Mariken Stegmann

participation in this process than other patient groups, especially when decisions are related  to quality of life. 14,16 Patients can only fulfil their role in a deliberative model and thus be part of a shared  decision‐making process when they can act as an equal conversation partner with the  healthcare provider. Typically, a shared decision‐making procedure consists of several steps  (box 1). 17  First, the doctor announces that a decision has to be made. It should be explained  that doing nothing or keeping the status quo is also an option. In the second step, the  options are described, as well as their benefits and potential side‐effects. The third step is to  discuss the patient’s preferences and finally, in the fourth step, the decision is made. In the  second step the main task of the healthcare provider is to provide information, while in the  third step active listening is important. 18  In particular in this third step the input of the  patient is essential for the quality of the process. This requires patient empowerment. 19,20  In  the context of shared decision making, empowered patients are confident to be able to have  a role in the decision making process, which is called decision self‐efficacy. 19  Although there  is ample evidence for interventions to promote empowerment of patients with chronic  diseases, 21  there exists a scarcity of literature on patients with cancer facing a treatment  decision.   Shared Decision Making (SDM) procedure  1) Announcement decision has to be made  2) Explanation of options  3) Discussion of patient’s preferences  4) Shared decision is made  Box 1.  Steps of shared decision making (SDM) procedure  Decision aids  To support the second and third step of SDM, decision aids may be implemented. Most  decision aids are disease‐specific and focus mainly on providing clear information about the  benefits and side‐effects of different treatment options. To explore patients’ preferences in  an encompassing non‐disease specific way, the Outcome Prioritisation Tool (OPT) can be  used. The OPT was first described in 2011 and is an instrument consisting of four visual  analogue scales. 22  Each scale represents an universal health outcome (Figure 1). These  outcomes have been defined as: extending life, maintaining independence, reducing pain  and reducing other symptoms. The healthcare provider invites the patient to value and  prioritise the different outcomes. Each outcome can be rated 0‐100, with a higher score  meaning higher importance. Although the instrument is widely used in practice, literature  regarding validity, feasibility, and effects is scarce.   Between the third and fourth step, there is often a need for reflection and deliberation. 18 For patients with a serious disease, this need may conflict with their concurrent sense of  urgency to start treatment. Furthermore, logistic processes at hospitals can make it difficult  to realise such a ‘time out period’. However, recently there has been a call from the  government, insurances and patient organisations to facilitate time out consultations. 23 These conversations, aimed at reflection and deliberation, can be conducted with loved ones  and/or different healthcare providers, in particular the general practitioner (GP).  10 Chapter 1