ReviewDefinition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care
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)
- et al.
Efficacy of advance care planning: a systematic review and meta-analysis
J Am Med Dir Assoc
(2014) - et al.
Advance care planning: concise evidence-based guidelines
Clin Med
(2009) - et al.
ESMO Clinical Practice Guidelines on palliative care: advanced care planning
Ann Oncol
(2014) - et al.
A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information
J Pain Symptom Manage
(2007) - et al.
Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial
Lancet
(2002) - et al.
Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure
Chest
(2012) - et al.
Insight into advance care planning for patients on dialysis
J Pain Symptom Manage
(2013) - et al.
The effects of advance care planning on end-of-life care: a systematic review
Palliat Med
(2014) - et al.
Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers
Psychooncology
(2016) - et al.
Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel
J Pain Symptom Manage
(2017)
Dying in America: improving quality and honoring individual preferences near the end of life
Capacity, care planning and advance care planning in life limiting illness
Strategic targeting of advance care planning interventions: the Goldilocks phenomenon
JAMA Intern Med
Communication strategies and cultural issues in the delivery of bad news
J Palliat Med
Determinants of forward stage transitions: a Delphi study
Health Educ Res
Applying the Delphi process to palliative care tool development: lessons learned
Support Care Cancer
Factors influencing the implementation of clinical guidelines for health care professionals: a systematic meta-review
BMC Med Inform Decis Mak
Position statement on end of life care and advance care planning
Consensus methods for medical and health services research
BMJ
The Delphi method: techniques and applications
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
Understanding advance care planning as a process of health behavior change
J Am Geriatr Soc
Stages of change for the component behaviors of advance care planning
J Am Geriatr Soc
Communication about serious illness care goals: a review and synthesis of best practices
JAMA Intern Med
Factors considered important at the end of life by patients, family, physicians, and other care providers
JAMA
Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers
J Palliat Med
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
Advance care planning: beyond the living will
Cleve Clin J Med
Advance directives and outcomes of surrogate decision making before death
N Engl J Med
How strictly do dialysis patients want their advance directives followed?
JAMA
How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study
J Am Geriatr Soc
Systematic review: the effect on surrogates of making treatment decisions for others
Ann Intern Med
Redefining the “planning” in advance care planning: preparing for end-of-life decision making
Ann Intern Med
Advance care planning in primary care, only for severely ill patients? A structured review
Fam Pract
Association between advance directives and quality of end-of-life care: a national study
J Am Geriatr Soc
The consistency between treatments provided to nursing facility residents and orders on the physician orders for life-sustaining treatment form
J Am Geriatr Soc
Sustaining hope when communicating with terminally ill patients and their families: a systematic review
Psychooncology
Factors impacting advance care planning among african americans: results of a systematic integrated review
J Palliat Med
Cited by (780)
Advance care planning in nursing homes: scoping review
2024, Revista Espanola de Geriatria y GerontologiaExperiences and perspectives on the optimal timing for initiating advance care planning in patients with mild to moderate dementia: A meta-synthesis
2024, International Journal of Nursing StudiesInvestigating the Effectiveness of Care Delivery at an Acute Geriatric Community Hospital for Older Adults in the Netherlands: A Prospective Controlled Observational Study
2024, Journal of the American Medical Directors AssociationStages of readiness for advance care planning: Systematic review and meta-analysis of prevalence rates and associated factors
2024, International Journal of Nursing StudiesAdvance Care Planning and Palliative Care Consultation in Kidney Transplantation
2024, American Journal of Kidney Diseases