Origin and Scope
Speech pathologists are tertiary trained allied health professionals who have a critical role to play in the multidisciplinary assessment and management of oropharyngeal dysphagia (Speech Pathology Australia (SPA), 2004). Within this field, speech pathologists frequently work with people who choose not to follow speech pathology recommendations and to instead manage the risks associated with their dysphagia. Often this can lead to speech pathologists feeling challenged by ethical and professional considerations and seeking clarity about their role in these situations. Furthermore, other members of the treating or support team for that person may benefit from guidance around the role of the speech pathologist in these scenarios.
This Position Statement has been developed to reflect the position of Speech Pathology Australia regarding the role of the speech pathologist in supporting informed decision making with people choosing not to follow dysphagia recommendations. This Position Statement is relevant for speech pathologists working with people across the lifespan, encompassing infants, children, adolescents, adults, and older people. Throughout the Position Statement when referencing people who receive speech pathology services, this may include the person themselves, their family, carers, and legal decision makers.
This Position Statement may provide a framework for consistency of practice for speech pathologists working with people with dysphagia who choose not to follow speech pathology recommendations for the management of their dysphagia. This Position Statement also acts as a means of providing education and advocacy to external stakeholders, including multidisciplinary team members, management, facilities, government and funding bodies, as well as consumers and their carers / families.
The appropriate terminology to use when a person does not wish to follow dysphagia recommendations is both contentious and inconsistent across the profession. The term ‘risk feeding’ is one commonly used within organisations and the literature, and there are a number of organisations developing internal policies and guidelines in this area of clinical practice.
In development of this Position Statement, a common theme emerged both from the Working Party and the literature review; overall, many clinicians and researchers dislike both the terms ‘risk’ and
‘feeding’ in this context. Individually, ‘risk’ as a term in healthcare has become synonymous with danger or workplace compliance, and as such can place unnecessary guilt and burden on people with dysphagia and their carers/families. ‘Feeding’ can be considered a demeaning term for use in relation to adults who instead eat and drink (Murray, Mulkerrin, & O’Keeffe, 2019). Overall, it was considered that ‘risk feeding’ as a label has negative connotations and does not reflect a person-centred approach to dysphagia management.
Although the Working Party agreed with the concerns outlined above in relation to the term ‘risk feeding,’ it was acknowledged that the term is used broadly both within the profession of speech pathology and by members of the multidisciplinary healthcare team. As such, although it was not considered feasible or within the scope of this paper to endeavour to change the term or introduce a new term, it was considered a key priority of this Position Statement to acknowledge and represent the broader and overarching principles related to ‘risk feeding.’ For this reason, the Position Statement has been titled “The Role of the Speech Pathologist in Supporting Informed Choice and Shared Decision Making in Dysphagia,” to reflect the focus of the role of the speech pathologist in this situation.
In discussions with people living with dysphagia and their carers/families, speech pathologists should consider minimising or avoiding use of the term ‘risk feeding’ due to the potentially negative connotations of the term. Speech pathologists should provide education and information in a clear, non-biased manner that enables a person with dysphagia to make informed choices regarding their own healthcare. Furthermore, speech pathologists have a responsibility to ensure that decisions relating to a person choosing to eat / drink at risk are made within a shared decision-making framework.
Reasons for Making an Informed Choice to Eat and Drink against Recommendations (‘Risk Feed’)
In developing this Position Statement, a thorough literature review was conducted which revealed that speech pathologists working across a variety of clinical areas throughout the world find managing clients who eat / drink at risk to be a very complex area of clinical practice. Although there is limited evidence specifically regarding the number of adults who elect to eat / drink at risk, some studies suggest that only between 21.9% and 52% of people adhere to dysphagia recommendations (Krekeler, Broadfoot, Johnson, Connor, & Rogus-Pulia, 2018).
The literature notes that adults who live at home are twice as likely not to follow speech pathology recommendations for dysphagia management than those living in residential aged care facilities, and that in the adult population younger people are more likely to not follow speech pathology recommendations than older people (Colodny, 2005; Kaizer, Spiridigliozzi, & Hunt, 2012).
Overall, reasons for choosing not to follow speech pathology recommendations for texture modified food, thickened fluids and/or management strategies include:
- Dislike of the texture and taste of modified foods / fluids;
- Social implications, such as exclusion from social events, and cultural and religious considerations;
- Denial of a swallowing problem;
- Desire to continue to have particular foods;
- Difficulty implementing recommendations, such as difficulty preparing modified food and/or thickened fluids;
- Nearing the end of life and/or being managed within a palliative approach, and therefore electing to comfort feed (Krekeler et al., 2018; Colodny, 2005; Kenny, 2015).
In some cases, the severity of a person’s dysphagia may mean that they are unable to safely swallow any fluid consistencies or diet textures, and for various reasons they may also not be considered appropriate for enteral feeding. In these cases, the only option for a person who elects not to accept enteral feeding may be to eat / drink at risk.
Additionally, recent shifts in policy directions towards person-centred health care models are empowering people to more actively participate in decision making around their healthcare decisions, which may include considering not following dysphagia recommendations. Using a shared decision-making framework as discussed below may support speech pathologists when navigating this scenario.
Risk Management and Dysphagia
When a person is diagnosed with dysphagia, their treating speech pathologist will work with them to develop a multi-faceted management plan that meets their individual needs. As per the Clinical Guideline: Dysphagia (SPA, 2012), the aims of dysphagia intervention are to maximise the safety, efficiency and effectiveness of a person’s swallow, and should involve specific intervention(s) that optimise clinical outcomes and target the underlying impaired function(s).
A risk management approach in dysphagia involves the treating speech pathologist, as a member of the multidisciplinary team, considering the risks and benefits of oral intake for each person while also identifying ways to maximise health, wellbeing, and quality of life. The multidisciplinary team also needs to consider other factors and co-morbidities that place a person at risk of adverse events such as developing aspiration pneumonia as part of the risk management plan.
Person-Centred Health Care
Healthcare in Australia is evolving, with an increasing move away from traditional “medical models” with people as passive recipients of health care to a more person-centred approach (Delaney, 2015). Within a person-centred approach to health care, people are considered active participants in the decision- making process, with a focus on greater collaboration, respect, and communication between health care professionals and the people who are the recipients of health care (Delaney, 2015). Research has shown that the move towards person-centred care results not only in improved patient outcomes, but also in improved adherence to treatment plans and improved satisfaction with health care services (Delaney, 2015).
A further increasing focus of person-centred health care in recent years, especially in the aged care and disability sectors, has been the concept of dignity of risk. The Aged Care Quality Standards have as their foundation “Standard 1: Consumer Dignity and Choice,” which reiterates the focus on this concept of dignity of risk (Aged Care Quality and Safety Commission, 2019). Dignity of risk refers to the right of health care consumers to make their own decisions about their care and services, including their right to take risks (Aged Care Quality and Safety Commission, 2019). Health care organisations and providers therefore need to consider both risk management and their duty of care in provision of services, as well as respecting a person’s rights to make their own decisions. Ultimately, if a person makes a health care decision that is potentially harmful, the health care provider has a responsibility to ensure the person understand the risk(s) associated with their decision, as well as how these risks could potentially be managed (Aged Care Quality and Safety Commission, 2019). Ultimately, the focus is on collaborative health care and supporting people to make decisions which help them live their life the way they choose (Aged Care Quality and Safety Commission, 2019).
These considerations have led to the increasing use of shared decision-making frameworks when working with people making decisions which pose a higher than expected risk to their health.
Shared Decision-Making Frameworks
Shared decision-making frameworks can be a useful tool to consider the many factors involved in decisions around eating and drinking against speech pathology recommendations. Decisions around eating and drinking can impact on a person’s well-being and health, and be influenced by someone’s personal, religious and cultural beliefs, values and needs. The treating team need to consider these factors in the context of a person’s decision-making capacity and any individual circumstances such as the likely severity of risk to a person’s health when developing a plan to implement a decision to eat / drink at risk.
Shared decision making occurs when health care providers and recipients of health care work together to make a health care decision that is best for the individual. Shared decision making involves discussion of a person’s current medical condition and illness trajectory and discussing options for treatment and care with consideration of their potential benefits and limitations. This information is informed by evidence-based practice and the professional’s knowledge and experience. The person’s individual circumstances, including their values and priorities, are also a key component of this discussion and should underpin an agreed care plan. People have the right to change their mind about a previously agreed plan, including withdrawing or withholding medical interventions that they perceive to be burdensome or non-beneficial (Elwyn et al., 2017; Australian Commission on Safety and Quality in Health Care, 2019b).
Shared decision making has become an increasing focus of health care providers due to research indicating that:
- People are less informed and involved in making decisions about their health care than they would like to be;
- Shared decision making can improve satisfaction with care and leads to better quality decisions;
- People using evidence-based decision aids have improved knowledge of the options, more accurate expectations of possible benefits and harms, and feel that they had greater participation in decision making than people receiving usual care;
- Better-informed people make different, often more conservative and less costly choices about their treatment, because the information provides a realistic appreciation of likely benefits and risks of treatment, and therefore enables decisions about the potential outcomes in a more considered way (Australian Commission on Safety and Quality in Health Care, 2019b, paragraph 2).