Dysphagia Management for Older People Towards the End of Life
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1. Executive Summary
Older patients in acute hospitals frequently have dysphagia, resulting from acute or chronic illnesses such as stroke, dementia, and respiratory diseases. Dysphagia management requires a collaborative, multidisciplinary team (MDT) approach. Dysphagia assessment and management for older people is best provided by the MDT because of the complexities and inter-related nature of their needs; swallowing cannot be assessed in isolation. Geriatricians therefore have an important role to play in overseeing the management of dysphagia.
The decision-making process regarding whether to provide an older person with artificial nutrition and hydration or continue to allow food and drink by mouth once their swallowing becomes unsafe provokes difficult ethical decisions for professionals and patients. There are currently wide variations in the management decisions made, and inconsistencies occur in MDTs working across acute settings in the UK (Groher 1994, Logemann et al 2008). As a result patients’ are often unable to access the specialist services required to effectively manage their eating and drinking difficulties towards the end of life; potentially causing more distress in the longer-term.
Professionals within the MDT need to work together to ensure a comprehensive geriatric approach is applied in relation to dysphagia management, considering the risks and benefits of eating and drinking for each individual to enable optimal quality of life. A co-ordinated approach, particularly towards the end of life is essential for patients with dementia and other chronic, progressive conditions, to ensure consistent transfer of care between acute and community settings.
Ageing does not necessarily cause dysphagia, but the potential for developing dysphagia becomes increasingly common with advancing age (Leder and Suiter 2009). Age-related changes affect head and neck anatomy and physiology, increasing the risk of dysphagia. These include: tongue pressure changes, slower swallowing, increased airway penetration, sensory changes, and oesophageal motility changes (Ney et al 2009). These changes contribute to older people being more vulnerable to dysphagia, as a result of a decreased functional reserve (Robbins et al 2002).
The rising incidence of dysphagia for older people in hospitals, particularly those over 80 years of age (Leder and Suiter 2009) has many health implications including: malnutrition, dehydration, poor oral hygiene, choking, aspiration pneumonia, and increased need for institutionalised care (Marik and Kaplan 2003, Ney et al 2009). Complex feeding decisions regarding the continuation of oral intake or commencement of artificial nutrition for patients with severe dysphagia are becoming more frequent for Geriatricians, and they in turn seek advice from their MDT colleagues, such as speech and language therapists and dieticians.
The management of swallowing difficulties for older people towards the end of life remains an under researched area (Bath et al 2000, Wright et al 2008). Research and guidance has focused on decision-making for initiating artificial nutrition and hydration for older patients (Enrione and Chutkan 2007, Volkert et al 2006), but alternative dysphagia management options such as risk management have yet to be fully evaluated (Dibartolo 2006, Palecek et al 2010). Research is needed to develop the required specialist approach to dysphagia management for older people (Leder and Suiter 2009, McCullough et al 2007), especially those living with progressive chronic conditions who are nearing the end of their life. Best-practice guidance is available in relation to managing dysphagia for specific conditions affecting older people; commonly stroke and dementia. (These are referenced and available below; see section 4.) Specific information regarding feeding and hydration management towards the end of life is also available in the BGS best practice guide ‘Nutritional advice in common clinical situations’.
The Royal College of Physicians has provided recent structured advice for oral feeding difficulties and dilemmas particularly towards the end of life, which are an excellent referent for MDTs working in this area. It covers in detail: 1) Background: oral feeding; 2) Techniques of artificial nutrition; 3) Ethics; 4) Law; 5) Practice, and gives just consideration to risk management and social oral feeding techniques:
“Patients with oral feeding difficulties deserve special care but may not receive it. Their care should be tailored to their requirements, not to the needs of others. It should, as far as possible, preserve their oral intake. If this is impossible, tube feeding may be necessary, short or long term. Very rarely, intravenous nutrition may be appropriate” (RCP, 2010).
Artificial nutrition and hydration – refers to tube feeding by either; Naso-gastric tube (NGT) or Percutaneous Endoscopic Gastrostomy (PEG).
Aspiration –refers to pulmonary aspiration, the entry of secretions or foreign material into the trachea and lungs which can lead to aspiration pneumonitis (Logemann 1998).
Dysphagia – refers to oro-pharyngeal dysphagia defined as “difficulty in swallowing or impairment in the movement of swallowed material from the pharynx to the stomach” (Logemann 1998). This definition is most commonly used in the literature referring to this type of dysphagia.
Oral intake – refers to when the main route of feeding and hydration is through the mouth, via the oesophagus, into the stomach (Logemann et al 2008).
Risk management – describes an approach to dysphagia management where patients continue to eat and drink, with the support of the multidisciplinary team, despite an ‘unsafe swallow’ and ongoing risk of aspiration, (RCP 2010). This approach is also referred to clinically as ‘at risk feeding’ or ‘comfort feeding’.
Swallowing – refers to the entire act of deglutition, the process whereby something is passed from the mouth to the pharynx, into the oesophagus, and to the stomach, whilst the epiglottis is shut to prevent material from falling into the airway and causing aspiration (Logemann 1998).
4. Health Policy and Guidance
There are several related policy documents and guidelines which relate to dysphagia management, particularly towards the end of life:
- Dementia: supporting people with dementia and their carers in health and social care. (2006) National Institute for Health and Clinical Excellence; DOH: http://publications.nice.org.uk/dementia-cg42
- Living well with dementia National Dementia Strategy (2009) DOH: Crown Copyright. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058
- Management of patients with dementia. A national clinical guideline, (2006) Scottish Intercollegiate Guidelines Network, Edinburgh: http://www.sign.ac.uk/pdf/sign86.pdf
- Management of patients with stroke or TIA: Assessment, investigation, immediate management and secondary prevention (2008) Scottish Intercollegiate Guideline Network. Edinburgh:http://www.sign.ac.uk/guidelines/fulltext/108/index.html
- Management of patients with stroke: identification and management of dysphagia (2010) Scottish Intercollegiate Guideline Network: http://www.sign.ac.uk/guidelines/fulltext/119/index.html
· Mental Capacity Act (2005), London: HMSO http://www.legislation.gov.uk/ukpga/2005/9/contents
- Nutrition advice in common clinical situations (2009) Good Practice Guides, RJA, British Geriatrics Society: http://www.bgs.org.uk/index.php?option=com_content&view=article&id=41:gpgnutrition&catid=12:goodpractice&Itemid=106
- Nutrition Support in Adults: oral nutrition support, enteral tube feeding and parenteral nutrition (2006) National Institute for Health and Clinical Excellence; DOH: http://publications.nice.org.uk/nutrition-support-in-adults-cg32
- Quality Standard for end of life care for adults (2011) National Institute for Health and Clinical Excellence; DOH. http://publications.nice.org.uk/quality-standard-for-end-of-life-care-for-adults-qs13
- Royal College of Speech and Language Therapists “Speech and language therapy provision for people with dementia” (2005) RCSLT Position Paper, RCSLT: London. http://www.rcslt.org/docs/free-pub/dementia_paper.pdf
- Royal College of Physicians (2010) Oral Feeding Difficulties and Dilemmas: particularly towards the end of life. Royal College of Physicians & British Society of Gastroenterology, London. http://bookshop.rcplondon.ac.uk/contents/pub295-ca2ff0c8-85f7-48ee-b857-8fed6ccb2ad7.pdf
- Stroke: diagnosis and initial management of acute stroke and transient ischaemic attack (TIA) (2008) National Institute for Health and Clinical Excellence; DOH. http://publications.nice.org.uk/stroke-cg68
- The National Stroke Strategy (2007) DOH: Crown Copyright. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081062
5. Models of Service Provision
The RCP outlines the following approaches for the MDT to consider in managing dysphagia towards the end of life:
- Full oral feeding using a range of compensatory strategies
- A combination of oral and non-oral feeding
- Palliative feeding using small amounts of food, mainly for enjoyment
- Artificial nutrition using non-oral methods
“Speech and language therapists can advise on strategies to minimise aspiration risk, facilitate eating and drinking, and improve nutritional status. These are modifications of food and fluids including changes to texture, consistency and quantity swallowing strategies including manoeuvres and sensory techniques; positioning and postural techniques; external strategies such as carer support, environment and administering food and drink; and behavioural and cognitive techniques” (RCP, 2010).
Patient capacity and wishes
Patients’ wishes are of primary importance. A competent patient is able to make an informed decision about whether they wish to continue to eat and drink despite an unsafe swallow. For those patients who lack capacity the Mental Capacity Act which came into force in 2007 is followed and the MDT and patient advocate acts in the best interest of each individual patient (DOH, 2005).
Dysphagia management should be patient centred and a team decision made, drawing on all levels of expertise. A MDT approach to dysphagia management is well established, and recognised as best practice to optimise nutrition and hydration for patients (Garo et al 2004, Logemann 1998, Marks and Rainbow 2001). Although the Geriatrician holds the final responsibility for the decisions regarding a patient’s swallowing and nutritional management, they should work closely with speech and language therapists and dietitians to optimally manage dysphagia. Speech and language therapists are able to provide detailed information about the severity of the dysphagia and recommend how safe a person’s swallow is to manage food and drink orally, assessing the aspiration risk. Dietitians can recommend how patients can best meet their nutrition and hydration requirements. Nurses provide daily hands-on assistance for those patients who have swallowing difficulties and need to be supported and engaged in the process as part of the MDT. Occupational therapists and physiotherapists can also help to manage dysphagia, with regards to respiratory management, positioning, and optimal feeding strategies.
The following are an important consideration when deciding on the dysphagia management approach taken:
· Distress – the level of patient distress is an important factor in continuing oral intake. This can be distress related to:
§ eating and drinking,
§ artificial nutrition and hydration
§ feelings of hunger/thirst
§ repeated hospital admissions/ changes of environment.
· Respiratory status – this refers to any underlying respiratory disease which may impact on:
§ safe co-ordination of swallowing
§ nutrition and hydration requirements
§ airway protection
§ swallow comfort
· Mobility – this refers to how mobile a patient is which may impact on:
§ chest status
§ feeding dependence
§ airway protection
§ swallow comfort
· Risks – this refers to the different risks to the patient of:
§ aspiration (of oral intake and/ tube feeding)
§ being Nil-By-Mouth
§ oral hygiene
§ reduced social well being
§ dehydration and under-nutrition
In making dysphagia management decisions towards the end of life it is essential to consider the following:
· Acute/ chronic dysphagia
· The underlying medical condition/s (see related Healthcare guidelines for specific conditions)
· Nutritional status
· The stage of their condition
· The prognosis
Specialist training in the needs of older people is essential in order to take a holistic management approach to dysphagia. Swallowing difficulties cannot be managed in isolation to other difficulties this patient group may face. Coordinated MDT training in this area for geriatricians, speech and language therapists, nurses and dietitians is essential to enable all factors to be taken into account when decisions are made regarding a dysphagia care-plan. Principles from formal training in palliative medicine concerning end of life care and treatment decisions may also be applicable.
· A holistic patient-centred MDT approach to dysphagia management is essential.
· Expertise of speech and language therapists and dietitians should be sought and a team decision made which is in the best interest for each individual patient.
· Specialist experience and training in the needs of older people is essential.
· Geriatricians need to work with speech and language therapists and dietitians to encourage engagement throughout the care of the patient, ensuring continued access to specialist services to help make swallowing as comfortable and safe as possible towards the end of life.
· Dysphagia management needs to move away from a discipline specific framework in order to take more risks for the benefit of the whole patient.
· There is a need to develop alternative dysphagia management strategies such as social and hand feeding techniques with a focus on comfort rather than risk, and outcomes pertaining to quality of life.
· Older patients with dysphagia need to have an individual dysphagia care plan outlining the agreed management approach.
· “At the end of life, even if deemed to have an ‘unsafe swallow’ a risk management approach may offer the patient the best quality of life. If in doubt a trial of nasogastric feeding with clear agreed objectives may be appropriate. Tube feeding should then be withdrawn if failing to achieve the objectives. ‘Nil by mouth’ should be a last resort, not the initial default option” (RCP 2010).
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