Towards implementation of Advance Care Planning in hospitals. An exploration of challenges and opportunities.

TITLE: Towards implementation of Advance Care Planning in hospital: Understanding obstacles to change and what is valued in the concept. INTRODUCTION Due to evidence-based medicine, the process of dying has changed in Western societies. Patients live longer with an incurable disease and the dying process can be manipulated. (1) Together with the increasing medical options and seemingly endless technical possibilities, the ethical question "Can we let a patient die if there are still treatment options?" has been raised. (1) Besides this new ethical challenge, the view of what constitutes good care has shifted from (soft-) paternalism to autonomy, with a focus on respect for the choices of the patient. (2) The creation of the concept of Advance Care Planning by academics can be understood in this context. The concept was defined as a process of communication among patients, their healthcare providers, their families, and important others regarding the kind of care that would be considered appropriate when the patient was unable to make decisions about his or her care. (3) It was an attempt to ease implementation of informed choice-making for this group of patients, as foreseen in the Self-Determination Act (1990, US). (3) Belgium followed in 2002, with the Patients-Right Act. (4) The systematic review of Brinkman-Stoppelenburg et al. (2014) shows that complex ACP interventions which include professional patient-health communication have resulted in preference-concordant care, an increased frequency of out-of-hospital and out-of-ICU care, an increased compliance with patients' end-of-life wishes and satisfaction with care. (5) International research shows that implementation of ongoing ACP communication in health care services is scarce. (6) For Belgium, it is not clear how many patients are involved in ongoing communication about goals of care, but there are findings that indicate that Belgian patients are often not involved in decision-making about goals and desired direction of their care. (7) It is therefore recommended that ACP discussions occur in every care setting throughout the care trajectory. (8) Literature suggests that there are differences between health care services in the prevalence of ACP and they suggest that ACP is less prevalent in a hospital setting. The systematic review of Lovell and Yates (2014) shows that being treated in hospital without primary care support seems to decrease the chance of having end-of-life care documented. (9) Some figures exist for the Belgian situation. Meeussen et al. 13 found that patients who had had contact with their GPs in the last weeks of their lives, or who had died at home had higher rates of ACP than hospitalized patients who had died in hospital. However, the previous study may not have captured all ACP episodes due to a lack of documentation or to GPs not being aware of ACP completed in the hospital. De Gendt et al. reported that nursing home residents who had not been transferred to a hospital during the last 3 months of life, who had died in the nursing home and who had had longer lengths of stay were more likely to have had ACP documented. (10) These are painful findings, certainly because we know that the hospital setting is very present in the care trajectory of Belgian palliative patients. (11,12) More than in any other setting, hospitalized palliative patients and their families are faced with important decisions concerning treatments with a big impact on physical and psychosocial well-being and life-saving interventions. (13-15) A lack of ACP discussions in the hospital may lead to patients feeling overly optimistic about their prognosis, thereby choosing aggressive medical care with a high treatment burden or a high likelihood of an undesirable outcome. (16) Consequently, failure to engage in ACP discussions in a hospital has been associated with significantly greater risk of death. (17) So far, attempts to embed ACP in routine palliative (hospital) care have not resulted in large-scale uptake. (18) Literature also suggests that the hospital holds specific challenges for communication. (18-20) What is needed to improve the uptake of ACP discussions in the hospital setting? First, research shows that when obstacles to change and helpful factors concerning a specific intervention have been identified, and when they are taken into account during implementation, the interventions are more likely to improve professional practice. These interventions are called tailored interventions. (22) One of the conclusions in the systematic review of Lovell & Yates is that the (experienced) obstacles and helpful factors in the uptake of ACP remain only poorly understood. (9) Another finding of this review is that barriers to ACP are more complex than deficits in the knowledge of individuals and instead extend to entire health systems. The authors state that changes to health systems are necessary in order to enhance implementation. (9) However, less is known about these system-level barriers. (6) Second, innovations that are compatible with the perceived needs and intended adopters' values and norms are more readily adopted. (23) What is of value is dependent on the local culture and context. (23) If an innovation is adapted to the local context, it is more likely to be successfully implemented and routinized. (23-26) What is experienced as valuable in ACP discussions in a hospital setting, might differ from what is experienced as valuable by patients, families and professionals in the primary care setting and the nursery home. Moreover, it might differ for the different parties involved: hospitalized patients, their families, hospital physicians and nurses, they all might value other aspects in ACP discussions. ASSUMPTIONS, SPECIFIC AIMS AND RESEARCH QUESTIONS OF THE PROJECT The underlying aim of our study is to facilitate implementation of ongoing Advance Care Planning discussions between hospitalized patients, their families, hospital physicians and nurses. There are two assumptions and research questions in this study: Assumption I: The hospital setting holds specific challenges for the implementation of ACP by the populations dealing with ACP. The first aim of the study is to get a better understanding of the experienced obstacles and helpful factors for hospitalized palliative patients, their families, physicians and nurses in starting ACP-discussions in the hospital practice. Research question I: What are the experienced obstacles and helpful factors for hospitalized palliative patients, their families, physicians and nurses in starting ACP-discussions in the hospital practice? Assumption II: ACP is valuable for hospital professionals, hospitalized patients and their families, but the concept of ACP is not well tuned to the needs of this population. The second aim of the study is to get a better understanding of the value of ACP discussions for hospitalized palliative patients, their families, hospital physicians and nurses. Research question II: What is the value of ACP discussions for hospitalized palliative patients, their families, hospital physicians and nurses? METHODOLOGY I. Design As research on barriers and facilitating factors in the hospital setting as a whole to start ACP discussions is almost non-existent (9) , a qualitative method is used to study this topic. Moreover, most theories on implementation of evidence in health care emphasize the importance of developing a good understanding of obstacles. (27) This pleads for qualitative methods. The method is also more tuned to the often very ill palliative patients and charged families. In order to get a better understanding of what is experienced as valuable in ACP discussions, we use qualitative in-depth studies with the four concerned parties. The idea that ACP should be tuned to the needs of the concerned population is not new (28,29), but it's the first time that a study is conducted for these specific populations. In this study an exploratory design is used for both research questions. II. Procedure STUDY PART 1 For this part of the study, experts on the subject, in Belgium and worldwide, are purposefully sampled (30) according to their expertise in working with palliative patients in the acute hospital setting. The collection and analysis are done following the Delphi Survey technique. (30) The first part of the study is conducted to enhance reliability of the study as a whole; data are triangulated. STUDY PART 2 Semi-structured interviews are consecutively taken from hospital physicians, nurses, patients and families. For all populations, we interview at a university hospital. Interviews are collected from the three main care trajectories (populations with respectively organ failure, frail old population and the oncology population) and until saturation is reached. We expect that 10 to 15 interviews will be taken from each population. Participants are theoretically sampled. After comparison with the collected data of the first part of the study, the research group might decide to strengthen the data with focus groups with theoretically sampled hospital physicians, nurses and families to question the theory that was built on data from the previous interviews. All interviews and focus groups are conducted by the same researcher. They are audiotaped and transcribed verbatim with the participants' consent. Data analysis of the interviews is done through thematic analysis based on grounded theory analysis principles. (31-35) It proceeds with a cyclic process and is characterized by simultaneous and systematic data collection and analysis: a constant forwards-backwards wave, during which developing patterns are verified with newly collected data. Data will be triangulated by an interactive team process where all authors read all of the interviews and discuss the analysis repeatedly. The analysis of the focus groups is done with thematic analysis based on grounded theory analysis principles. Data management is supported by the software MAXQDA. (31-35) III. Reliability and Validity Reliability is optimized by prolonged engagement of the researcher, data-triangulation, peer debriefing, negative case analysis, member checks, referential adequacy. (36) Furthermore, reliability is enhanced by an interactive team process in which all authors read all of the interviews and discuss the analysis repeatedly. (36) Validity is optimized by analytic induction, constant comparative method and seeking out and addressing deviant cases. The impact of the researcher and respondent are included in the reflexivity process. (36) The researcher keeps a reflective journal. Like all qualitative studies, this study aims at getting an in-depth, rich understanding of the research questions. The knowledge acquired is context-dependent. Thick description will allow analytic generalization for other researchers. CONCLUSION This study is an attempt to understand the challenges to operationalizing a model of ACP and to provide direction for future research and clinical practice improvement in the area of ACP communication. First, recommendations will be made on how to help hospital physicians, nurses, hospitalized patients and their families in having the kind of ACP discussions they experience as valuable and on how to overcome barriers. Second, recommendations will be made for hospital management on how to help hospital professionals in overcoming experienced barriers and strengthen experienced facilitators. Third, because of the different perspectives that are taken into account, different interests can be shown. This will lead to recommendations on how to reconcile them in order to improve implementation in the hospital practice. 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