Statement by Dr Melanie Wroth

Statement by Dr Melanie Wroth, Chief Clinical Advisor, Aged Care Quality and Safety Commission.

Residential aged care providers have a significant role in caring for their residents as they approach the end of their lives, and as they die. This is a relatively common situation for residential services, and includes providing ongoing person-centred and patient-focussed care. 

The wishes of the resident and the goals of care need to be assessed and updated dynamically in response to changes in clinical status. This may involve provision of palliative care for some time leading up to the end-of-life, where the person’s disease and clinical status is no longer curable and where treatment aimed at prevention or cure may no longer be appropriate or desired. 

The active care of a patient in a holistic way to effectively address pain, unwelcome symptoms and spiritual, psychological and social needs and wishes is the aim and paramount consideration. This includes the assessment of appetite, ability to eat and absorb food, and the management of food and fluids. These assessments, strategies and plans can be supported by dietitians and speech pathologists when appropriate. The goal is to achieve the best possible quality of life for the person and their loved ones at this important phase of life, and the focus often changes to eating for comfort and pleasure. 

Regarding feeding and weight at the end-of-life, the above palliative care principles continue to apply. Unplanned weight loss as a reportable Mandatory Quality Indicator specifically excludes residents receiving end-of-life care. Information is available on the Department of Health and Aged Care website

Appetite loss, weight loss, inability to eat and drink, inability to absorb nutrients and declining nutrition are all common issues as people approach the end-of-life. Each of these issues has many possible contributing causes and each may need assessment to identify the most likely causal and influencing factors. The treatment and management of each contributor and each symptom will vary from person to person, and this is the essence of a good end-of-life and palliative care approach. 

Further, the mealtime and feeding approach may need to change significantly over time to respond to the changing clinical status of the person and their wishes. We want providers to prioritise the comfort and dignity of residents (at all times, but especially at end-of-life) and this may include ceasing attempts to feed a resident at the appropriate time and after appropriate consultation, consideration and review.

Many people find that they do not feel like eating near the end-of-life. Dietary supplements have a limited role in this situation, and indeed in nutrition in general. When a person does not want to eat and drink for whatever reason, then a supplement may very well not help as it may also be unwanted. 

Elderly person in wheelchair is at a park with their carer

The Aged Care Quality and Safety Commission would generally prefer to see a focus on providing appetising and desirable food and drink that is appealing to the person (in its quantity, appearance, temperature, taste, aroma, etc), and also maximises the nutritional content of foods and drinks the person does want to eat. If a person’s preference is for a dietary supplement then it may form part of the care plan. Forcing food and drink on someone who does not want it is not person-centred care, and this includes supplements. Encouraging people to eat and drink items that they can accept and that will give them pleasure is the preferred approach. 

In anticipation of the revised Aged Care Quality Standards (due to be introduced as part of the new Aged Care Act in July 2024), the Commission is considering what other information would be helpful, and end-of-life context is one area already flagged.

In relation to triggers for the Commission to take regulatory action, we take a proportionate, risk-based approach that is fair and sensible. This approach takes into account several factors including assessment of a provider’s performance against the Aged Care Quality Standards. We are of course aware of the potential drop in weight towards the end of a person’s life and would consider weight loss in the person’s individual context.

Some providers do specifically record a patient as entering end-of-life care. This can be helpful in a record-keeping sense from the Commission’s perspective and we encourage providers to maintain these records of ongoing assessment and progress. It is important for aged care providers to deliver best practice person-centred care to older Australians in accordance with their needs as they change over time, and this includes care that is appropriate to the end-of-life stage. 

The Commission has a dedicated Food, Nutrition and Dining hotline (1800 844 044) where consumers and aged care providers can ask questions and seek support from speech pathologists and dietitians, including on the topic of provision of food and fluids towards the end of a person’s life. The Commission also has a number of resources available on our website on food, nutrition and dining