Selected Publications from 2018

Authors:  Johnson A, Siden H, Charles G

Journal Information: (2018). Journal of Pain and Symptom Management

Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents’ medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.

DOI: 10.1016/j.jpainsymman.2018.10.042

Click here for abstract.

Authors:  Widger K, Wolfe J, Friedrichsdorf S, Pole JD, Brennenstuhl S, Liben S, Greenberg M, Bouffet E, Siden, H, Husain A, Whitlock JA, Leyden M, Rapoport, A

Journal Information: (2018). Journal of Palliative Medicine

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.

DOI: 10.1089/jpm.2017.0532

Click here for abstract.

Authors: De Michelis C, Zlotnik SR, Rapoport, A

Journal Information: (2018). Journal of Medical Ethics

This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.

DOI:10.1136/medethics-2018-104896

Click here for abstract.

Authors: Stenekes S; Penner JL; Harlos M; Proulx M; Shepherd E; Liben S; Thompson G; MacConnell G; Gregoire M; Siden, H

Journal Information: (2018). Journal of Palliative Care

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.

DOI: 10.1177/0825859718790627

Click here for abstract.

Authors: Widger K; Medeiros C; Trenholm M; Zuniga-Villanueva G; Streuli J C

Journal Information: (2018). Journal of Palliative Medicine

BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE: To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN: The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS: Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children’s perspectives in assessing indicators. CONCLUSIONS: Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.

DOI: 10.1089/jpm.2018.0420

Click here for abstract.

Authors: Ross S; Daffern K; Widger K; Rapoport, A; Salminen R

Journal Information: (2018). Journal of Pain and Symptom Management

Background: Emily’s House Children’s Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.

DOI: 10.1016/j.jpainsymman.2018.10.416

Click here for abstract.

Authors: Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies, B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA

Journal Information: (2018). School Psychology Quarterly

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)

DOI: 10.1037/spq0000253

Click here for abstract.

Authors: Vadeboncoeur, C.; McHardy M

Journal Information: (2018). Pediatrics

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children’s Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.

DOI: 10.1542/peds.2017-3417

Click here for abstract.

Authors: Nelson K; Feinstein J; Gerhardt C; Rosenberg A; Widger K; Faerber J; Feudtner C

Journal Information: (2018). Children

Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.

DOI: 10.3390/children5030032

Click here for abstract.

Authors: Hasan F; Weingarten K; Rapoport, A; Bouffet E; Bartels U

Journal Information: (2018). Journal of Neuro-Oncology

The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child’s care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a “Do not resuscitate” order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.

DOI: 10.1007/s11060-018-2781-0

Click here for abstract.