Background: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. Methods: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child’s life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Conclusion: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Background Although a mechanism for resolving ethical issues in patient care is required for accreditation of American hospitals, there are no formal qualifications for providing clinical ethics consultation (CEC), and there remains great variability in the composition of ethics committees and consult services. Consequently, the quality of CEC also varies depending on the qualifications of those performing CEC services and the format of CEC utilized at an institution. Our institution implemented an online CEC comment system to build upon existing practices to promote consistency and broad consensus in CEC services and enable quality assurance. Methods This qualitative study explored the use of an online comment system in ethics consultation and its impact on consensus building and quality assurance. All adult ethics consultations recorded between January 2011 and May 2015 (n=159) were analyzed for themes using both open and directed coding methods. Results We found that comments broadly reflected three categories: expressions of approval/agreement (87% of consults), comments about the case (89%), and comments about the written record (72%). More than one-third of consults included responses to other comments (37%). The most common types of “comments about the case” included requests for additional information (36%), recommendations for additional services (21%), and references to formal policies/standards (28%). Comments often spanned multiple categories and themes. Comments about the written record emphasized accessibility, clarity, and specificity in ethics consultation communication. Conclusions We find the online system allows for broad committee participation in consultations and helps improve the quality of CEC provided by allowing for substantive discussion and consensus building. Further, we find the use of an online comment system and subsequent records can serve as an educational tool for students, trainees, and ethics committee members.
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child’s life. This study asked bereaved parents to reflect on their child’s end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child’s life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making ( P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Context: Storytelling is a powerful tool for encouraging reflection and connection among both speakers and listeners. While growing in popularity, studying the benefits of formal oral storytelling events within graduate medical education remains rare. Our research question was: could an oral storytelling event for GME trainees and faculty be an effective approach for promoting well-being and resilience among participants? Methods: We used multiple approaches to gather perspectives from physician participants (storytellers and audience members) at an annual oral storytelling event for residents, fellows, and faculty from seven academic health systems in Minnesota. Data sources included short reflections written by participants during the event, an immediate post-event survey exploring participants' experiences during the event, social media postings, and targeted follow-up interviews further exploring the themes of connection and burnout that were raised in postevent survey responses. We performed a qualitative analysis using both deductive and inductive coding to identify themes. Results: There were 334 participants, including 197 physicians. At the event, 129 real-time written reflections were collected. There were also 33 Twitter posts related to the event.Response rate for the post-event survey was 65% for physicians, with 63% of physician respondents volunteering for targeted follow-up interviews. Of those, 38% completed the follow-up interview. Themes that emerged from the multi-modal qualitative analysis included a sense of connection and community, re-connection with meaning and purpose in work, renewal and hope, gratitude, and potential impact on burnout. Conclusion:The large turnout and themes identified show how an oral storytelling event can be a powerful tool to build community in graduate medical education. Qualitative analysis from multiple sources obtained both in real-time at the event and upon deeper reflection afterwards showed the event positively impacted the well-being of participants and that oral storytelling events can be an effective approach for promoting resilience in GME.
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