Advance Care Planning

Key Messages

  • Advance care planning (ACP) is a process of undertaking anticipatory conversations and planning that may be useful in the event a person loses their ability to express their wishes and make decisions in the future. [1]
  • Advance care planning discussions can occur at any time in a person’s life but may be especially appropriate for people diagnosed with a life limiting illness or those with a condition which will reduce their ability to make decisions in the future. [2]
  • Advanced Care Directives (ACD) are a legal record of a person’s preferences for care and treatment and can be one of two types of document, instructional or appointing. [1,3]
  • Improving the implementation of ACP includes interventions based on providing information to patients, families or health care professionals.
  • Measuring the impact of ACP is difficult, although there is some evidence that they reduce health care utilisation and improve patient satisfaction with end of life care.

Evidence Summary

Definition

There are a number of elements involved in advance care planning and terminology is used inconsistently, definitions applied in the following document have been drawn from the Australian Government 'A National Framework for Advance Care Directives' [1,3] Advance care planning (ACP) is a process of undertaking anticipatory conversations and planning that may be useful in the event a person loses their ability to express their wishes and make decisions in the future. It is an ongoing, values directed process and is based on the principles of autonomy, dignity and preserving the right of self-determination. [1] An advance care plan outlines a person’s 'preferences about health and personal care and preferred health outcomes.' [4] The objective is to ensure that if a person is unable to participate in their own health care decisions their preferences, values and goals remain central to the decision making that occurs on their behalf.

Advance care planning discussions can occur at any time in a person’s life but may be especially appropriate for people diagnosed with a life limiting illness, those with a condition which will reduce their ability to make decisions in the future, a person who is over the age of 75 or someone moving into residential care. [2] Advance care planning can be part of a structured health care planning process with health care professionals or may be informal conversations with family and friends. Care planning is useful to all people, but clear documentation is particularly helpful for people who have conditions likely to prevent them speaking for themselves at the end of life, or do not have a family.

 

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Review Collection

Elements of Advance Care Planning

Advance Care Plan

A possible outcome of care planning discussions is an Advance Care Plan. This is not the same as a clinical care plan, treatment plan or resuscitation plan that may be developed and implemented by a health care professional when delivering health care. [1] 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 oral form. [1] These are not legal documents.

Advance Care Directives

Advanced Care Directives (ACD) are a legal record of a person’s preferences for care and treatment and can be one of two types of document, instructional or appointing. [1,3] Instructional advance care directives enable a person to make decisions about their future medical treatment. In Australia all but NSW and Tasmania have legislation (law created by governments) defining and creating 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. [5] All states and territories have legislation that cover these documents. Specific forms are available in each state and territory to enable ACD to be drawn up correctly and within the legal requirements of these documents.

Substitute Decision Maker

A person has the right to formally appoint a substitute decision maker in the event they are unable to make decisions for themselves in the future. [6,7] A substitute decision maker is a person who is nominated in an ACD to make a decision on behalf of a person who lacks the capacity to make their own decisions. [1,3] The substitute decision maker can be empowered to make decisions about medical treatment, personal or financial matters. The legal requirements for appointing a substitute decision maker, what documentation is required and the specific powers this person may hold differ between each state and territory. [5] A substitute decision maker can be appointed by the person, before they lose the capacity to do so, or may be appointed on an individual’s behalf.
The Australian government clearly defines substitute and surrogate decision making as separate processes. [1] Substitute decision is one made that seeks to reproduce the decision the person would have made. A surrogate decision, on the other hand, seeks to reflect the values of the person and may not replicate the decision the person themselves would have made. [1] In the palliative care literature the term surrogate is commonly used but not always clearly defined, and in some countries the term may be used to indicate a process that better aligns with the Australian government definition of substitute. [8]

Prevalence

There has been a considerable effort to improve the uptake of advance care planning processes in Australia. It is difficult, however, to assess the prevalence of Advance care planning and ACD given the lack of a national database. The studies that have been carried out in this area exemplify the variation in terminology and how difficult it is to measure prevalence. A recent multicentre audit by Advance Care Planning Australia examined the prevalence of advanced care directives, or documented advance care plans among older Australians accessing health care services, such as general practice, acute hospitals or residential aged care facilities. [9] In that study approximately 30 per cent of older people had an advanced care document. However, most of these were not Advanced Care Directives, and the prevalence of these documents was higher in aged care facilities (47 percent) than in acute hospitals (15.7 per cent) and general practice (3.2 percent). [9] A separate Australian study which specifically examined the prevalence of ACD in the community found that only six per cent of adults surveyed had an instructional ACD while 12 per cent had an appointing ACD and fewer than four per cent had both. [3] Older age was the strongest predictor of completing an appointing ACD but not for completing an instructional ACD.

Implementation

Despite evidence that ACP and ACD are regarded positively by patients, carers and health care professional it would seem health care professionals avoid ACP discussions. [10] A number of systematic reviews have described the barriers and potential facilitators to initiating ACP conversations. Patient trajectories and prognostic uncertainty are important considerations when deciding to initiate a conversation about advance care plans. [11] For people with conditions which may limit their ability to communicate or make decisions in the future, such as dementia, advance care planning is critically important and should be considered as soon as a diagnosis is made. [12,13] There is, however, limited evidence on the best timing for ACP discussions, with some research supporting early initiation, while others suggest these discussions are best held later in the disease course. [10] In instances where a person is aware that their ability to participate in decisions about their care will be diminished in the future, such as in dementia, conversations should occur as soon as possible.

A systematic review has identified 'sentinel events' as important triggers for advance care planning for patients with cancer. [14] These include: new diagnosis with advanced cancer, admission to hospital or intensive care unit, new diagnosis of cerebral metastases, change in chemotherapy regimen, or when a cancer patient is identified as possibly having a need for haemodialysis, a pacemaker, an implantable cardioverter-defibrillator, major surgery, or a gastric tube. A recent systematic review of rapid review teams in hospitals found that although approximately one third of patients reviewed by these teams were approaching the end of life, only a very small number had documented plans in place. [7] However, it was also found that the presence of the rapid review team-initiated care planning discussions. [15]

A number of reviews have identified common barriers to initiating ACP, such as health care professionals not having time to initiate conversations, not wanting patients to lose hope, not knowing whose responsibility it is within a team to initiate the conversations, and their own lack of training and skills in having these conversations. [10,16] Reviews have also identified barriers to ACP from the patients’ perspective such as a lack of understanding about the terminal nature of their condition and people not wanting to burden their carers or families. [10,16] People from non-English speaking backgrounds or minority cultural groups may have very different concerns about end-of- life care. Differences may relate to whether the most usual cultural approach to end of life decisions is family-based or focused on individual autonomy (which is the philosophy underlying the medicolegal system in Australia). Communication difficulties as well as cultural differences can be a barrier to initiating and developing an ACP. [16,17]

Improving the implementation of ACP has been the focus of many studies and generally includes interventions based on providing information to patients, families or health care professionals and interventions that test decision aids or communication training or tools. [10] The most common interventions are focused on providing information about ACP to people and this is most successful when written material is supported with other information formats, such as discussions or videos. [10,18]. ACP interventions that target the person and their family often provide various formats for the information to be accessed, such as written documentation and video presentations, provide opportunities and time for discussion appear to be the most successful. [10,16,19] Current decision aids do not appear to meet the decision making needs of patients to support the implementation of ACP [20] Training health care professionals in communication skills has, however, been shown to improve ACP implementation. [10,21,22]

Roles and Responsibilities

One of the common barriers identified in the research around ACP is the ambiguity around who should initiate these conversations with patients and their families in the context of terminal illness. [16] Advance Care Planning Australia outlines the roles and responsibilities of various health care professionals on their website, particularly as they pertain to care planning and ACDs. A recent systematic review of the perceived barriers to ACP by health care professionals found while traditionally a medical responsibility, ACP was now being undertaken by nurses with positive results. [23] The initiation of ACP conversations, development of plans and documentation appears to be highly influenced by the knowledge of the health care professional, their attitude toward ACP and their training in communication rather than their designated role. [23,24]

Substitute Decision Makers

There is potential for significant burden associated with the role of substitute or surrogate decision-maker. [17,25] A recent systematic review of surrogate decision makers for older people with dementia found this group experienced confusion, guilt and mistrust as they navigated the issues around end of life care. [26] Relationships between health care providers family members, and amongst the family members themselves, have a significant impact on those who participate in end of life decision making. [17,26] There are differences in how surrogate decision makers may be involved in care decisions in different care settings and the emphasis should be on keeping the decision maker informed and supporting them emotionally. [10,25]

ACP Influence on Care Outcomes

Research on ACP has mostly focused on completion of plans rather than the impact these plans have at the end of a person’s life, with many of the systematic reviews of ACP defining outcomes as the number of completed and documented plans. The impact ACP and advance care directives have on the care a person receives at the end of life is difficult as many studies use different outcomes to measure impact. [13] Systematic reviews on the impact of ACP on patients have shown that people involved in discussion about their care at the end of life experience positive benefits from the process, do not lose hope and do not have increased anxiety. [16,19] A systematic review of 18 studies examining the impact of ACP on end of life outcomes for people with dementia established variation of outcome measures in all studies, making direct comparison difficult. [13] The outcomes ranged from health care utilisation, such as hospital admission or commencing specific treatments, economic outcomes and outcomes focused on patient and family satisfaction with care. Few studies in this review compared hospital utilisation and patient and family satisfaction. Only two studies, which the reviewers deemed of low to moderate quality, found that ACP resulted in improved patient and family satisfaction and reduced hospital utilisation. [13] Six studies, in total, reported reduced hospital utilisation, however, they did not report an increase in palliative care referrals or other substitute care outcomes. [13] The authors comment that a lack in heterogeneity in outcome measures limits systematic reviews of ACP but there is a need to develop outcomes that measure patient and family satisfaction. [13] 
In specific population groups, for example heart failure, ACP as part of care delivered by specialist palliative care services and as part of integrated care has been associated with decreased hospitalisations. [27] ACP has also been found to improve heart failure patient satisfaction with end of life care and improve communication about end of life care. [28] The specific content of ACP and advanced directives also appears to impact on end of life decisions, with targeted directions such as Do Not Resuscitate being associated with a decrease in the use of cardiopulmonary resuscitation. [10]

Evidence Gap

  • Guidance about when to initiate advance care planning discussions may need to be developed to assist health care professionals.
  • High quality studies are needed on outcome measures for ACP and their impact on end of life care.
  • The appropriate support for surrogate decision makers needs to be established with interventions targeted at reducing anxiety and guilt for this group.
  1. Australian Government Department of Health and Ageing. A National Framework for Advance Care Directives (2.28MB pdf). Canberra: Australian Government Department of Health and Ageing; 2011.
  2. Clayton JM, Luckett T, Detering K. Advance Care Planning in Palliative Care. In: MacLeod R, Van den Block L, editors. Textbook of Palliative Care. Cham: Springer; 2018.
  3. White BP, Willmott L, Tilse C, Wilson J, Ferguson M, Aitken J, et al. Prevalence of advance care directives in the community: a telephone survey of three Australian States. Intern Med J. 2019 Oct;49(10):1261-1267. doi: 10.1111/imj.14261.
  4. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: essential elements for safe high quality end-of-life care. Sydney: ACSQHC; 2015.
  5. Queensland University of Technology (QUT), End of Life Law in Australia. Advance Care Directives [Internet]. Brisbane: QUT; 2020 [updated 2020 Mar 12; cited 2020 Mar 17]
  6. Advance Care Planning Australia. What do I need to know about advance care planning? [Internet]. Melbourne: Advance Care Planning Australia, Austin Health; 2018.
  7. Fountain S, Nolte L, Wills M, Kelly H, Detering K. Review of advance care planning laws across Australia: short report (1.15MB pdf). Melbourne: Advance Care Planning Australia, Austin Health; 2018.
  8. Su Y, Yuki M, Hirayama K. The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies. Patient Educ Couns. 2019 Dec 16:S0738-3991(19)30555-5. doi: 10.1016/j.pec.2019.12.011. Epub ahead of print.
  9. Detering KM, Buck K, Ruseckaite R, Kelly H, Sellars M, Sinclair C, et al. Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study. BMJ Open. 2019 Jan 15;9(1):e025255. doi: 10.1136/bmjopen-2018-025255.
  10. Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY. Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons. J Pain Symptom Manage. 2018 Sep;56(3):436-459.e25. doi: 10.1016/j.jpainsymman.2018.05.016. Epub 2018 May 25.
  11. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015 Feb 13;10(2):e0116629. doi: 10.1371/journal.pone.0116629.
  12. Bryant J, Turon H, Waller A, Freund M, Mansfield E, Sanson-Fisher R. Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: A systematic review. Palliat Med. 2019 Mar;33(3):262-273. doi: 10.1177/0269216318801750. Epub 2018 Sep 27.
  13. Dixon J, Karagiannidou M, Knapp M. The effectiveness of advance care planning in improving end of life outcomes for people with dementia and their carers: A systematic review and critical discussion. J Pain Symptom Manage. 2017 Aug 5. pii: S0885-3924(17)30333-0. doi: 10.1016/j.jpainsymman.2017.04.009. [Epub ahead of print]
  14. Walling A, Lorenz KA, Dy SM, Naeim A, Sanati H, Asch SM, et al. Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol. 2008 Aug 10;26(23):3896-902.
  15. Pearse W, Oprescu F, Endacott J, Goodman S, Hyde M, O'Neill M. Advance care planning in the context of clinical deterioration: a systematic review of the literature. Palliat Care. 2019 Jan 19;12:1178224218823509. doi: 10.1177/1178224218823509.
  16. Hemsley B, Meredith J, Bryant L, Wilson NJ, Higgins I, Georgiou A, et al. An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation. Patient Educ Couns. 2019 Jun;102(6):1067-1079. doi: 10.1016/j.pec.2019.01.007. Epub 2019 Jan 11.
  17. Anderson RJ, Bloch S, Armstrong M, Stone PC, Low JT. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliat Med. 2019 Sep;33(8):926-941. doi: 10.1177/0269216319852007. Epub 2019 Jun 11.
  18. Combes S, Nicholson CJ, Gillett K, Norton C. Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model. Palliat Med. 2019 Jul;33(7):743-756. doi: 10.1177/0269216319845804. Epub 2019 May 6.
  19. Zwakman M, Jabbarian LJ, van Delden J, van der Heide A, Korfage IJ, Pollock K, et al. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med. 2018 Sep;32(8):1305-1321. doi: 10.1177/0269216318784474. Epub 2018 Jun 29.
  20. Phillips G, Lifford K, Edwards A, Poolman M, Joseph-Williams N. Do published patient decision aids for end-of-life care address patients' decision-making needs? A systematic review and critical appraisal. Palliat Med. 2019 Sep;33(8):985-1002. doi: 10.1177/0269216319854186. Epub 2019 Jun 14.
  21. Nguyen H, Terry D, Phan H, Vickers J, McInerney F. Communication training and its effects on carer and care-receiver outcomes in dementia settings: A systematic review. J Clin Nurs. 2019 Apr;28(7-8):1050-1069. doi: 10.1111/jocn.14697. Epub 2018 Nov 20.
  22. Vanderhaeghen B, Van Beek K, De Pril M, Bossuyt I, Menten J, Rober P. What do hospitalists experience as barriers and helpful factors for having ACP conversations? A systematic qualitative evidence synthesis. Perspect Public Health. 2019 Mar;139(2):97-105. doi: 10.1177/1757913918786524. Epub 2018 Jul 16.
  23. Blackwood DH, Walker D, Mythen MG, Taylor RM, Vindrola-Padros C. Barriers to advance care planning with patients as perceived by nurses and other healthcare professionals: A systematic review. J Clin Nurs. 2019 Dec;28(23-24):4276-4297. doi: 10.1111/jocn.15049. Epub 2019 Oct 3.
  24. Tilburgs B, Vernooij-Dassen M, Koopmans R, van Gennip H, Engels Y, Perry M. Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review. PLoS One. 2018 Jun 20;13(6):e0198535. doi: 10.1371/journal.pone.0198535.
  25. Lord K, Livingston G, Cooper C. A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. Int Psychogeriatr. 2015 Aug;27(8):1301-12. doi: 10.1017/S1041610215000411. Epub 2015 Apr 14.
  26. Cresp SJ, Lee SF, Moss C. Substitute decision makers' experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis. Dementia (London). 2018 Sep 25:1471301218802127. doi: 10.1177/1471301218802127. Epub ahead of print.
  27. Kernick LA, Hogg KJ, Millerick Y, Murtagh FEM, Djahit A, Johnson M. Does advance care planning in addition to usual care reduce hospitalisation for patients with advanced heart failure: A systematic review and narrative synthesis. Palliat Med. 2018 Dec;32(10):1539-1551. doi: 10.1177/0269216318801162. Epub 2018 Sep 20.
  28. Schichtel M, Wee B, Perera R, Onakpoya I. The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis. J Gen Intern Med. 2019 Nov 12. doi: 10.1007/s11606-019-05482-w. [Epub ahead of print]

Last updated 19 March 2020