Elsevier

The Lancet Oncology

Volume 18, Issue 9, September 2017, Pages e543-e551
The Lancet Oncology

Review
Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

https://doi.org/10.1016/S1470-2045(17)30582-XGet rights and content

Summary

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Introduction

Advance care planning (ACP) enables individuals to make plans about their future health care. Robust evidence from systematic reviews shows that ACP increases the completion of advance care directives and occurrence of discussions about future health care in clinical practice and improves consistency of care with patients' goals in various patient populations, including oncology.1, 2 ACP can improve the quality of patient–clinician communication, reduce unwanted admission to hospitals, increase the use of palliative care, and increase patient satisfaction and quality of life.1, 2 In 2016, a systematic review3 suggested broad support for ACP among patients with cancer and their health-care providers. Interest in ACP continues to grow, as indicated by an increasing number of related scientific publications, programmes, laws, and public awareness campaigns on the topic. However, several challenges in ACP require greater consensus before its potential can be fully realised.

First, the concept and content of ACP substantially varies. Originally, ACP was conceptualised as only the completion of an advance care directive, to be used when the individual's capacity to indicate preferences had been lost. More recently, ACP is increasingly considered to be a complex process that includes personal reflection and discussion with clinicians about the patient's wishes, the appointment of a health-care representative, completion of an advance care directive, and changes to the health-care system. These developments have resulted in growing interest in ACP beyond geriatric study, such as in oncology.3 Previous initiatives to define ACP have poor generalisability because they are mostly restricted to North America or the UK,4, 5, 6, 7 or to specific patient groups or disciplines.6, 8 Second, there is a need for guidance regarding the timing of ACP. For example, introducing ACP too early could lead to a reluctance to engage in ACP, whilst engaging in ACP in the face of a crisis or shortly before dying could be too late.9 A third challenge in ACP is that differences in patient preference, knowledge, and health literacy could complicate navigation of ACP by health-care professionals.10 Finally, there is an urgent need to determine the most relevant outcome measures for evaluating ACP.

To date, there is no consensus regarding the definition of ACP, nor are there any practice recommendations that are applicable to various cultural settings and personal values. This lack of agreement hinders the development of ACP programmes and the evaluation of ACP's effectiveness. Therefore, we aimed to develop a consensus definition of ACP and present recommendations for ACP that can be used by health-care providers, policy makers, and researchers across a broad spectrum of patient populations, disease categories, and cultures.

Section snippets

Methods

An international taskforce consisting of 15 recognised experts from eight countries (Belgium, Canada, Germany, Ireland, Italy, Netherlands, UK, and USA) designed a five-round Delphi study to build a systematic consensus on ACP. The European Association for Palliative Care (EAPC) Board commissioned this consensus project and invited JACR and IJK to chair the taskforce on the basis of their expertise in ACP and previous interdisciplinary and international comparative work. JACR and IJK invited

Findings

The panel and table present the definitions and final recommendations of ACP. In round 2, the extended definition was given a median rating of 2 (strong agreement) and an IQR of 1 (very strong consensus), and the brief definition was given a median of 2 (strong agreement) and an IQR of 2 (strong consensus). In this round, 28 (76%) of the 37 recommendations received very strong agreement and very strong consensus (a median of 1 and an IQR of 0 or 1).

In round 3, ten recommendations were added and

Discussion

To the best of our knowledge, we have drafted the first unifying, transcultural, international consensus definition of ACP and recommendations for its application through a rigorous, large international Delphi study. The recommendations guide the way in which ACP should be done and integrated into health care and suggest outcome measures of ACP. Most recommendations received full consensus from our multi-disciplinary panel, which also included patient representatives. Most recommendations

Conclusion

Our large international Delphi panel came to a consensus on an ACP definition and recommendations for its application. This Review represents an important first step in providing clarity with a view to further policy and research in this field. We hope these recommendations will have a catalytic effect to further benefit patients and their relatives by facilitating the provision of care to patients with cancer, and others, that is aligned to their preferences and goals, thus contributing to

References (77)

  • S Conroy et al.

    Advance care planning: concise evidence-based guidelines

    Clin Med

    (2009)
  • Capacity, care planning and advance care planning in life limiting illness

  • JA Billings et al.

    Strategic targeting of advance care planning interventions: the Goldilocks phenomenon

    JAMA Intern Med

    (2014)
  • JS Barclay et al.

    Communication strategies and cultural issues in the delivery of bad news

    J Palliat Med

    (2007)
  • E De Vet et al.

    Determinants of forward stage transitions: a Delphi study

    Health Educ Res

    (2005)
  • PD Biondo et al.

    Applying the Delphi process to palliative care tool development: lessons learned

    Support Care Cancer

    (2008)
  • AL Francke et al.

    Factors influencing the implementation of clinical guidelines for health care professionals: a systematic meta-review

    BMC Med Inform Decis Mak

    (2008)
  • Position statement on end of life care and advance care planning

  • J Jones et al.

    Consensus methods for medical and health services research

    BMJ

    (1995)
  • HA Linstone et al.

    The Delphi method: techniques and applications

    (1975)
  • JT van der Steen et al.

    White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care

    Palliat Med

    (2014)
  • TR Fried et al.

    Understanding advance care planning as a process of health behavior change

    J Am Geriatr Soc

    (2009)
  • TR Fried et al.

    Stages of change for the component behaviors of advance care planning

    J Am Geriatr Soc

    (2010)
  • RE Bernacki et al.

    Communication about serious illness care goals: a review and synthesis of best practices

    JAMA Intern Med

    (2014)
  • KE Steinhauser et al.

    Factors considered important at the end of life by patients, family, physicians, and other care providers

    JAMA

    (2000)
  • JS Weiner et al.

    Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers

    J Palliat Med

    (2004)
  • JW Mack et al.

    End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences

    J Clin Oncol

    (2010)
  • BJ Messinger-Rapport et al.

    Advance care planning: beyond the living will

    Cleve Clin J Med

    (2009)
  • MJ Silveira et al.

    Advance directives and outcomes of surrogate decision making before death

    N Engl J Med

    (2010)
  • A Sehgal et al.

    How strictly do dialysis patients want their advance directives followed?

    JAMA

    (1992)
  • DP Sulmasy et al.

    How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study

    J Am Geriatr Soc

    (2007)
  • D Wendler et al.

    Systematic review: the effect on surrogates of making treatment decisions for others

    Ann Intern Med

    (2011)
  • RL Sudore et al.

    Redefining the “planning” in advance care planning: preparing for end-of-life decision making

    Ann Intern Med

    (2010)
  • JJ Glaudemans et al.

    Advance care planning in primary care, only for severely ill patients? A structured review

    Fam Pract

    (2015)
  • JM Teno et al.

    Association between advance directives and quality of end-of-life care: a national study

    J Am Geriatr Soc

    (2007)
  • SE Hickman et al.

    The consistency between treatments provided to nursing facility residents and orders on the physician orders for life-sustaining treatment form

    J Am Geriatr Soc

    (2011)
  • JM Clayton et al.

    Sustaining hope when communicating with terminally ill patients and their families: a systematic review

    Psychooncology

    (2008)
  • JJ Sanders et al.

    Factors impacting advance care planning among african americans: results of a systematic integrated review

    J Palliat Med

    (2016)
  • Cited by (0)

    View full text