In a recent online chat, Nicole Rogus-Pulia shared how to work with patients, families and dietitians to create safe diets for older patients with dysphagia.
Participant: If a participant was to remember or put into practice only one idea from your session, what would that one key takeaway be?
Nicole Rogus-Pulia: The key message is that our diet recommendations need to consider more than just the safest consistency observed on the snapshot of our videofluoroscopic swallow study, but also patient-specific health and also contextual factors, such as caregiver support and goals/preferences for care. It is important to weigh these decisions in light of potential effects on quality of life. It truly is a balancing act, and we have to keep all of these factors in mind when making our recommendations.
Participant: Regarding pill dysphagia, what is “orally disintegrating technology”?
Rogus-Pulia: Orally disintegrating technology refers to pills that will dissolve inside the mouth. They start out whole and, once placed in the oral cavity, dissolve and are absorbed through the cheek for rapid systemic distribution. This avoids the need to ask patients to swallow the pill whole or to crush pills, which can affect the action of the medication or cause serious side effects in some cases. There are some medications that have been made available in this form. An example would be Ondansetron, or Zofran, which is taken commonly for nausea symptoms. But there is a definite need for more meds to be made available in this form
Participant: For those working in home health care settings and who do not have access to dietitians, how can SLPs provide nutrition resources to patients and families?
Rogus-Pulia: The best option would be to create a handout for patients that includes ways to enhance the nutritional content of modified foods. You can work with a local dietitian to develop this or use various resources available via books or the web. There are some excellent books that provide some guidance as to how to modify foods, increase nutritional content and also consider the palatability of foods. Some of these books are also recipe books for patients, which can be very helpful. It is obviously ideal to provide nutrition consultation specific to an individual patient’s needs, but there are strategies that apply across patients that can be shared.
Participant: What is the best way to address patients/family members who do not wish to adhere to a recommended diet even with presentation of MBSS (modified barium swallow study) results and education?
Rogus-Pulia: The first step is to make sure that the patient and the family truly understand the impact of dysphagia on overall health. In recent years, some well-designed studies have shown dysphagia to be an independent predictor of malnutrition, pneumonia, increased length of [hospital] stay, decreased rehabilitation potential and mortality. I think sometimes we hesitate to make those connections for patients.
If, even after making these potential consequences of non-adherence clear to patients and families, they still choose not to follow these recommendations, it is important to respect that decision as these modifications may not be consistent with goals of care at that time for the patient/family. I think we can advise the patient/family on the safest consistencies and most effective strategies in the context of a known risk for aspiration.
We can also discuss some of the other factors that contribute to malnutrition and pneumonia, such as oral health and physical independence. These factors may decrease the risk for adverse health outcomes in light of non-adherence to dietary recommendations. I think as SLPs we have a lot to offer beyond the results of the MBSS and can guide patients in ways that minimize risk, even if the choice is to continue with a diet that may not be the safest choice.
Participant: Do you have information on utensils, cups or straws that could make it easier for say, a person with Parkinson’s, to feel like they can eat independently during meals?
Rogus-Pulia: Dependence for oral feeding is a risk factor for aspiration pneumonia in older adults. Being able to control the pace of eating and the bolus size is huge. When caregivers feeding patients do not use strategies that encourage independence, the safety of the swallow is affected. Anticipation of the bolus primes our neurologic system in a way that prepares us to swallow safely. Without control over eating, it is difficult to anticipate the bolus that is about to enter our mouth and the timing of that. In terms of specific utensils available, this is unfortunately not my specific area of expertise, but I have found the occupational therapists at our facility to be very helpful in recommending utensils that can be extended or shaped in a way that is easier for the patient to hold and manipulate.
Also, there are certain types of cups, such as the Provale cup, that can actually modulate the volume of a sip for the patient. This volume can be set in advance. This avoids large sips and sequential drinking if that is a safety issue for the patient.
There are also plates and utensils developed specifically for the dementia population, which may apply to patients with Parkinson’s as well, that organize the food presentation and are colored in ways that have been shown to increase oral intake. These are all great options to encourage independence.
Participant: If pharyngeal musculature is strengthened and the patient’s liquid viscosity is changed to thin from thickened, is there danger of aspiration to recur shortly after (one to six months later)?
Rogus-Pulia: I think this question is asking about maintenance of strength gains following completion of exercise-based therapy. It is true that strength will decline over time if the exercise is discontinued. Unfortunately, the most effective maintenance protocols for various exercises to maintain these gains in strength are unknown. It is absolutely possible that aspiration can recur if strength gains are not maintained.
If the strength training approach has been effective in improving muscle function during swallowing, then decline in strength can result in the same biomechanical impairments in the swallow that were present prior to the exercise-based approach. This is why follow-up that includes instrumental evaluation is so critical for patients. If we have success in rehabilitating the swallow with muscle-strengthening approaches, then we need to have a maintenance protocol in place following completion of therapy to ensure those strength gains last, and also follow-up to re-assess the patient with more time post-treatment.
Participant: I am curious about the Heine 1995 research that discussed the risks of tube feeding. What is the percent of higher incidence of GERD (gastroesphogeal reflux disease) with tube feeding versus oral feeding?
Rogus-Pulia: I agree this Heine 1995 study focused on children with neurological impairment is of particular interest. We need additional large studies to compare the effects of tube feeding on outcomes of interest in various populations, including older adults. GERD is often greater in patients who are tube-fed due to decreased pressure at the lower esophageal sphincter caused by the food being delivered directly into the stomach or jejunum. If the rate of gastric infusion during feeding is not right, this can increase the chances of material moving up into the esophagus and many times through the UES (upper esophageal sphincter). This frequently leads to aspiration of the gastric contents, which negates the benefits of tube feeding over oral intake if the goal of non-oral feeding was to avoid aspiration.
It could be that aspiration pneumonitis that results from aspiration of acidic gastric contents is more dangerous to respiratory health than chronic smaller-volume aspirations from the oral cavity. This study highlights that, beyond the detrimental effects of tube feeding on quality of life, there could be detrimental effects from non-oral feeding on the health of our patients. This is obviously not the case for all patients, so each individual case needs to be considered, but these studies comparing outcomes are important to consider.
Participant: When using the IDDSI (International Dysphagia Diet Standardization Initiative), are there at least two numbers included in a diet order: one for foods and one for liquids? Are dietary departments fully onboard?
Rogus-Pulia: My understanding of IDDSI is that, yes, there would need to be two numbers, one for liquids and one for solids, included in the diet order. At my facility and others in our vicinity, there has been a positive response to this initiative. There is a lot of frustration from dietitians over the confusing terminology used to describe modified diets. My experience is that standardization is greatly appreciated from my dietitian colleagues. It would also be worth reaching out to the IDDSI group to discuss implementation strategies for the framework. I know this is something they are working through, and I am sure they would be happy to help. I did want to add one thing about the IDDSI framework: There may be situations where the liquid and food consistency would be the same, such as level 3 (moderately thick for liquids and liquidized for solids) or level 4 (extremely thick for liquids and pureed for solids). In these cases, patients may only be able to handle one consistency, in which case the same number would be applied to liquids and solids on the diet order.
Participant: What is the best way to handle the situation when patient/family don’t wish to continue with modified diet texture/consistency even if they understand the risks?
Rogus-Pulia: I think if patients and their families truly understand the risks but still decide not to modify the diet, we need to respect that. But I do not think that means we put our hands up and say, “Well, I made my recommendations and that’s it.” I think we need to have an in-depth conversation with the patient/family about which modifications seem to be the most difficult. It may be that patients are willing to modify certain aspects of foods or fluids and not others. I think it is really important to understand where our patients are coming from and to truly listen to them empathetically.
Then, once we understand the issues, can we recommend strategies that might optimize swallow safety even with a food/fluid consistency that is not ideal? Are there eating strategies that can be employed? Caregiver education about approach to feeding? Other aspects of health that can be maximized to decrease the risk of adverse health consequences? As I mentioned before, oral health and cleaning the mouth thoroughly prior to oral intake is important. The idea is finding a compromise for patients where we can maximize safety but find modifications that are manageable and acceptable to the patient/family. We have to find a way to work together to consider how our recommendations are aligning with the patient’s wishes and find a middle ground.
Participant: Could you discuss the benefits/risks of short-term use of thickened liquids in the acute-care setting?
Rogus-Pulia: Recommending thickened liquids for patients who are acutely ill in order to optimize swallowing safety is appropriate in many cases. The key is being sure to reassess. One issue that I have come up against is that many stroke patients will be dysphagic immediately following the stroke event but then will improve with time for spontaneous recovery. Yet they end up being discharged still on thickened fluids without a clear follow-up or a plan for reevaluation after discharge.
Given that patients in acute care evolve so quickly, it is important to follow them for tolerance of recommended diets and to ensure that there is a plan in place post-discharge. Many patients in acute care are also suffering from cognitive issues or delirium that, in many cases, is specific to their hospital admission. This can make it difficult to use postural strategies or maneuvers. It seems to me that thickening liquids as a short-term solution in these cases makes sense.
Of course there is also concern over dehydration for those patients who do not adhere to the recommendations. And in these cases, close follow-up is key so that we are aware whether non-adherence is an issue. Close contact with nursing staff can be very helpful. We also often do not have the time necessary in acute care to begin swallow therapy but, if this is possible, I think it is key in motivating patients. If I explain that the thickened liquid recommendation is temporary and that we are going to work to rehabilitate the swallow, patients are often more willing to tolerate thickened liquids for a short period of time. The use of thickened liquids can be very helpful in acute care when we need to optimize swallow safety on a temporary basis through fluid modification, but should not be avoided as a long-term solution. We do need more studies to look at this, however.
Participant: Would you agree that it is prudent to consider cost of needs, especially when special equipment is required that a patient doesn’t have in home—such as a blender—and discuss with the patient?
Rogus-Pulia: Yes, I completely agree with this point. We often do not consider the resources that are available to our patients. I know that I often take for granted that everyone has access to a blender, for example. This absolutely may not be the case. And it may also be that patients do not have adequate support at home to implement these modifications. Even when a caregiver is involved, it is often not clear how these modifications can be implemented while also optimizing nutritional content. I think patient and caregiver education is key. But back again to the need for in-depth discussions with patients so that we can understand the specifics of their situations and the barriers that they perceive to implementing these changes, and address their questions. We often assume that patient non-adherence to recommendations is a patient’s choice, but there may be circumstances where it is not a choice at all. I think if we understand the entire situation, we can work within the confines of that situation to make the safest recommendations.
Participant: Do you have a resource for “dissolvable solids” besides potato chips and other empty-calorie foods?
Rogus-Pulia: The “transitional foods” section of the IDDSI framework has other examples of these types of foods. The point in mentioning potato chips and other snacks is that many of our patients are non-adherent to recommendations because they crave these types of “crunchy” foods. If there is an option for them to consume these foods safely within moderation, it may help to boost adherence. However, I agree that other healthier options that fall into this category are important.
Participant: Is there a way to encourage our older population to decrease self-limiting behaviors of fluid intake while on a thickened diet to avoid dehydration?
Rogus-Pulia: It will be important to identify those fluids that patients enjoy the most and would have the greatest motivation to consume. Many patients find certain thickened fluids more palatable than other options. Capitalizing on what is the most palatable to the patient will help to encourage more fluid intake. I know for many of our patients, that is water. I do think it is reasonable to consider an approach for our older medically stable patients where we recommend thorough oral care followed by intake of small amounts of water. This can be done between meals to encourage more fluid intake and to satisfy that need for our patients, although this approach does require further study. I think finding out which types of fluids are the most palatable when thickened to the individual patient and encouraging those will help.
Nicole Rogus-Pulia, PhD, CCC-SLP, is an assistant professor in the Department of Medicine, Division of Geriatrics and Gerontology, at the University of Wisconsin-Madison, and in the Geriatric Research Education and Clinical Center at the William S. Middleton Memorial Veterans Hospital. firstname.lastname@example.org