Taste Safe is a game changer for people who can’t eat orally

There is much more to mealtimes than simply the gaining of adequate nutrition. The sensory enjoyment of the flavours of favourite foods is just one other component in a complex social and emotional experience. Nurturing loved ones by preparing and serving nutritious meals is a well-known ‘love language’ across many cultures. Caring for our children by feeding them well and watching them experience the warmth and joy of participating in family meals is an invaluable part of the parenting role. As anyone who has ever lost the capacity to eat, or cares for someone who has, will tell you – breaking bread with family and friends plays a huge role in our social and emotional lives that is not easily replicated.

Generally, dysphagia is managed through the application of risk minimisation strategies and compensatory techniques, including texture modifications and the exclusion of foods/drinks considered to be ‘high risk’. When a person’s eating and drinking is considered to be so impaired that they cannot consume anything orally without incurring significant risk they may recommended to cease all oral intake and live nil-by-mouth. Despite the potentially life-threatening nature of dysphagia, there is a relatively high percentage of individuals (between 21.9% and 51.9% according to studies reviewed by Krekeler et al. 2018) who choose not to adhere to speech pathology recommendations for the management of the disorder. This includes people who have been determined as nil-by-mouth by their medical team, are placed on long-term enteral feeding, and choose to continue to eat and/or drink ‘at risk’. As allied health practitioners are increasingly supporting people in a much more person-centred model of practice than ever before, this means that there is increased acknowledgement of a person’s right to dignity of risk. This may involve shared decision-making, consideration of how a person’s wishes to continue to eat and drink orally can be accommodated while minimising the impact of this choice and ensuring that a person is educated and informed (Kenny 2015). Practitioners are aware that there is potential for non-adherence to recommendations that are life-altering and may be seen as restrictive, and want to be able to support individuals to choose safer options that can still satisfy some of their desire to experience the pleasure of food.

It is often the case that a person being considered for long-term enteral feeding does not have the capacity to make this life-changing decision unassisted, and may indeed be fully dependent on a loved one to decide on their behalf, with the input of their medical team. The decision-making process can be very difficult, with surrogate decision makers often citing the loss of “normality” as being an inhibitory factor. For people with complex disabilities, eating may actually constitute ‘one of the few normal aspects of their lives’ (Hunt 2007). Even when families do concede that their loved one’s health and wellbeing has improved with tube feeding, they may still admit to ‘miss(ing) the closeness’ of joint participation in mealtimes (Sleigh 2005). The grief associated with the loss of eating and drinking orally should not be underestimated. ‘Mothers often feel they have failed when their children are unable to eat orally’ (Gurierre et al 2003). The decision to implement long-term tube feeding is initiated by health concerns – people with dysphagia can experience malnutrition, dehydration, choking episodes or serious respiratory disease. However, it is also very necessary to consider the impact on a person’s quality of life that is sustained by removing their capacity to participate in eating for pleasure.

The challenge in balancing the perceived “risk” of oral intake with an acceptable quality of life exists for people who are dependent on non-oral feeding for their nutrition and hydration, as well as their carers and the professionals assisting the individual and their support network. A person who is deemed ‘nil-by-mouth’ loses more than just the sensory experience of taste, however the inclusion of a safe taste experience may go some way towards ameliorating these losses. The ‘Taste Safe’ product provides a potentially safer option to those people who would like to continue to experience some of the sensory enjoyment of taste and also provides carers with the opportunity to provide their loved one with a more complete experience of mealtime.

REFERENCES

• Guerriere, D; McKeever, P; Llewellyn-Thomas, H et al (2003) Mothers’ decisions about gastrostomy tube insertion in children: factors contributing to uncertainty. Developmental Medicine and Child Neurology 45 (7) 470-476

• Hebblewhite, G.H. (2012) Grief in the transition from oral to entral feeding among children. Learning Disability Practice 15 (10) 12-16

• Hunt, F (2007) Changing from oral to enteral feeding: impact on families of children with disabilities. Paediatric Nursing 19 (7) 30-32

• Kenny, B (2015) Food culture, preferences and ethics in dysphagia management. Bioethics 29 (9) 646-652

• Krekeler, B.N; Broadfoot, C.K; Johnson, S; Connor, N.P; Roguls-Pulia, N (2018) Patient adherence to dysphagia recommendations: A systematic review. Dysphagia 33, 173-184

• Sleigh, G. (2005) Mothers’ voice: a qualitative study on feeding children with cerebral palsy. Child: Care, Health & Development 31 (4) 373-383

• Speech Pathology Australia (2019) Position Paper. The role of the speech pathologist in supporting informed choice in decision making in dysphagia. Working with ‘risk feeding. Speech Pathology Association of Australia