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Resident’s choice and control: A difficult diagnosis to swallow

Dysphagia can be an overwhelming and devastating diagnosis for many people living with the condition, as well as their family and close others. Eating and drinking is a large part of our everyday lives as humans, and not just for the sake of survival and keeping us alive! For many, eating and drinking is a cultural, sensory and social experience that brings people together.

Now, we know there will be many articles out there today raising awareness about dysphagia, swallowing disorders, and providing information to the general public on what Speech Pathologists can do to support anyone living with this condition. All of this is a fantastic way to provide information and awareness around dysphagia. And to keep our everyday Australians safe from the consequences of poorly managed swallowing disorders, such as choking or aspiration pneumonia. At OSCAR Care Group, we too have provided previous articles that outline what dysphagia is, what to look out (see: dysphagia checklist) and how we can help.

Today we want to speak on the other side of dysphagia management – perhaps the less spoken about or commonly known aspects to the everyday person. We are talking choice and control, acknowledgement of risk, and quality of life when living with dysphagia. Yes, this means perhaps eating bread and toast despite the clinical recommendations and risks. But before you panic, let’s explore this process by unpacking Betty’s story.

Meet Betty

Betty is an 82-year-old female living in residential aged care. 5 years ago, Betty was diagnosed with dementia. As her condition has progressed, more recently nursing staff in her residential aged care facility started to notice Betty wasn’t chewing her food well anymore. She was also coughing when eating and drinking. Nursing staff made a referral to the Speech Pathologist for a swallowing assessment.

Betty’s husband Ron attended the consultation with the Speech Pathologist to discuss how Betty’s swallowing is going. The Speech Pathologist explained that Betty is coughing, and almost choking on “regular” foods such as bread, biscuits and meat. Due to Betty’s dementia, unfortunately it is unlikely that this will improve. Based on the assessment findings, the Speech Pathologist recommended a “minced and moist diet” and “mildly thickened fluids” for Betty. Ron understood Betty’s risks of potentially choking on these foods, and initially accepted the clinical recommendations.

2-weeks later

Ron and the facility contacted the Speech Pathologist as Betty was refusing meals and stating that she does not like “the texture.” Betty only wants to eat Ron’s famous ham and cheese toasted sandwiches for lunch and regular, unmodified foods. As a result of the mealtime refusal, Betty was already losing weight, and not getting the nutrients that she needed from her diet. Ron was very upset by this, and asked Betty to be put back on “normal foods.” Ron explained that it was their family tradition for 50 years to eat ham and cheese toasted sandwiches for lunch every day.

what happens in this situation?

We have Betty, who is clinically at risk due to her progressing swallowing difficulties of choking or potentially aspirating on the bread. However, we also have the same Betty, who is losing weight, refusing meals, and is very upset about missing out on her family’s traditional meal. Furthermore, Ron is also devastated by the modified diet and says he “just cannot come to terms with this”, wanting Betty to have choice over her meals.

Let’s talk about resident’s choice and control

We understand as clinical Speech Pathologists that Betty is physically at risk of choking or aspirating on regular foods. However, it is evident that her quality of life and mental health is largely impacted by the modified diet. Furthermore, Ron’s mental health was declining and his stress levels increasing over this situation. Additionally, Betty’s weight loss was putting her at risk of malnutrition. The clinical recommendation of a Speech Pathologist should be more than just the immediate risks of choking or aspiration.

OSCAR Care Group clinicians align with the current standards promoting resident’s choice. Residents like Betty, and their close others, in this case Ron, should have the right to choose and be allowed control over decisions around eating and drinking. Of course, there are processes that need to occur for this to be put in place safely and ethically, however that shouldn’t deter us from following through if chosen by the resident or family!

The Speech Pathologist, Ron, Betty and the clinical care coordinator of the facility had a care team meeting to discuss Betty’s options around eating and drinking. An acknowledgement of risk form was completed by the team that outlined

  • the nature of the swallowing difficulty,

  • the clinical recommendation (minced and moist diet),

  • the barriers to implementing this recommendation (social isolation, poor quality of life, mental health decline, mealtime refusal, weight loss and malnutrition), and

  • what foods Betty would like to eat (toasted sandwiches).

For Betty and Ron, the risks of poorer quality of life and increased stressed outweighed their concerns for her choking or aspirating on regular foods. By completing this process and form with the relevant care team, Betty and Ron were able to acknowledge her risks of choking or aspirating, but continue to eat her toasted sandwiches every day.

Betty became more calm, and was able to return to her stable weight and nutritional status after resuming on a regular diet. Ron was able to visit most days and the two enjoyed their toasted sandwiches together. Ron and facility staff were trained by the Speech Pathologist on other strategies to help assist Betty with swallowing more safely, such as encouraging her to eat small mouthfuls at a time, cutting up the sandwich, and having a break during the meal if Betty is struggling to swallow. Despite not being on a modified diet any longer, Ron was happy that him and Betty still had other strategies they could implement to support her to eat and drink more safely and minimise risks.

What can we take from this story of Betty and Ron?

  • Sometimes, the clinical recommendations for a modified food texture or fluid consistency can be “a difficult diagnosis to swallow” for many patients and their families.

  • Food and fluid texture modifications absolutely have their place in managing swallowing disorders. They can minimise the risk of choking and aspirating on particular foods for patients who are experiencing dysphagia.

  • However, for some, it causes social isolation, poorer quality of life, mealtime refusal and consequently weight loss or malnutrition risks.

  • It is crucial that the Speech Pathologist considers all aspects of the individual and their family such as cultural, social, mental and physical when making clinical recommendations around food and fluid texture modifications.

  • There are other safe swallowing strategies that can still be implemented for the patient and their family if they choose to eat with an acknowledged risk. A Speech Pathologist can help train these individuals on these strategies.

  • We empower all facilities and service providers to have an acknowledgement of risk policy around patients’ rights to eating and drinking with acknowledged risk, to minimise the impact that dysphagia might have on the person and their family.

Our Speech Pathologists are here to help with dysphagia

At OSCAR Care Group, we know that our residents and clients deserve the best care. We’re happy to educate you and your family on dysphagia and empower you to make a decision that considers all aspects of the individual.

We regularly hold IDDSI training both face-to-face from our Mount Waverley (VIC) office or virtually via Teams. These sessions include in-depth information and are taught live by our qualified Speech Pathologists. Ideal for family members as well all Aged Care Staff.

If you or your family are experiencing swallowing difficulties, or any concerns around choice and control with eating and drinking, please contact our Speech Pathology team today.

Aged Care homes: send your referrals to speechpathology@oscarcaregroup.com.au

For private appointments for a loved one, call us on (03) 9560 1844 or email to clinic@oscarcaregroup.com.au


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