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Advance care planning—family carer psychological distress and involvement in decision making: the ACTION trial
  1. Isabel Vandenbogaerde1,2,3,
  2. Aline De Vleminck1,2,
  3. Joachim Cohen1,2,
  4. Mariëtte Nadine Verkissen1,2,3,
  5. Lore Lapeire4,5,
  6. Francesca Ingravallo6,
  7. Sheila Payne7,
  8. Andrew Wilcock8,
  9. Jane Seymour9,
  10. Marijke Kars10,
  11. Mogens Grønvold11,
  12. Urska Lunder12,
  13. Judith Rietjens13,
  14. Agnes van der Heide13 and
  15. Luc Deliens2,3
  1. 1 End of Life Care Research Group, Vrije Universiteit Brussel (VUB) & Universiteit Gent, Brussel, Belgium
  2. 2 Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussel, Belgium
  3. 3 Department of Public Health and Primary Care, Universiteit Gent, Gent, Belgium
  4. 4 Department of Medical Oncology, University Hospital Ghent, Ghent, Belgium
  5. 5 Cancer Research Institute Ghent (CRIG), University Hospital Ghent, Ghent, Belgium
  6. 6 Department of Medical and Surgical Sciences, University of Bologna, Bologna, Italy
  7. 7 International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster, UK
  8. 8 Nottingham University Hospitals NHS Trust, Nottingham, UK
  9. 9 School of Nursing and Midwifery, University of Sheffield, Sheffield, UK
  10. 10 Julius Centre/Palliative Care, University Medical Center Utrecht, Utecht, The Netherlands
  11. 11 Department of Public Health, University of Copenhagen, Copenhagen, Denmark
  12. 12 University Clinic of Respiratory and Allergic Diseases, Golnik, Slovenia
  13. 13 Department of Public Health, Erasmus MC, University Medical Center, Rotterdam, The Netherlands
  1. Correspondence to Isabel Vandenbogaerde, End of life care research group, Vrije Universiteit Brussel Faculteit Geneeskunde en Farmacie, Brussel, Belgium; isabel.vandenbogaerde{at}


Objectives Facilitated advance care planning (ACP) helps family carers’ to be aware of patient preferences. It can improve family carers’ involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers’ involvement in decision making in the last 3 months of the patients’ life and on the family carers’ psychological distress after 3 months of bereavement.

Methods Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers–Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES).

Results No significant effect was found on family carers involvement in decision making in the last 3 months of the patients’ life (95% CI 0.449 to 4.097). However, the probability of involvement in decision making was slightly higher in the intervention arm of the study (89.6% vs 86.7%; OR=1.357). Overall, no statistical difference was found between intervention and control group regarding the IES (M=34.1 (1.7) vs 31.8 (1.5); (95% CI −2.2 to 6.8)).

Conclusion The ACTION RC ACP intervention showed no significant effect on family carers’ involvement in decision making or on subsequent psychological distress. More research is needed about (1) how family carers can be actively involved in ACP-conversations and (2) how to prepare family carers on their role in decision making.

Trial registration number International Standard Randomised Controlled Trial Number ISRCTN17231.

  • end of life care
  • bereavement
  • cancer
  • communication

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  • Twitter @IVandenbogaerde, @SheilaPayne1

  • Contributors All authors gave final approval of the submitted manuscript and agreed to be accountable for all aspects of the work. All authors' specific contributions are listed below. Study concept and design: IV, ADV, JC, MNV, LL, FI, SP, AW, JS, MK, MG, UL, JR, AvdH and LD. Analysis and interpretation of data: IV, ADV, JC, LL, AvdH and LD. Preparation of manuscript: IV, ADV, JC, MNV, LL, FI, SP, AW, JS, MK, MG, UL, JR, AvdH and LD. AvdH and LD are joint last authors.

  • Funding This study is supported by EU Seventh Framework Programme FP7/2007-2013 under grant agreement no 602 541 and a grant from the Flemish foundation for research (FWO, no. G034717N).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.