The purpose of this document is to detail the process for supporting individuals who fail to manage the food bolus adequately once it is in the mouth (oral phase dysphagia) or aspirate/ choke when swallowing (pharyngeal phase dysphagia). These may be individuals who are nearing, or, at end of life, have a long term progressive neurological condition, a pathology which impacts on the safety of their swallow (such as a head and neck cancer), a mental health difficulty or a learning disability.

This document has been created with close reference to the Lewisham NHS Trust and North Devon Healthcare NHS Trust guidelines and acknowledgment is made to the authors of those documents.

The challenge arises when these individuals are deemed unsuitable for alternative nutrition or hydration (ANH) following a multidisciplinary team (MDT) discussion usually involving the medical team, the dietitian and the speech and language therapist (SLT).

An individual may be an inappropriate candidate for ANH if the procedure risk outweighs the benefit; the individual themselves decline ANH or there is poor prognosis/a short life expectancy. Clinicians are then faced with the dilemma of how best to manage these individuals who are unsuitable for ANH but at risk of aspirating or choking on food/fluid.

The decision-making process whether to introduce alternative nutrition and hydration or continue to allow food and drink orally once their swallowing becomes unsafe, provokes difficult ethical decisions for professionals, individuals and their carers.

There may be instances where an individual with capacity does not wish to follow speech and language therapy safer swallowing recommendations due to the perceived impact on their quality of life.

Where an individual is deemed to lack capacity, but is obviously distressed or at risk of malnutrition by the limitations of speech and language therapy safer swallowing recommendations, the MDT may make a best interests decision to allow food or drinks deemed ‘unsafe’ in order to best support their quality of life.

The eating and drinking with acknowledged risk document has been devised to guide teams through an organised decision making process, encompassing individual choice and multidisciplinary clinical input to what appears to be an ethically fraught area.

The policy covers the eating and drinking with acknowledged risk process for individuals living in the community at home or within a homely setting, or when admitted to an acute ward or community hospital environment. The policy and decisions should follow the individual. The roles and responsibilities of the multidisciplinary team are outlined within this document.

Implementation of this policy will ensure that:

• Individual’s wishes are met.
• If an individual does not have capacity, eating and drinking with acknowledged risk recommendations are made in their best interest following a clear pathway and in discussion with their power of attorney or welfare guardian as appropriate.
• An MDT approach is taken.
• The policy will reflect the organisation’s values of respect for individuals, listening and supporting them and demonstrating compassion.

The policy applies to all MDT staff.

The document addresses capacity, ethics and quality of life issues, providing the MDT with a patient centred framework to facilitate decisions on eating and drinking with acknowledged risk. The MDT should be mindful that there is often no ‘right’ answer when it comes to ethical decision making and therefore all decisions should be grounded in the patient’s best interest; taking into account the views of the patient, family and anyone else involved in their care.

The eating and drinking with acknowledged risk process ensures that all aspects of care and outcomes are considered. This approach results in a respectful and dignified patient centred decision which is made with serious thought and over a reasonable time frame.

If an individual is deemed unsafe to eat and drink and is found to be unsuitable for alternative nutrition and hydration, then eating and drinking with acknowledged risk should be considered.

The eating and drinking with acknowledged risk pathway is also indicated if the individual has capacity, understands fully the high risks of choking on, and/or aspiration of, oral intake but chooses to continue to eat and drink.

Individuals who lack capacity may require a best interest decision to be made around eating and drinking with acknowledged risk if they are shown to be at risk of malnutrition or they show distress around their SLT safer swallowing recommendations.

The eating and drinking with acknowledged risk summary document outlines the reasons why an individual may be a candidate for eating and drinking with acknowledged risk. This is followed by a capacity information gathering tool (Appendix 1) to determine whether formal assessment of capacity is required.

The eating and drinking with acknowledged risk summary document (Appendix 2) is completed by Speech and Language Therapy and co-signed with the patient’s GP or consultant.

The eating and drinking with acknowledged risk can be reviewed at any time.

Roles and responsibilities

Clinical decision making

Capacity information gathering tool

It remains the responsibility of professionals working with an adult to put in place any appropriate risk management arrangements/plan, pending any capacity assessment.

Capacity information gathering tool pathway

Summary sheet 

Dysphagia care plan

Adults with Incapacity (Scotland) Act (2000)

Chaklader, E, (2012) Dysphagia management for older people towards the end of life. British Geriatric Society. [online]. Available from: http://www.bgs.org.uk/index.php/topresources/publicationfind/goodpractice/2328-bpgdysphagia

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