Ongoing Assessment
Ongoing assessment of changing needs and preferences is critical.
- Unrecognised changes in needs: For example, a person may lose the ability to safely swallow food, fluids, or medication.
- Unnecessary harm or suffering: If changes are not addressed, the person may experience avoidable distress.
- Inappropriate nutrition and hydration: Support may not align with the person’s needs or preferences, leading to discomfort or harm.
- Unmet preferences: Food and drink may not match the person’s tastes, spiritual or cultural needs, or dietary requirements.
- Use appropriate tools to assess the person’s needs regularly.
- Review and keep care plans up to date, reflecting the person’s preferences and needs, and make them accessible to all staff.
- Adopt a team approach by involving professionals like dietitians, speech pathologists, or palliative care specialists when needed.
- Watch for swallowing or choking issues and assess the person’s ability to eat and drink comfortably.
- Review care plans, including Advance Care Directives, to ensure they reflect current needs and preferences.
- Gather feedback from those involved in the person’s care.
- Examine incident reports to evaluate the effectiveness of risk management strategies and adjust as needed.
Needs and preferences will likely change during the palliative phase
A person’s nutrition and hydration needs will often change as they move through the palliative phase. In the early stages, food and fluids can support tissue repair, wellbeing, and help prevent infection. In the final weeks and days, people may have physical difficulties with eating and drinking and may lose the desire or need for food.
Common challenges include:
- Malnutrition or dehydration.
- Wasting syndrome (cachexia) - severe weight and muscle loss, often seen in advanced cancer, heart failure or COPD.
- Swallowing problems (dysphagia) - making it hard to swallow food, fluids or medication safely.
- Physical obstructions that prevent eating or drinking.
- Pain or discomfort made worse by eating or drinking.
- Weakness or fatigue, making it difficult to eat or drink.
- Loss of appetite or thirst.
Regular assessment and conversation with the person and their care team can help ensure their needs and comfort are supported as they change.
The person has a right to refuse nutrition and hydration
Dignity of risk means a person has the right to make their own choices about their care, even if those choices come with some risk. When a person chooses to eat or drink in a way that may not be safe, this is called “eating and drinking with acknowledged risk”. This means the risks have been talked about, understood, and agreed to.
A person may choose to:
- stop eating and drinking or refuse tube feeding and fluids - this is their right and must be respected.
- keep eating and drinking, even if there is some risk – in this case, they should be supported, and the risks should be talked about with them.
It is important to respect their choices while making sure they have the information and support they need.
Regular assessment is needed
Regular assessments are needed during the palliative phase to make sure care is personalised and meets the person’s changing needs, goals, and preferences for food and drink, and/or artificial nutrition.
When a person is nearing the end of life, reassessing their needs is especially important to make sure care stays responsive and appropriate.
A nutrition and hydration assessment should be part of a broader care plan that looks at the person’s overall needs and wishes. The Palliative Care Standards highlight the importance of thorough assessment and care planning to improve comfort and quality of life. Similarly, the Strengthened Aged Care Quality Standards require aged care providers to regularly assess and plan care based on what the person needs and wants.
Regularly reassess:
Regularly check and reassess if needed:
- Care goals, as they may change at different stages of palliative care.
- Food and drink preferences, including:
- what they like to eat and drink
- when and where they prefer to eat and drink
- what makes mealtimes enjoyable for them
- any special dietary needs (e.g. food intolerances, cultural or religious preferences).
- Any difficulties with eating and drinking, such as:
- pain or discomfort
- oral health problems
- changes in behaviour, memory, or ability to use utensils
- needing physical help to eat and drink, including positioning.
- Whether a referral to a specialist (e.g. dietitian, speech pathologist or occupational therapist) is needed.
Regular assessment helps ensure the person gets the right support to eat and drink in a way that is safe, comfortable, and enjoyable.
A multi-disciplinary approach to nutrition and hydration assessment may be needed
Sometimes, getting help from a specialist health professional can make a big difference in supporting a person’s nutrition and hydration needs.
- A dietitian can provide advice on managing changes in appetite and oral intake as well as adjusting food textures to maximise enjoyment and nutritional intake.
- A speech pathologist can assess and support people who have swallowing difficulties, helping them find safe ways to eat and drink or suggesting suitable food and drink modifications. If a person chooses to eat and drink with acknowledged risk, a speech pathologist can also help with strategies to support them safely.
Using a team approach ensures the person gets the best possible care while respecting their choices.
Much can be done to enable continued nutrition and hydration
There are many ways to support a person eat and drink comfortably during the palliative phase:
- Make mealtimes enjoyable – set up a calm, comfortable space and consider their preferences (e.g. dining with others or eating alone).
- Offer favourite foods and drinks – be flexible, as their preferences may change.
- Adjust portion sizes – smaller meals and snacks throughout the day may be easier to manage.
- Time meals well – serve food when the person has the most energy.
- Use fortified foods or drinks – nutrient-rich options, including suitable nutritional supplements, can help when appetite is low.
- Modify food texture if needed – softer foods, along with gravies, sauces, and condiments if suitable, can enhance flavour, make eating easier, and help reduce the risk of choking.
- Provide finger foods – easy-to-hold foods can help people who have trouble using cutlery or who like to move around while eating, such as those living with dementia.
- Offer supported feeding when needed – assist the person with eating and drinking while maintaining their dignity, comfort, and independence as much as possible.
- Support mouth care – keep lips and mouth clean and moist to improve comfort.
- Consider artificial nutrition and hydration – this should only be used if appropriate and with the older person’s consent (or their substitute decision-maker if they cannot decide).
These strategies help maintain comfort, dignity, and enjoyment of food and drink while meeting the person's needs.
Whilst it is important to prevent or treat malnutrition in palliative care, the focus should be on maintaining quality of life, supporting the enjoyment of eating and drinking, and creating a positive dining experience while reducing risk wherever possible.
Supporting the dining experience:
Creating a comfortable and enjoyable dining experience can help a person eat and drink more easily during the palliative phase. Consider the following:
- Ensure comfort and positioning – Help the person sit upright in bed or a chair to make eating and drinking easier and safer.
- Make food and drink accessible – Place meals, snacks, and water within easy reach.
- Use helpful aids and equipment – Modified cups, plates, cutlery, plate guards, or contrasting plates and placemats can assist with eating.
- Have communication aids available
- Respect dining preferences – Ask if they’d like to eat alone, in a shared dining space, or with visitors.
- Facilitate shared meals – Support opportunities to eat with family and friends if desired.
- Encourage use of dentures, glasses, or hearing aids – These can enhance comfort and sensory enjoyment.
- Use communication aids – Provide pointing boards, picture menus, or other visual aids to help the person choose what they would like to eat or drink if they have difficulty speaking.
- Provide gentle support if needed – If assisting with feeding, check how they’d like to be supported, maintain eye contact for prompts, and watch for signs of swallowing difficulty.
- Minimise distractions – Reduce background noise and interruptions to create a calm setting.
- Allow plenty of time – Ensure the person doesn’t feel rushed. By considering individual preferences and needs, we can create a positive dining experience that supports nutrition, hydration, and dignity.
By considering individual preferences and needs, we can create a positive dining experience that supports nutrition, hydration, and dignity