End of Life Care in Frailty: Dysphagia
The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care.
This chapter looks at swallowing difficulties during the final phase of life. Please click here to view the other chapters in this series.
Dysphagia refers to difficulty swallowing. It can be temporary, or it can be a permanent condition that may or may not deteriorate over time, depending on the aetiology.
Signs that an individual is experiencing dysphagia may include:
- Reported difficulty swallowing certain foods/liquids.
- Coughing or choking when eating and drinking.
- Wet sounding voice post eating and drinking.
- Persistent drooling of saliva.
- Recurrent chest infections/aspiration pneumonia (just over half of patients with dysphagia suffer from aspiration).1
Causes of dysphagia
Dysphagia can be caused by neurological conditions such as stroke, progressive conditions (such as Parkinson’s disease and dementia), obstructive conditions (such as oesophageal stricture), and muscular causes (such as achalasia and sarcopenia).
It is important to take a thorough clinical history to evaluate the cause of dysphagia. If mechanical obstruction is suspected then investigation and treatment to alleviate the obstruction may be indicated, unless the patient is very close to the end of life.
A large proportion of those with a progressive neurological disease will develop oropharyngeal dysphagia as the condition progresses. Half to three-quarters of nursing home residents have some difficulty swallowing. The presence of dysphagia and associated risk of aspiration are indicators that prognosis is limited and should trigger a discussion of treatment goals in this context.2
In the frail and ageing population, the experience of swallowing difficulty is common. Up to 50% of this group are affected by sarcopenia (loss of muscle mass). Dysphagia can occur as a result of loss of swallowing muscle mass and function.3 Oropharyngeal dysphagia can also present more acutely in an older person at a time of severe illness, such as pneumonia. In this context it may be appropriate to consider time limited clinically assisted nutrition and hydration (CANH) to facilitate recovery and rehabilitation.
Management of dysphagia
A multidisciplinary approach is beneficial in order to implement holistic management of dysphagia. This may include speech and language therapists, dietitians, occupational therapists, physiotherapists, carers, nurses and doctors as well as the individual and their family. The multidisciplinary team should work together to optimise the mealtime experience and enhance quality of life; taking into consideration the individual’s wishes where possible.
Management strategies may consist of:
- Changing the consistency of fluids to make swallowing safer, such as thickening drinks.
- Modified texture diets (see IDDSI framework).
- Positions, techniques and specific equipment to enable independent feeding. Dependency on others for feeding is a dominant risk factor in acquiring aspiration pneumonia.4
- Swallow techniques and exercises to strengthen muscles.
- Oral nutritional supplements.
- Clinically assisted nutrition and hydration (CANH).
The needs and wishes of the individual should always be considered. As well as nutrition, oral intake also gives pleasure and has a social, emotional and cultural role.5 Mealtimes can provide individuals with a social routine and the opportunity to interact with others, thereby improving quality of life. It is important to be aware of someone’s likes/dislikes in order to maximise enjoyment. Timings of meals should also be considered, specifically in relation to levels of fatigue.6
Where possible it is advisable that individuals consider planning for the future in order to make their wishes known regarding feeding decisions should their swallow function deteriorate. Some individuals may decide that if they are unable to swallow safely that they would rather continue to consume oral intake of a normal consistency, even with acknowledged risk, such as the increased likelihood of choking episodes or chest infections. Other people, such as those with a progressive condition, may decide that they would like an alternative feeding method and continue to have some tastes orally for pleasure. Clear documentation and review of these wishes will help to ensure that preferences are conveyed and communicated. An excellent resource for considering and documenting these decisions is the Future Feeding Planning Pathway created at the Royal Hospital for Neuro-disability.
Decisions regarding provision of CANH involve more than just medical evidence relating to survival and requires consideration of social, cultural, religious and spiritual beliefs. Each decision must be taken by the multidisciplinary team in partnership with the patient and/or (if patient has lost capacity) their family.
Although there is no requirement for a doctor to offer treatment they believe to be of no benefit (and/or may potentially offer a disbenefit), the issue of eating and drinking is especially emotive. A discussion with the patient and family, which explains the limitations of CANH - including that it does not reduce the risk of aspiration and may not prolong life - is essential. Although there is little evidence of benefit for CANH in dementia there is also a paucity of good quality evidence and therefore blanket policies restricting nasogastric or percutaneous endoscopic gastrostomy feeding are not appropriate.
Poor oral hygiene is common in hospitalised and nursing home patients. The number of decayed teeth, frequency of brushing and dependency on others for oral care are associated with incidences of aspiration pneumonia.4 Good mouth care should be maintained to make sure the mouth is clean and moist ensuring the individual is comfortable, especially if not eating or drinking or if approaching the end of life.
- Teasell R et al. Dysphagia and Aspiration Following Stroke. EBRSR. March 2018.
- O’Loughlin G and Shanley C. Swallowing problems in the nursing home: a novel training response. Dysphagia. 1998; 13(3): 172-83.
- Von Haeling, Morley and Anker (2010) Cachexia Sarcopenia Muscle. 1(2)
- Langmore, Terpenning, Schork, Chen, Murray, Lopatin, Loesche. Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia 1998; 13(2): 69-81.
- Cederholm T, Barazzoni R, Austin P et al. ESPEN guidelines on definitions and terminology of clinical nutrition. Clin Nutr 2017;36;49-64.
- Holdoway A, Smith A. Dysphagia: A healthcare professional fact sheet. 2019. Available at: www.malnutritionpathway.co.uk/dysphagia.pdf