‘Not yet’ and ‘Just ask’: barriers and facilitators to advance care planning—a qualitative descriptive study of the perspectives of seriously ill, older patients and their families Jessica Simon, 1 Pat Porterfield, 2 Shelley Raffin Bouchal, 3 Daren Heyland 4,5 1 Division of Palliative Medicine, Department of Oncology and Department of Internal Medicine, University of Calgary, Alberta, Canada 2 School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada 3 Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada 4 Clinical Evaluation Research Unit, Department of Medicine, Kingston General Hospital, Kingston, Ontario, Canada 5 Departments of Community Health and Epidemiology and Medicine, Queens University, Kingston, Ontario, Canada Correspondence to Dr Jessica Simon, Division of Palliative Medicine, Department of Oncology, University of Calgary, Room 710 South Tower, Foothills Medical Centre, 1403 29 St NW, Calgary, AB T2N 2T9, Canada; jessica.simon@ albertahealthservices.ca For the Advance Care Planning Evaluation in Elderly Patients (ACCEPT) Study Investigators and the Canadian Researchers at the End of Life Network (CARENET) Received 15 March 2013 Revised 14 September 2013 Accepted 10 October 2013 Published Online First 19 November 2013 To cite: Simon J, Porterfield P, Raffin Bouchal S, et al. BMJ Supportive & Palliative Care 2015;5:54–62. ABSTRACT Objectives To explore seriously ill, older hospitalised patients’ and their family members’ perspectives on the barriers and facilitators of advance care planning (ACP). Methods We used qualitative descriptive study methodology to analyse data from an interviewer administered, questionnaire-based, Canadian multicentre, prospective study of this population. Results Three main categories described these barriers and facilitators: (1) person (beliefs, attitudes, experiences, health status), (2) access (to doctors and healthcare providers, information, tools and infrastructure to communicate ACP preferences) and (3) the interaction with the doctor (who and how initiated, location, timing, quality of communication, relationship with doctor). Conclusions Based on the findings, we suggest strategies for both healthcare systems and individual healthcare providers to improve the quality and quantity of ACP with this population. These include assessing readiness for participation in ACP and personalising relevance of ACP to each individual, routinely offering scheduled family meetings for exploring a person’s own goals and sharing information, ensuring systems and policies are in place to access previous ACP documentation and ensuring doctors’ education includes ACP communication skills. INTRODUCTION Advance care planning (ACP), the process of reflecting on and communicating a person’s wishes and goals for their future healthcare, offers patients the potential to inform and guide their medical therapy even when they lose capacity for medical decision making. As such ACP may help us navigate through the current dilemma of healthcare, which is that advances in medical technology can prolong life beyond our ability to consent to or decline such treatment. 12 ACP has been found to have a number of benefits: it is associated with better patient quality of life during the terminal phase, better out- comes for family caregivers and a less resource-intensive care pathway at the end of life. 13–7 A low percentage of the general population within Canada, however, has undertaken ACP or included important elements such as dis- cussing plans with a healthcare provider and formally documenting a surrogate decision-maker or their wishes for health- care in a document such as an advance directive. 8 It can be anticipated that older, ser- iously ill adults will face critical decision making about the goals and interventions of their medical therapy in the final months and years of life and that these patients have much to gain from ACP. 4 The Advance Care Planning Evaluation in Elderly Patients (ACCEPT) study, a Canadian, multicentre, three-cycle audit-feedback prospective study, 9 seeks to assess the quantity and quality of ACP from these patients’ and their family members’ perspectives. Quantitative find- ings from the first audit cycle found defi- cits in the frequency and content of communication between clinicians and patients/family members and a worrying lack of concordance between patients’ stated preferences for life-sustaining ther- apies and their medical orders directing the use of these therapies. 9 ACCEPT has Research 54 Simon J, et al. BMJ Supportive & Palliative Care 2015;5:54–62. doi:10.1136/bmjspcare-2013-000487 group.bmj.com on March 8, 2016 - Published by http://spcare.bmj.com/ Downloaded from