Stephen Liben

Paediatric palliative care: challenges and emerging ideas

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.

Professional identity formation in medical education for humanistic, resilient physicians: pedagogic strategies for bridging theory to practice.

Recent calls for an expanded perspective on medical education and training include focusing on complexities of professional identity formation (PIF). Medical educators are challenged to facilitate the active constructive, integrative developmental process of PIF within standardized and personalized and/or formal and informal curricular approaches. How can we best support the complex iterative PIF process for a humanistic, resilient health care professional? How can we effectively scaffold the necessary critical reflective learning and practice skill set for our learners to support the shaping of a professional identity? The authors present three pedagogic innovations contributing to the PIF process within undergraduate and graduate medical education (GME) at their institutions. These are (1) interactive reflective writing fostering reflective capacity, emotional awareness, and resiliency (as complexities within physician–patient interactions are explored) for personal and professional development; (2) synergistic teaching modules about mindful clinical practice and resilient responses to difficult interactions, to foster clinician resilience and enhanced well-being for effective professional functioning; and (3) strategies for effective use of a professional development e-portfolio and faculty development of reflective coaching skills in GME. These strategies as “bridges from theory to practice” embody and integrate key elements of promoting and enriching PIF, including guided reflection, the significant role of relationships (faculty and peers), mindfulness, adequate feedback, and creating collaborative learning environments. Ideally, such pedagogic innovations can make a significant contribution toward enhancing quality of care and caring with resilience for the being, relating, and doing of a humanistic health care professional.

Writing for publication in medical education: The benefits of a faculty development workshop and peer writing group

Background: Although educational innovations in medical education are increasing in number, many educators do not submit their ideas for publication. Aims: The goal of this initiative was to assist faculty members write about their educational innovations. Method: Twenty-four faculty members participated in this intervention, which consisted of a half-day workshop, three peer writing groups, and independent study. We assessed the impact of this intervention through post-workshop evaluations, a one-year follow-up questionnaire, tracking of manuscript submissions, and an analysis of curriculum vitae. Results: The workshop evaluations and one-year follow-up demonstrated that participants valued the workshop small groups, self-instructional workbook, and peer support and feedback provided by the peer writing groups. One year later, nine participants submitted a total of 14 manuscripts, 11 of which were accepted for publication. In addition, 10 participants presented a total of 38 abstracts at educational meetings. Five years later, we reviewed the curriculum vitae of all participants who had published or presented their educational innovation. Although the total number of publications remained the same, the number of educationally-related publications and presentations at scientific meetings increased considerably. Conclusions: A faculty development workshop and peer writing group can facilitate writing productivity and presentations of scholarly work in medical education.

Signs of life and signs of death: brain death and other mixed messages at the end of life.

Brain death is a medical, legal and cultural category constructed to fill an important need created by evolving medical technologies and practices. However, managing life and death via organ transplants and brain death criteria is not without controversy; there remains much confusion and ambivalence in both lay and medical populations regarding both organ donation and the diagnostic category of brain death. By way of a case study of cranial trauma taken from a larger study of bereaved parents, this article discusses how, from a parents perspective, brain death and organ donation are neither morally nor medically straightforward concepts. The case study presented in this article demonstrates the necessity for more research and clinical training in communication issues regarding brain death and end-of-life care with families in critical care situations.

Physician driven variation in the care of children with spinal muscular atrophy type 1

Increasing numbers of families are requesting active supportive management for their child with spinal muscular atrophy type 1 (SMA1), leading to longer survival and greater prevalence of affected children. Strong opinions exist among physicians for and against the provision of care measures prolonging life. Objective: To describe current practice in the care of SMA1 in Canada, and explore the factors underlying inter‐physician variability. Methods: A cross‐sectional survey of Canadian hospital‐based pediatric neurologists and pediatric respirologists was performed in 2015. Odds ratios and 95% confidence intervals were calculated to compare proportions between groups. Results: There was a 54% completion rate (99 physicians). Over half of participants believed that a disease modifying therapy was likely within 10 years. Quebec respirologists were 50 times less likely to offer long‐term non‐invasive ventilation (NIV) than respirologists in other provinces (OR 50.6, 95% CI 2.4–1075.3), and 20 times less likely to discuss tracheostomy with families (OR 20.4, 95% CI 2.0–211.8). High raters of perceived happiness of affected children were more likely to find NIV an acceptable measure for acute (OR 6.7, 95% CI 1.7–26.0) and chronic (OR 13.7, 95% CI 4.0–46.4) respiratory failure and prophylactic use (OR 5.8, 95% CI 2.2–15.6). Conclusion: Physician knowledge, opinions, subjective perception of child happiness, and regional factors, all influence physicians’ practices and the shared decision‐making process. Parents may not be informed or offered all the services available to their child. Knowledge translation initiatives are needed to enhance SMA1 care. Pediatr Pulmonol. 2017;52:662–668.

Developing successful workshops: a workshop for educators

Background: Many educators have had little or no preparation in the design, delivery or evaluation of workshops. Methods: This faculty development intervention consisted of a faculty development workshop on Developing Successful Workshops; a workbook to guide independent study; and peer consultations. Program evaluation included immediate and delayed post-workshop evaluations, tracking of site-specific activities, and assessment of self-perceived efficacy. Results: Participants found the workshop very useful, highlighting the assessment of learner needs, goal-setting, “matching” of objectives to content and methods, and use of a structured framework as most beneficial. Nine months after the intervention, seven of eleven participants had conducted a workshop in their own settings. Self-assessment of skills in workshop design also increased. Conclusion: A workshop on Developing Successful Workshops can help participants to understand the principles of workshop design and delivery.

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer

BackgroundThere are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.Methods/designIn this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.DiscussionThrough this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.

A faculty development workshop in narrative-based reflective writing

Narrative approaches are used increasingly in the health professions with a range of objectives. We must acquaint educators with this burgeoning field and prepare them for the incorporation of story-telling in their pedagogical practices. The authors describe a template for a faculty development workshop designed to foster self-reflection through the use of narrative techniques and prepare clinical teachers to deploy such approaches. The design is based on a six-year experience in delivering introductory workshops in narrative approaches to medical teachers. The workshops, which served as a model for the template, have been offered to a total of 92 clinicians being trained to mentor medical students. A generic template is described. It includes a table of core concepts from narrative theory, a set of probing questions useful in a basic technical analysis of texts and a list of initiating prompts for exercises in reflective writing. A workshop organized and deployed using this template is deliverable over a half-day. The model has proven to be feasible and highly valued by participants. It can be adapted for other contexts by educators across the continuum of health professional education.

Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents’ individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents’ relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

Assessing a faculty development workshop in narrative medicine

Background: Narrative medicine is increasingly popular in undergraduate medical curricula. Moreover, although faculty are expected to use narrative approaches in teaching, few faculty development learning activities have been described. In addition, data on the impact of faculty development initiatives designed to teach narrative are limited, and there is a paucity of tools to assess their impact. Aims: To assess the impact and outcomes of a faculty development workshop on narrative medicine. Methods: Two groups of clinical teachers were studied; one group had already attended a half-day narrative medicine workshop (N = 10) while the other had not yet attended (N = 9). Both groups were interviewed about their uses of narrative in teaching and practice. Additionally, the understanding of a set of narrative skills was assessed by first viewing a video of a narrative-based teaching session followed by completion of an 18-item assessment tool. Results: Both groups reported that they used narrative in both their teaching and clinical practice. Those who had attended the workshop articulated a more nuanced understanding of narrative terms compared to those who had not yet attended. Conclusion: This study is one of the first to describe measureable impacts of a faculty development workshop on narrative medicine.