It is estimated that as many as two million Australians have dysphagia, or difficulty with eating, drinking and swallowing. Dysphagia is associated with many health conditions, and affects people with intellectual disability, cerebral palsy, traumatic brain injury, Parkinson’s, stroke, dementia, myositis, head and neck cancer, and older people.
The study, led by Professor Bronwyn Hemsley from the University of Technology Sydney, has just been published in the Journal of Law and Medicine. It examined the coronial inquest findings into the deaths of three Australians and one Canadian in residential care in 2018-2021.
“Choking and aspiration pneumonia, caused by inhaling food or fluid into the lungs, is a leading cause of premature death in residential care,” said Professor Hemsley.
“But there is a lot that disability and aged care service provider organisations can do to help prevent this. People with dysphagia have the right to expect proper support and safeguarding at mealtimes.
“Deaths from choking on food can be prevented with the appropriate access to health professionals, training of support staff in safe mealtime assistance, interventions to improve the texture and nutritional value of the food, and support staff providing enough supervision during mealtimes in supported accommodation” she said.
The study found that deaths linked to dysphagia are due to services not providing the type of food texture recommended for the person, failing to document difficulties or make referrals to health professionals, failing to read the person’s mealtime management plans, or failing to provide enough supervision during the meal to assist, or a combination of these issues.
“Importantly, these are issues that reflect on the services needing systems to be improved and in place urgently. Services need to help support their staff who are responsible for these things to have enough time and know what to do to follow through with what is recommended for the person’s mealtimes.”
In Victoria, in 2018-19, 59% of deaths referred to the coroner were from aspiration pneumonia, and in New South Wales the leading cause of death in people with disability living in residential care in 2016-17 was pneumonitis caused by solids and fluids in the lungs.
The cases highlight the need for staff in residential organisations, health care practitioners, support personnel and managers to understand the importance of an appropriate mealtime plan and following through with implementing the recommended diets and mealtime management strategies.
“People with dysphagia are often dependent on others for mealtime assistance, and need supervision and support. They also need regular assessment of their swallowing from a speech pathologist and nutrition from a dietitian to ensure they are provided with food and drinks that are modified in texture or consistency if needed,” Professor Hemsley said.
“Appropriate staffing ratios are important to reduce the risk of choking and aspiration pneumonia, and the current crisis in aged care staffing is a significant issue. Better funding for appropriate, healthy, and visually appealing texture-modified food is also important.”
The study is part of a wider research and training program on understanding and helping people with dysphagia, and includes the development of the UTS Open Course ‘Co-Creating Safe and Enjoyable Meals’, as well as input into the design of the NDIS online mini-module which is available online to everyone supporting people with swallowing difficulty.
“The aim of our research is not only to prevent hospitalisation and death of people with disability or older people from choking and aspiration pneumonia, but also to make mealtimes enjoyable and social for everyone with swallowing difficulties. All of us should know what to do if our loved ones or people we support are having difficulty eating or drinking, and should look at the NDIS online training and become more familiar on how to respond to help prevent these tragic and premature deaths.”
Both the Aged Care Royal Commission and the Disability Royal Commission have highlighted the importance of appropriate care for people who have dysphagia. Online support and training modules can also assist family members who care for individuals at home.