by Karen Sheffler, MS, CCC-SLP, BCS-S of SwallowStudy.com
Negative Press Detracts from Main Issue:
Decision-Making in Dysphagia
Background: When a person has difficulty swallowing (dysphagia) with high risks for aspiration of thin liquids, one of the most difficult decisions for a Speech-Language Pathologist (SLP) is whether or not the person would benefit from thickened liquids. SLPs who specialize in dysphagia, know that taking away thin liquids can drastically affect the person’s intake and quality of life. However, when the goals of care are aggressive (curative) and seek to minimize risks for aspiration and aspiration pneumonia, the therapist recommends the potentially safest solutions. These may include diet modifications (but of the least restrictive diet possible), thickening liquids, safe feeding and swallowing strategies, postural changes, swallowing maneuvers to minimize aspiration and residue, and ways to decrease pneumonia risks (e.g., improving oral hygiene). Thickening liquids is one tool that can be a quick and easy solution for the short term. Thickened liquids can be especially helpful when a person is critically ill or has decreased cognitive skills. That person may not be able to consistently perform safe swallowing postures or maneuvers (e.g., chin tuck or more complex airway protection maneuvers).
The article that inspired this blog:
Thickened liquids have received negative press recently in a JAMA article by doctors in their residency program. See the citation below. Here is a link to the article: “The Horrible Taste of Nectar and Honey – Inappropriate Use of Thickened Liquids in Dementia: A Teachable Moment.” In this article, Wang, Charlton, and Kohlwes (2016) made excellent points about the importance of a patient-centered and multidisciplinary approach to managing a person’s dysphagia and aspiration risk; however, why is the title so negative? The emotionally charged title detracts from the real issues:
- Sometimes people need thickened liquids
- People with dysphagia need healthcare providers to communicate early and often to assist in good decision-making in dysphagia assessment and management.
I appreciate how the authors covered the potential detrimental effects that thickened liquids can sometimes have on patients’ hydration and quality of life. I am glad that they included the issue of reduced bioavailability of medications when pills are crushed and delivered in a thickened liquid medium, as this is still rarely known by healthcare providers. (Read more: See my blog, Hard Pill to Swallow?, which covers Julie Cichero’s 2013 research on that subject).
Benefits of Thickened Liquids
I discussed this Wang et al. (2016) article with colleagues. Dr Catriona Steele, PhD, S-LP(C), CCC-SLP, BCS-S, Reg. CASLPO, ASHA Fellow, who brought this article to my attention, noted:
The “overall the slant is negative and misses the point that sometimes (appropriately) thickened liquids are of benefit.“
Sometimes a change from thin liquids to thickened liquids is needed as a short-term solution to minimize aspiration during an acute phase of an illness and weakness. For example, too often I have seen a patient’s “COPD exacerbation” persist due to the additional-previously unknown issue of ongoing aspiration with thin liquids. The aspiration may have been occurring silently (without the person even throat clearing or coughing in response to liquid getting down the wrong way). For an immediate treatment, it may be unrealistic to expect a critically ill or confused person, to use a careful small sip and chin tuck every time. Maybe the best short-term solution is careful consumption of a thickened liquid. Then the SLP may recommend a Videofluoroscopic SwallowStudy.com (VFSS) or a Fiberoptic Endoscopic Evaluation of Swallowing (FEES) to determine the safest diet and see if the safe swallow strategies actually work. (Read More about how the chin tuck might actually increase aspiration, and this needs to be tested via instrumental evaluations.)
Wang et al. (2016) warned:
“Thickened liquids have become a part of routine care–some might even argue the standard of care.”(p. 725)
“…diet should involve a comprehensive approach rather than a reflexive diet modification.” (p. 736)
These statements show that SLPs need market their dysphagia services better! The Speech-Language Pathologist’s standard of care is to perform comprehensive examinations of eating and swallowing (far more complex than a nursing swallow screen or a 3-oz water challenge). The SLP’s examination includes critical analysis of the medical record, discussion of the case with related parties, and complex decision-making in dysphagia. We do not want to undermine the effort that the SLP puts into his/her assessment, which includes synthesizing results into impressions, making appropriate referrals (which help direct and focus further diagnostics), and initiating a treatment plan. Our recommendations of the diet, safe-swallow strategies, ways to reduce pneumonia risk, and swallowing exercises are individualized to the patient. They are never routine, reflexive or one-size-fits all. Thickening liquids is only one small tool in our toolbox. See my prior webinar on NutriciaLearningCenter.com, called “Thickened Liquids: One Tool in Our Dysphagia Toolbox.”
One aspect of thickened liquids that the authors did not mention, was that some patients actually prefer the thickened liquid. If a person is grossly aspirating thin liquids, the increased safety of a thickened liquid may be perceived as better, even if he/she is not full aware the swallowing deficits. Thin liquids move fast and can be unpredictable. A liquid of thicker viscosity moves slower, not dropping to the airway before the swallow and not falling into the airway as readily if the swallow is weak.
Commonly, a soft-easy-to-chew diet with thickened liquids for a patient with advanced dementia is much preferable to the alternative of a feeding tube. Distress can sometimes be minimized with strategies, such as a trained caretaker providing one-on-one assistance with a slow feeding rate. Slight diet modifications can avoid the more aggressive option of placement of a feeding tube, which has been found to be contraindicated in people with advanced dementia. (Read more about the feeding tube decision-making process with this blog.)
Wang et al. (2016) commented on the labels of “nectar” and “honey,” saying that they make you think the items are sweet when they really are not. I must mention that these labels are not universal or used internationally. There is a significant risk for misunderstanding when using these labels. Frequently the medical staff forget which is the thicker liquid. Other times, people, and even doctors, think that we are adding real honey to the liquid. Dr Steele warns, especially with “honey” that “the word by itself does not clearly communicate flow characteristics and can lead to confusion.” (See prior blog covering the need for standardization in labels for diets and liquids.)
The field will be moving towards the use of standardized and easily translatable liquid labels created by the International Dysphagia Diet Standardisation Initiative (IDDSI):
- Thin liquid
- Slightly thick (This is a new term for the USA, but this liquid that is thinner than “nectar.” This level has been used in Australia and Japan for years.)
- Mildly thick (aka, nectar thick in the USA)
- Moderately thick (aka, honey thick in the USA)
- Extremely thick (aka, pudding thick in the USA)
The SLP can take an active role in the team’s process of decision-making in dysphagia (as noted in the Law, Polovoy, Hutchins, and Blum 2016 article cited below). The SLP and patient can work together to achieve acceptable solutions. I had one patient who refused “nectar thick,” but accepted a “slightly thickened liquid,” which was shown to be safe and effective for him on his VFSS. Patients may adamantly refuse thickened liquids; therefore, the medical team needs to thoroughly document the education and decision-making process. Document that the patient and/or health care proxy demonstrated understanding of the known risks. Then what happens? It is one thing to witness a person comfortably aspirating silently while feeding himself his chosen thin liquid; it is another to have to assist a person who is a dependent feeder and every liquid swallow sounds like water-boarding! These are not easy decisions or solutions.
Avoid Over-Simplification in Decision-Making in Dysphagia
The article described a 90-year-old with advanced dementia, and stated: “because of her dementia, she was started on honey-thickened liquids for aspiration prevention” (Wang et al., 2016, p. 735). This overly simplified statement may be the crux of the problem with that case.
We cannot say that dementia=honey-thick liquid. We cannot say that aspiration=pneumonia. (See prior blog regarding aspiration pneumonia).
I appreciate how the authors addressed many of the following questions that I had:
- Was the patient placed on honey-thick liquid based on an instrumental assessment, like a videofluoroscopic swallow study (VFSS)?
- Would a videofluoroscopic swallow study even accurately tell the whole story?
- Did they consider that honey-thick liquids have not been found to be the best for aspiration pneumonia prevention?
- Was the treatment plan too aggressive, trying to prevent aspiration while risking dehydration and poor quality of life?
- Could they have addressed aspiration pneumonia prevention via other means, such as improved oral hygiene and mobilization?
- Did they consider palliative care options and initiate a conversation about palliative care early on in her dementia management?
- It is not advisable to begin these complex goals of care discussions within acute care when the patient is critically ill and the family is stressed.
- The conversations should be started by the primary care physician early on in the disease process.
Need for Improved Decision-Making in Dysphagia
Dr Steele pointed out that this “negative” press about thickened liquids further shows how all healthcare professionals need to have “constructive discussions with their physician colleagues.” Additionally, healthcare professionals need to use patient-centered communication when discussing the risks and benefits of any decision-making in dysphagia.
Optimal care requires evidence-based practice along with shared decision-making, which includes the patient’s values and preferences (Hoffman, Montori, & Del Mar, 2014). When swallowing becomes significantly impaired and meeting needs orally becomes a challenge, the SLP and medical team educate and counsel the patient and health care proxy (when applicable). The risks and benefits of all possible options are discussed, from the most aggressive to more comfort and quality of life based approaches. In other words, treatments are discussed as a spectrum from curative to palliative approaches. Keep in mind, we may not be able to cure the underlining issues that caused the dysphagia and aspiration risk. We cannot prevent aspiration completely. We may be faced with having a conversation about which option would be the least bad in relation to the patient’s goals of care.
When these discussions do not happen, the SLP may feel pressure to recommend a very restrictive diet, especially if the patient is full-code (doing everything necessary to prolong life, including resuscitation and intubation).
Overall, when patients and families are facing difficult decisions, we do not want to belittle the complexity or make them feel wrong for choosing an approach that includes a thickened liquid. Calling one option “horrible,” gives a faulty and biased slant that is not beneficial to open communication and constructive decision-making.
The main point of the article was likely to emphasize: “less is more,” especially in patients with advanced dementia. However, this phrase in small print got lost on the front page above the word “horrible.” When addressing severe dysphagia in people with advanced dementia, the concept of “less is more” is frequently used. Read More: The Conversation & the SLP Role in Palliative Care.
Raise Dysphagia Awareness
The authors mentioned the thickened-liquid challenge. The purpose of this challenge was not simply to film the grimaces on the faces of professionals drinking thickened liquids. It was not to comment on the taste. It was to raise awareness of the emotional and physical challenges that many people go through on a daily basis in order to safely consume enough liquids. (See prior blog on #DysphagiaAwareness.)
Per the National Foundation of Swallowing Disorders (NFOSD), the #ThickenedLiquidChallenge was started to:
- Increase swallowing disorder awareness,
- Demonstrate patient unity with the millions of Americans who consume thickened liquids daily due to swallowing disorders, and
- Provide education about the types of thickeners available (See Products: Thickened Liquids on this website regarding types of thickeners).
Conclusions and Calls to Action:
- SLPs need to market their dysphagia services better. We do not reflexively put people on thickened liquids. SLPs are not the bad guys who like to thicken liquids or make people Nil Per Os (NPO or nothing by mouth).
- SLPs use patient-centered communication. SLPs discuss findings with the patient, caregivers, and medical team and pose recommendations as a spectrum of options from curative to palliative.
- SLPs advocate for instrumental testing, when appropriate, to place people on the least restrictive diet and make sure that safe swallow strategies actually work. How risky are thin liquids? Does thickening the liquid work? SLPs further advocate for repeat testing, in order to return patients to thin liquids as quickly as possible after an acute illness or weakness has resolved.
- The medical team, starting with the person’s primary care physician, needs to have discussions early on in the person’s degenerative disease regarding goals of care when eating and drinking becomes difficult.
- The medical team needs to have in-depth and sit-down conversations with the patient and health care proxy (when applicable). The team should involve the Palliative Care service to help delineate the patient’s goals of care, as these conversations can be complex and lengthy. Is it in the patient’s goals of care to prevent aspiration and aspiration pneumonia at all costs? Would small changes make a big difference in the person’s quality of life (e.g., water between meals or having ice cream)?
I hope this blog contributes to the teachable moments started by Wang, Charlton, and Kohlwes (2016). Please continue the discussion.
Wang, C., Charlton, B. & Kohlwes, J. (2016). The Horrible Taste of Nectar and Honey—Inappropriate Use of Thickened Liquids in Dementia: A Teachable Moment. JAMA Intern Med., 176 (6), 735-736. doi:10.1001/jamainternmed.2016.1384.
Hoffmann, T.C., Montori, V.M., & Del Mar, C. (2014). The Connection Between Evidence-Based Medicine and Shared Decision Making. JAMA, 312 (13), 1295-1296. doi:10.1001/jama.2014.10186.
Waters, S. O. & Sullivan, P. A. (2012). An Approach to Guiding and Supporting Decision-Making for Individuals With Dementia: Feeding, Swallowing, and Nutrition Considerations. Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 21 (3), 105-111. doi: 10.1044/sasd21.3.105.
Debate this issue more at the ASHA Convention 2016 in Philadelphia. See the section called: Are We Over-Modifying Diets? in this article: