Advance Care Planning (ACP) - Synthesis

Advance Care Planning (ACP) - Synthesis


At the end of life, people wish to be treated with dignity, have relief from pain and, as much as possible, have some control over what happens to them. Advance care planning (ACP) can help a person’s wishes and preferences be considered by others when they are not able to communicate or to make decisions. [1-10] With an advance care directive (ACD) in place, people are more likely to have care which respects their preferences. [2,6,11] People with an ACD are also more likely to experience fewer unwanted medical interventions, less likely to be moved from their home or community care to a hospital, and less likely to die in a hospital. [3,11]

The legal and policy framework for ACP varies across countries [12] and across states in Australia. [4-6,9,13]

Quality Statement

Overall, the quality of the included reviews is good with systematic reviews being of acceptable to high quality.

Ten systematic reviews relate to ACP for older people in a palliative care or end-of-life context. [3,8,14-21] Eleven systematic reviews relate to ACP for people living with cognitive impairment and dementia, [1,10,17-20,22-25] advanced dementia [15] and their carers. Eight systematic reviews relate to ACP for older people, [12,26,27] and their carers. Eight systematic reviews relate to ACP for older people, [2,25,28] and frail residents. [11,29] Two systematic reviews relate to end-of-life decision-making [30] or surrogate decision-making [7] in a general adult population and one for people living with dementia. [18] Three papers included meta-analysis [26,27,30] and one, a qualitative meta-synthesis. [18]

No guidelines for ACP specific for older people receiving palliative care were retrieved. The Australian Therapeutic Guidelines include a section on ACP. [31] However, Advance Care Planning Australia has published an Aged Care Implementation Guide to assist with implementation of advance care planning in the Australian aged care setting. [32]

Other sources are included to provide context to this topic. [4-6,9,13,32-39]

Most of the primary research has been conducted in USA. [8,11,14,18,24-26,28-30,36]

Evidence Synthesis

Advance care planning (ACP) is a voluntary process of reflecting, discussing and recording preferences and plans for future care should the person lose capacity or the ability to communicate. [1-6,9,10,12,39] Loss of capacity may be temporary (e.g. severe acute illness, delirium), progressive (e.g. cognitive impairment or dementia) or permanent (e.g. stroke or advanced dementia). [28]

The ACP process may include interactive and perhaps multistage discussions between an adult and their family members, their carers [1,5,7-10,39] and relevant health professionals. [1,5,8,34,37,39]

Successfully implementing ACP in residential aged care (RAC) may be complex. [2,10] Health professionals and RAC organisations are seen to play an important role in the successful implementation of advance care planning. [2,10] Having identified the numerous preconditions related to successful implementation of ACP in RAC, Gilissen et al. [2] recommend a whole-system approach. Beck et al. [10] recognise the complexity of ACP in the care of older adults with dementia.

Benefits of ACP are cited in the literature including end-of-life care in line with a person’s wishes, care and/or death in a person’s preferred place, reduced unwanted treatment or interventions at the end of life and reduced regret experienced by carers or substitute decision-makers. [1,8,11,26,27]

Prevalence of ACP

In practice, discussions around end-of-life issues may often not take place or start too late. [8,16,23] Available research suggests that the practice of advance care planning in Australia is not common, particularly when compared with other planning documents such as wills. [9, 37] An audit of the health records of older Australians cared for in 51 sites across different care settings reported the presence of at least one advance care directive in 25% of cases. [35] Prevalence rates were highest in residential aged care facilities at 38%, but only 17% of people with dementia had formally appointed a substitute decision-maker. In that study use of My Health Record to record documentation was very low (less than 1%). A recent telephone survey of 1, 175 Australian adults reported that 12% had an Advance Care Directive (ACD), with highest completion rates among women and adults aged 55 years and older. [37]

Internationally, there is a low prevalence of advance care planning in residential aged care [2,7,10] despite a majority of residents welcoming the opportunity for such a discussion. [2]

Elements of advance care planning and decision-making

A possible outcome of care planning discussions is an advance care document. [38] Advance care plan documents state a person’s preferences about their health and personal care and what they consider their preferred health outcomes to be and they can be in written or spoken form. [34] An Advance Care Plan is not a legal document. An Advance Care Plan is also not a clinical care plan, treatment plan or resuscitation plan which are written by clinicians to guide clinical care. [34]

An Advance Care Directive (ACD) may result from ACP. An ACD is a legal record of a person’s preferences for care and treatment and can be one of two types of document, instructional or appointing. [5,34,37]

  • An Instructional ACD enables a person to express decisions about their future medical treatment. All Australian states except NSW and Tasmania have government legislation for instructional ACD. In NSW and Tasmania, the statutory law (law made by judges) covers these documents. [5]
  • Appointing ACDs enable a person to appoint someone to make health care decisions on their behalf in the event they are unable to do so themselves. All states and territories have legislation and specific forms for this process. 

Different forms of written advance care planning documentation include living will, advance directive (AD), advance health directive, advance personal plan, medical direction, do-not-resuscitate (DNR) order and do-not-hospitalise (DNH) order, physician orders for life-sustaining treatments (POLST) or refusal of treatment certificate. [3-6,9,11,38]

A person can create an ACD without talking to others. Cultural beliefs and practices may shape a person’s preferences for future care and for end-of-life and readiness to engage with ACP. [5,10] Cultural and religious beliefs might also influence decisions made by professionals, carers and family. [10,22]

Statements of values are also used to describe a person’s wishes. These can describe the person’s values, their conception of existence and wishes, hopes and expectations in the context of health and disease, what the person means by ‘quality of life’ or ‘dignified end-of-life’. These may help guide decision-makers.

A person may choose to formally appoint a substitute decision-maker (SDM) in case they are unable to make decisions in the future. Substitute decision-makers can be empowered to make decisions about financial matters, and personal, lifestyle and medical matters. [5,9] The precise powers a person can be given, and the principles they must follow when making decisions, again depends on state and territory laws. [5,9]

Kelly et al. [7] reviewed individual preferences in ACP and decisions around the choice of SDM. Half the included studies (but only 20% of participants) focussed on elderly people. In a family with close ties and free of conflict, it is very common for people to choose close family members to make treatment decisions for them during periods of decisional incapacity with a preference for a spouse or adult child(ren). These choices and preferences are based on trust yet were made after discussion with family members in sometimes less than 50% cases. People find it difficult to judge how much “leeway” or “freedom” they are happy to give to the SDM. In certain cases, people indicate clear, inflexible wishes or ask family or SDM to adhere to their wishes to avoid possible feelings of guilt about a “wrong decision”. Other people are satisfied that general preferences are enough to guide family and SDM in decision-making. [7]

ACP and aged care residents and frail elderly people in the community and in RAC

Older people with multiple comorbidities, frailty, cognitive impairment or dementia are often cared for in residential aged care. [11,28] Frailty and comorbidities are often associated with hospital admissions for residents at a rate up to three times higher than for older people living in the community. [28] Martin et al. [28] investigated ACP interventions such as ACP educational programs or the introduction and evaluation of a new ACP in residential aged care facilities (RACF). This review found that these interventions have beneficial effects for residents: ACP interventions can reduce the number of hospital admissions of residents, reduce unwanted life-sustaining treatments and improve the alignment of preferences for care and delivered care. [28] ACP interventions are associated with death in preferred place and increased and earlier referrals to palliative care. [28] The authors caution that these results, although promising, are from low-quality studies.

Frailty is characterised by multiple impairments, an unpredictable disease trajectory and a high risk of deterioration and hospitalisation and ACP is important for the frail elderly. [11,28,36] Frail elderly people often have multiple comorbidities, functional and/or cognitive impairment and commonly frail elderly people are cared for in RAC. [11,29] Prognosis is difficult and the dying trajectory unpredictable. [11,29] An acute deterioration in health, commonly an infection, fall-related injuries or an acute exacerbation of a chronic illness, may trigger a transfer to ED or hospital. [11] For frail elderly people, hospitalisation can be associated with delirium, pressure ulcers, hospital-acquired infections, and functional decline post-admission. [11] For a certain number of these residents, a transfer to hospital may disrupt or inhibit appropriate palliative care. [11]

The completion of an ACD, DNR or DNH order may reduce the probability of transfer to hospital for acute treatment, therefore avoiding the effects of hospitalisation, and reducing the risk of dying in hospital rather than in the residential aged care facility (RACF). [11] However, the type and prevalence of ACP documents completed by residents and frail elderly residents is variable. For example, data mostly taken from the US showed, a) 2-29% of frail older people had discussed some form of end-of-life care plans with a healthcare professional, b) 15-66% of older people have end-of-life care plans documented in their records,  c) 54-73% and 2.1-49% of residents have DNR and DNH orders, and d) 3-37% of residents presenting to ED have a DNR order and up to 7.9% have a DNH order. [11,29] Dwyer at al. [11] note that RACF residents are less likely to be transferred to hospital as age approaches the very extremes of old age. These authors propose that if a RACF has a high percentage of residents with completed ACD, DNR, and/or DNH order, this can be an indicator of quality of care for acute illness and at end of life for the residents. [11] International evidence suggests that most frail elders would value discussing ACP and general practitioners recognise ACP as part of their professional responsibility, yet ACP is relatively uncommon in frail elders. [36]

Sharp et al. [29] note that a majority of older adults (61-91%) want to discuss their end-of-life care early and in an honest and straightforward way. Older adults see ACP as an opportunity to plan for their future care whilst they have the capacity to do so, and a way of enhancing the possibility of their future being in line with their wishes and reducing the burden of decision-making on their family. [29] Often older adults see a doctor, GP or specialist as the person who should initiate end-of-life discussions. [29] Sharp et al. find discrepancies in the literature in that 28% older adults had discussed terminal care with a family member yet only 2% had had a similar discussion with their doctor. [29] Information related to this topic can be found in: Communication at End-of-Life.

Combes et al. have developed a conceptual model that describes the core elements for successful ACP with community dwelling frail elders: early engagement, living well in the short-term, stakeholder education, recognition of ACP facilitation triggers throughout frail elders’ end-of-life trajectories. [36]

Efficacy of ACP interventions

Houben et al. [27] investigated the efficacy of ACP interventions in different adult patient populations. Whilst not specific to older adults receiving palliative care, this review relates to adults and older adults in RAC or with a life-limiting disease. Included studies are 55 RCTs of interventions focussed on the completion of ACDs and or communication about end-of-life care and related choices. Both types of interventions increase the completion of ACDs and stimulate end-of-life care discussions between patients and healthcare professionals. The authors note that the optimal time for these discussions is outside of an acute episode of ill-health, when the person’s health is stable.

The interventions that include both communication about ACP and ACDs, improve alignment of preferences for care and delivered care. It seems that these interventions are not associated with participants’ anxiety or depression. It is not clear if ACP interventions have significant positive impact on satisfaction with health care, decisional conflict or the use of healthcare services. [27]

The cost-effectiveness of ACP

One systematic review focussed its attention to the cost-effectiveness of ACP and found limited evidence. [12] Fourteen of the 18 included studies were conducted in USA. No evidence suggests that ACP is more costly, and some well-conducted studies indicate that ACP is associated with healthcare savings. [12] The savings seem to be for older people in RAC, people living with dementia who are cared for at home, and people with high-care needs and low income. [12] Although savings are recognised, the broader costs and benefits are not understood. Examples of such costs are those borne by RAC, community services or families and carers with the avoidance of hospital admissions. Examples of benefits may be the reduction of stress and improved quality of life with care aligned with the dying person’s wishes. Research in the Australian setting is emerging but currently insufficient to draw conclusions.

Initiating ACP

Despite legislation, policy, quality standards and emerging evidence, the number of Australians completing an ACD remains low. [37]

Reluctance of healthcare professionals to start or uncertainty as to when and how to start ACP and EoL discussions is noted in the literature. [8,21,36] A novel finding from the review by Schichtel et al. suggests that patients may hold the key to engaging clinicians with ACP and that their role in initiating an ACP conversation with the help of question prompt lists (QPL) might mitigate this reluctance. [21] Most of the research on the effect of QPLs comes from the cancer setting and research needs to be done to determine the usefulness of QPLs in advanced chronic disease. [21]

ACP training

Many reviews note the importance of ACP training for health professionals. [1,2,8,10,11,16,19,21,36] To be effective, training needs to clarify ACP processes, optimise skills and address staff concerns, and persuade staff of the usefulness of advance care planning and to give them confidence to start discussions with patients and their relatives. [8] Communications skills are an essential component of the ACP skill set and confidence. [2,8,16,21,30,36]

Communication tools and decision aids (DAs) and ACP

The communication process in ACP is important and involves addressing fundamental values, goals and preferences. The involvement of family, carers [1,7,11] and the relevant health professionals may enrich and strengthen the process. [1] Time constraints due to the advancement of disease or the availability of people to participate in this process are cited in the literature. [1,2,10,11,14,23,27,28,30]

Communication tools (including decision aids, structured meeting plans, and educational interventions) can assist patients and clinicians with end-of-life (EoL) decision-making. [30] A review by Oczkowski et al. [30] provides low-quality evidence that the use of structured communication tools to assist with EoL decision-making may increase the completion of ACP (discussions or ACD documentation). They may also increase alignment of desired care and actual care at EoL. The authors believe that the mechanisms behind these positive outcomes are improved patient and/or SDM knowledge and/or improved communication skills. This evidence is from a broad range of outpatient populations with approximately 40% of participants being elderly people.

Decision aids (DAs) are tools that provide high-quality, synthesised information to assist patients and clinicians compare the risks and benefits of treatment options, clarify what matters most to the patient and make a shared decision about what is the best option for the person. [14,26,33] DAs are most useful for situations when there is not one clear option and when each option has benefits and harms that patients may value differently. [14,26,33]

Low-level evidence suggests that video decision aids lead to greater knowledge of ACP and preferences for less aggressive treatment at end-of-life. [26] What needs to be better understood is whether DAs help confidence in decision-making, the actual use of aggressive treatments at end-of-life, or end-of-life care in alignment with a person’s wishes. [26]

There are few DAs available relative to end-of-life care of older people. [14] These seem to be generally accepted by older people and help by increasing knowledge of care options and reducing decisional conflict. [14] DAs should be an adjunct to and not a replacement of discussions with health professionals. [14] As death approaches, symptoms, care needs and care costs change and therefore DAs can be used regularly to assist with the evolving decisions of care. [14]

ACP and specific conditions

Older patients with advanced chronic conditions such as end-stage renal disease or heart failure are at increased risk for death. Yet many do not have conversations with their relatives or clinicians about end-of-life issues such as preferences in relation to admission to intensive care, referral to palliative care services, withdrawal from therapy, resuscitation, or where they might choose to die. [8,16,21]

People with dementia

A palliative approach for people with dementia, particularly in the advanced stages, is appropriate [1,15] but not always put in place. [1] In residential aged care, a palliative approach supports advance care planning, decision-making and goal setting for people with dementia. [15] The involvement of the resident (when possible) and key family members and/or substitute decision-maker(s) is important to an integrated approach to care. [15] Case conferencing, a useful tool for integrated care, can improve palliative care outcomes for residents with dementia particularly in the areas of advance care planning, physical symptom management, psychological support, family support and terminal care. [15]

Given the inevitable loss of capacity and communication, ACP is highly relevant for adults living with dementia. [1,17,19,23] Ideally, ACDs should be completed with input from a treating doctor and a discussion of prognosis, possible complications and treatment options. [17] As dementia is often not recognised as a terminal illness, participation in ACP, particularly at the time of diagnosis is not always seen as relevant. [17] The perception that discussing ACP close to the time of diagnosis causes undue stress and anxiety has been refuted by strong evidence. [17]

Very few high-quality studies have examined the effectiveness of interventions to increase participation in ACP for persons with dementia. [17] The evidence suggests that ACP be incorporated in the planning of future care in light of the person’s goals, life values, normal daily function, and their remaining quality of life. [19] This ‘reframing’ of ACP has also been suggested for the frail elderly. [36]

Substitute decision-makers are important for people with advanced dementia and increasingly so as the condition progresses. [18] As time passes, their role requires them to become more involved and deal with multiple complexities for which they are often unprepared, and they often experience confusion, guilt, and mistrust as they navigate the issues around end-of-life care. [18] Trust in healthcare personnel, in particular, enables ongoing discussions about end-of-life treatment choices tailored to the person’s choices. [18]

In case of loss of capacity, illness or injury, whether expected or not, ACP assists family, friends and health professionals to consider options and make decisions in line with a person’s wishes. [1,10,23,24] ACP can reduce inappropriate hospital admissions and health-care costs for people with cognitive impairment and dementia. [25] People with dementia with an ACD in place are less likely to die in hospital or in ICU. [1]

The progressive decline associated with dementia can be associated with under-treatment for pain and other symptoms, numerous emergency hospital admissions and/or non-beneficial medical treatments. [1] Hospitalisations and invasive treatments can exacerbate the behavioural and psychological symptoms of dementia (BSPD). [1]

> Dixon et al. [1] note that the majority of the 18 studies included in their review indicate ACP to be associated with positive end-of-life outcomes. These outcomes were diverse but mostly in relation to healthcare utilisation including place of death, hospitalisation and specific treatments. It was unclear if patient and carer outcomes also improved. Most of the included studies were conducted in residential aged care and therefore focussed on late(r)-stage dementia. Some of this evidence supports ACP reducing burdensome transitions in the last three months of life.

Like other authors, Dixon et al. [1] note that the ACP interventions described in the literature are diverse. These can range from ACP discussions, the completion of an ACD, an ACD directly guiding care, to multi-component programs involving staff education and training, education for patients and carers, and documented ACP on charts as a means of checking that care respects stated preferences. Dixon et al. [1] note that ACP programmes appear to influence end-of-life outcomes by influencing the policy and culture of the residential aged care facility and by improving staff skills and knowledge. They also note that education and training for health and care staff can increase acknowledgement of resident and carer preferences. This may reduce the number of transfers to hospital from a RACF and create a higher threshold for transfer to hospital for residents without an advance care directive.

Implementing ACP may be challenging in dementia, but Dixon et al. [1] find it important as it allows people with dementia to have a say in their future care and because of the currently poor outcomes for people with dementia at end of life, which ACP may help to improve. However, Dening et al. [24] find limited literature and little evidence in support of the effectiveness of ACP in changing outcomes for people with dementia.

Dening et al. [24] find limited evidence on the timeliness and initiation of ACP discussions for people with dementia. Some evidence suggests the important role of health professionals in the initiating timely and informed discussions about planning for future care with both the person with dementia and their carer, the success of which is based on background ACP education and supportive programs. [24] Dening et al. suggest that a key ACP facilitator, a dedicated professional available to educate both families and health professionals about ACP, can help promote ACP and improve outcomes. [24]

Family carers require emotional support, information and education about dementia and its trajectory and this can include a better understanding of palliative and end-of-life care. [24] Education is also needed to enable health professionals to engage with people with dementia and their families in the process of ACP, acknowledging the role of the family within this context. [10,24]

Initiating ACP in dementia

There is general agreement that planning for end-of-life can be beneficial in dementia. Anticipating the patient’s cognitive decline, starting ACP early can be beneficial. [23] In practice, however, these discussions may not take place or may start too late. The time of diagnosis may be seen as a good time to start planning or, on the contrary, may be so emotionally charged and information-intensive that ACP may be too difficult. [23] Van der Steen at al. [23] describe the complexity of factors associated with initiation of ACP for end-of-life care in dementia. Noted commonly in the literature are the family’s initiative or lack of it, and willingness or reluctance to begin ACP discussions. Terms such as “unwillingness,” “active avoidance,” “not being ready”, “passive avoidance” or “blind trust”, are used. Previous experience with ill-health or dying can prime families’ readiness to initiate ACP early. Noted in the literature is families’ regret on having been too late to discuss ACP or having failed to anticipate problems in the dying phase. [23] Initiative of health professionals and carers are also noted as important factors in the initiation of ACP. [23]

Evidence Gaps

  • The evidence base for ACP for older Australians and aged care residents is limited. Further high-quality studies are required to support the reported benefits and to help identify the types of ACP interventions that are most effective and beneficial for older Australians at the end of life.
  • The value of decision aids in assisting advance care planning for or at end of life is not yet clear.
  • Future work may find strategies to align the receptiveness, knowledge, and attitudes of patients, families and health professionals to the initiation of ACP.
  • The knowledge, attitudes, experience and confidence of aged care staff, primary care providers, specialist geriatric and palliative care staff may have a positive influence in the process of ACP. Future research may help us better understand the interrelationship.
  • Stronger evidence is needed on successful ACP interventions and organisational systems that increase ACP in routine care.
  • There is a lack of evidence around the costs associated with implementing ACP and the subsequent benefits to patients and families and to the health system.

Page updated 20 January 2022

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