Continuing a series of posts from members of the ACTION Consortium about their European study that aims to investigate how to support people with advanced cancer to have a conversation about preferences and wishes.
Marieke Zwakman, Marijke Kars and Hans van Delden, Team Utrecht, discuss whether Health Care Professionals should use an open or structured approach when performing an Advance Care Planning conversation.
There is a growing interest in Advance Care Planning (ACP). ACP involves a process of conversations between patients and their relatives about patients’ goals and wishes for future care and treatment to prepare for events in which patients may not be able to make decisions for themselves. Although ACP is viewed as an important strategy to improve the communication between patients and Health Care Professionals (HCPs) (Brinkman, 2014), in practice the frequency of conversations remains low.
In the Netherlands, there is no accepted standard on how to perform an ACP conversation. From our experience, HCPs typically conduct these conversations intuitively. They tend to use an open and flexible approach (open strategy). By applying an open strategy, they maximally follow the patient, which means that they reply to patients’ questions and signals in a very individualized and sensitive way. In line with this, HCPs are inclined not to mention topics the patient might not want to talk about or topics they consider to be potentially stressful for the patient. An important goal for HCPs who engage in ACP is to prevent confrontations that could unbalance the patient (Mullick, 2013). However, as a result of this approach patients might miss out on the opportunity to think and talk about aspects of ACP that they themselves do not mention.
Currently, there is an increase in initiatives that provide more guidance to HCPs to conduct an ACP conversation. With the open strategy at one end, the other end of the continuum consists of a completely scripted approach. When HCPs use a scripted ACP conversation guide, discussing all topics that are addressed in the guide may pose a challenge given the barriers for engaging in ACP that have been reported by HCPs (e.g. the fear of upsetting the patient by destroying hope) (Mullick, 2013). However, a script could be a strategy that provides guidance and which enables HCPs to ask potentially difficult questions. Consequently, patients and their relatives will have the opportunity to become aware of the patient’s wishes and preferences and will probably even discuss topics they did not think about before.
It seems that both strategies have a number of advantages as well as disadvantages. Using a scripted intervention enables researchers to safeguard the fidelity of the intervention. Consequently, this will improve the quality of the research. In the ACTION study (a cluster randomised controlled trial in six European countries), a structured ACP script that is a modified version of the ‘Respecting Choices’ programme is tested (Rietjens, 2016). In an embedded qualitative study, we investigate the experiences of the patients, their relatives and their HCPs with this programme. This qualitative study will increase our understanding of conducting, and participating in a scripted ACP conversation and will contribute to the improvement of ACP interventions.
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- Read more posts from the ACTION Consortium on the EAPC Blog.
- Brinkman-Stoppelenburg, A., et al (2014) The effects of advance care planning on end-of-life care: A systematic review, Palliative Medicine DOI: 10.1177/0269216314526272.
- Mullick, A., et al (2013) An introduction to advance care planning in practice, BMJ DOI: 10.1136/bmj.f6064.
- Rietjens J.A., et al (2016) Advance care planning – a multicentre cluster randomised clinical trial: the research protocol of the ACTION study, BMC Cancer 16:264 DOI 10.1186/s12885-016-2298-x.
More about the authors . . .
Marieke Zwakman is a PhD student at the Julius Center for Health Sciences and Primary Care, Department Medical Humanities, University Medical Center Utrecht.
Marijke Kars is Assistant Professor at the Julius Center for Health Sciences and Primary Care, Department Medical Humanities, University Medical Center Utrecht. Hans van Delden is Chair of the Department of Medical Humanities and full Professor of Medical Ethics at the Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht.