Eating and Drinking with Acknowledged Risk
Living with dysphagia long-term can be frustrating and challenging. No-one really enjoys the way a thickened beverage tastes, and for many, the choice to eat and drink as they please is a way to remain in control and prioritise quality of life.
It’s understandable that an individual with dysphagia would wish to explore their options, and Speech Pathologists can provide helpful education on what eating and drinking with acknowledged risk (EDAR) can look like.
If EDAR is something you’re interested in exploring, we’d like to help. Our friendly Speech Pathologists at Speak and Swallow support individuals living with dysphagia in North Brisbane. As many of our clients live with dysphagia long-term, facing progressive conditions like Parkinson’s Disease and fluctuating conditions like MS, we have a lot of experience in supporting individuals and their care teams with the shared decision making involved in EDAR.
Keep on reading to find out more about what EDAR is, why you may choose to consider it, and how to get started on your EDAR journey.
What is Dysphagia
Dysphagia is a professional term used to describe swallowing difficulties. It’s important to note that dysphagia is not a disease within itself – it is actually a symptom typically associated with other conditions.
Swallowing difficulties are typically either caused by changes in the brain’s function due to a brain injury, like a stroke, or a progressive neurological condition like Parkinson’s disease. Some people may also experience what is known as mechanical dysphagia, meaning something in their anatomy is impacting their ability to eat and drink safely.
What is Eating and Drinking with Acknowledged Risk
Eating and Drinking with Acknowledged Risk (EDAR) is something you might hear brought up by a Speech Pathologist or health professional when discussing your dysphagia journey.
If you’ve been recommended a highly modified diet, or have been experiencing dysphagia long-term, you may have expressed the desire to continue eating and drinking your preferred diet. While this is certainly an option, and one that a trusted Speech Pathologist can support you through, there are risks associated with not following recommendations made based on your current swallowing function including aspiration (food going down the wrong way) and choking.
Eating and drinking with acknowledged risk describes situations where a person makes an informed decision to continue oral intake that has been deemed unsafe by the treating Speech Pathologist and/or medical team. Ideally, the person with dysphagia will engage in a thorough shared decision-making discussion. This stakeholder-style meeting involves explicit discussion of the potential swallowing related health complications of EDAR, whilst accepting the risk of swallowing related health complications which may be associated with this decision.
Who is Risk Feeding Appropriate For?
Risk feeding (another term for EDAR) is often chosen because quality of life, comfort, or pleasure from eating is prioritized over the risks of aspiration, choking, or malnutrition, common in conditions like advanced dementia, stroke, or neurological disorders. It’s a shared decision made with healthcare teams (Speech Pathologists, doctors, dietitians) for those who can’t swallow safely but still want to enjoy food and drink.
Why Some Individuals with Dysphagia Choose to Pursue EDAR
There are many reasons why an individual living with dysphagia, and their support team may wish to discuss eating and drinking with acknowledged risk. One of the most common motivators is the negative impact that dysphagia can have on quality of life and how EDAR can actually help people to improve their day to day lives.
A Speech Pathologist’s main intention in assessing, monitoring, and managing a patient’s swallowing difficulties is to ensure a person’s safety and wellbeing at mealtimes. However, as we’re sure you can appreciate, eating and drinking plays a much bigger role in our lives than simply allowing us to safely maintain our nutrition and hydration requirements!
For example: Socialising with others often involves sharing a meal or a drink (think: Christmas dinner, birthday cake, catching up with a friend for coffee). For a lot of people, food is a source of joy as well – we all have a favourite meal, snack, or drink, don’t we?
Here is a brief overview of some of the ways EDAR can improve quality of life for individuals living with dysphagia:
- Ceasing modified diet/fluids due to dislike of the flavours/textures
- Improved enjoyment with preferred foods
- Able to engage in socially important activities
- Improved comfort at mealtimes
- Cultural and religious considerations
- Removes added complexity of implementing modified diet and fluids
How to Get Started with EDAR
If you or someone you care for has expressed interest in continuing to eat and drink as normal despite clinically identified swallowing difficulties, an EDAR conversation should be arranged with your treating speech pathologist. This conversation should focus on shared decision making, and a meaningful discussion of the risks involved, strategies to support the individual living with dysphagia as they put this decision into practice, and when the EDAR plan should be reviewed.
It’s essential that individuals living with dysphagia are given the dignity of being able to take a risk.
What is an EDAR Plan?
An EDAR plan is a formalised document, usually prepared and updated by a Speech Pathologist, in collaboration with a multi-disciplinary team. This team generally involves dietitians, medical practitioners, the individual with dysphagia and their family/support team.
An EDAR plan supports people who wish to eat and drink in ways that may pose health risks and generally includes:
- documented evidence of informed consent
- individualised risk mitigation strategies
- actions to take such as first aid should there be an adverse event
If you would like to begin the formal process of documenting your decision to eat and drink with acknowledged risk or would like to find a Speech Pathologist to support you in your journey, reach out to the friendly team at Speak and Swallow Speech Therapy.