title: Advance care planning uptake among patients with severe lung disease: a randomised patient preference trial of a nurse-led, facilitated advance care planning intervention.
abstract: 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.
  
  
  
  A multicentre open-label randomised controlled trial with preference arm.
  
  
  
  Metropolitan teaching hospital and a rural healthcare network.
  
  
  
  149 participants with respiratory malignancy, chronic obstructive pulmonary disease or interstitial lung disease.
  
  
  
  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).
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  ACTRN12614000255684.
authors.affiliation: Rural Clinical School of Western Australia, University of Western Australia, Albany, Western Australia, Australia.
authors.forename: Craig
authors.initials: C
authors.lastname: Sinclair
authors.affiliation: Rural Clinical School of Western Australia, University of Western Australia, Albany, Western Australia, Australia.
authors.forename: Kirsten Anne
authors.initials: KA
authors.lastname: Auret
authors.affiliation: Rural Clinical School of Western Australia, University of Western Australia, Perth, Western Australia, Australia.
authors.forename: Sharon Frances
authors.initials: SF
authors.lastname: Evans
authors.affiliation: Rural Clinical School of Western Australia, University of Western Australia, Albany, Western Australia, Australia.
authors.forename: Fiona
authors.initials: F
authors.lastname: Williamson
authors.affiliation: Respiratory Department, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
authors.forename: Siobhan
authors.initials: S
authors.lastname: Dormer
authors.affiliation: School of Nursing and Midwifery, Edith Cowan University, Perth, Western Australia, Australia.
authors.forename: Anne
authors.identifier: 0000-0002-2406-6552
authors.initials: A
authors.lastname: Wilkinson
authors.affiliation: Department of Health, WA Cancer and Palliative Care Network, Perth, Western Australia, Australia.
authors.forename: Kim
authors.initials: K
authors.lastname: Greeve
authors.affiliation: Department of Health, WA Cancer and Palliative Care Network, Perth, Western Australia, Australia.
authors.forename: Audrey
authors.initials: A
authors.lastname: Koay
authors.affiliation: Western Australian Country Health Service, District Health Advisory Committee, Albany, Western Australia, Australia.
authors.forename: Dot
authors.initials: D
authors.lastname: Price
authors.affiliation: Respiratory Department, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
authors.forename: Fraser
authors.initials: F
authors.lastname: Brims
mesh_terms: D016223:Advance Directives / Q000706:statistics & numerical data*; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D003657:Decision Making; D005260:Female; D006801:Humans; D016015:Logistic Models; D008171:Lung Diseases / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D018802:Patient-Centered Care / Q000458:organization & administration; D013727:Terminal Care / Q000379:methods
keywords: Advance care planning; advance directive; medical decision-making; randomised controlled trial; readiness; respiratory disease