Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia
Australia; care behavior; decision making; interpersonal communication; parent; pediatrician; phenomenology; article; child; courage; human; interview; male; palliative therapy; shared decision making; signal transduction; simulation
Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. Design: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. Setting: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. Participants: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. Results: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. Conclusions: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.
Vemuri S; Hynson J; Williams K; O'Neill J; Gillam L
BMJ Open
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/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2023-075740</a>
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
child; article; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Harputluoglu N; Coskun M; Cubukcu D; Celik T
Journal of Pediatric Academy
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/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</a>
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
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/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a>
Hospice Care in India-A Pediatrician's Perspective
child; Hospice Care; article; human; palliative therapy; Hospices; India; pediatrician; pediatric patient; malignant neoplasm; hospice care; terminally ill patient; India
Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric patients in India remain limited. This article aims to explore the pediatrician's perspective on hospice care in India, highlighting the challenges and opportunities for enhancing end-of-life care for children. By understanding the unique needs of pediatric patients and their families, healthcare professionals can contribute to the development and improvement in hospice care services across the country. Copyright © 2023. MedIntel Services Pvt Ltd. All rights reserved.
Nair M; Ghoshal A
South Asian Journal of Cancer
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/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1771407</a>
An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Palat G; Doherty M; Brown S; Shah 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.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</a>
"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
Terminal Care; child; terminal care; article; female; human; male; physician; clinical article; pediatrician; burnout; interview; wellbeing; university hospital; medical education; responsibility; work environment; drawing; seashore; emotional support; buffer
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic emotional labor. Drawing on in-depth interviews with 12 physicians across two different children's hospitals on the east coast, I find that these physicians conceptualize this work as a fundamental responsibility to the children and families in their care despite believing that their formal medical training fails to prepare them for this component of their jobs. These physicians deliberately laid groundwork for the potential that children may die from their earliest interactions with patients and worked to shift families away from continued medical intervention when they believed such efforts to be futile. They described this work as deeply meaningful and rewarding, but potentially emotionally overwhelming. These physicians felt duty-bound to address what they perceived as a deficit in medical training by intentionally modeling emotionally intense exchanges with families for the next generation of practitioners. Though these dual commitments demanded extensive and potentially exhausting emotional labor, this particular group of physicians was able to use the structural features of their faculty positions in academic medical centers to buffer against potential burnout, maintain their emotional capacity at work and home, and protect their own well-being. My analysis shows that when physicians inhabit structurally favorable working conditions and conceptualize their jobs in ways that center emotional support for patients they may use these resources to work to mitigate disparities in care and take pride in their ability to provide sustained and substantive emotional support at the end of life.Copyright © 2023
Gengler AM
SSM - Qualitative Research in Health
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/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener">10.1016/j.ssmqr.2023.100324</a>
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
Bereavement; article; human; death; pediatrics; clinical practice; grief; terminal care; dying; wellbeing; comfort; resident; human relation; pediatrician; bereavement; medical education; frustration; coping behavior; work environment; posthumous care; anger; bereavement support; medical student; catharsis; gesture; loneliness
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships with patients and families. One memory, among many, inspired our work to bolster and reform trainee bereavement practices. On Monday, I walked into the hospital apprehensively. I was nearing the end of a month-long rotation in the medical-surgical ICU, my first experience caring for critically ill children during residency. I heard the news from my coresident: my patient had died on Sunday. Although it was not unexpected, it still hurt all the same. It was 5:50 am when I rounded the hospital corner and approached his old room. As I peeked inside, my heart sank. Just 3 days ago, this room was full of people and things and sounds;...
Rabinowitz DG; Korus RE; Eastland SL; Bloomhardt HM
Hospital Pediatrics
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/10.1542/hpeds.2023-007225" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2023-007225</a>
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Andes Pediatrica
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/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</a>
How can advance care planning tools help young people's voices be heard?
child; pediatrics; female; male; human; review; advance care planning; palliative therapy; human experiment; skill; legal aspect; pediatrician; conversation; tension; voice
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. Copyright © 2022 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).
Trang J; Herbert A; Sansom-Daly UM
Journal of Paediatrics and Child Health
2022
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<a href="http://doi.org/10.1111/jpc.16095" target="_blank" rel="noreferrer noopener">10.1111/jpc.16095</a>
Paediatric palliative screening scale as a useful tool for clinicians' assessment of palliative care needs of pediatric patients: a retrospective cohort study
Pediatrics; Prognosis; Palliative care; Pediatrician
BACKGROUND: Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. METHODS: This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. RESULTS: The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. CONCLUSION: The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.
Song IG; Kwon SY; Chang YJ; Kim MS; Jeong SH; Hahn SM; Han KT; Park SJ; Choi JY
BMC Palliative Care
2021
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/10.1186/s12904-021-00765-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00765-8</a>
Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey
advance care planning; palliative care; pediatrician; prognosis
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. METHOD(S): This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. RESULT(S): Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). CONCLUSION(S): The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Song I G; Kang S H; Kim M S; Kim C H; Moon Y J; Lee J
BMC palliative care
2020
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<a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00652-8</a>
Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
death; article; child; female; human; male; palliative therapy; retrospective study; controlled study; human experiment; pediatrics; terminal care; shared decision making; satisfaction; Palliative care; newborn; questionnaire; pediatrician; bereavement support; End-of-life care; Improvements; observational study; Paediatric; Parental perspectives; Questionnaire; Survey
Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. Method(s): A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. Result(s): Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). Conclusion(s): Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics. Copyright © 2019
Plaza Fornieles M; Garcia-Marcos B P; Galera Minarro A M; Barbieri G; Bellavia N; Bermudez Cortes M D M; Navarro M A
Anales de Pediatria.
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).
<a href="http://doi.org/10.1016/j.anpedi.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2019.07.001</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).
Providing cost-effective and coordinated care for children with medical complexity
adolescent; child; female; home care; human; major clinical study; male; controlled study; nurse; multicenter study; conference abstract; caregiver; gastrostomy; cerebral palsy; pediatrician; outpatient; administrative personnel; artificial ventilation; congenital heart disease; diagnosis; fatigue; limited mobility; machine; medical technology; multidisciplinary team; neuromuscular disease; salary; stress; tracheostomy; ventilator; working time
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and families are at risk of fragmented care, sub-optimal continuity and high healthcare resource utilization due to their multiple medical issues and care needs. Consequently, the Children's Complex and Home Care Services (CCHS) was established in our institution in April 2016 with the primary aims of providing coordinated, cost-effective and patient- and family-centered care to CMC and their families. This service is run by a multi-disciplinary team of pediatricians, nurses, allied health and administrative staff. CMC in our context have a chronic life-limiting condition that involves at least three body systems and are often technologically dependent with limited mobility. In view of the numerous healthcare professionals involved in their care, multiple medical appointments are often scheduled which result in significant caregiver stress and fatigue. One of the key service implementations was multidisciplinary clinics whereby children are seen over the course of 1-3 hours by multiple clinical, nursing and allied health specialists. The purpose of this study is to describe CCHS service implementations, characterize CCHS patient characteristics and evaluate how multidisciplinary clinics have reduced their healthcare resource utilization. Method(s): 55 patients who were enrolled in the CCHS between April 2016 and October 2018 were studied. Result(s): Patient ages ranged from 2 months to 14.3 years old at time of enrolment. The majority of patients had underlying primary genetic diagnoses (47.2%), and other patients had either the primary diagnosis of cerebral palsy (20%), congenital cardiac disease (5.4%), neuromuscular disease (3.6%) or another or undiagnosed underlying condition (23.6%). Medical technology required at time of enrolment included enteral devices such as nasogastric/nasojejunal tubes or gastrostomies (94.5%), suctioning machines (54.5%), ventilator support (34.5%) and tracheostomies (16.4%). CCHS multidisciplinary clinics managed to reduce the number of outpatient attendances by 6.8 visits per patient-year for CMC enrolled into the service. This saves caregivers from an equivalent number of workdays of lost salary, and translates to C 450 of savings per patient per year on just transportation costs alone. Conclusion(s): CMC are heterogeneous in conditions but similar in care needs, and reducing outpatient attendances and healthcare costs is possible with coordinated multi-disciplinary clinics.
Chow C; Shahdadpuri R
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).
Medical assistance in dying and minors-views of the Canadian pediatrician
child; female; human; major clinical study; male; controlled study; terminal care; conference abstract; disability; pediatrician; health care system; conversation; intractable pain; medical care; mental disease; terminal disease
BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility criteria. As part of this Act, an independent review was initiated to evaluate requests made by mature minors for MAID and ultimately possible inclusion in further iterations of the Act. OBJECTIVE(S): Limited Canadian data is available on the role of MAID in mature minors or the views of health care practitioners on this topic. This study aims to assess the attitudes of Canadian health care practitioners surrounding MAID in minors and their willingness to participate in this process. DESIGN/METHODS: A survey was disseminated to members of the Canadian Paediatric Society, collecting information on attitudes surrounding MAID as it applies to minors, specifically mature minors, those with intolerable disability and mental illness. The survey also assessed the demographics of respondents, including type of practice and patient population. The results were analyzed using logistical regression to determine if there were correlations between practice variables and opinions surrounding MAID. RESULT(S): A 29% response rate was achieved (574/1979), with 487 participants completing all questions. Of the respondents, 46% were in favour that MAID should be eligible for mature minors experiencing progressive or terminal illness or intractable pain; 29% felt patients with intolerable disability should be eligible, while only 8% favoured extension in cases of intolerable mental illness. Lastly, 33% felt that MAID should never be extended to minors. There was no significant correlation between attitudes towards MAID and the respondent's type of practice, or if they work with minors suffering from life-threatening illness. Practitioners who felt their spiritual beliefs guide their opinions surrounding MAID were more likely to oppose eligibility for children (p<0.00001). Practitioners who had the experience of discussing MAID with parents or children were more likely to support extending MAID to mature minors (p=0.046). CONCLUSION(S): There exists a great variability in viewpoints amongst pediatric healthcare practitioners as it relates to extension of MAID to minors. As opinions vary based on factors including spiritual beliefs and conversations pertaining to end of life care, more time and research is warranted to further explore this topic in the context of the Canadian health care system.
Catena G; Davies D
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).
Japanese physicians' attitudes toward end-of-life discussion with pediatric patients with cancer
adolescent; death; palliative therapy; cancer patient; anxiety; multicenter study; malignant neoplasm; pediatrician; human; article; child; controlled study; adult; questionnaire; pediatric patient
PURPOSE: We explored pediatricians' practices and attitudes concerning end-of-life discussions (EOLds) with pediatric patients with cancer, and identified the determinants of pediatricians' positive attitude toward having EOLds with pediatric patients. METHODS: A multicenter questionnaire survey was conducted with 127 pediatricians specializing in the treatment of pediatric cancer. RESULTS: Forty-two percent of participants reported that EOLds should be held with the young group of children (6-9 years old), 68% with the middle group (10-15 years old), and 93% with the old group (16-18 years old). Meanwhile, 6, 20, and 35% of participants answered that they "always" or "usually" discussed the incurability of the disease with the young, middle, and old groups, respectively; for the patient's imminent death, the rates were 2, 11, and 24%. Pediatricians' attitude that they "should have" EOLds with the young group was predicted by more clinical experience (odds ratio [OR] 1.077; p=0.007), more confidence in addressing children's anxiety after EOLd (OR 1.756; p=0.050), weaker belief in the demand for EOLd (OR 0.456; p=0.015), weaker belief in the necessity of the EOLd for children to enjoy their time until death (OR, 0.506; p=0.021), and weaker belief in the importance of maintaining a good relationship with the parents (OR 0.381; p=0.025). CONCLUSIONS: While pediatricians nearly reached consensus on EOLds for the old group, EOLds with the young group remain a controversial subject. While pediatricians who supported EOLds believed in their effectiveness or necessity, those who were against EOLds tended to consider the benefits of not engaging in them.
Yoshida S; Ogawa C; Shimizu K; Kobayashi M; Inoguchi H; Oshima Y; Dotani C; Nakahara R; Kato M
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
2018
<a href="http://doi.org/%2010.1007/s00520-018-4254-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4254-6</a>
Medical assistance in dying: A paediatric perspective
infant; Canada; newborn; law; life; responsibility; medical care; euthanasia; health care quality; pediatrician; pediatrics; human; article; child; consultation; juvenile; protein unfolding
The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition' that causes 'enduring' and 'intolerable' suffering. In June 2016, Bill C-14 was enacted, allowing medical assistance in dying (MAID) for an eligible adult whose death is 'reasonably foreseeable'. An independent report on the status of 'mature minors' (who are currently excluded under federal legislation), with focus on their potential eligibility for MAID, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAID and articulates a paediatric perspective that has emerged from - and been informed by - the broad, structured consultation process unfolding in Canada and elsewhere. Although 'mature minors' are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAID for minors of all ages remains compelling for two main reasons: . Canadian health care professionals are increasingly being approached by the parents of 'never-competent' infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAID-related issues. Results from a Canadian Paediatric Surveillance Program (CPSP) survey, discussed below, indicate that parents raise such questions with paediatricians more often than do minors. . The discussion of MAID policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAID for incapable persons at the request of any other person, it is possible that parents may request MAID on behalf of their dying child.
Davies D
Paediatrics & Child Health
2018
<a href="http://doi.org/10.1093/pch/pxx181" target="_blank" rel="noreferrer noopener">10.1093/pch/pxx181</a>
Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Yotani N;Kizawa Y;Shintaku H
BMJ Paediatrics Open
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/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</a>
Pediatric palliative care and resident education
outpatient; human; child; palliative therapy; comfort; simulation; pediatrics; hospice; pain; conference abstract; survival; curriculum; terminal disease; hospital patient; pediatrician; resident; questionnaire; decision making; exercise; internal medicine; primary medical care
Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient settings among pediatric and internal medicine-pediatrics residents at a tertiary care children's hospital. Background: Palliative care is an emerging field in pediatrics. A policy statement issued by the American Academy of Pediatrics in 2013 recognizes the growing importance of interdisciplinary palliative care and hospice teams in caring for children with life threatening conditions. As medical advancements lead to a broader range of treatment options and increased survival of children with complex medical issues, patients and their families rely on their pediatric providers, both inpatient and outpatient, for an introduction to palliative care. However, pediatric providers at all levels of training have consistently reported minimal training, experience, or competence in key areas of palliative care. A workshop was developed by the authors and conducted among pediatric and internal medicine-pediatrics residents to address these gaps in the current resident curriculum. Research Objectives: The impact of the workshop was measured by changes to an 11-item, Likert-scaled questionnaire administered before and after the workshop. We hypothesized that participants of this study would report increased familiarity and confidence in pe-diatric palliative care after completing the curriculum. Methods: Participants were interns and residents of the UMMS-Baystate pediatric and internal medicine-pediatric pro-grams. The workshop consisted of two one-hour sessions which combined didactics and practical exercises. The first session provided basic definitions and addressed the role of primary care pediatricians in providing palliative care including discussions with family regarding long term goals of care. The second focused on inpatient concepts such as pain control in terminal illness and conducting effective family meetings regarding end of life decision making. Residents were asked to fill out a questionnaire prior to the intervention and after completion of both sessions. Results: Residents reported an overall greater comfort with the topic after the intervention (Pre: Median 3.1, IQR 2.8-3.8, Post: Median 4.1, IQR 3.6-4.3, P=0.003). They also reported better understanding of what pediatric palliative care is (P = 0.001) and more comfort leading a discussion regarding palliative care options for patients (P= 0.007) after the intervention. Conclusions/Implications: After a brief workshop designed for residents, participants reported improved familiarity and comfort level with pediatric palliative care. This educational intervention was able to show that residents benefit from training in pediatric palliative care. We hope that this provides a framework for further educational sessions for pediatric residents. We also hope to use this as a framework for development of a simulation based curriculum for difficult discussions within pediatrics.
Penney J; Kim G; Dietzen D
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>
Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)
medical care; adult; Canada; Canadian; child; complication; conference abstract; conversation; death; disability; female; human; joint; law; major clinical study; male; morbidity; palliative therapy; pediatrician; public figure; public health; rare disease; young adult
Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foreseeable'. Minor patients (both mature and 'never competent' minors) are currently excluded from the legislation. An independent review of the issue of minor patients and MAID was requested by Parliament. As health professionals, politicians and the public grappled with this issue, never before formally contemplated in Canada, the Canadian Paediatric Surveillance Program (CPSP) sough to provide data on exploratory conversations and explicit requests for MAID from/for minor patients to inform the independent review. Methods The CPSP is a joint program of the Public Health Agency of Canada and the Canadian Paediatric Society. The program conducts national surveillance into diseases that are high in disability, morbidity and economic costs to society, despite their low frequency. The CPSP surveys over 2500 paediatricians and paediatric subspecialists each month to monitor rare diseases, conditions and complications in Canadian children. A one-time survey was sent to all CPSP participants in May 2016. The survey tool can be accessed at www.cpsp.cps.ca/surveillance. Results The survey response rate was 40%. Over one-third of participants reported they provide end-of-life or palliative care (370; 35%). Exploratory discussions with minor patients about MAID were reported by 35 participants, representing 60 patients, the majority of whom were 14-18 years of age. Nine (9) partici-pants recalled an explicit request for MAID, representing 17 minors. Exploratory discussions with patients about MAID, on behalf of minor patients, were reported by 118 participants, representing 419 minor patients, the majority of whom were under 1 year of age. Forty-five (45) participants recalled an explicit request for MAID, representing 91 parents, the majority of whom had children under 1 year. Conclusion CPSP participants from across Canada reported exploratory conversations about and explicit requests for MAID from both minors and parents. Discussion with and explicit requests from parents outnumber those by minors by more than five to one. This study represents an important and innovative use of a paediatric surveillance system to inform a national conversation on a complex emerging ethical issue.
Moore-Hepburn C
Archives of Disease in Childhood
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/10.1136/archdischild-2018-rcpch.488" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.488</a>
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Medical Journal Of Malaysia
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="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Nyiro J; Hauser P; Zorgo S; Hegedus K
Orvosi Hetilap
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/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</a>
Guidance on forgoing life-sustaining medical treatment
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Pediatrics
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 class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</a>
Providing holistic, specialist palliative care services to children - one paediatricians experience working in a children's hospice
Hospice; Palliative Therapy; Pediatrician; Child; Human; United Kingdom
The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author will describe the nature of work within a children's hospice and in particular the role of a paediatrician working within this setting.
Hunter M
Paediatrics And Child Health
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="https://doi.org/10.1016/j.paed.2017.08.001" target="_blank" rel="noreferrer">10.1016/j.paed.2017.08.001</a>
Problematic Symptoms In Children Attending For Short Breaks At A Children's Hospice; Are We Missing An Opportunity For Symptom Assessment And Management?
Female; Hospice; Male; Symptom Assessment; Child; Clinical Article; Clinical Nurse Specialist; Diagnosis; Family Study; Health Care Delivery; Human; Information Processing; Irritability; Nursing; Pain Assessment; Pediatrician; School Child; Seizure; Sleep
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom assessment team is also described. Methods The admission notes of all children attending for respite over a 2 week period in Feb 2016 were examined and data collected on Excel. The data was pulled from Vitro an online data system used within the hospice to record all nursing, medical and multi-disciplinary notes and all contacts with the family and professionals. Information gathered included diagnoses and ACT category, problematic symptoms and the use of formal symptom assessment tools. Results A total of 22 children attended for respite over the first 2 weeks of February 2016. The average age was 7 years 2 months with a range of 1 year 11 months to 17 years. A broad range of conditions were included, the majority were from ACT category 4. As described in previous studies of children with life-limiting conditions there was a high burden of problematic symptoms among the children. 16/22 children were noted to have at least 1 symptom on the routine respite admission paperwork and nursing notes identified ongoing symptoms during the short break in 12 of the 24 children. 7/22 had respiratory symptoms, 2/22 had problematic seizures. Irritability and pain were noted in 2/22 and 3/22 respectively. 3/22 children were recorded as having poor sleep. Disappointedly although symptoms were recognised, symptom management action was only taken in 5 cases. No formal recognised symptom management tool was used. Of note the FLACC pain scale has been incorporated into the hospice paperless chart but was not used in any case. Outcome The results of the initial audit highlighted the need to change service delivery and a new symptom assessment service incorporating a clinical nurse specialist and paediatrician with support from the broader clinical team has been developed. To date 14 children have received support from the symptom assessment team and a reaudit of routine short breaks in ongoing.
Balfe J M; Booth A; Ritchie B
Archives Of Disease In Childhood
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/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313087.515</a>