Judith Rietjens, Ida Korfage and Agnes van der Heide, on behalf of the ACTION consortium, explain the background to their European study that aims to support people with end-stage cancer to discuss end-of-life wishes.
Advanced cancer seriously affects the quality of life of patients. Awareness of preferences regarding future medical care should be a central component of the care of patients with advanced cancer. Open and respectful communication can facilitate timely discussions about appropriate care and treatments but these tend to occur in an ad hoc manner and may not always occur.
Advance care planning (ACP) is a formalised process of communication between patients, relatives and professional caregivers about patients’ values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health and enables patients to express their views, values and treatment choices about their future medical treatment and care in a timely way. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. It may also benefit relatives or close friends who need to express preferences for these patients so that they can be taken into account when patients themselves are unable to make their own decisions.
The project called ACTION involves a dedicated consortium of researchers who are studying the effect of advance care planning in patients with end-stage cancer. Twenty-two hospitals in six countries (Belgium, Denmark, Italy, Netherlands, SIovenia and the United Kingdom) participate in this multicenter cluster randomised controlled trial. Our goal is to include 1,334 patients with advanced lung or colorectal cancer. The patients will receive either the ACP program, ‘Respecting Choices’, or ‘care as usual’.
Respecting choices involves trained healthcare professionals (‘facilitators’, mostly nurses) who assist patients and their relatives in reflecting on the patient’s goals, values and beliefs and in discussing their healthcare wishes (references: Detering KM et al. BMJ 2010;340:c1345; Respecting Choices® Advance Care Planning.)
The content of the communication during these meetings is structured by the use of interview guides. The program also supports people to identify specific activities and experiences that may contribute to, or detract from, their quality of life. Patients are encouraged to appoint a patient representative who preferably also attends the Respecting Choices sessions, and to document their preferences for (future) medical treatment and care in an advance directive. Patients are encouraged to discuss their preferences and questions they may encounter with their physician.
All participating patients will be asked to complete questionnaires at inclusion in the study, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care as received by the patient. Use of medical care will be assessed by checking medical files. The primary endpoint is patients’ quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care is aligned with patients’ preferences, patients’ evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program, from the perspectives of patients, their personal representatives, healthcare providers and facilitators.
ACTION started in December 2013 and will continue until the end of 2018. During the first 18 months of careful preparation we translated the Respecting Choices documents and adapted them to the varying cultural contexts of the six countries, while maintaining their essential core and comparability. We developed the so-called ‘My Preferences’ form, an advance directive specifically for the purpose of our study. We have also extensively trained teams of facilitators who are very motivated to deliver the intervention. We developed and translated questionnaires and patient information materials and gained ethical approval for this study in all participating countries. We have now started the exciting phase of including patients in our trial.
We are looking forward to regularly posting updates about the ACTION project on the EAPC Blog, to inform you about our experiences, highlights, struggles and results!
More about the authors…
Dr Judith Rietjens PhD, is an assistant professor at the department of Public Health of Erasmus University Medical Centre, Rotterdam, the Netherlands
Dr Ida Korfage, PhD, is an assistant professor at the department of Public Health of Erasmus University Medical Centre, Rotterdam, the Netherlands
Prof Agnes van der Heide, PhD, is a professor of decision-making and end-of-life care at the department of Public Health of Erasmus University Medical Centre, Rotterdam, the Netherlands
Prof van der Heide is the Principal Investigator of the ACTION study; Dr Rietjens and Dr Korfage are the Scientific Coordinators.