What is advance care planning?
Advance care planning is a voluntary process where a person thinks about and shares their values, beliefs, and preferences for future health and personal care. This helps guide decisions if they are unable to make or communicate their own choices. [1-3] This process involves discussions between the person, their family, and health and aged care professionals. It may be a conversation of many steps to cover a person’s values, beliefs and preferences that may change and evolve over time. [1,4]
Conversations are valuable in their own right but completing an advance care planning document can provide important guidance for future care decisions. [1] They may also include the nomination of a substitute decision-maker. [1] These documents include advance care directives and advance care plans. [1] Each Australian state and territory has specific legislation governing advance care directives which affects their recognition and implementation across borders. [1,2,5]
An advance care plan records a person’s beliefs, values, and care preferences for future decisions. An advance care plan may be oral or written, with written being preferred. While not legally binding, it can still guide substitute decision-makers and health professionals. [1,6,7]
An advance care directive is a legal document that outlines the types of care and medical treatment a person wishes to receive or avoid, and records who has been chosen as a substitute decision-maker to make decisions on the person’s behalf when the person is unable to do so. [2,6,7] These directives are designed to guide health and aged care professionals and the person’s family in situations where the person is unable to express their wishes due to serious illness, frailty, or cognitive incapacity. [2,3] These can be particularly important in the care of older people approaching the end of their life. [8] Advance care directives are legally binding in most states and territories in Australia, but there are some variations. [2]
Advance care planning does not always result in an advance care document, and an advance care document does not guarantee that advance care planning has occurred as a person can create an advance care document without talking to others. [2,3] Having multiple, gradual discussions about advance care planning as part of usual care allows the person and their family to take the time they need to explore and consider their options and preferences. [1,9,10] Regular reviews and updates to the advance care planning documents are essential to reflect changes in the person's health or their preferences over time. [4,9,11]
Why advance care planning matters in aged care
Advance care planning is particularly relevant for aged care as many older people have frailty and multimorbidity (multiple health issues) including cognitive problems which can affect their ability to make decisions about their end-of-life care. [12] It provides some structure to the way care preferences can be discussed and documented.
Advance care planning is an important step to ensure that care aligns with an older person’s values and wishes, especially when they have a life-limiting illness or are nearing the end of life. [5,8,11,13,14] It can lead to greater satisfaction with care and improved quality of life. [4,5,15] Advance care planning can reduce avoidable hospitalisations and unwanted and invasive treatments that do not contribute to the comfort or wellbeing of older people and increases the likelihood of the person dying in their preferred place of death. [11,13,16-18]
It also supports families and carers by providing clear guidance on the person's preferences, reducing the emotional burden and potential conflicts when making a decision on the person's behalf. [11,15]
Advance care planning is central to Standard 1 and Standard 3 of the Aged Care Quality Standards whereby aged care services are to place the older person’s needs, goals, and preferences at the centre of their quality and care systems and tailor care to each person. [6] Reviewing advance care planning documents is also central to Outcome 5.7: Palliative and end-of-life care (Action 5.7.2)
What the evidence tells us
Most older people are willing to have discussions about their future care [4,12,14,19] even though talking about death or transitioning from curative to palliative care can feel uncomfortable for many. [5,9,10] Relatives and healthcare professionals often find it difficult to start these conversations, particularly if they are delayed until a crisis occurs or when someone is entering aged care. [10]
Aged care staff may feel unsure about how to start these discussions or who should take the lead. Finding the 'right time' can also be challenging because of the unpredictable nature of disease progression. [5,9,14,16,19] The most appropriate time to initiate advance care planning discussions is when older people are not experiencing distressing symptoms. [14] Older people (particularly with long-term and degenerative conditions) and their families often look to health and aged care professionals to initiate advance care planning discussions especially those who know them well. [4,9,11,19] Choosing the time to initiate advance care planning for older people should centre on the older person and families. [10] Identifying conversation triggers or picking up signals may be a good way to initiate advance care planning. [10]
Having multiple, gradual discussions about advance care planning as part of usual care allows the person and their family to take the time they need to explore and consider their options and preferences. [1,9,10] Regular reviews and updates to the advance care planning documents are essential to reflect changes in the person's health or their preferences over time. [4,9,11]
Education can be helpful for aged care staff who initiate and facilitate advance care planning conversations. It can strengthen their communication skills for discussing sensitive topics and help them provide clear, accurate information about the benefits and limitations of various care options. [5,9,11,12,14,16,20] Staff should also be familiar with legal aspects of advance directives as well as the procedures for documenting, updating, and securely storing any documents. [1,3] Clear policies and procedures, standardised documentation, and integrating advance care planning into existing workflows can help streamline this process within an aged care service. [5,8,12,15,20]
Advance care planning documents should clearly communicate a person’s preferences in a way that others can easily understand and follow. [1] For advance care planning documents to be effective, they must be easily accessible when needed. [1] Where possible, decision-makers and health practitioners should also act in good faith to honour the beliefs, values and preferences set out in an advance care directive or an advance care plan. [1]
General practitioners (GPs), nurse practitioners, nurses, and social workers can all play an important part in advance care planning. [3,5,11,14,17] For people with a life-limiting illness it is helpful to begin advance care planning discussions at diagnosis and revisit them during changes in health or care settings (such as moving between home, hospital, or residential aged care). This allows enough time to explore the person’s values and care preferences with family members and healthcare professionals. [4,11,20]
Points for starting advance care planning conversations include [21]:
- the person is likely to die in the next 12 months. This might be based on observations using the SPICT (315kb pdf) or SPICT4ALL (371kb pdf) or a ‘No’ response to the Surprise Question ‘Would I be surprised if this person were to die in the next 12 months?’
- a diagnosis of early dementia or a disease which could result in loss of capacity
- a diagnosis of a metastatic malignancy or organ failure, indicating a poor prognosis
- clear signs of deterioration or recent or repeated hospitalisation
- new significant diagnosis (e.g. metastatic disease, transient ischemic attack)
- the person is a resident of, or is about to enter, an aged care facility.
Reviewing an advance care planning document can be particularly relevant in response to certain triggers such as an onset or change of a certain illness (including dementia), a change in family dynamics or relationships, or the arrival of new medical technologies and treatment options. [1,10]
Care of people with dementia
Advance care planning should begin in the early stages of a major neurocognitive disease while the person still has the cognitive ability to make their own decisions. [3,11] The process of advance care planning can help prepare the family and surrogate decision-makers for their role in future care decisions. [11] Despite this preparation, family and surrogate decision-makers will often need support from aged care staff when they are enacting decisions on end-of-life care on behalf of persons with dementia. [11]
Older residents with dementia who still have some decisional capacity can be actively engaged in their own decisions, with support from aged care staff. [3,4] Important considerations around end-of-life care for a person with dementia often include increased difficulty swallowing and reduced fluid intake. [3] Clear information in an advance care directive respecting food and fluid intake can facilitate decision-making in end-of-life care. [3]
Cultural considerations
Cultural factors are important in advance care planning for older people, as they shape their values, beliefs, and preferences about end-of-life care. When health and aged care professionals understand these cultural nuances, they can approach advance care planning discussions in a way that is respectful of a person’s culture, values and traditions. [22]
In many Asian cultures, talking about death is seen as taboo, which can make it challenging to have open discussions about advance care planning. If end-of-life decision-making is dominated by family members and doctors, it can conflict with the core principle of advance care planning - keeping the person at the centre of decisions. [23,24] In Indigenous communities, decision-making often emphasises a collective approach, involving extended family and community members, rather than focusing solely on individual autonomy. [22,25]
In some cultures, discussing death is discouraged as it may be seen as disrespectful, extinguishing hope, inviting death, or causing emotional distress, depression, and anxiety. [22] When health and aged care professionals understand these cultural nuances, advance care planning discussions can be respectful and aligned with the person's cultural context. The cultural diversity among aged care staff in Australia is likely to have an influence on how conversations are approached regarding advance care planning. [26]
Implications for families
Advance care planning can help families have a clearer understanding of their relative’s care preferences reducing uncertainty and stress when they need to make decisions on their behalf. [15,16] Advance care planning also encourages open conversations about end-of-life care, [16] enabling families to prepare emotionally and mentally for the future while reducing the likelihood of conflicts among family members. [14,15] It can help families to communicate more effectively with care providers to plan care that reflects their relative’s values, promoting a person-centred approach to care. [9] Honouring a relative’s wishes can enhance a family’s satisfaction with the care provided and support their ability to cope with grief after a loss, knowing their relative’s preferences were respected. [12-14,16]
Complex family relationships can make the advance care planning process more challenging [9,14] requiring specific skills such as negotiation, advocacy, and conflict resolution, as well as confidence from those facilitating the discussions. [3,9] Social workers may be helpful. [3,9,14]
Considerations for home care
The number of people receiving community aged care services in Australia who use advance care planning is not well known. However, many of these older Australians could benefit from it, as they often have long-term health issues that need complex care. Talking about advance care planning in community aged care settings can also be helpful because it takes place in the comfort of the home, where people feel more at ease. [5,20] Face-to-face conversations with the person and family members over multiple visits rather than at a single intervention can help with the completion of advance care documentation. [20]
Page updated 04 April 2025