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.
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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
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