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Abstract
Objective Advance care planning (ACP) clarifies goals for future care if a patient becomes unable to communicate their own preferences. However, ACP uptake is low, with discussions often occurring late. This study assessed whether a systematic nurse-led ACP intervention increases ACP in patients with advanced respiratory disease.
Design A multicentre open-label randomised controlled trial with preference arm.
Setting Metropolitan teaching hospital and a rural healthcare network.
Participants 149 participants with respiratory malignancy, chronic obstructive pulmonary disease or interstitial lung disease.
Intervention Nurse facilitators offered facilitated ACP discussions, prompted further discussions with doctors and loved ones, and assisted participants to appoint a substitute medical decision-maker (SDM) and complete an advance directive (AD).
Outcome measures The primary measure was formal (AD or SDM) or informal (discussion with doctor) ACP uptake assessed by self-report (6 months) and medical notes audit. Secondary measures were the factors predicting baseline readiness to undertake ACP, and factors predicting postintervention ACP uptake in the intervention arm.
Results At 6 months, formal ACP uptake was significantly higher (p<0.001) in the intervention arm (54/106, 51%), compared with usual care (6/43, 14%). ACP discussions with doctors were also significantly higher (p<0.005) in the intervention arm (76/106, 72%) compared with usual care (20/43, 47%). Those with a strong preference for the intervention were more likely to complete formal ACP documents than those randomly allocated. Increased symptom burden and preference for the intervention predicted later ACP uptake. Social support was positively associated with ACP discussion with loved ones, but negatively associated with discussion with doctors.
Conclusions Nurse-led facilitated ACP is acceptable to patients with advanced respiratory disease and effective in increasing ACP discussions and completion of formal documents. Awareness of symptom burden, readiness to engage in ACP and relevant psychosocial factors may facilitate effective tailoring of ACP interventions and achieve greater uptake.
Trial registration number ACTRN12614000255684.
- Advance care planning
- advance directive
- readiness
- respiratory disease
- randomised controlled trial
- medical decision-making
This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
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Contributors CS contributed to study design, grant writing, ethics application and site approvals, contributed to ACP training resource development and adaptation to the local context, conducted data analysis and drafted the manuscript. KAA contributed to study design, grant writing, ethics application and rural site approvals, contributed to ACP training resource development and adaptation, facilitated patient recruitment, provided clinical leadership to guide intervention delivery, contributed to preliminary data analysis, and revised the manuscript. SFE contributed to study design, supervised statistical analysis, revised the manuscript. FW led patient recruitment in rural setting, delivered the ACP intervention, collected data, contributed to preliminary data analysis. SD led patient recruitment in metropolitan setting, delivered the ACP intervention, collected data, contributed to preliminary data analysis. AW contributed to study design, grant writing, contributed to preliminary data analysis, revised the manuscript. KG contributed to study design, ACP training resource development and adaptation to local setting, contributed to preliminary data analysis, revised the manuscript. AK contributed to study design, grant writing, ethics application and site approvals, contributed to ACP training resource development and adaptation to local setting, contributed to preliminary data analysis. DP contributed to study design, ethics application and site approvals, contributed to ACP training resource development and adaptation to local setting, commented on draft manuscript from a consumer perspective. FB contributed to study design, grant writing, ethics application and metropolitan site approvals, contributed to ACP training resource development and adaptation, facilitated patient recruitment, provided clinical leadership to guide intervention delivery, contributed to preliminary data analysis, revised the manuscript. All authors reviewed the final manuscript and have approved it for submission.
Funding This work was supported by a grant from the WA Health Department State Health Research Advisory Committee RA/1/467/104.
Competing interests None declared.
Ethics approval The study was approved by the Human Research Ethics Committees (HREC) at Sir Charles Gairdner Hospital (2013/173), University of WA (4/1/6547), WA Country Health Service (WACHS 1305) and the WA Department of Health (2014/46).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Owing to a planned linkage of these data with healthcare usage data held by the WA Department of Health, there are currently restrictions on the open publication of the raw data reported here.