Background: Ethical problems are a universal phenomenon but rarely researched concerning patients dying from acute stroke. These patients often have a reduced consciousness from stroke onset and thereby lack ability to convey their needs and could be described as ‘incompetent’ decision makers regarding their own care. Objective: The aim of the study was to deepen the understanding of stroke team members’ reasoning about truth-telling in end-of-life care due to acute stroke. Research design: Qualitative study based on individual interviews utilizing combined (...) deductive and inductive content analysis. Participants and research context: A total of 15 stroke team members working in stroke units of two associated county hospitals in western Sweden participated. Ethical considerations: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. Findings: The main findings were the team members’ dynamic movement between the categories ‘Truth above all’ and ‘Hide truth to protect’. Honesty was highly valued and considered as a reason for always telling the truth, with the argument of truth as common morality. However, the carers also argued for hiding the truth for different reasons such as not adding extra burden in the sorrow, awaiting a timely moment and not being a messenger of bad news. Withholding truth could both be seen as a way of protecting themselves from difficult conversations and to protect others. Discussion: The results indicate that there are various barriers for truthfulness. Interpreted from a virtue of ethics perspective, withholding of truth might also be seen as an expression of sound judgement to put the patient’s best interest first. Conclusion: The carers may need support in the form of supervision to be given space to reflect on their experience and thereby promote ethically justified care. Here, the multi-professional team can be of great value and contribute through inter-professional sharing of knowledge. (shrink)

Shared decision-making between patients and physicians strives to balance decisional responsibility for clinical decisions. Directed by patients, SDM incorporates patients’ values and prefere...

The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based (inductive) rather than principle-based (deductive) method. By discusing the (...) advantages and disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues. (shrink)

Background In April 2019, our hospital transitioned to an electronic patient record system and patient portal. MyGOSH enables young people aged 12 years or older and their parents to access results, documentation, appointments, and to communicate with their care team. Aims A focus group was conducted to explore the ethical and legal considerations of young people and their parents using a patient portal from the perspective of hospital Ethics Committee members. Participants and research context Members of the hospital Paediatric Bioethics (...) Centre were recruited. Written informed consent was provided by all participants. Research design The focus group discussion was recorded, transcribed verbatim and analysed using thematic analysis. Ethical considerations Health Research Authority Research Ethics Committee Approval was granted by London Southeast REC. Results Four themes, and sub-themes, were identified: granting access – complexities of assessing competence/capacity, exclusion from MyGOSH due to non-disclosure of diagnosis, and truth-telling; inequalities resulting in inequities – complexities of inequity in access; responding to change – providing support and managing expectations; engagement, empowerment and understanding – data safety, empowering young people to take ownership of their health data, a one-size fits all system may not meet the needs of all families, and early engagement with young people/parents. Discussion Giving families portal access can increase engagement, empowering them to be more involved in care, yet poses challenges for all. Complexities exist in the assessment for portal access, and supporting and managing user expectations whilst providing an equitable service. Conclusions Ongoing support is required for all stakeholders following patient portal implementation to navigate the ethical and legal complexities, and to promote equity and portal utility for patient benefit. (shrink)

-/- Background: Nurses who provide aggressive care often experience the ethical challenge of needing to preserve the hope of seriously ill patients and their families without providing false hope. -/- Research objectives: The purpose of this inquiry was to explore nurses’ moral competence related to fostering hope in patients and their families within the context of aggressive technological care. A secondary purpose was to understand how this competence is shaped by the social–moral space of nurses’ work in order to capture (...) how competencies may reflect an adaptation to a less than ideal work environment. -/- Research design: A critical qualitative approach was used. -/- Participants: Fifteen graduate nursing students from various practice areas participated. -/- Ethical considerations: After receiving ethics approval from the university, signed informed consent was obtained from participants before they were interviewed. -/- Findings: One overarching theme ‘Mediating the tension between providing false hope and destroying hope within biomedicine’ along with three subthemes, including ‘Reimagining hopeful possibilities’, ‘Exercising caution within the social–moral space of nursing’ and ‘Maintaining nurses’ own hope’, was identified, which represents specific aspects of this moral competency. -/- Discussion: This competency represents a complex, nuanced and multi-layered set of skills in which nurses must be well attuned to the needs and emotions of their patients and families, have the foresight to imagine possible future hopes, be able to acknowledge death, have advanced interpersonal skills, maintain their own hope and ideally have the capacity to challenge those around them when the provision of aggressive care is a form of providing false hope. -/- Conclusion: The articulation of moral competencies may support the development of nursing ethics curricula to prepare future nurses in a way that is sensitive to the characteristics of actual practice settings. (shrink)

Background: Cone Beam Computed Tomography (CBCT), the focus of a number of radiotherapy fundraising campaigns in the mid-2000s, was introduced accompanied by a fanfare of newness and discourses of ‘hope’, ‘inspiring clinical confidence’ and ‘accuracy’. The CBCT system, used in the delivery of Radiotherapy treatment, was incorporated into strategic planning priorities across the United Kingdom based on a rationale of self-evidence. During this time, the way in which the new system was discussed with patients was variable. Research objectives: The purpose (...) of this study was to uncover how experimental practices were embedded and enacted during the use of a new technological system, specifically relating to how patients were enrolled during introductory phases of technology adoption. Research design and context: Drawing on ethnographic work and interviews with staff members in one hospital, the study examines staff discussions prior to the introduction of the Cone-Beam CT imaging system in radiotherapy. It considers how staff views were at odds with practices that occurred during the ‘experimental’ stages of use and how these were shared with patients. Ethical considerations: Approval was obtained from the Local National Health Service Research Ethics Committee and National Health Service Main Research Ethics Committee (REC 07/Q1308/16) for the interview and ethnographic stages, respectively. All names have been changed and participants signed a consent form. Findings: Staff reported a lack of evidence, absence of proof and perturbing doubts with the X-ray volumetric imaging. Both patients’ and practitioners’ partial understanding about the risks and benefits of the system created incommensurable ideas regarding its use and what the patients’ role was during these introductory stages. Conclusion: Maintaining partial truth telling renders patients’ experiences of new treatment at odds with ‘experimental’ practice. This has wide-reaching implications for practice. (shrink)