Eating and Drinking with Acknowledged Risk, also known as EDAR, is a rebrand within the Speech Pathology field of the previously used term “risk feeding.” Recently, there has been much dialogue within the community that suggested the word “risk” and also the word “feeding” had negative connotations and didn’t accurately reflect either the process of eating and drinking nor the dignity involved in making an informed decision about your own care.
Both terms refer to the decision that a person will consume foods and drinks that are not in line with the recommendations of the Speech Pathologist after being clinically assessed. This description actually falls across a range of different contexts and different parts of the continuum of care. This means that when a person considers EDAR, the discussions and decision making process will be different in every situation and should be tailored to suit the individual and their picture.
Regardless of the clinical situation a person finds themselves in, Speech Pathology continues to have a role in supporting people to EDAR. Of course, this begins with thorough discussion, and the responsibility of providing adequate information so that the person can understand the potential gravity of the decision they are making falls partly to the Speech Pathologist. Interestingly though, the discussion also involves mitigation of risk and facilitation to eat and drink as comfortably as possible.
So what are the risks? What puts the original “risk” in “eating and drinking with acknowledged risk”? As we know, dysphagia can present itself in many different ways which means that people can be recommended modified foods and drinks for many different reasons. More often than not, however, we are trying to reduce the “risk” of food and drink going into the airway.
So what happens if food and drink goes into the airway? We clear our throat, we cough, or in the most unfortunate of circumstances, we choke. It can be both risky and distressing. Further to that, if we are not successful in ejecting these materials from our airway and they make their way into the lungs, then we run the risk of an infection, also known as aspiration pneumonia.
For some, that looks like a spike in temperature, a trip to the GP, a course of antibiotics and on with their lives they go. However, in an older, immunosuppressed or deconditioned person that can look like a lengthy hospital admission with a domino effect of other health issues. In the worst of circumstances, the domino effects can result in mortality.
When a person chooses to EDAR, it is important that a medical professional is involved in that discussion or supports that discussion so that the person has sound understanding of the medical risks or “domino effects” that can be involved. It’s also an opportunity to discuss things like antibiotic resistance, in the case of recurrent chest infections, and a care plan or directive in the event that a person does present with an aspiration pneumonia.
Part of the Speech Pathologist’s role is also to find ways to mitigate risk and maximise comfort when a person chooses to EDAR. This can be in the form of safe swallow strategies such as eating and drinking slowly, small mouthfuls at a time, extra swallows and washing things down with a sip of drink. EDAR doesn’t necessarily mean eating a regular diet and drinking thin fluids so mitigating risk can include various modified foods and drinks, especially when promoting comfort. This is often the case when a person is placed “nil by mouth” or not safe to eat and drink anything orally but that’s a conversation for another day.
When a person is in acute care, it’s because they are medically unstable and so, arguably, in a lot of cases EDAR can be on the higher end of risky at this time as the body and its health is already compromised. It means that a person could lack the general strength and immunity to avoid and/or overcome aspiration events and potential pneumonias, or recover from choking incidents. In some cases, people placed on modifications during the acute period can be quite temporary and so it’s important to consider that adhering to Speech Pathology recommendations for this period of time just might pay off in the long run.
When a person is managing dysphagia over the long term, we refer to this as a “chronic” condition and therefore unlikely to resolve or fluctuate. It’s in these circumstances that the psychosocial effects of living with dysphagia come into play and must be weighed up with the severity, the impact and the potential health risks associated with EDAR. In this space, there is more flexibility and greater capacity to problem solve EDAR as it often occurs in the community and at home. However, when a person is not in hospital and surrounded by healthcare professionals, it means that they must be their own safety net for any adverse events such as choking, aspiration or pneumonia, and rely on community based services such as their GP or community Speech Pathologist to manage any concerns they may have over the long term.
Before I go into this next context, I would like to clarify that when a person moves into palliative care it does not mean that they are necessarily dying. It’s a common misconception although end of life care is also considered a part of or stage of palliative care. Palliative care simply means that the goals of care change to prioritise quality of life in the context of a disease or condition that is not curable and terminal. So, when a person lives with dysphagia in this stage of care, EDAR is common if the impact of diet and fluid modifications are significant enough to interrupt or hinder quality of life. This is where mitigation of risk is notably important because life can still be prolonged in this stage and should be facilitated as much as possible.
When a person is for end of life care, a later stage of palliation, then they are soon expected to pass away and comfort becomes as much of a priority as quality of life. This means that regular diet and thin fluids may not be the most comfortable option, especially if pain is involved or if protecting the airway is distressing and effortful. This is also a time where problem solving ways to comfortably enjoy favourite drinks and meals can be so important and mealtime shared with family and/or close friends, so meaningful. Creativity in the kitchen in this phase can yield some of the most heartwarming and satisfying results for the person and those close to them.
People have all different reasons for choosing to EDAR. It’s important to remember that each case is different and no person’s circumstances or motivations are more important than the next. A key responsibility and role of the Speech Pathologist is to outline the risks involved and options available to the person both in general and specific to their situation, however, EDAR is best addressed as a team with other disciplines such as medical and dietetics weighing in on the broader picture. EDAR is such an important area of care and an evolving space that should be considered earnestly by all involved but when done right can be most empowering and truly optimise a person’s quality of life.
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