Ethical dilemmas in self-management support

In the new definition of health, health is conceptualized as the ability to adapt and self-manage. This new conceptualization fits the paradigm shift in healthcare from traditional provider-centered care toward collaborative care in which the patient plays an active role. Expectations of what self-management can achieve in chronic care are high and can count on support of many actors in the healthcare field such as national policy makers, patient organizations, and professional bodies. Critical reflection on the concept and its’ ethical implications, however, is virtually absent in the debate. This can be considered problematic since ignoring these dilemmas may hinder effective partnership between patients and professionals and consequently the effectiveness of self-management interventions. In this study we will focus on ethical dilemmas healthcare professionals, more specifically nurses, and patients are confronted with as a result of the promotion of self-management support. We will answer the following research question: Which ethical dilemmas do healthcare professionals and patients experience during self-management support and how can they deal with these dilemmas? This study will be a critical extension of the five-year ZonMw funded research program NUrsing Research into Self-management and Empowerment in Chronic Care (NURSE-CC). This program is a collaboration between Rotterdam University, the Erasmus Medical Centre (Erasmus MC) and Erasmus University Rotterdam. The aim of NURSE-CC is twofold: (1) to enhance self-management support provided by nurses to chronic care patients and (2) to improve nurses’ competencies and nursing education in this regard. Practically these aims will be reached by developing and evaluating interventions which support self-management and identifying a set of nursing competencies needed to support self-management and incorporating these in nursing education (shortly called BOKS = Body of Knowledge and Skills). The study proposed here will offer much needed insight into ethical dilemmas accompanying self-management support which can be used both in the implementation of self-management support within NURSE-CC and the improvement of nursing education. We will answer the research question through empirical research into self-management support. We will contrast our empirical findings to theories on medical professional ethics. Our study consists of the following six phases: 1) A literature scan on self-management and medical ethics and on ethical frameworks 2) Interviews with nurses and patients (n=32) 3) Observations of consultations between nurses and patients (64 hours) 4) Combining ethical theory on professional ethics and moral practice 5) Development of an ethical framework 6) Dissemination of our results This study aims to contribute to health care practice by developing an ethical framework. The framework will consist of four elements: (1) guidelines for applying the framework (as an analytical tool), (2) a set of principles and values, (3) cases drawn from our empirical work to serve as examples of ethical dilemmas that can be encountered in practice and (4) questions that support ethical deliberation. This framework can guide the development and implementation of self-management support interventions and the improvement of nursing educational programs. The ethical framework will support healthcare professionals and other actors who develop new self-management interventions. Moreover, it will prepare nurses to recognize, discuss and solve ethical dilemmas in their daily practices. We will disseminate our results through the NURSE-CC labs in the Erasmus MC. In addition the framework will be incorporated in the educational nursing program of Rotterdam University. We will also publish our framework in the book ‘Zorgbasics Self-Management’ and the professional standard on self-management. We will use the extensive national network of NURSE-CC to disseminate our findings further. At the end of the study an invitational conference will be organized for people from academia and healthcare practice. To conclude, we will write three international articles to contribute to the literature on medical ethics and self-management.