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

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)

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 rather than principle-based 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)