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Advance Care Planning (ACP)

Key Messages

  • Advance Care Planning (ACP) encourages adults to reflect on and discuss their values and preferences to plan for health or personal care at a time when they do not have the capacity to make or communicate decisions. [1-11]
  • ACP encourages a person to appoint a substitute decision-maker (SDM) and to document any specific wishes regarding their future care in an advance care plan or an advance care directive (ACD). [1-3,8,11-13]
  • An ACD is a legal written advance care plan, completed and signed by a competent adult, which records his/her preferences for future care and appoints a SDM to make decisions about health and personal care. [1-3,11,12]
  • ACP is a beneficial process for all adults, particularly for older, frailer people and those with chronic or life-threatening illness whose health is likely to deteriorate. [3,6-8,12-15]
  • ACP can improve end-of-life care in line with a person’s wishes. [3-6,8,9, 12,14] It can improve the chance for people to die in their preferred place of death [5,6,12] and reduce hospitalisation and burdensome treatment at end-of-life for older people. [4-6,12,16] This suggests the need for better awareness of ACP and education in ACP. [9,10,15,16]
  • In Australia, ACP and ACDs are governed by state and territory legislation. [2,3,11]

Background

Advance care planning (ACP) is a voluntary process of reflecting, discussing and recording preferences and plans for future care should the person loses capacity or the ability to communicate. [1-5,7,8,11,13] 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). [6] Old age is associated with a high prevalence of chronic illness, comorbidity, frailty, cognitive impairment, and repeat hospitalisations [6-8,12,15,17] and 50-80% aged care residents have dementia. [6] The process of ACP is, therefore, particularly relevant for older people and aged care residents. [6-8,12,14]

In practice, discussions around end-of-life issues may often not take place or start too late. [9-11,14-16] The 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. [11,18] Recent research shows that only 38-48% of older Australians in residential aged care had an advance care directive (ACD) [11,19] and only 17% of people with dementia had formally appointed a substitute decision-maker to make medical decisions on their behalf if they could not make or communicate decisions for themselves. [19] Internationally, there is a low prevalence of advance care planning in residential aged care [7,8] despite a majority of residents welcoming the opportunity for such a discussion. [8]

Evidence summary

ACP is intended to enable adults to make plans for their future care. The process encourages people to reflect on their values, preferences, beliefs, and to record how they want to be cared for at a time where they cannot communicate decisions about medical care for themselves. [1-8,11,13] ACP enables adults and their family to consider what care and treatments might or might not be acceptable. [1-5,8,13] ACP is an intensely human process in which a person possibly, at a vulnerable stage in life, is invited to consider their own deterioration and death, and to make plans for navigating various threatening possibilities. [9]

An Advance Care Directive (ACD) may result from ACP. An ACD is a document which provides a legal means for a competent adult to nominate and instruct one or more Substitute Decision-Maker(s) (SDM) and/or to record preferences for future health and personal care. [1,2,4,8,11,12] Substitute decision-makers can be empowered to make decisions about financial matters, and personal, lifestyle and medical matters. [11] The precise powers a person can be given, and the principles they must follow when making decisions, depends on the state and territory laws. [11] 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) or physician orders for life-sustaining treatments (POLST) and refusal of treatment certificate. [1-4,6,11,12] Detailed information on advance care planning and Advance Care Directives can be found on CareSearch and Advance Care Planning Australia websites.

ACP is most common in the last 12 months or the last days to weeks of life. However, ACP is a beneficial process for all adults, especially those who are at risk of deterioration in health. [3,13,14] 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. [1-3,7,8,13,14]

In Australia, the state and territory government laws vary on ACP and ACDs. ACDs are legally binding documents in every state and territory. [2,3,11] Ideally, in the case of a life-limiting illness, these documents should be completed with input from a treating doctor and a discussion of prognosis, possible complications and treatment options. [7,8,12,13]

ACP can improve end-of-life care in line with an older person’s wishes and satisfaction with care, [3,4,6,8,14] and it can reduce family stress, anxiety and depression. [4,5,14] ACP or ACD is associated with:

  • decreased life-sustaining or burdensome treatment [4-6,12,14]
  • earlier or increased use of hospice and palliative care [4-6,12,14,16]
  • fewer hospital admissions, visits to Emergency Department, days in hospital and deaths in hospital. [4-6,12,14,16]

ACP programs seem to increase compliance of care with patients’ end-of-life wishes [4,5] and the chance of a person dying in their preferred place of death (at home or in their residential aged care facility) rather than in hospital. [6,12]  Evidence suggests that advance care planning helps with care planning and shared decision-making for people with end-stage renal disease and heart failure and their families and aligning care with the person’s wishes. [9,16] Given the inevitable loss of capacity and communication, ACP is highly relevant for adults living with dementia. [13,14,20,21] However, 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. [20] Ideally, ACDs should be completed with input from a treating doctor and a discussion of prognosis, possible complications and treatment options. [20]
Implementing ACP may be challenging in dementia but important as it allows people with dementia to have a say in their future care and ACP may help to improve the currently poor outcomes for people with dementia at end of life. [13] People with dementia with an ACD in place are less likely to die in hospital or in ICU [13] or undergo burdensome interventions such as ED transfer and hospitalisation in the last 3 months of life. [12] 

ACP appears to be associated with reduced healthcare costs in some circumstances [5,6,14] such as for people living with dementia in the community, people in residential aged care [6] or in areas with high end-of-life care spending. [5] There is no evidence that advance care planning increases healthcare costs. [5] Training for healthcare professionals is important [10,15,16] particularly to clarify ACP processes, optimise skills and address staff concerns, and convince staff of the usefulness of advance care planning and to give them confidence to start discussions with patients and their relatives. [9] Organisational, policy and funding support is important for training and implementation of ACP. [9,15,16]  

Quality statement

Overall, the quality of the reviews is good.

Page updated 25 May 2021

 

  • References

  • About PubMed Search

  1. Queensland University of Technology (QUT). Advance Care Directives [Internet]. 2020 [updated 2020 May 29; cited 2020 Jul 8].
  2. Austin Health. Advance Care Planning Australia [Internet]. 2017 [cited 2017 Nov 21].
  3. The Royal Australian College of General Practitioners (RACGP). Advance Care Planning [Internet]. 2018 [cited 2018 Oct 22].
  4. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014 Sep;28(8):1000-25. doi: 10.1177/0269216314526272. Epub 2014 Mar 20.
  5. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: Systematic review of evidence. Palliat Med. 2015 Dec;29(10):869-84. doi: 10.1177/0269216315586659. Epub 2015 Jun 9.
  6. Martin RS, Hayes B, Gregorevic K, Lim WK. The effects of advance care planning interventions on nursing home residents: A systematic review. J Am Med Dir Assoc. 2016;17(4):284-93. 2016 Apr 1;17(4):284-93. doi: 10.1016/j.jamda.2015.12.017. Epub 2016 Feb 6.
  7. Beck ER, McIlfatrick S, Hasson F, Leavey G. Health care professionals' perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature. Dementia (London). 2017 May;16(4):486-512. doi: 10.1177/1471301215604997. Epub 2015 Sep 16.
  8. Gilissen J, Pivodic L, Smets T, Gastmans C, Vander Stichele R, Deliens L, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. Int J Nurs Stud. 2017 Jan;66:47-59. doi: 10.1016/j.ijnurstu.2016.12.003. Epub 2016 Dec 8.
  9. O'Halloran P, Noble H, Norwood K, Maxwell P, Shields J, Fogarty D, et al. Advance Care Planning With Patients Who Have End-Stage Kidney Disease: A Systematic Realist Review. J Pain Symptom Manage. 2018;56(5):795-807.e18.
  10. Schichtel M, Wee B, MacArtney JI, Collins S. Clinician barriers and facilitators to heart failure advance care plans: a systematic literature review and qualitative evidence synthesis. BMJ Support Palliat Care. 2019 Jul 22:bmjspcare-2018-001747. doi: 10.1136/bmjspcare-2018-001747. Epub ahead of print.
  11. Royal Commission into Aged Care Quality and Safety. Advance care planning in Australia. Background Paper 5. Canberra: Commonwealth of Australia; 2019 Jun 20.
  12. Dwyer R, Stoelwinder J, Gabbe B, Lowthian J. Unplanned transfer to emergency departments for frail elderly residents of aged care facilities: A review of patient and organizational factors. J Am Med Dir Assoc. 2015 Jul 1;16(7):551-62. doi: 10.1016/j.jamda.2015.03.007. Epub 2015 Apr 28.
  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. 2018;55(1):132-50.e1.
  14. van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimers Dis. 2014;40(3):743-57. doi: 10.3233/JAD-131967.
  15. 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.
  16. 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;32(10):1539-51.
  17. Cardona-Morrell M, Benfatti-Olivato G, Jansen J, Turner RM, Fajardo-Pulido D, Hillman K. A systematic review of effectiveness of decision aids to assist older patients at the end of life. Patient Educ Couns. 2017 Mar;100(3):425-435. doi: 10.1016/j.pec.2016.10.007. Epub 2016 Oct 11.
  18. 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;49(10):1261-1267. doi: 10.1111/imj.14261.
  19. Buck K, Detering KM, Sellars M, Sinclair C, White B, Kelly H, et al. Prevalence of advance care planning documentation in Australian health and residential aged care services report. Melbourne: Advance Care Planning Australia, Austin Health; 2019. 46 p.
  20. 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;33(3):262-73.
  21. 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;13(6):e0198535.

Definitions

Advance Care Planning

Discussions with patients and/or their representatives about the goals and desired direction of the patient's care, particularly end-of-life care, in the event that the patient is or becomes incompetent to make decisions (Source: MeSH Thesaurus)

Advance Directives

Declarations by patients, made in advance of a situation in which they may be incompetent to decide about their own care, stating their treatment preferences or authorizing a third party to make decisions for them (Source: Bioethics Thesaurus).

Search notes

Note: Searched only Aged plus RAC with topic and topic by itself

Advance Care Planning

((Advance care plan*[tw] NOT Medline[sb]) OR advance care planning[mh])

Advance Directives

advance directives[mh] OR ((advance directive*[tw] OR living will*[tw]) NOT medline[sb])