Living with Dysphagia Long Term
For some people, living with dysphagia becomes a life-long arrangement. When this is the case, there are many complex considerations to have that often blur the line between safety and quality of life. Below are some pertinent topics that arise as dysphagia becomes chronic. These topics are explained briefly and plainly and it is encouraged to broach them with a medical professional or speech pathologist if they are relevant to you as considerations are more unique than ever to the individual.
Quality of Life
The term quality of life refers to a person’s overall health, happiness and comfort based on the individual’s context, culture and values. This is particularly important as each person’s context, culture and values are different and how a person views their position amongst these factors in their life is entirely subjective and their own. This relates to dysphagia because of the ways in which the condition impacts those factors and a person’s perception of self and their life.
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When a person is recommended modified diets and/or fluids to safely manage dysphagia symptoms and adverse outcomes such as choking, aspiration pneumonia and mortality, it can have a significant impact on the factors described above. When the risk of adverse outcomes is outweighed by the impact of diet and fluid recommendations, the person is often faced with a quandary related to their (or their loved one’s) quality of life. An important distinction to note is that it is one thing to survive and another to live with a good quality of life.
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In these cases, it is the role of the speech pathologist, medical team and sometimes the wider healthcare team to support quality of life decisions by helping to find the balance between maintaining happiness, comfort, and where possible, health while simultaneously mitigating risk. This is known as “Eating and Drinking with Acknowledged Risk” (EDAR) or “Risk Feeding”.
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An important consideration in quality of life decision making is that “normal” food and drink is not necessarily the most comfortable option depending on the person’s physical condition and preference.
Eating and Drinking with Acknowledged Risk (EDAR)
Eating and drinking with acknowledged risk (EDAR) is the most recent phrase used to describe the situation of a person eating and drinking foods that are not per the recommendations for safety in the setting of a dysphagia. In the clinical setting, EDAR has formally been known as Risk Feeding and is often still referred to by this term.
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It is easy to assume that if a person is EDAR, then they are simply eating normal foods and drinking normal drinks or “whatever they want” however things are not always as they seem. In complex cases, EDAR may entail a person eating and drinking modified diets and fluids because even the modified substances pose a risk to their health and safety. This is not uncommon when people are deemed safest “nil by mouth”- not eating or drinking anything at all and receiving nutrition via feeding tubes- or during the palliative or end of life care process.
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Part of the process to EDAR is education with the speech pathologist and medical team clearly outlining the risks associated with making this decision, even if it is for quality of life measures. This can include the obvious such as choking, aspiration, pneumonia and, in the most severe cases, mortality. It also includes some less obvious considerations such as the impact on comorbidities or other concurrent health conditions, admissions or readmissions to hospital and antibiotic resistance from recurrent chest infections. These are discussions completed with the medical team or GP who can consider such medical implications and the wider, longer term picture of health. It is also wise to discuss potential future treatment plans in the case that the person presents with associated adverse outcomes or presents to the GP or the hospital for medical intervention.
Mental and Emotional Impact
There are many long term effects associated with dysphagia that are not physical at all. In fact, sometimes the psychosocial factors impact the person more than the physiological changes of the swallow.
Disenfranchised grief- this is the term used to describe the grief one goes through that is not understood or acknowledged by those around them, and on a wider scale, by society. This is particularly notable in dysphagia in that it is often not visible to others or widely talked about in the community. Dysphagia can also lead to big changes in routine and lifestyle and a person may go through a period of grieving for their old self or life.
To read more on disenfranchised grief, read our blog post and interview with an experienced social worker, Angela.
Carer impact- managing dysphagia can often result in changes to the normal routine. This can be the way food is prepared or the effort and time put into making food. A person with dysphagia might also go out less when socialising is centred around sharing food and drink with others. When the person with dysphagia is required to make these changes to their routine, their partner often inadvertently makes the same changes to their own lifestyle even though they don’t have the condition. It’s not uncommon to find an unspoken impact taking effect on the people caring for people with dysphagia.
To read more on how dysphagia impacts our friends and family, have a read of this article here and here.
Mental health- There are many ways that dysphagia can impact a person’s mental health, including disenfranchised grief, as discussed above. Isolation to avoid socialising around food and drink can be a large contributor as well as the associated self consciousness and/or reduced self esteem that comes with a change in independence and capacity. It’s important to be mindful that these things can often lead to depression and to seek help where needed.
This topic is discussed in more depth in this blog post and in our interviews with people living with dysphagia.