Adam Rapoport

Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-of-Life Care

BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers’ and parents’ decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child’s quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfied with their decision to FANH and believed that their child’s death was generally peaceful and comfortable. The child’s perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.

In the Loop: The Organization of Team-Based Communication in a Patient-Centered Clinical Collaboration System

Background We describe the development and evaluation of a secure Web-based system for the purpose of collaborative care called Loop. Loop assembles the team of care with the patient as an integral member of the team in a secure space. Objective The objectives of this paper are to present the iterative design of the separate views for health care providers (HCPs) within each patient’s secure space and examine patients’, caregivers’, and HCPs’ perspectives on this separate view for HCP-only communication. Methods The overall research program includes cycles of ethnography, prototyping, usability testing, and pilot testing. This paper describes the usability testing phase that directly informed development. A descriptive qualitative approach was used to analyze participant perspectives that emerged during usability testing. Results During usability testing, we sampled 89 participants from three user groups: 23 patients, 19 caregivers, and 47 HCPs. Almost all perspectives from the three user groups supported the need for an HCP-only communication view. In an earlier prototype, the visual presentation caused confusion among HCPs when reading and composing messages about whether a message was visible to the patient. Usability testing guided us to design a more deliberate distinction between posting in the Patient and Team view and the Health Care Provider Only view at the time of composing a message, which once posted is distinguished by an icon. Conclusions The team made a decision to incorporate an HCP-only communication view based on findings during earlier phases of work. During usability testing we tested the separate communication views, and all groups supported this partition. We spent considerable effort designing the partition; however, preliminary findings from the next phase of evaluation, pilot testing, show that the Patient and Team communication is predominantly being used. This demonstrates the importance of a subsequent phase of the clinical trial of Loop to validate the concept and design.

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.

Pediatric home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline executive summary

ABSTRACT Over the last 30 to 40 years, improvements in technology, as well as changing clinical practice regarding the appropriateness of long-term ventilation in patients with “non-curable” disorders, have resulted in increasing numbers of children surviving what were previously considered fatal conditions. This has come but at the expense of requiring ongoing, long-term prolonged mechanical ventilation (both invasive and noninvasive). Although there are many publications pertaining to specific aspects of home mechanical ventilation (HMV) in children, there are few comprehensive guidelines that bring together all of the current literature. In 2011 the Canadian Thoracic Society HMV Guideline Committee published a review of the available English literature on topics related to HMV in adults, and completed a detailed guideline that will help standardize and improve the assessment and management of individuals requiring noninvasive or invasive HMV. This current document is intended to be a companion to the 2011 guidelines, concentrating on the issues that are either unique to children on HMV (individuals under 18 years of age), or where common pediatric practice diverges significantly from that employed in adults on long-term home ventilation. As with the adult guidelines,1 this document provides a disease-specific review of illnesses associated with the necessity for long-term ventilation in children, including children with chronic lung disease, spinal muscle atrophy, muscular dystrophies, kyphoscoliosis, obesity hypoventilation syndrome, and central hypoventilation syndromes. It also covers important common themes such as airway clearance, the ethics of initiation of long-term ventilation in individuals unable to give consent, the process of transition to home and to adult centers, and the impact, both financial, as well as social, that this may have on the childs families and caregivers. The guidelines have been extensively reviewed by international experts, allied health professionals and target audiences. They will be updated on a regular basis to incorporate any new information.

Predictors of Specialized Pediatric Palliative Care Involvement and Impact on Patterns of End-of-Life Care in Children With Cancer

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team. Patients were linked to population-based administrative data capturing inpatient, outpatient, and emergency visits. Children were classified as having SPPC, general palliative care, or no palliative care on the basis of SPPC clinical databases, physician billing codes, or inpatient diagnosis codes. Results Of the 572 children, 166 (29%) received care from an SPPC team for at least 30 days before death, and 100 (17.5%) received general palliative care. SPPC involvement was significantly less likely for children with hematologic cancers (OR, 0.3; 95% CI, 0.3 to 0.4), living in the lowest income areas (OR, 0.4; 95% CI, 0.2 to 0.8), and living further from the treatment center (OR, 0.5; 95% CI, 0.4 to 0.5). SPPC was associated with a five-fold decrease in odds of intensive care unit admission (OR, 0.2; 95% CI, 0.1 to 0.4), whereas general palliative care had no impact. Similar associations were seen with all secondary indicators. Conclusion When available, SPPC, but not general palliative care, is associated with lower intensity care at the end of life for children with cancer. However, access remains uneven. These results provide the strongest evidence to date supporting the creation of SPPC teams.

Improving Quality of life in Hospitalized Children

There are many ways to add to childrens quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.

Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer

Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This studys purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer.

Children’s End-of-Life Health Care Use and Cost

Through linkage of administrative databases, this study highlights the characteristic of and health care costs for children over the last year of life. BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada. METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013. RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was

Medical Assistance in Dying at a paediatric hospital

78 332 (Canadian) with a median of

Siblings’ voices: A prospective investigation of experiences with a dying child

18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life. CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.