Coercion in intensive care, an insufficiently explored issue-a scoping review of qualitative narratives of patient's experiences.

Purpose: The use of coercion, in a clinical context as imposing a measure against a patient's opposition or declared will, can occur in various forms in intensive care units (ICU). One prime example of a formal coercive measure in the ICU is the use of restraints, which are applied for patients' own safety. Through a database search, we sought to evaluate patient experiences related to coercive measures. Results: For this scoping review, clinical databases were searched for qualitative studies. A total of nine were identified that fulfilled the inclusion and the CASP criteria. Common themes emerging from the studies on patient experiences included communication issues, delirium, and emotional reactions. Statements from patients revealed feelings of compromised autonomy and dignity that came with a loss of control. Physical restraints were only one concrete manifestation of formal coercion as perceived by patients in the ICU setting. Conclusion: There are few qualitative studies focusing on patient experiences of formal coercive measures in the ICU. In addition to the experience of restricted physical movement, the perception of loss of control, loss of dignity, and loss of autonomy suggests that restraining measures are just one element in a setting that may be perceived as informal coercion.

Patient narratives - a still undervalued resource for healthcare improvement.

In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.

What does coercion in intensive care mean for patients and their relatives? A thematic qualitative study.

BACKGROUND: The need for an ethical debate about the use of coercion in intensive care units (ICU) may not be as obvious as in other areas of medicine, such as psychiatry. Coercive measures are often necessary to treat critically ill patients in the ICU. It is nevertheless important to keep these measures to a minimum in order to respect the dignity of patients and the cohesion of the clinical team. A deeper understanding of what patients and their relatives perceive during their ICU stay will shed different light on intensive care management. Patients' experiences of loss of control, dependency and abandonment may lead to a new approach towards a broader approach to the concept of coercion in intensive care. The aim of our research is to explore the experiences of patients and relatives in the ICU and to determine when it might be possible to reduce feelings and memories of coercion. METHODS: We conducted and analysed 29 semi-structured interviews with patients and relatives who had been in the ICU a few months previously. Following a coding and categorisation process in MAXQDA™, a rigorous qualitative methodology was used to identify themes relevant to our research. RESULTS: Five main themes emerged: memory issues; interviewees' experiences of restricting measures and coercive treatment; patients' negative perception of situational and relational dependency with the risk of informal coercion; patients' perceptions of good care in a context of perceived dependency; progression from perception of coercion and dependency to respect for the person. All patients were grateful to have survived. However, coercion in the form of restraint, restriction of movement, and coercive treatment in the ICU was also acknowledged by patients and relatives. These included elements of informal coercion beyond restraints, such as a perceived negative sense of dependence, surrender, and asymmetrical interaction between the patient and health providers. CONCLUSIONS: To capture the full range of patients' experiences of coercion, it is necessary to expand the concept of coercion to include less obvious forms of informal coercion that may occur in dependency situations. This will help identify solutions to avoid or reduce negative recollections that may persist long after discharge and negatively affect the patients' quality of life.

Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study.

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.

Rethinking the ethical approach to health information management through narration: pertinence of Ricœur's 'little ethics'.

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur's "little ethics", based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur's ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information.

Assessing the impact of DRGs on patient care and professional practice in Switzerland (IDoC) - a potential model for monitoring and evaluating healthcare reform.

QUESTIONS UNDER STUDY: The starting point of the interdisciplinary project "Assessing the impact of diagnosis related groups (DRGs) on patient care and professional practice" (IDoC) was the lack of a systematic ethical assessment for the introduction of cost containment measures in healthcare. Our aim was to contribute to the methodological and empirical basis of such an assessment. METHODS: Five sub-groups conducted separate but related research within the fields of biomedical ethics, law, nursing sciences and health services, applying a number of complementary methodological approaches. The individual research projects were framed within an overall ethical matrix. Workshops and bilateral meetings were held to identify and elaborate joint research themes. RESULTS: Four common, ethically relevant themes emerged in the results of the studies across sub-groups: (1.) the quality and safety of patient care, (2.) the state of professional practice of physicians and nurses, (3.) changes in incentives structure, (4.) vulnerable groups and access to healthcare services. Furthermore, much-needed data for future comparative research has been collected and some early insights into the potential impact of DRGs are outlined. CONCLUSIONS: Based on the joint results we developed preliminary recommendations related to conceptual analysis, methodological refinement, monitoring and implementation.