Advance Care Planning

Key messages

Advance Care Planning (ACP) is a process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known to guide decision-making at a future time when that person cannot make or communicate their decisions.
The involvement of family members in ACP ensures that the patient's values and preferences for future health and personal care are understood and respected, allowing for better decision-making on their behalf.
ACP may lead to an ACP document—a document specifying the types of medical treatment a person would or would not want in the event they are incapacitated.
Early ACP discussions, ideally at diagnosis or during stable phases, lead to better preparedness and less emotional distress for patients and families.
Decision aids in ACP improve patient knowledge and reduce decisional conflict, but their effectiveness in increasing ACP document completion remains mixed.

Related evidence

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Evidence summary

According to the Commonwealth Government’s National framework for advance care planning documents (1.83MB pdf), ACP is a process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known to guide decision-making at a future time when that person cannot make or communicate their decisions. [1]

ACP might lead to the creation of an advance care directive, which is a voluntary, person-led document completed and signed by a competent person that focuses on an individual’s values and preferences for future care decisions, including their preferred outcomes and care. [1] Advance care directives are recognised in each state and territory under advance care directive legislation or common law. The nomenclature of advance care directives can vary both within Australian state and territories and internationally. However, broadly speaking they are legally binding documents which come into effect when an individual loses decision-making capacity. [1]

Comparatively, advance care plans are documents that capture an individual’s beliefs, values and preferences in relation to future care decisions, but are not legally binding due to the person’s lack of competency, insufficient decision-making capacity or lack of formalities. [1] Substitute decision making are decisions made by an appointed decision maker on behalf of the individual, whose decision making is impaired. [1] An advance care plan for a non-competent person is often very helpful in providing information for substitute decision-makers and health practitioners and may guide care decisions. [1] An advance care plan may be oral or written, with written being preferred. [1]

The primary goal of ACP is to ensure that medical care and health treatment aligns with the patient’s values, beliefs and preferences at a future time when that person cannot make or communicate their decisions. [2] Identifying patients’ goals of care is covered in more detail in other clinical evidence summaries, patient autonomy, dignity and choice and communication approaches.

It is a common assumption that ACP is only a relevant discussion to have when someone is approaching end of life. Registered and non-registered health professionals providing care to anyone with a serious illness require capability to facilitate these conversations effectively. [1] The National Quality Standards for aged care, general practice and health services all promote ACP. [1] Individuals can also choose to engage in ACP with other non-health professionals, such as friends or family.

Statistics on ACP usage indicates varying levels of engagement across different populations. In the general population, only a minority of adults have completed ACP documentation, with international studies showing rates ranging from 18% to 36%. [3] Among older adults, the completion rates are slightly higher, yet still less than half, reflecting the need for greater public awareness and facilitation of ACP. [3] ACP engagement is particularly low among CALD populations, Aboriginal and Torres Strait Islander peoples and economically disadvantaged groups, highlighting significant disparities that need addressing. [4]

Key points in ACP include the necessity of initiating discussions early and revisiting them regularly as the patient’s condition evolves. [5] Early ACP discussions, ideally at the time of diagnosis or during stable phases of illness, lead to better preparedness and less emotional distress for patients and families. [5] Additionally, the involvement of family members in ACP is crucial, as it ensures that the patient's wishes are understood and respected, thereby facilitating better decision-making during critical times. [5]

Discussing goals and preferences with patients and their families significantly reduces hospital admissions and aggressive care measures in patients with life-limiting conditions. [6] Integrating Shared Decision Making (SDM) with ACP provides a comprehensive approach for patient-informed choices, especially in cases with high-risk treatment complications. [7] The use of decision aids in ACP has been shown to improve patient knowledge and reduce decisional conflict, helping patients articulate their values and preferences more clearly. [3,8] However, their effectiveness in increasing the completion of advance care planning documents and influencing treatment plans remains mixed. [3] Adhering to International Patient Decision Aid Standards (IPDAS) can enhance the effectiveness of these tools by ensuring they provide comprehensive, unbiased information tailored to the patient's needs. [3] Structured, ongoing communication and support facilitate effective ACP.

The COVID-19 pandemic highlighted the critical importance of ACP, particularly for older adults and vulnerable populations. [9] Social distancing measures, visitation restrictions and the rapid progression of the disease created unique challenges for traditional ACP discussions, necessitating the use of telehealth and virtual platforms to facilitate ACP. [9] These innovations proved effective in promoting ACP during the pandemic, emphasising the need for flexibility in ACP practices to accommodate such crises. [9] Training for clinicians and collaboration within care teams were identified as key facilitators for successful ACP implementation during this period, ensuring that patients' preferences continued to be documented and respected despite the constraints imposed by the pandemic. [9]

Equity and access

People from CALD backgrounds and Aboriginal and Torres Strait Islander peoples face substantial barriers to engaging in ACP partly due to cultural beliefs that emphasise family decision-making and spiritual guidance. They may also have a deep-seated mistrust of the healthcare system stemming from historical and ongoing discrimination. [4] This mistrust, combined with a lack of awareness about the concept of ACP, results in lower rates of ACP engagement and ACP documents being made. [4]

Socioeconomic status (SES) also plays a critical role in ACP engagement. Individuals with higher education and income levels are more likely to complete ACP, a disparity attributed to better access to healthcare resources, higher health literacy, and more opportunities to engage in ACP discussions. [10] Conversely, people living in lower SES neighbourhoods often face limited access to quality healthcare and educational resources necessary for ACP. [10] This socioeconomic divide underscores the need for targeted interventions to support ACP engagement among economically disadvantaged groups. [10]

For individuals in prison, ACP is complicated by the institutional environment, lack of privacy, and potential mistrust of the healthcare system. Effective ACP in these settings requires tailored approaches that address the specific barriers faced by these populations, including enhanced training for healthcare providers and the use of telehealth to overcome logistical challenges. [11] Additionally, providing ACP for individuals who use drugs and/or alcohol requires a multidisciplinary, flexible approach to address their complex needs. [4]

Healthcare provider biases and lack of cultural competence further impact ACP participation among underserved populations. Providers may make assumptions about patients' preferences based on their ethnicity or SES, leading to less effective ACP discussions. [12] Training healthcare providers in cultural competence and effective communication strategies is essential to improve ACP engagement among diverse populations. [12] By addressing these biases and providing tailored support, healthcare systems can help bridge the gap and ensure equitable care planning for all patients, regardless of their social and structural determinants of health. [12]

Care context

ACP is relevant across a range of care settings, including but not limited to hospital, primary care, community care and care homes.

In oncology settings, ACP is often underutilised despite its importance. Oncologists face challenges such as prioritising curative treatments, managing patients' and families' expectations and dealing with the emotional difficulty of end-of-life discussions. [13] Completion of ACP documents among cancer patients is influenced by factors such as lack of knowledge, social support, and access to healthcare systems. Addressing these factors can improve ACP engagement.[14] Integrating ACP into routine oncology care and providing specific training for oncology staff can improve the uptake and effectiveness of ACP in these settings. [13] Regular and early ACP discussions help ensure that patients' preferences are respected and reduce the emotional burden on both patients and families. [13]

In paediatric care, ACP involves family-centred discussions that consider the child's developmental stage, requiring specialised communication skills to engage both the child and their family effectively. [15,16] Research indicates that paediatric ACP leads to better decision-making, reduced parental stress, and improved alignment of care with the family's wishes. [15] Institutional policies and support systems are crucial to facilitate paediatric ACP and ensure consistent and effective practice. [15]

Care home settings present unique opportunities and challenges for ACP. Early and regular ACP discussions in nursing homes is essential for aligning care with patients' wishes and reducing emotional burden on families. [17] Timely initiation of these discussions is critical for effective ACP in care homes. [17] ACP interventions, particularly those including education on the terminal nature of conditions and comprehensive care approaches, reduce emergency department visits and ambulance calls among nursing home residents. [18] ACP training for care home staff improves their confidence and competence in initiating ACP discussions, leading to better understanding of residents' preferences and increased completion rates of advance care planning documents. [19,20] These programs lead to better understanding of residents' preferences, enhanced communication with residents and families, and increased completion rates of advance care planning documents (Ng 2022). Ongoing support and resources are necessary to sustain ACP practices in care homes and ensure that residents' wishes are respected. [19]

Implications for families and carers

ACP provides significant benefits for families and carers by ensuring that a patient's values and preferences are clearly understood and respected, which facilitates informed decision-making during critical moments. [2,3] Proactive involvement in ACP discussions helps reduce the emotional burden on families, offering them peace of mind knowing that they are honouring their loved one's wishes and improving overall communication between family members and healthcare providers. [5,6] Additionally, ACP helps families feel more prepared and less anxious about future healthcare decisions by providing clear guidance on the patient’s preferences, which is especially important when the patient can no longer communicate their wishes. [4] Ongoing education and training for families about ACP can enhance their confidence and competence in making future healthcare decisions, ensuring that they can effectively advocate for their loved one's preferences. [2,3]