Personal Preferences
The person's preferences about eating and drinking should be understood and supported.
- The person stops eating or enjoying food, not because they need to (or want to) but because they are not asked about what they want to eat, because choices are not available to them or because they are not supported to eat.
- The person does not have good information about options (and risks) to inform their choices about eating and drinking.
- The person is not supported to experience social enjoyment from eating and drinking including with visiting family and friends.
- Take an individualised approach to understand and support the person’s preferences around what they eat and drink, when, how and who with. Recognise that their needs and preferences will change regularly.
- Ensure the person is given ongoing opportunities to express their preferences in relation to what they eat and drink, when, how and who with. Ensure they are given a range of food and drink choices that are right for them.
- Know whether the person has an Advance Care Directive or other advance planning documents and check their preferences about eating and drinking as well as artificial nutrition and hydration. Ensure these documents are available to care staff and inform delivery of care.
- Seek to understand why the person is not eating or drinking as would be expected. For example, was the food not desirable to them? Served at incorrect temperature? Were they not supported to eat? Are they having difficulty feeding themselves? Have their needs changed such that they no longer want to eat? Is it no longer comfortable for them to eat or drink?
The person is central to decisions about nutrition and hydration
The person who is dying is central to decision-making. They will have their own preferences about whether and how to continue to eat and drink, and if they want modified food or artificial nutrition and hydration to prolong their life. This may come from their cultural or faith traditions, or their personal beliefs and values.
Preferences about what they want to eat, when they want to eat, how they want to eat and with whom should be understood and respected, and cultural and spiritual considerations supported.
The person has a right to refuse nutrition and hydration
Dignity of risk is a person’s right to make their own decisions about their care and services, including making choices that involve some risks. A person may choose not to eat and drink or to be artificially fed or hydrated. That is their right and it should be respected. Equally, they may choose to continue to eat and drink in a particular way, despite associated risks. This should also be supported, following discussions with the person about the potential risks to them.
Relevant information is needed to inform decisions about nutrition and hydration
Standard 1 of the Aged Care Quality Standards describes the rights of the consumer to dignity and respect and to make choices about their care and services. This supports people to have choice and control over their end of life, including their food and drink choices. Strengthened Aged Care Quality Standards are being developed and will likely include more detailed requirements about food and nutrition including the right of older people to choose what, when, where and how they eat and drink.
When engaging with a person (and/or their family and friends or substitute decision-maker) about whether and what they want to eat and drink towards the end of life, it is critical that relevant information is provided such as:
- options that are available, including for modified and artificial nutrition and hydration
- information about impacts and risks of eating or drinking different types of food (or eating or drinking at all).
Preferences may be captured in Advance Care Directives and planning
The Aged Care Quality Standards require providers to undertake ongoing assessment and planning with residents to identify and address their current needs, goals and preferences. This includes advance care planning and end of life planning if the person wishes. If the person has expressed preferences about nutrition and hydration (particularly around the use of modified food and drink, and artificial nutrition and hydration) in an Advance Care Directive or other care planning documents, these should be known and respected.
While some matters relating to nutrition and hydration may be addressed in Advance Care Directives (such as consent to or refusal of artificial nutrition and hydration) the person’s preferences about other matters e.g. what they want to eat and drink (including how and when) may not be covered. It is important to regularly discuss with the person their preferences about food and drink, especially as these may change over time. These preferences should also be documented e.g. in the person’s care plan.
Others may support decision-making
The person may choose to involve their family, friends and health professionals in discussions about eating and drinking, to inform and assist their decision-making. Families and friends should be kept informed about changes to eating and drinking needs (so long as the person has consented to this).
There may be a substitute decision-maker
If the person does not have decision-making capacity (their doctor would normally determine this), decisions about eating and drinking should be sought from the person’s substitute decision-maker. However, even where a person does not have decision-making capacity, they may still be able to indicate preferences about what they want to eat or drink on any given day. These preferences should be respected.