The pediatric complex chronic conditions (CCC) classification system, developed in 2000, requires revision to accommodate the International Classification of Disease 10th Revision (ICD-10). To update ...the CCC classification system, we incorporated ICD-9 diagnostic codes that had been either omitted or incorrectly specified in the original system, and then translated between ICD-9 and ICD-10 using General Equivalence Mappings (GEMs). We further reviewed all codes in the ICD-9 and ICD-10 systems to include both diagnostic and procedural codes indicative of technology dependence or organ transplantation. We applied the provisional CCC version 2 (v2) system to death certificate information and 2 databases of health utilization, reviewed the resulting CCC classifications, and corrected any misclassifications. Finally, we evaluated performance of the CCC v2 system by assessing: 1) the stability of the system between ICD-9 and ICD-10 codes using data which included both ICD-9 codes and ICD-10 codes; 2) the year-to-year stability before and after ICD-10 implementation; and 3) the proportions of patients classified as having a CCC in both the v1 and v2 systems.
The CCC v2 classification system consists of diagnostic and procedural codes that incorporate a new neonatal CCC category as well as domains of complexity arising from technology dependence or organ transplantation. CCC v2 demonstrated close comparability between ICD-9 and ICD-10 and did not detect significant discontinuity in temporal trends of death in the United States. Compared to the original system, CCC v2 resulted in a 1.0% absolute (10% relative) increase in the number of patients identified as having a CCC in national hospitalization dataset, and a 0.4% absolute (24% relative) increase in a national emergency department dataset.
The updated CCC v2 system is comprehensive and multidimensional, and provides a necessary update to accommodate widespread implementation of ICD-10.
Along with potential benefits to healthcare delivery, machine learning healthcare applications (ML-HCAs) raise a number of ethical concerns. Ethical evaluations of ML-HCAs will need to structure the ...overall problem of evaluating these technologies, especially for a diverse group of stakeholders. This paper outlines a systematic approach to identifying ML-HCA ethical concerns, starting with a conceptual model of the pipeline of the conception, development, implementation of ML-HCAs, and the parallel pipeline of evaluation and oversight tasks at each stage. Over this model, we layer key questions that raise value-based issues, along with ethical considerations identified in large part by a literature review, but also identifying some ethical considerations that have yet to receive attention. This pipeline model framework will be useful for systematic ethical appraisals of ML-HCA from development through implementation, and for interdisciplinary collaboration of diverse stakeholders that will be required to understand and subsequently manage the ethical implications of ML-HCAs.
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Dostopno za:
DOBA, IJS, IZUM, KILJ, NUK, OILJ, PILJ, PNG, PRFLJ, SAZU, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Modes of Death Within a Children's Hospital Trowbridge, Amy; Walter, Jennifer K; McConathey, Eric ...
Pediatrics (Evanston),
10/2018, Letnik:
142, Številka:
4
Journal Article
Recenzirano
Odprti dostop
: media-1vid110.1542/5804909711001PEDS-VA_2017-4182
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care.
We ...conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling.
We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13-0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05-5.73), mostly because of code events occurring in the first 24 hours of hospitalization.
Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children's ...hospitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution.
In the summer of 2012, we surveyed 226 hospitals as identified by the National Association of Children's Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support.
Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC programs report a high level of dependence on hospital funding.
PPC programs are becoming common in children's hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation standards may be warranted to ensure the highest quality of PPC.
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This ...observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
On behalf of the Drug and Therapeutics, and Ethics Committees of the Pediatric Endocrine Society, we sought to update the guidelines published in 2003 on the use of growth hormone (GH). Because ...idiopathic short stature (ISS) remains a controversial indication, and diagnostic challenges often blur the distinction between ISS, GH deficiency (GHD), and primary IGF-I deficiency (PIGFD), we focused on these three diagnoses, thereby adding recombinant IGF-I therapy to the GH guidelines for the first time.
This guideline was developed following the GRADE approach (Grading of Recommendations, Assessment, Development, and Evaluation).
This guideline provides recommendations for the clinical management of children and adolescents with growth failure from GHD, ISS, or PIGFD using the best available evidence.
The taskforce suggests that the recommendations be applied in clinical practice with consideration of the evolving literature and the risks and benefits to each individual patient. In many instances, careful review highlights areas that need further research.
In an ideal world, all of us - patients, parents, family members, nurses, physicians, social workers, therapists, pastoral care workers, and others - would always work together in a collaborative ...manner to provide the best care possible. This article bases the framework for this ideal upon studies of communication between patients, families, and clinicians, as well as more general works on communication, collaboration, decision-making, mediation, and ethics, and is comprised of four parts: what is meant by collaborative communication; key concepts that influence how we frame the situations that children with life-threatening conditions confront and how these frameworks shape the care we provide; general topics that are important to the task of collaborative communication, specifically how we use heuristics when we set about to solve complicated problems; and three common tasks of collaborative communication, offering practical advice for patient care.
Physician empathy is both theoretically and empirically critical to patient health, but research indicates that empathy declines throughout medical school and is lower than ideal among physicians. In ...this paper, we synthesize the published literature regarding interventions that were quantitatively evaluated to detect changes in empathy among medical students, residents, fellows and physicians.
We systematically searched PubMed, EMBASE, Web of Science and PsychINFO in June of 2014 to identify articles that quantitatively assessed changes in empathy due to interventions among medical students, residents, fellows and physicians.
Of the 1,415 articles identified, 64 met inclusion criteria. We qualitatively synthesized the findings of qualified studies by extracting data for ten study metrics: 1) source population, 2) sample size, 3) control group, 4) random assignment, 5) intervention type, 6) intervention duration, 7) assessment strategy, 8) type of outcome measure, 9) outcome assessment time frame, and 10) whether a statistically significant increase in empathy was reported. Overall, the 64 included studies were characterized by relatively poor research designs, insufficient reporting of intervention procedures, low incidence of patient-report empathy assessment measures, and inadequate evaluations of long-term efficacy. 8 of 10 studies with highly rigorous designs, however, found that targeted interventions did increase empathy.
Physician empathy appears to be an important aspect of patient and physician well-being. Although the current empathy intervention literature is limited by a variety of methodological weaknesses, a sample of high-quality study designs provides initial support for the notion that physician empathy can be enhanced through interventions. Future research should strive to increase the sample of high-quality designs through more randomized, controlled studies with valid measures, explicit reporting of intervention strategies and procedures, and long-term efficacy assessments.
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to ...relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases.
Lying to My Mom Feudtner, Chris
JAMA : the journal of the American Medical Association,
10/2023, Letnik:
330, Številka:
14
Journal Article
Recenzirano
In this narrative medicine essay, a pediatrician-medical ethicist navigates the decision to honor his 87-year-old mother’s wishes to refrain from cancer treatment and elects not to tell her of a mass ...in her liver discovered by a CT scan.
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