Purpose: We questioned whether an intensive experiential core course would change medical students’ intention to practice mindful clinical congruence. Our primary hypothesis was that we would see more of a change in the intention to practice mindful clinical congruence in those who had taken versus not yet taken our course. Methods: From a class of 179 in second year we recruited 57 (32%) students who had been already divided into three groups that completed the course in successive periods. We measured mindful clinical congruence using a questionnaire developed and evaluated for validity. We also measured students’ level of stress to determine if any effects we saw were related to stress reduction. Results: Students who had just completed the course showed a greater intention to practice mindful clinical congruence than students who had not yet started the course. There was an apparent slight increase in perceived stress in those who had completed our course. Conclusions: We can change students’ intention to practice mindfully and congruently, which we believe will prevent a decline in compassion and ethical values in clerkship. The results did not appear to be explained by a decrease in stress in students who completed the course.

Clinicians in pediatric palliative care enter the world of children living with life-threatening conditions and their families. These clinicians come face to face with the relentlessness of illness, the uncertainty of prognosis, and, at times, the inevitability of death. Through repeated cycles of attachment and loss, their core challenge is to learn how to preserve themselves while at the same time sustain the ability to be effective and empathic. This chapter examines relationship-centered care with a focus on the complex reciprocal influences among children, families, and clinicians. It describes the nature of clinicians’ suffering, including the impact of a child’s death. Building resilience and engaging in self-care are discussed as critical practices, both for the integration of clinicians’ own experience and for the provision of optimal care of children and their families.

Background Medical students show a decline in empathy and ethical reasoning during medical school that is most marked during clerkship. We believe that part of the problem is that students do not have the skills and ways of being and relating necessary to deal effectively with the overwhelming clinical experience of clerkship. Approach At McGill University in Montreal, starting in January 2015, we have taught a course on mindful medical practice that combines a clinical focus on the combination of mindfulness and congruent relating that is aimed at giving students the skills and ways of being to function effectively in clerkship. The course is taught to all medical students in groups of 20, weekly for 7 weeks, in the 6 months immediately prior to clerkship, a time when students are very open to learning the skills they need to take effective care of patients. Evaluation The course has been well accepted by students as evidenced by their engagement, their evaluations, and their comments in the essays that they write at the end of the course. In a follow-up session at the simulation centre one year later students remember clearly and enact what they were taught in the course. Reflection The next steps will be to conduct a formal evaluation of the effect of our teaching that will involve a combination of qualitative methods to clarify the nature of the impact on our students and a quantitative assessment of the difference the course makes to students’ experience and performance in clerkship.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

BACKGROUND Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. OBJECTIVES We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. DESIGN An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3-6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. RESULTS Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17-2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06-2.11), after adjusting for background variables. CONCLUSION While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

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.

Background There 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/design In 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. Discussion Through 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.

Principles of pediatric palliative care (PPC) can and should be incorporated from the time of diagnosis of childhood cancer, concurrent with curative treatments, rather than only being provided as an alternative to those treatments at the end of life. As part of a larger project to enhance PPC provision we assessed the quality of palliative care provided to children with cancer and their families. Data were collected at 15 of the 16 pediatric oncology programs in Canada from four sources: 1) children age 7 to 19 with active disease or receiving cancer treatments completed the Memorial Symptom Assessment Scale and the Pediatric Quality of Life Inventory; 2) parents of children age 0 to 19 with active disease or receiving cancer treatments completed a survey about symptoms, quality of life, and care quality; 3) review of health records of deceased patients; and 4) surveys with bereaved parents about the quality of their children’s end-of-life care. Adolescents (n=38) reported more symptoms (8 vs. 5) but similar mean quality of life scores (65/100 vs. 67/100) compared with younger children (n= 26). Both groups report being asked frequently about symptoms by health professionals, but 40% reported they are never or almost never asked about quality of life. The lowest quality score from all parent participants (n=222) was around support of siblings (mean score 2.6/4). Only 43% of bereaved parents were able to look back on their child’s care during the last month of life without regrets. Regrets were mostly around not being able to spend more time at home. There is room for improvement in PPC for children with cancer. Children might benefit from more attention to their quality of life beyond symptom management. Regrets are common among bereaved parents, but may be reduced by finding ways to help families spend more time at home.

As a follow-up to a study conducted in 2002, our objective was to obtain an accurate description of programs that provided specialized pediatric palliative care (PPC) in 2012 and the children who received it; explore changes in the programs and care provided since 2002; and determine the current proportion of children who receive care through the programs. Collaborators from 13 PPC programs provided information about program structure and staffing, and the demographics, processes, and outcomes of care for the children who received care during 2012. Data were compared with results of a similar study from 2002. Between 2002 and 2012 the number of PPC programs in Canada increased from 8 to 13 and the number of children who received care through these programs more than quadrupled from 317 to 1401. However, the number of core staff across all programs increased by only two and a half times from 13.6 Full Time Equivalents in 2002 to 33.8 in 2012. Over the 10 year period, higher proportions of children who received care in 2012 were less than 1 year of age, (36.3% vs. 24.0%, p LT 0.01), had congenital conditions or conditions originating in the perinatal period (36.0% vs. 22.1%, p LT 0.01), and died in a neonatal or pediatric intensive care setting (24.4% vs. 12.3%, p LT 0.01). The proportion of children who might benefit that actually received specialized PPC increased from 5.0 percent in 2002 to 18.6 percent in 2012. Program growth and changes in child demographics indicate improved reach of the programs over time. However, remaining barriers prevent the majority of children from receiving specialized PPC services in a timely manner. Exploration of changes over time provides information to clinicians, and policy and decision makers to guide further program development in Canada and internationally.

BACKGROUND:Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care.METHODS:A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs.RESULTS:All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days.INTERPRETATION:Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.

BACKGROUND: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. © 2016 Wiley Periodicals, Inc.

A noticeable shift in both acuity and complexity has occurred in the care of ill children over the past decades. Children with conditions that previously required intensive care are now routinely cared for on the wards of our paediatric hospitals; those who once needed supervision in a tertiary care centre with each deterioration are now commonly admitted to community hospitals; and children whose health care needs at one time forced them to reside in group homes or institutions are now living at home with their families. Enhancements in our ability to address acute medical problems and advances in medical technology have resulted in a growing number of children who live with chronic complex conditions (1). These children should rightly be viewed as part of the success of modern paediatric health care; however, to stop there is to tell only one part of the story. The number of technology-dependent medically fragile children account for a large and growing proportion of hospital admissions (2). They are living longer, but many still have conditions considered to be life-threatening, if not life-limiting, in nature. And unfortunately, our ability to improve the quality of life for many of these children, and their families, has not been as remarkable as our achievements in extending the duration of life. While these changes were occurring in the field of paediatrics, palliative care emerged as a response to new, unmet needs. Born out of the modern hospice movement of the 1960s, care of the dying was the initial focus. Until that point, end-of-life care was primarily the responsibility of family members, often with the assistance of religious institutions (3). In the 1970s, Dr Balfour Mount, a Canadian urologist dismayed by the suffering experienced by terminally ill patients at Montreal’s Royal Victoria hospital, helped to bring the hospice movement into the fold of the modern health care system (4). Mount called this discipline ‘palliative care’, from the latin word palliare, to cloak, partly in an effort to emphasize the goal of relieving pain and other forms of suffering, and partly to move away from the negative association with death that ‘hospice’ had acquired. More recently, the field of palliative care has evolved to include the goal of maximizing quality of life (5), which involves decreasing the ‘bad stuff’ (eg, alleviation of physical, emotional, psychological and spiritual suffering) and increasing the ‘good stuff’ (eg, providing necessary support, creating legacies). In so doing, the orientation of palliative care is now relevant not only to those who are dying, but to anyone living with a serious or chronic illness, regardless of prognosis. Although paediatric mortality rates have decreased significantly over the past 60 years, the shift in palliative care toward maximizing quality of life has made it more relevant than ever to those working with infants, children and youth. Given the increasing numbers of children living with serious chronic complex conditions, the philosophy of palliative care is often appropriate from the time of initial diagnosis, and not necessarily by a paediatric palliative care subspecialist but, rather, by the clinician who knows the child best. Why should we wait until curative therapies have been exhausted to ensure that a child is comfortable? Why wait until issues become critical and panic sets in to initiate discussions about goals and limits of care (often by health care providers who barely know the child or family)? Most of us worry about destroying hope, but all parents of children with life-threatening conditions worry about death. Most choose to focus on the good things and stay positive, but all have their moments of fear and doubt. Talking with children and/or parents about concerns and openly discussing challenges that may be ahead can be difficult, but such conversations may be desired and often bring relief (6). In reality, paediatricians engage in ‘advanced care planning’ everyday, we just typically prefer to call it ‘anticipatory guidance’. The current issue of Paediatrics & Child Health explores some of the significant questions that health care providers may have in addressing these issues. For example, what happens when physicians and parents disagree on the use of potentially life-sustaining treatment? How do patients and families manage life-threatening illnesses, and how can clinicians help? Who should have access to paediatric palliative care, and what patients qualify for this type of support? Most importantly, what is the specific role of a health care provider in the delivery of palliative care for children, and when might physicians and patients both benefit from consultation with a paediatric palliative care team? We realize and appreciate that the topic of life-threatening illness is complex, and includes differences of opinion on how to deliver the best care. As a most recent example, consider the Supreme Court of Canada decision on ‘physician-assisted death’. While the decision opens the door for new legislation permitting physician-assisted death to consenting adults (children are not included at this time), debates on the subject both before and since the ruling have demonstrated strong feelings about end-of-life care in our society. Despite the complexities that can surround discussions about approaches to life-threatening illness, there are basic premises that Canadians (who hold health care as a defining Canadian trait) do agree on. One is that Canadians need better access to palliative care. Moreover, we believe that all those who work with infants, children and youth with serious illness have a part to play in providing care that is best not relegated exclusively to paediatric palliative care specialists. We are deeply grateful to live and work in a country that places such a high value on health care, which is another way we express our ardor in placing our highest values on quality of life, even, and perhaps especially, for those whose lives may end early. May we all continue to strive to better serve those most vulnerable and in need.