A Nurse-led Patient-centred Intervention to Increase Written Advance Directives for Outpatients With Progressive Chronic Illnesses: a Randomized Controlled Trial With an Embedded Explanatory Qualitative Study

Background and rationale: In Switzerland, only 10% of deaths per year occur suddenly and unexpectedly and about two thirds of people die from an illness after receiving medium to long-term medical care for their life limiting conditions. A large proportion of the population has an invested interest in the process of advance care planning (ACP) for end-of-life care and the use of anticipated directives (ADs). The purpose of ADs is to give people the opportunity to indicate their preferences, beliefs, values or fears to healthcare professionals and choose a surrogate, in case of loss of capacity and discernment.

Despite perceived utility of ADs, interventions to increase rates of legally completed ADs have produced few significant increases in their uptake and use. For instance, literature shows that in Swiss about 5-14 % of adults have completed ADs. Recent research shows that, even when people are informed about ADs, a great majority do not formalise their choices by writing their ADs. This raises questions about how best to encourage patients (passively or actively) to engage in the process of ADs and how health professionals could support them.

Current developments in anticipated decision-making shifted from the traditional completion of ADs towards Advance Care Planning (ACP). This concept is seen as a continuous development of communication between patients, close relatives and health professionals with the aim to define a common orientation for care and treatment. ADs are now seen as part of the ACP process which focused on preferences, goals of care, life-sustaining treatments, palliative options, surrogate decision-making and documentation (as ADs).

Some recent systematic reviews highlight the heterogeneity of ACP interventions, setting stakeholders, designs, measures or outcomes. The efficacy of ACP interventions for different populations, and more specifically in the completion of ADs and the occurrence of end-of-life discussions was shown in some studies. However, it is not clear which elements of ACP are effective and how to best favour the implementation of it in practice. There remains nevertheless, a lack of well-conducted RCTs to evaluate ACP intervention irrespective of the setting. And this needs to be improved by developing intervention programs in the topic and to overcome barriers that might limit engagement in ACP, such as professionals', patients' and close relatives' discomfort with end-of-life issues.

Hospital stays are increasingly being shortened and as a consequence, patients are exposed to a multitude of professionals who may not be in a position to adequately discuss the delicate subject of end-of-life care, due to the priority of providing acute care for many patients. Moreover, when focusing on populations near the end of their lives (life expectancy less than six months), for around 40% of patients, it was too late to initiate ADs (and thus ACP) due to cognitive impairment.