Development and evaluation of Multidisciplinary Timely Undertaken Advance Care Planning conversations at the outpatient clinic: the MUTUAL intervention

Abstract

Advance Care Planning (ACP) is a process that enables individuals to define goals and preferences for future medical care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences as appropriate. ACP conversations are essential for providing care that is aligned with the patient’s preferences. However, ACP conversations are frequently initiated too late in the disease trajectory or not at all. This thesis focuses on the development and evaluation of an ACP intervention: the MUTUAL (Multidisciplinary Timely Undertaken Advance Care Planning) intervention. The intervention consists of the following elements: timely patient selection at the outpatient clinic using the Surprise Question (“Would I be surprised if this patient died within a year?”); preparation of both the patient and the healthcare professional; a multidisciplinary conversation with a trained nurse and the treating physician; and comprehensive documentation of the patient’s values and treatment preferences. Chapter 2 evaluates the diagnostic accuracy of the Surprise Question as a screening tool for the early identification of vulnerable patients. Chapter 3 describes the development and feasibility of the MUTUAL intervention. Chapter 4 presents a narrative analysis to examine the balance between person-centered and treatment-centered care within these conversations, illustrating how nurses first explore a patient’s personal values, fears and quality of life before the medical specialist joins. Chapter 5 examines the experiences of patients, proxies and healthcare professionals, demonstrating that while these conversations can be perceived as confrontational by patients, they are also highly valued. Chapter 6 identifies the key organizational barriers and facilitators to the implementation of the MUTUAL intervention. Chapter 7 translates the insights gained throughout this thesis into a practical guide to promote the broader implementation of ACP. Chapter 8 provides a summary and general discussion of the key findings discussed throughout this thesis.