Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Acta Paediatrica
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/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
Children's Palliative Care; the identified Learning Needs of Paediatricians
learning needs; life limiting conditions; pediatric palliative care; pediatricians
Aim To determine baseline learning needs of Paediatricians in Ireland when caring for children with palliative care needs. Methods A questionnaire based online survey was conducted. Results One hundred and fourteen paediatricians responded to the survey, the majority were Specialist Registrars but almost half were consultant paediatricians (46% n=52). Most had never had formal education in the paediatric palliative care (57% n=48). Areas of future training that were ranked as important or highly important (percentage of respondents) included: pain management (98% n=81), management of the dying child (96% n=80), palliative care resources (95%n=79), advanced care planning (95% n=79) and communication skills (86% n=71). Those surveyed were asked to comment on the challenges of recent clinical interactions, on analysis three overarching themes emerged; best interests of the child, inadequate training and confidence and co-ordinating care. Conclusion This survey highlights the learning needs of paediatricians and will inform the development of meaningful education sessions for doctors.
Whitla L; Devins M; Molloy E J; Twomey M; O'Reilly M; Balfe J
Irish Medical Journal
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).
Palliative care in the neonatal intensive care unit
Health Services Accessibility; Home Health Care; Hospice Care; Intensive Care Units; Multidisciplinary Care Team; Neonatal; Palliative Care; Pediatricians; Perinatal Care; Perinatal Death – Psychosocial Factors; Prenatal Diagnosis; Psychosocial; Support; United Kingdom
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.
Jackson C; Vasudevan C
Paediatrics & Child Health
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.paed.2020.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.paed.2020.01.002</a>
Self-Assessment of Skills and Competencies among Residents Participating in a Pediatric Hospice and Palliative Medicine Elective Rotation
education; Academic Medical Centers; Education; Health Services Accessibility; Hospice Care; Hospices; Human; Internal Medicine; Palliative Care; Pediatric Care; Social Behavior; Terminally Ill Patients; Time Factors; Psychosocial Factors; human; Course Evaluation; Interns and Residents; Pediatricians; Professional Development; Rotation; Self Assessment; Social Skills; Surveys; Tertiary Health Care
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of all pediatricians, it is unclear how best to teach pediatric HPM. An elective rotation during residency may serve this need. METHODS: An anonymous online survey was distributed to pediatric and internal medicine/pediatrics residents at a single, tertiary academic children's hospital. Respondents were asked to rate education, experience, and comfort with five aspects of communication with families of children with terminal illnesses and six domains of managing the symptoms of terminal illnesses. Self-ratings were recorded on a 1-5 scale: none, minimal, moderate, good, or excellent. Demographic data, including details of training and prior HPM training, were collected. Respondents completed a set of six questions gauging their attitude toward palliative care in general and at the study institution specifically. RESULTS: All respondents desire more HPM training. Those residents who self-selected to complete a pediatric HPM elective rotation had significantly higher self-ratings in 10 of 11 competency/skill domains. Free-text comments expressed concern about reliance on the specialty HPM team. DISCUSSION: A pediatric HPM elective can significantly increase residents' self-rated competency. Such rotations are an under-realized opportunity in developing the primary HPM skills of pediatricians, but wider adoption is restricted by the limited availability of pediatric HPM rotations and limited elective time during training.
Rossfeld ZM; Tumin D; Humphrey L
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.2017.0201" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0201</a>
Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
Decision Making; Dissent And Disputes; Parental Consent; Parent-child Relations; Pediatricians; Physician's Role; Adolescent; Child; Consensus; Female; Humans; Male; Mental Competency; Models Psychological
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.
Sisk BA; DuBois J; Kodish E; Wolfe J; Feudtner C
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).
10.1542/peds.2017-0234
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Research In Developmental Disabilities
2016
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).
DOI: 10.1016/j.ridd.2016.09.012
Patient End-of-life Experiences For Pediatric Trainees: Spanning The Educational Continuum
Terminal Care; Education; Bereavement In Children; Pediatricians; Medical Students; Analysis; Practice; Control
Educational Continuum; End-of-life Care; Grieving; Pediatric Resident Education
Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that facilitated integration of experiences. Methods Medical students (MS4) and pediatric residents (PL-1-3) completed a 30-question survey about experiences with patient deaths and integration of these experiences. Results A total of 307 of 404 residents (76%) participated. Mean number of deaths ranged from 3.0 to 6.5 in the prior 12 months, and the most common location was neonatal intensive care unit or pediatric intensive care unit. In total, 18% to 27% experienced a death in their personal life. Between 26% and 41% of the residents made contact with a family after death, and 15% to 35% attended a funeral. Characteristics of good deaths included good communication and discussion of end-of-life issues. Conclusions Trainees experienced patient deaths along the educational continuum. These findings have implications for the optimal timing and method of end-of-life care education.
K Senthil
Clin Pediatr (phila)
2016
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).
DOI: 10.1177/0009922816631513
Effectiveness Of Pediatric Palliative Care Education On Pediatric Clinicians
Clinical Education; Confidence; Nurses; Pediatric Palliative Care; Pediatricians
Abstract
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest-posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families. Results showed a significant main effect of training on confidence levels (p < .000). This suggests that education can effectively boost pediatric clinicians' confidence regarding providing pediatric palliative care and therefore should regularly be provided to clinicians.
Peng NH; Lee CH; Lee MC; Huang LC; Chang YC; DeSwarte-Wallace J
Western Journal Of Nursing Research
2016
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).
DOI: 10.1177/0193945916680615