TY - JOUR
T1 - Development of an advance directive 'communication tool' relevant for patients with advanced cancer in six European countries
T2 - Experiences from the ACTION trial
AU - Arnfeldt, Caroline Moeller
AU - Groenvold, Mogens
AU - Johnsen, Anna Thit
AU - Červ, Branka
AU - Deliens, Luc
AU - Dunleavy, Lesley
AU - van der Heide, Agnes
AU - Kars, Marijke C.
AU - Lunder, Urška
AU - Miccinesi, Guido
AU - Pollock, Kristian
AU - Rietjens, Judith A.C.
AU - Seymour, Jane
N1 - Publisher Copyright:
© 2022 Arnfeldt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
PY - 2022/7/28
Y1 - 2022/7/28
N2 - Background The ACTION trial evaluated the effect of a modified version of the Respecting Choices' advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed. Aim To describe the development of a multinational cancer specific advance directive, the 'My Preferences form', which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment' Form, to be used within the ACTION trial. Methods Framework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes. . .). Setting/participants ACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and 'facilitators' (N = 8) who were going to deliver the intervention. Results Ten versions of the ACTION advance directive, the 'My Preferences form', were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial. Conclusion This article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration to others wishing to develop a disease-specific advance directive or a standardised multinational advance directive.
AB - Background The ACTION trial evaluated the effect of a modified version of the Respecting Choices' advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed. Aim To describe the development of a multinational cancer specific advance directive, the 'My Preferences form', which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment' Form, to be used within the ACTION trial. Methods Framework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes. . .). Setting/participants ACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and 'facilitators' (N = 8) who were going to deliver the intervention. Results Ten versions of the ACTION advance directive, the 'My Preferences form', were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial. Conclusion This article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration to others wishing to develop a disease-specific advance directive or a standardised multinational advance directive.
U2 - 10.1371/journal.pone.0271919
DO - 10.1371/journal.pone.0271919
M3 - Journal article
C2 - 35901043
AN - SCOPUS:85135115307
VL - 17
JO - PLOS ONE
JF - PLOS ONE
SN - 1932-6203
IS - 7
ER -