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Shared decision making in dysphagia

07 July 2022
10 min read
Volume 31 · Issue 13

Abstract

The term ‘risk feeding’ usually applies where a person continues to eat and drink despite aspiration. This term has been increasingly challenged. Risk feeding has connotations of risk-taking behaviour and may conflict with healthcare values of keeping people safe. ‘Risk’ is difficult to quantify in dysphagia and interventions to reduce risk are not risk-free. The relationship between aspiration and pneumonia is complex, as are the success of the interventions designed to prevent them. Attempts to eliminate risk may lead to heavy restriction with unsatisfactory evidence, at a cost to quality of life. The Royal College of Speech and Language Therapists (RCSLT) has introduced a framework for multidisciplinary, person-centered decision making: Eating and Drinking with Acknowledged Risk. Every decision we make carries risk and as humans we balance these based on our personal values and goals. This is supported by the Mental Capacity Act 2005 and it is our role to achieve this for our patients. This article discusses these complexities and describes the RCSLT framework, with particular focus on the role of the nurse.

When a person presents with dysphagia there are decisions to be made. Each decision carries risk: to physical health due to respiratory disease, dehydration, or malnutrition and risks to psychological wellbeing, which are well documented as being associated with dysphagia. Historically, ‘risk feeding’ has referred to the situation where a person continues to eat and drink despite a specific risk of aspiration. Risk feeding is a problematic term for many reasons and the concept can cause anxiety among health professionals. It is also a term that has been applied broadly and inconsistently.

The Royal College of Speech and Language Therapists (RCSLT) has attempted to address some of these issues and reach a consensus on managing nutrition and hydration in this patient group. The document Eating and Drinking with Acknowledged Risks: Multidisciplinary team guidance for the shared decision-making process (RCSLT, 2021) aims to guide health professionals through this process, providing a framework that respects individual wishes and maximises quality of life. It is a multi-professional document, outlining the roles and responsibilities of different members of the multidisciplinary team (MDT) in this process.

Dysphagia, aspiration and risk

Oropharyngeal dysphagia is the term used for difficulties with eating and drinking due to impairments of the oral or pharyngeal phases of swallowing. Dysphagia may result in aspiration, where food or drink enters the airway below the level of the vocal cords (Rosenbek et al, 1996). However, it is not synonymous with aspiration and patients with dysphagia do not necessarily aspirate. It is sometimes believed that aspiration carries a clear and direct link to pneumonia, but there is no linear correlation between aspiration and patients who go on to develop aspiration pneumonia (RCSLT, 2021).

There are many people who have dysphagia with aspiration but do not develop pneumonia but also patients who are extremely vulnerable to the development of pneumonia with only small amounts of aspiration. Despite the prevalence of dysphagia, this association remains poorly understood and difficult to predict. Langmore et al (2002) and Hibberd et al (2013) both demonstrated that dysphagia alone is not a predictor of pneumonia. Required additional predictors include dependency, poor oral hygiene, multiple comorbidities and reduced mobility. These, while not accounting for all patients, provide a framework to measure risk against. Sommerville et al (2022) examined readmissions and survival in patients who were eating and drinking with risk of aspiration. Age was an important factor for readmission and death within 3 months, but there was a good prognosis if survival and hospital admission went beyond 3 months. More research is required in this area to help understand risk and aspiration.

Because risk in dysphagia can be difficult to quantify for clinicians and patients, decision making is challenging. Risk tends to focus on aspiration pneumonia. This is understandable, due to the potential severe consequences. However, there are many other risks associated with dysphagia that must be considered as part of the decision. For example, the impact on quality of life from restrictions placed on eating and drinking or by being nil by mouth (Plowman-Prine et al, 2009), the psychosocial impacts of not being able to share a meal with family and friends, malnutrition and dehydration from lack of enjoyment of food and drink or the effort involved with eating and drinking, and the associated consequences of this (such as weight loss and urinary tract infections) (Vivanti et al, 2009).

Risk feeding

The term ‘risk feeding’ usually refers to someone who is eating and drinking despite risk of aspiration (RCSLT, 2005). However, it is used broadly and inconsistently (Miles et al, 2016). Recently, the term has been called into question as being problematic. In their article ‘The perils of risk feeding’, Murray et al (2019) discussed how the word ‘feeding’ is unintentionally demeaning due to its association with animals and babies. They also discuss problems with the word ‘risk’, which is so heavily used in healthcare settings. ‘Risk’ has become synonymous with danger that should be avoided and someone choosing to take a risk is loaded with connotations. Increasingly, risk is recognised as part of life (RCSLT, 2021), and certainly part of healthcare intervention.

‘If risk feeding, why not “risk walking” or “anticoagulation at acknowledged risk of bleeding”? “Risk-anything” is not how healthcare (or other) decisions are reached: instead, people need to be informed of the potential benefits and risks of any proposed interventions and can then weigh up this information in the context of their preferences and goals and decide how to proceed.’

Murray et al, 2019

Decision-making

Decisions in health care should be shared between clinicians and patients (Towle and Godolphin, 1999). Shared decision making ensures people understand the risk, benefits and possible consequences of different options. Restrictions and modifications to food and drink are interventions, and patients are entitled to decide which interventions they accept. Certain risks will be more or less acceptable to different people and certain management options may be unacceptable. It is the clinician's responsibility to investigate, educate and, where appropriate, advise; but also, to ask, listen and seek to understand the patient's values, priorities and wishes. It is vital that we are honest with our patients about dysphagia management options. Long-term non-oral feeding (for example, percutaneous endoscopic gastrostomy (PEG)) does not eliminate the risk of aspiration pneumonia, but is in fact known to correlate with pneumonia (Langmore et al, 2002) and the benefits of long-term thickener use are increasingly called into question (Bock et al, 2017).

For some patients, minimisation of risk will be the priority over everything, or the discomfort associated with eating and drinking makes it a burden rather than a pleasure. Equally, for some, the risk of aspiration will be proven to be so high that the decision for both patient and clinician will be relatively uncomplicated. For many patients, however, there will be a significant amount of grey area, where the process of weighing up risks and benefits is complex and highly individual.

Where dysphagia is associated with neurological illness/injury, a mental capacity assessment will be required for decisions regarding dysphagia management (in line with the Mental Capacity Act 2005). For patients who lack capacity for this specific decision, a ‘best interests’ decision will be required. Best interests decisions require clinicians to step back and try and view the decision through their patients' values, leaving their own biases at the door. A person lacking capacity to choose does not give clinicians free rein to implement restrictions that they believe will ‘keep them safe’—clinicians must, according to the law, seek to identify the least restrictive option (Ruck Keene et al, 2021). In some circumstances, it can be difficult to be certain what is ‘safe’, for the reasons outlined above. If applying restrictions, we must have evidence of the risks to justify this. For some people, ‘safest’ in terms of aspiration is not ‘best’. For example, a person with cognitive impairment who refuses to drink thickened fluids and is becoming dehydrated, or a person who is deeply distressed at their oral intake being restricted.

Often, nurses and healthcare assistants will be responsible for supporting patients to eat and drink. This means nurses, and healthcare assistants under the guidance of nurses, have a very specific role with patients who are eating and drinking with acknowledged risk of aspiration, which can cause understandable anxiety, especially when giving food and drink to a patient who is known to be aspirating. Where a decision has been made in a person's best interests that they should eat or drink with acknowledged risk of aspiration, there can be fear among the health professionals of doing something that causes the person harm. However, the Mental Capacity Act 2005 is clear that in a situation where a decision is made in a person's best interests, clinicians are protected from litigation as long as the correct process has been followed. We must be flexible and creative in our solutions to make them as individualised as possible.

Self-management, creativity, and flexibility

Clinicians should be aiming for their patients with dysphagia, where possible, to become experts in their condition to enable them to make their own decisions. Patients who have lived with dysphagia will often have a good understanding of the textures of food they can manage and the strategies that help them and living in their own homes allows them to manage their dysphagia flexibly in this way. Patients do not always fall into the neat categories defined by the International Dysphagia Diet Standardisation Initiative (IDDSI) and the framework itself allows for this (IDDSI, 2019). For example, a person may know they can manage IDDSI level 7 (regular diet), except for pizza crusts. Or a person may usually have a minced and moist diet (level 5) but knows how they can cook rice and beans to make it manageable for them. Equally, a person may generally have their drinks thickened to level 2 consistency but find it unacceptable to thicken their morning cup of tea, which they enjoy unthickened, as this is important for their quality of life and still minimises the quantity of overall aspiration.

For people with dysphagia who are inpatients, it can be challenging to find flexibility in hospital systems where policies designed to keep patients safe may lead to restriction. For example, a person with dysphagia who is on a level 6 diet may know they could manage a meal on the regular menu but not be allowed to have it because it is not on the dysphagia diet menu.

Much of rehabilitation is about measured risk taking, which can be a challenging approach to implement in systems that are designed to avoid risk. It is important that health professionals support patients to understand and assess their own risks, allowing them to experiment and lead on decisions. This is the only way people will be able to self-manage their conditions in the future.

Guidelines

In attempt to manage some of the complexity in decision making regarding aspiration in dysphagia, the RCSLT has published guidelines on Eating and Drinking with Acknowledged Risk (EDAR) (RCSLT, 2021). This refers to eating and drinking where there is risk of aspiration pneumonia, and the term aims to replace ‘risk feeding’. Nurses are concerned with shared decision making with their patients with dysphagia. The first step in this decision-making process is to understand the interests and wishes of the person and those involved in their care, engaging in appropriate assessments, and taking steps to minimise risks that exist.

The assessment and decision-making process outlined in this RCSLT document is a multidisciplinary team process, and one in which the patient is a core part of the team. Decision-making must include the following steps:

  • A clinical assessment of swallowing
  • Capacity assessment
  • Establish the goal of intervention/care
  • Facilitate communication with the MDT
  • Where appropriate, set out an advanced care plan.

EDAR and the nursing role

A core nursing role is assessing patients' conditions and co-ordinating the input of other professionals (Burton, 2000). They may be the person to identify a swallowing difficulty and refer to a speech and language therapist (SLT) or to observe that the plan is not being tolerated. Nurses play a key role in the EDAR process.

Establish the goal of intervention/care

The guidance states that it is the responsibility of professionals involved in the individual's nutrition and hydration to prioritise the wishes and assess the burden and benefit of nutritional options and consider how management will impact on the individual's quality of life. Nurses are well placed to advise on this as the profession who oversee eating and drinking on the ward.

Communication within the MDT

This document makes it clear that communication regarding EDAR is the responsibility of the whole MDT. The document provides examples of the roles of different members of the MDT, which may be flexible and overlapping. The suggested responsibilities of nurses are as follows:

  • Use professional judgement to identify potential candidates for EDAR
  • Use the nursing handover to ensure risks are both acknowledged and minimised with the agreed interventions (for example, scrupulous mouthcare and optimum positioning). This may include reassuring colleagues who might be anxious about EDAR and directing them to the documented plan
  • Support the individual to follow eating and drinking recommendations as much as possible and to document and escalate issues with this
  • To act as the person's advocate
  • To evaluate care and risk-manage situations when SLT advice is not available, working with medical colleagues, the person and their family
  • Reviewing people's general physical health and escalating concerns back to the MDT/GP.

Documentation

Where a person lacking capacity wishes to have nutrition in a way which appears to pose risk and this has been agreed to be in their best interests, those acting on that risk (such as nurses and healthcare assistants providing that nutrition) will be protected from liability, as long as they have acted with due care and they reasonably believe that they are acting in the person's best interest (under the Mental Capacity Act 2005). Having an MDT document that reflects the discussions and includes the decision to eat and drink with acknowledged risk is required for governance, assurance and for reassurance for those acting on the decision.

The decision to eat and drink with acknowledged risk, as well as interventions to reduce the risk, should be added to care plans and discharge reports so that teams working with the individual in the future will be aware of nutrition plans and future care.

A person with capacity can change their mind regarding how their swallow is managed. For a person without capacity, a decision that seemed to be in a person's best interests can be reviewed and changed if circumstances change or more information becomes available. People who eat and drink with acknowledged risk who are admitted to hospital with an acute illness should be referred to the SLT to review if this remains the right course of action at this time. Any patient wishing to discuss and/or change the management of their dysphagia should be referred for a review. A review should also be undertaken where a nurse, other member of the MDT or a patient's family member questions whether a particular management plan remains in the person's best interests.

It should be established if any documents or guidance already exists regarding management of risks related to an individual's eating and drinking. If this remains relevant, nurses are responsible for incorporating it into the care plan and implementing it on a ward level and/or educating the patient and their family.

The aim is that all aspects of care and outcomes are considered, resulting in a respectful, dignified and person-centred approach, that each member of the team is clear about their role, and the decision is documented and communicated in a way with which people feel confident and comfortable.

Summary

Decision making in dysphagia is complex and the condition and management options pose risks. The term ‘risk feeding’ has been shown to be problematic and the relationship between dysphagia and aspiration is not straightforward and predictable. Health professionals must work as a team with their patients to make individual decisions for individual situations and must view risks-management as a positive part of person-centred decision-making, not something to be avoided at all costs. The RCSLT multidisciplinary guidance on shared decision making with patients who are eating and drinking with acknowledged risk aims to streamline this process, providing a respectful and person-centred approach with clear roles, responsibilities and communication that provides clinicians with confidence in the decisions made.

The full document and framework is available on the RCSLT website (https://tinyurl.com/3npk9skr).

KEY POINTS

  • The relationship between aspiration and pneumonia is non-linear and complex
  • No intervention for managing dysphagia is risk free
  • ‘Risk feeding’ may carry negative connotations and anxiety among health professionals
  • Decisions should be made with patients, based on their priorities and values
  • The Royal College of Speech and Language Therapists has introduced a multidisciplinary team, person-centred framework for eating and drinking with acknowledged risk

CPD reflective questions

  • What decisions do you make that may have negative consequences for your physical health, but benefit your quality of life?
  • What do we have to consider in healthcare decisions where there are risks?
  • How do you feel when working with a patient who is ‘risk feeding’? How might what you have read change this?
  • What might you do differently when you are working with a patient who is described as ‘noncompliant with their recommendations’?