I wonder if this affects what the noncompliance reasons and percentages. E.g. perhaps another SLP might have fewer cases of minimization but more cases of projection. Or perhaps the numbers would be surprisingly similar across professionals.

2. It would be great to study this in other settings as well. How do noncompliance justifications differ from hospital to LTAC to SNF to home health?

3. What changes are most effective at improving compliance? Education? Rapport? Team approach? Involvement of mental health specialists?

Your Thoughts: So, what do you think?! Do you work with dysphagia? What noncompliant justifications do you see the most? If you don’t work with dysphagia, where do you see noncompliance? Are the reasons similar?

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4 thoughts on “Research Tuesday: “Dysphagic Independent Feeders’ Justifications for Noncompliance With Recommendations by a Speech-Language Pathologist”

  1. I have been so fortunate as an SLP in private practice and hospital setting. When pts come to my practice they are very compliant because they are seeking my services. The most non-compliant justifications I encounter are related to end of life issues. I often hear families say we appreciate your recommendations but we just want to feed him anyway, it becomes a quality of life issue.

    • That’s a really interesting perspective! And I can totally appreciate how end-of-life considerations completely alter patient wishes and level of autonomy. Thanks for the input!

  2. Pingback: Blogging about Research #SLPBloggers July Edition | "Talks Just Fine"

  3. Most of the noncompliance I see is in the aging population or those with progressive illness. I completely understand their decision. I assure patients that my job is to inform them of risks and ways to decrease their risk. Only they can determine how their quality of life will be affected. Great article. It’s good to see that someone has studied this area of growing concern.

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