Skip to main content
SpringerLink
Log in

Advance Care Planning in Palliative Care

  • Living reference work entry
  • Latest version View entry history
  • First Online:
Textbook of Palliative Care

Abstract

Advance care planning is a person-centered process to enable a person to express their preferences for future health care. Advance care planning is an integral component of palliative care for people at various stages in the illness trajectory. This chapter provides an overview of advance care planning; the potential benefits, barriers, and facilitators; the key components of advance care planning at various stages of health; strategies for the advance care planning conversation; and areas for future research.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution

Institutional subscriptions

References

  • Auriemma CL, Nguyen CA, Bronheim R, Kent S, Nadiger S, Pardo D, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med. 2014;174(7):1085–92.

    Article  PubMed  PubMed Central  Google Scholar 

  • Australian Government Department of Health. My health record. 2016. Available from: https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/home

  • Bigby C, Carney T, Then S-N, Wiesel I, Sinclair C, Douglas J, et al. Diversity, equity and best practice: a framework for supported decision-making. A research report for the royal commission into violence, abuse, neglect and exploitation of people with disability; 2022.

    Google Scholar 

  • Bloemen EM, Rosen T, LoFaso VM, Lasky A, Church S, Hall P, et al. Lesbian, gay, bisexual, and transgender older adults’ experiences with elder abuse and neglect. J Am Geriatr Soc. 2019;67(11):2338–45.

    Article  PubMed  PubMed Central  Google Scholar 

  • Campbell T, Carey E, Jackson V, Saraiya B, Yang H, Back A, et al. Discussing prognosis: balancing Hope and realism. Cancer J. 2010;16(5):461–6.

    Article  PubMed  Google Scholar 

  • 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;100(3):425–35.

    Article  PubMed  Google Scholar 

  • Chung H-O, Oczkowski SJW, Hanvey L, Mbuagbaw L, You JJ. Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis. BMC Med Educ. 2016;16(1):131.

    Article  PubMed  PubMed Central  Google Scholar 

  • Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc. 2003;51(4):549–55.

    Article  PubMed  Google Scholar 

  • 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. 2020;19(5):1532–59.

    Article  PubMed  Google Scholar 

  • Curtis JR, Downey L, Back AL, Nielsen EL, Paul S, Lahdya AZ, et al. Effect of a patient and clinician communication-priming intervention on patient-reported goals-of-care discussions between patients with serious illness and clinicians: a randomized clinical trial. JAMA Intern Med. 2018;178(7):930–40.

    Article  PubMed  PubMed Central  Google Scholar 

  • Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. Br Med J. 2006;333(7574):886–9.

    Article  Google Scholar 

  • De Vleminck A, Houttekier D, Pardon K, Deschepper R, Van Audenhove C, Vander Stichele R, et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review. Scand J Prim Health Care. 2013;31(4):215–26.

    Article  PubMed  PubMed Central  Google Scholar 

  • Department of Health. National framework for advance care planning documents. Canberra; 2021.

    Google Scholar 

  • Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Br Med J. 2010;340:c1345.

    Article  Google Scholar 

  • Dionne-Odom JN, Ejem D, Azuero A, Taylor RA, Rocque GB, Turkman Y, et al. Factors associated with family caregivers’ confidence in future surrogate decision making for persons with cancer. J Palliat Med. 2018;21(12):1705–12.

    Article  PubMed  PubMed Central  Google Scholar 

  • Dionne-Odom JN, Wells RD, Guastaferro K, Azuero A, Hendricks BA, Currie ER, et al. An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers’ decision support skills: the CASCADE pilot factorial trial. J Pain Symptom Manag. 2022;63(1):11–22.

    Article  Google Scholar 

  • Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: systematic review of evidence. Palliat Med. 2015;29(10):869–84.

    Article  PubMed  Google Scholar 

  • Dy SM, Purnell TS. Key concepts relevant to quality of complex and shared decision-making in health care: a literature review. Soc Sci Med. 2012;74(4):582–7.

    Article  PubMed  Google Scholar 

  • Frost DW, Cook DJ, Heyland DK, Fowler RA. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med. 2011;39(5):1174–89.

    Article  PubMed  Google Scholar 

  • Gawande A. Being mortal: medicine and what matters in the end. London: Profile Books; 2015.

    Google Scholar 

  • 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;66:47–59.

    Article  PubMed  Google Scholar 

  • Goldberg SL, Pecora AL, Contreras J, DeMarco KE, Paramanathan D, DeVincenzo V, et al. A patient-reported outcome instrument to facilitate timing of end-of-life discussions among patients with advanced cancers. J Palliat Med. 2016;19(10):1092–7.

    Article  PubMed  Google Scholar 

  • Huber MT, Highland JD, Krishnamoorthi VR, Tang JW. Utilizing the electronic health record to improve advance care planning: a systematic review. Am J Hosp Palliat Care. 2018;35(3):532–41.

    Article  PubMed  Google Scholar 

  • Johnson S, Clayton J, Butow PN, Silvester W, Detering K, Hall J, et al. Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial. BMJ Open. 2016;6(12):e012387.

    Article  PubMed  PubMed Central  Google Scholar 

  • Johnson SB, Butow PN, Bell ML, Detering K, Clayton JM, Silvester W, et al. A randomised controlled trial of an advance care planning intervention for patients with incurable cancer. Br J Cancer. 2018;119(10):1182–90.

    Article  PubMed  PubMed Central  Google Scholar 

  • Jones L, Harrington J, Barlow CA, Tookman A, Drake R, Barnes K, et al. Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion. Palliat Support Care. 2011;9(1):3–13.

    Article  PubMed  Google Scholar 

  • Juhrmann ML, Vandersman P, Butow PN, Clayton JM. Paramedics delivering palliative and end-of-life care in community-based settings: a systematic integrative review with thematic synthesis. Palliat Med. 2022;36(3):405–21.

    Article  PubMed  Google Scholar 

  • Kelly B, Rid A, Wendler D. Systematic review: individuals’ goals for surrogate decision-making. J Am Geriatr Soc. 2012;60(5):884–95.

    Article  PubMed  Google Scholar 

  • Khandelwal N, Kross EK, Engelberg RA, Coe NB, Long AC, Curtis JR. Estimating the effect of palliative care interventions and advance care planning on ICU utilization: a systematic review. Crit Care Med. 2015;43(5):1102–11.

    Article  PubMed  PubMed Central  Google Scholar 

  • Klingler C, in der Schmitten J, Marckmann G. Does facilitated advance care planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Palliat Med. 2015;30:423–33.

    Article  PubMed  PubMed Central  Google Scholar 

  • Korfage IJ, Carreras G, Arnfeldt Christensen CM, Billekens P, Bramley L, Briggs L, et al. Advance care planning in patients with advanced cancer: a 6-country, cluster-randomised clinical trial. PLoS Med. 2020;17(11):e1003422.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lewis E, Cardona-Morrell M, Ong KY, Trankle SA, Hillman K. Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: a systematic review. Palliat Med. 2016;30(9):807–24.

    Article  PubMed  Google Scholar 

  • Lovell A, Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med. 2014;28(8):1026–35.

    Article  PubMed  Google Scholar 

  • 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;10(2):e0116629.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lyon ME, Caceres S, Scott RK, Benator D, Briggs L, Greenberg I, et al. Advance care planning – complex and working: longitudinal trajectory of congruence in end-of-life treatment preferences: an RCT. Am J Hosp Palliat Med. 2021;38(6):634–43.

    Article  Google Scholar 

  • Malhotra C, Hu M, Malhotra R, Sim D, Jaufeerally FR, Bundoc FG, et al. Instability in end-of-life care preference among heart failure patients: secondary analysis of a randomized controlled trial in Singapore. J Gen Intern Med. 2020;35(7):2010–6.

    Article  PubMed  PubMed Central  Google Scholar 

  • Malhotra C, Shafiq M, Batcagan-Abueg APM. What is the evidence for efficacy of advance care planning in improving patient outcomes? A systematic review of randomised controlled trials. BMJ Open. 2022a;12(7):e060201.

    Article  PubMed Central  Google Scholar 

  • Malhotra C, Ramakrishnan C, Yue SMG. Challenges in providing end-of-life care consistent with documented patient preferences. Ann Palliat Med. 2022b;11(12):3610–9.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Martina D, Lin CP, Kristanti MS, Bramer WM, Mori M, Korfage IJ, et al. Advance care planning in Asia: a systematic narrative review of healthcare professionals’ knowledge, attitude, and experience. J Am Med Dir Assoc. 2021;22(2):349.e1–e28.

    Article  PubMed  Google Scholar 

  • McMahan RD, Tellez I, Sudore RL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021;69(1):234–44.

    Article  PubMed  Google Scholar 

  • Medical Research Council. Developing and evaluating complex interventions: new guidance. London: MRC; 2006.

    Google Scholar 

  • Molloy DW, Guyatt GH, Russo R, Goeree R, O’Brien BJ, Bedard M, et al. Systematic implementation of an advance directive program in nursing homes – a randomized controlled trial. JAMA. 2000;283(11):1437–44.

    Article  CAS  PubMed  Google Scholar 

  • Nouri SS, Barnes DE, Volow AM, McMahan RD, Kushel M, Jin CS, et al. Health literacy matters more than experience for advance care planning knowledge among older adults. J Am Geriatr Soc. 2019;67(10):2151–6.

    Article  PubMed  PubMed Central  Google Scholar 

  • Phillips JL, West PA, Davidson PM, Agar M. Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: evidence from an integrative review? Int J Nurs Stud. 2013;50(8):1122–35.

    Article  PubMed  Google Scholar 

  • Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18(9):e543–e51.

    Article  PubMed  Google Scholar 

  • Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012;41(2):263–9.

    Article  PubMed  Google Scholar 

  • Rogers J, Goldsmith C, Sinclair C, Auret KA. The advance care planning nurse facilitator: describing the role and identifying factors associated with successful implementation. Aust J Prim Health. 2019;25(6):564–9.

    Article  PubMed  Google Scholar 

  • Sanders JJ, Robinson MT, Block SD. Factors impacting advance care planning among African Americans: results of a systematic integrated review. J Palliat Med. 2016;19(2):202–27.

    Article  PubMed  Google Scholar 

  • Sanders JJ, Curtis JR, Tulsky JA. Achieving goal-concordant care: a conceptual model and approach to measuring serious illness communication and its impact. J Palliat Med. 2017;21(S2):S-17–27.

    Article  Google Scholar 

  • Scott IA, Reymond L, Sansome X, Miller L. A whole-of-community program of advance care planning for end-of-life care. Aust Health Rev. 2022;46(4):442–9.

    Article  PubMed  Google Scholar 

  • Sinclair C, Auret KA, Evans SF, Jane F, Dormer S, Wilkinson A, et al. Impact of a nurse-led advance care planning intervention on satisfaction, health-related quality of life, and health care utilization among patients with severe respiratory disease: a randomized patient-preference trial. J Pain Symptom Manag. 2020;59(4):848–55.

    Article  Google Scholar 

  • Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2):163–8.

    Article  CAS  PubMed  Google Scholar 

  • Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manag. 2017;53(5):821–32.e1.

    Article  Google Scholar 

  • Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou XH, Wolinsky FD. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med. 2001;16(1):32–40.

    CAS  PubMed  PubMed Central  Google Scholar 

  • Tsuda S, Nakamura M, Miyachi J, Matsui Y, Takagi M, Ohashi H, et al. Decisional conflict in home medical care in a family-oriented society: family members’ perspectives on surrogate decision making from a multicenter cohort study. J Palliat Med. 2019;22(7):814–22.

    Article  PubMed  Google Scholar 

  • Walczak A, Butow PN, Tattersall MHN, Davidson PM, Young J, Epstein RM, et al. Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers. Int J Nurs Stud. 2017;67:31–40.

    Article  PubMed  Google Scholar 

  • Weiner JS, Cole SA. Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers. J Palliat Med. 2004;7(6):817–29.

    Article  PubMed  Google Scholar 

  • Wocial LD, Slaven JE, Montz K, Monahan PO, Hickman SE, Callahan CM, et al. Factors associated with physician moral distress caring for hospitalized elderly patients needing a surrogate decision-maker: a prospective study. J Gen Intern Med. 2020;35(5):1405–12.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. The Palliative Centre, HammondCare; and Sydney Medical School, University of Sydney, Sydney, NSW, Australia

    Josephine M. Clayton

  2. Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney, Sydney, NSW, Australia

    Tim Luckett

  3. School of Psychology, University of New South Wales, Sydney, NSW, Australia

    Craig Sinclair

  4. The Palliative Centre, HammondCare, Sydney, NSW, Australia

    Craig Sinclair

  5. Tasmanian Health Services, Hobart, TAS, Australia

    Karen Detering

Authors
  1. Josephine M. Clayton
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Tim Luckett
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Craig Sinclair
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Karen Detering
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Josephine M. Clayton .

Editor information

Editors and Affiliations

  1. HammondCare Learning and Research Centre, Greenwich Hospital, Greenwich, NSW, Australia

    Roderick Duncan MacLeod

  2. Vrije Universiteit Brussel, VUB-UGent End-of-Life Care Research Grou Vrije Universiteit Brussel, Brussels, Belgium

    Lieve Van den Block

Section Editor information

  1. Palliative and Supportive Care Service, University Hospital of Lausanne, University of Lausanne, Lausanne, Switzerland

    Philip Larkin

Rights and permissions

Reprints and permissions

Copyright information

© 2024 Springer Nature Switzerland AG

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

Clayton, J.M., Luckett, T., Sinclair, C., Detering, K. (2024). Advance Care Planning in Palliative Care. In: MacLeod, R.D., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-31738-0_25-2

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-31738-0_25-2

  • Received:

  • Accepted:

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-31738-0

  • Online ISBN: 978-3-319-31738-0

  • eBook Packages: Springer Reference Biomedicine and Life SciencesReference Module Biomedical and Life Sciences

Publish with us

Policies and ethics

Chapter history

  1. Latest

    Advance Care Planning in Palliative Care
    Published:
    02 January 2024

    DOI: https://doi.org/10.1007/978-3-319-31738-0_25-2

  2. Original

    Advance Care Planning in Palliative Care
    Published:
    02 August 2018

    DOI: https://doi.org/10.1007/978-3-319-31738-0_25-1

Search

Navigation