Eating and Drinking with Acknowledged Risks: A Comparison of Japan and the UK

Understanding the barriers and factors that help to make decisions about eating and drinking with acknowledged risks.

Some people with MND and other neurological diseases can have problems with swallowing, which makes eating and drinking difficult as there is a higher risk of food or drink entering the airways by accident (aspiration). It is common for individuals to prefer to eat and drink despite the risks, rather than stick to a modified diet (such as pureed food or thickened liquids) or not eating at all (tube feeding). This is called Eating and Drinking with acknowledged risks (EDAR, otherwise known as 'risk feeding'). While this is a valuable option for some people, for clinicians it is a difficult decision due to ethical dilemmas around the possibility of causing harm. 

This study aims to improve support and remove some of the difficulties in the decision-making process for clinicians and other healthcare professionals. This may include better education and training, further support in the workplace and producing information leaflets. To improve this, the current barriers and facilitators need to be understood. The researchers are conducting a questionnaire to hear about the experiences of healthcare professionals and care workers on making decisions around EDAR.