Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Archives of Disease in Childhood
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
Emergencies in Pediatric Palliative Care: A Survey of Ambulance Officers to Understand the Interface between Families and Ambulance Services
ambulance; article; attitude; child; comfort; controlled study; counseling; e-mail; emergency health service; human; medical documentation; Palliative therapy; pediatric patient; perception; Queensland; resuscitation; writing
Background: Pediatric palliative care occurs across contexts through the child's illness trajectory, including within the child or young person's community. Interactions with the ambulance service may occur with a child's deterioration, crisis, or when needing transfer, but there is little research on this interaction. Aim: To explore the experiences and attitudes of ambulance officers in managing pediatric patients with palliative care needs. Design: A targeted e-mail survey was sent exploring perceptions of the involvement with these patients including exposure, comfort, resuscitation topics, and supports available. Setting/Participants: Participants were Queensland ambulance officers known to have had an interaction with one of the last 50 pediatric palliative care referrals across Queensland. Results: Twenty-two survey responses were received. Most of the palliative group accessed ambulances for the 13-month study period. Most ambulance officers did not easily identify patients as receiving palliative care. Many participants felt these cases were challenging, confidence levels varied, and staff counselling services were felt to be relevant. Ambulance officers were most likely to use correspondence provided by the family from their usual team as a guide for emergency management. Half of the participants felt patients receiving pediatric palliative care should have a "not for resuscitation" order. Respondents suggested officer support could be improved through increased patient documentation and promotion of existing officer supports. Conclusions: These findings demonstrate challenges experienced by ambulance officers and suggest practical ways in which pediatric palliative care services can better support emergency services.
Mott C; Herbert A; Malcolm K; Sansone H; Agar M
Journal of Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0299" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0299</a>
Improving the frequency of symptom assessment in pediatric palliative care patients
awareness; child; clinical evaluation; comfort; conference abstract; e-mail; electronic medical record; hospital patient; human; human cell; information technology; outpatient; Palliative therapy; quality of life; root cause analysis; stem cell; symptom assessment; total quality management
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the electronic medical record (EMR) using a symptoms assessment tool modified from the Memorial Symptom Assessment Scale (MSAS). Our specific aim was to increase the percentage of MSAS evaluations completed and properly documented at the time of consult completion and at least weekly thereafter by PACT providers from 20% to 90% over six months. This project utilized standard quality improvement methodology. We began with a process map, documented process failures using a PARETO chart, and subsequently performed root cause analysis for each failure. Multiple tests of change were run for the following interventions: an initial educational session, MSAS badge reminder cards, adding MSAS awareness to our morning patient huddle, notification of individual completion rates via email, public posting of individual completion rates, a visual reminder with a colorful stamp on daily patient list, modification to the EMR patient list view and EMR flowsheet interface where MSAS is documented. We also performed in-depth reviews of any failures that were identified. Within 4 months of implementation the aim was exceeded and a median of 100% of patients had documented MSAS evaluations. This was considered a significant improvement based on the Institute for Healthcare Improvement Scale. These results have been sustained for an additional 8 months. Factors that impacted success included active engagement of all team members in the improvement process, frequent recognition and treatment of new symptoms, and ongoing updates regarding individual completion rates. Our dependence on the EMR was a limiting factor in sustainability as not all parts of the process were able to be automated and some steps still depend on human factors. Improving existing structure of team communication became critical as we implemented tests of change. Next steps for this project include utilizing the weekly MSAS data available on all patients to study those symptoms experienced specifically by children undergoing stem cell transplant. We will continue to work with our hospital information technology staff to further develop sustainability via process changes in the EMR. In addition we will expand our symptom assessment to include all outpatient consults. Finally, as we have standardized, reliable method to measure symptoms for all inpatients, we intend to design interventions targeting improving symptom management and health-related quality of life in children receiving palliative care in our institution.
Mark M S; McKenna L; Thienprayoon R
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
National Institute of Nursing Research and MedlinePlus Team Up to Offer a Palliative Care Text Campaign (QI632)
adult; child; conference abstract; e-mail; human; mental health; national health organization; nursing research; palliative therapy; pediatric patient; transcription initiation; videorecording; wellbeing
Objectives: * Apply the principles of plain language to deliver easy-to-understand, evidence-based palliative care information to those with serious illnesses and their families. * Utilize common forms of telecommunications (text messaging and email) to reach English- and Spanish-speaking patients. Background Research has shown that patients who receive palliative care report improvement in pain, nausea, and shortness of breath; communication with their healthcare providers and family members; and emotional support. Aim Statement To increase awareness of palliative care and its benefits for those living with serious illnesses and their families. Methods From February 2018 to February 2019, the National Institute of Nursing Research (NINR) and the National Library of Medicine's MedlinePlus® ran a text message campaign about palliative care. Messages included information for adult and pediatric patients and their families. The campaign also ran in Spanish from February to August 2018. Subscribers received one text message per week. About a month into the campaign, a weekly e-mail option was added. Results 3,143 subscribers signed up for the English text messages, and 944 signed up for the Spanish campaign. An additional 8,004 subscribers signed up for English e-mails, and 9,252 subscribers signed up for Spanish e-mails. The 56 links shared generated 16,039 clicks to NINR and MedlinePlus® content. The average engagement rate of a message was 1%, or only 1% of subscribers clicked the link of any message. The most popular messages were about mental health/emotional wellbeing and new research. Conclusions and Implications A successful campaign is determined by the number of people reached, increased visitors to linked content, attrition, and engagement. The growth was steady and the campaign was successful in gaining new subscribers. Attrition was low; fewer than 10 people unsubscribed. Overall, this campaign was successful in reach, but engagement was low. Implications for practice A future campaign should: a.Include an e-mail option from the beginning to reach a wider audience. b.Focus on engaging content. Create action-based content that elicits a response from subscribers. c.Link only to mobile-friendly pages, not PDFs and videos, since many subscribers are accessing content from mobile devices.
Burroughs A; Lemon A; Coppess S; Miller J
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.241" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.241</a>
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
child; female; human; major clinical study; male; palliative therapy; controlled study; emergency ward; cancer patient; respiratory distress; conference abstract; decision making; human tissue; perception; clinician; spinal muscular atrophy; data analysis software; advanced cancer; brain disease; cancer resistance; deterioration; disease exacerbation; e-mail; hypoplastic left heart syndrome; leukemia; Likert scale; nonparametric test; pediatrician; vignette
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to GOC discussions and management during acute unexpected clinical deteriorations. DESIGN/METHODS: This single center survey study used 4 scenarios of children with advanced life-threatening illnesses, presenting to the emergency department (ED) with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA), refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants' Likert scale answers to the different scenarios. RESULT(S): Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed GOC were best discussed before an acute deterioration (Table 1). Acute deteriorations were not seen as an opportune moment to initiate discussions about GOC. However, validating GOC was necessary, given that not discussing GOC was unacceptable. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the ED's role was unclear. Several management options were less acceptable for the patient with static encephalopathy. CONCLUSION(S): Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision making processes. Advanced care planning with these families is essential to prepare them for acute heath events. (Table Presented).
Cote A J; Gaucher N; Payot A
Paediatrics and Child Health (Canada)
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
death; child; female; human; major clinical study; male; palliative therapy; controlled study; thematic analysis; human experiment; learning; pediatrics; conference abstract; questionnaire; e-mail; pediatrician; health care system; needs assessment; Australia; expectation; holistic care; social welfare; specialist registrar
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services. This study was part of a learning needs assessment of paediatrician's training and experience in PPC. Method(s): Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission. The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers. Result(s): 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question 'Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?' On analysis, three overarching themes emerged, 'Best interests of the child', 'Inadequate training and confidence' and 'Co-ordinating care'. 'Best interests of the child' referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes 'Complex communication' which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and 'First do no harm' referring to the frequent ethical dilemmas that arise in PPC. 'Inadequate adequate training and confidence' referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of 'coordinating care' encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting. Conclusion(s): This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
Balfe J; Whitla L; Devins M; Molloy E; Twomey M; O'Reilly M
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Little lights: Hospital bereavement photography program
human; child; female; terminal care; controlled study; major clinical study; gestational age; conference abstract; bereavement; nurse practitioner; mourning; child death; volunteer; burn; e-mail; infant; emergency ward; respiratory therapist; light; photography; hospital personnel; Work engagement
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying infants. Little Lights was created by a multidisciplinary group including a professional photographer, provides professional bereavement photography training to staff, and uses a collaborative model involving photography performed by trained staff and edited by professional photographers to give families beautiful mementos of the brief window of time with their infant. The model provides consistent availability of high quality bereavement photographs validating their baby's life and solidifying the infant's importance within the family (Blood & Cacciatore, 2014). Overcoming the barrier of lack of 24-hour availability of volunteer professional photographers allows increased access for families which aids grieving, mourning, and healing for families who lose their child (Limbo & Kobler, 2010). Subjects: Families with an actively dying or deceased infant regardless of gestational age or physical condition. Women's Center staff who volunteer for training and participation in the program. Design: A nurse led complimentary bereavement photography program designed to function internally by collaboration between hospital staff and volunteer professional photographers. Methods: A multidisciplinary team created training sessions focusing on technical aspects of photography as well as culturally sensitive end-of-life care. Staff participation is voluntary, and a system was created for notification and designation of staff photographers during their normal work hours. A hospital approved form is used to obtain consent and email information from families, the photography session is performed, the images are sent to professional photographers who edit them, and the photographers email the images to the family. Results: Since initiation of the Little Lights program in December 2016 to May 2016, 29 staff from the Women's Center Departments and the Emergency Department have been trained. 21 of those trained were nurses, and other staff trained include physicians, respiratory therapists, nurse practitioners, unit secretaries, and volunteers. During this time period, there have been 55 infant deaths, and all families offered the program have consented to photography. All requested sessions have been successfully performed, converted into encrypted files, edited, and dispersed to families. Parental feedback and the described experience of trained hospital staff have been positive. Quality and process improvement is ongoing. Limitations: A current opportunity for improvement is the time needed for editing and delivery of photographs. The goal is to have photographs delivered to families within 72 hours so that they are available for memorial services; however, the current turn-around time is 2 weeks. Other limitations include a misplacement of equipment, rare challenges of staff availability, and the need for ongoing and new training. Implications for Practice: Little Lights addresses common problems experienced by hospitals attempting to provide bereavement photography. It is a sustainable model for the consistent provision of professional quality, compassionate, complimentary bereavement photography. In addition, the program encourages staff engagement with families during their time of need, participation in the grief process, and may help decrease symptoms of staff burn-out.
Vandergrift PS; Bryan D; Bishop C
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Early involvement of palliative care in cystic fibrosis in inpatient setting: A quality improvement initiative
cystic fibrosis; hospital patient; palliative therapy; Total Quality Management; Child; disease exacerbation; e-mail; Human; lung; outcome assessment; pulmonologist; social worker
Background: Cystic fibrosis (CF) is a life-limiting disease with multiple comorbidities. It has been recommended that palliative care discussions for psychological adjustment and optimal symptom control should be initiated early. However, the palliative care service in this population remains underutilized. Objective: To increase utilization of palliative care services for patients admitted for CF exacerbations. Methods: A SMART aim statement was created with the goal of increasing consults by the palliative care service for patients admitted to the hospital with CF exacerbation. We measured the number of palliative care consult orders placed over a 2-week period. These charts were then reviewed for the presence of corresponding consult orders and notes. We conducted two PDSA (Plan-Do-Study-Act) cycles. The first intervention was sending informational emails to the pulmonary team covering the inpatient service. The second intervention was an educational session for pediatric pulmonologists and fellows to learn from social workers and palliative care specialists about their training and indication for consults. Social workers also helped educate the patients and their families on the additional benefit of palliative care services. Results: Baseline data over a 2-week period suggested that none of the CF inpatients had received involvement from the palliative care team during the corresponding admission. The percentage of CF patients who received palliative care consults increased to 33% from baseline in 5 weeks at the end of the second intervention. Conclusion: The inter-professional quality improvement model was effective in increasing palliative care consults for CF patients admitted to pulmonary service. Educational initiatives regarding palliative care services are an effective intervention to facilitate this process. Further data are required to measure outcomes in the form of feedback from patients, families and providers.
Kotwal N; Kilaikode S; Koumbourlis A; Perez G
Pediatric Pulmonology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Utilization of palliative care in pediatric oncology: An interprofessional evaluation of knowledge, beliefs, perceived barriers, and involvement of services
Childhood Cancer; Palliative Therapy; Adolescent; Child; Controlled Study; Data Analysis Software; Diagnosis; Doctor Patient Relation; E-mail; Family; Female; Hematology; Human; Male; Nurse; Pediatrics; Professional Standard
Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be improvedwith the involvement of pediatric palliative care (PPC) services. The American Academy of Pediatrics (AAP)1 and Institute of Medicine (IOM)2 have published statements and recommendations in support of collaboration with PPC services for all children with serious life-threatening and life-limiting illnesses. Additionally, PPC is recommended as a standard of care in pediatric oncology in addressing the psychosocial needs of children and adolescents with cancer and their families3. Objectives: The overall purpose of this study was to evaluate the knowledge and beliefs of pediatric oncology healthcare providers (HCPs) regarding involvement of PPC and to assess potential barriers that may interfere with its utilization. Additionally, this study evaluated the current involvement of PPC services in pediatric oncology programs that belonged to a statewide hematology alliance in a large Midwestern state. Design/Method: A cross sectional, descriptive survey design guided data collection and analysis. A survey consisting of 30 questions evaluated demographic factors, institutional resources, beliefs, perceived barriers, and current utilization practices. The Qualtrics survey was distributed via email. Data were collected from 156 HCPs (nurses, advanced practice professionals, and physicians). Analysis was completed using IBM SPSS version 24. Results: Significant variability was noted in perspectives regarding PPC and utilization when comparing respondents from various professional roles, practice environments, and among those with different education and professional experience. Over 99% of respondents stated that involving PPC benefits children, however 56% reported PPC was involved "never" or "rarely" in the care of oncology patients. The leading indications for PPC involvement were consistent with advanced disease, occurring late in the trajectory, rather than upon diagnosis as recommended. The influence of practice environments was identified in this study, with free-standing children's hospitals reporting fewer barriers and increased involvement of PPC services. Conclusion: Although progress has been made, care delivered is still not congruent with the recommendations of the AAP and IOM. Knowledge gained from this study emphasizes the important role for all HCPs in advocating for support of PPC programs, education of the public, and commitment to the involvement of PPC services while caring for pediatric oncology patients.
Diver J; Prince-Paul M; Toly V; Bell C
Pediatric Blood And Cancer
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.26591" target="_blank" rel="noreferrer">10.1002/pbc.26591</a>