Aligning Guidelines And Medical Practice: Literature Review On Pediatric Palliative Care Guidelines
Cancer; Children & Youth; Death & Dying; Families & Family Life; Hospice Care; Literature Reviews; Medical Prognosis; Pain Management; Palliative Care; Pediatric Nursing; Pediatrics; Quality Of Care
Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. Method: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Results: Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Significance of results: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;OBJECTIVEPalliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.METHODTo identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.RESULTSConcerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.SIGNIFICANCE OF RESULTSOur results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;
De Clercq E; Rost M; Pacurari N; Elger BS; Wangmo T
Palliative and Supportive Care
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.cambridge.org/core/journals/palliative-and-supportive-care/article/abs/aligning-guidelines-and-medical-practice-literature-review-on-pediatric-palliative-care-guidelines/630EB6CB7D3372E6F66B839BB1E05AC8">10.1017/S1478951516000882</a>
Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers
distress; medical futility; death & dying; end-of-life (EOL); ethical conflict; potentially inappropriate treatment
BACKGROUND: Potentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited. OBJECTIVES: Determine the frequency and factors associated with potentially inappropriate treatment in critically ill children as perceived by providers, and describe the factors that providers report contribute to the distress they experience when providing treatment perceived as potentially inappropriate. METHODS: Prospective observational mixed-methods study in a single tertiary level PICU conducted between March 2 and September 14, 2018. Patients 0-17 years inclusive with: (1) ≥1 organ system dysfunction (2) moderate to severe mental and physical disabilities, or (3) baseline dependence on medical technology were enrolled if they remained admitted to the PICU for ≥48 h, and were not medically fit for transfer/discharge. The frequency of perceived potentially inappropriate treatment was stratified into three groups based on degree of consensus (1, 2 or 3 providers) regarding the appropriateness of ongoing active treatment per enrolled patient. Distress was self-reported using a 100-point scale. RESULTS: Of 374 patients admitted during the study, 133 satisfied the inclusion-exclusion criteria. Eighteen patients (unanimous - 3 patients, 2 providers - 7 patients; single provider - 8 patients) were perceived as receiving potentially inappropriate treatment; unanimous consensus was associated with 100% mortality on 3-month follow up post PICU discharge. Fifty-three percent of providers experienced distress secondary to providing treatment perceived as potentially inappropriate. Qualitative thematic analysis revealed five themes regarding factors associated with provider distress: (1) suffering including a sense of causing harm, (2) conflict, (3) quality of life, (4) resource utilization, and (5) uncertainty. CONCLUSIONS: While treatment perceived as potentially inappropriate was infrequent, provider distress was commonly observed. By identifying specific factor(s) contributing to perceived potentially inappropriate treatment and any associated provider distress, organizations can design, implement and assess targeted interventions.
Sarpal A; Miller MR; Martin CM; Sibbald RW; Speechley KN
Frontiers in Pediatrics
2024
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/10.3389/fped.2024.1272648" target="_blank" rel="noreferrer noopener">10.3389/fped.2024.1272648</a>
PICU Prometheus: Ethical issues in the treatment of very sick children in Paediatric Intensive Care
Death; Counseling; Death & Dying; Death Studies; Gerontology/Ageing; Grief & Trauma Counseling - Adult; Grief & Trauma Counseling - Children & Adolescents; Health & Medical Anthropology; Medical Sociology; Palliative Care Nursing; Pastoral Counseling; Social Work with the Elderly; Sociology of Religion; Specialist Care
Through a focus on one child's extended stay in a Pediatric Intensive Care Unit, I raise four general questions about pediatric medicine: How should physicians communicate with parents of very sick children? How should physicians involve parents of very sick children in treatment decisions? How should care be coordinated when a child is being treated by different medical teams with rotating personnel? Should the guidelines for making judgments of medical futility and discontinuation of treatment differ when the patient is a child rather than an adult?
2005
Gill MB
Mortality
2005
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).
Journal Article
<a href="http://doi.org/10.1080/13576270500321746" target="_blank" rel="noreferrer">10.1080/13576270500321746</a>