Clinic, courtroom or (specialist) committee: in the best interests of the critically Ill child?

Law's processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts' decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts' apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services - and into generalist ethics support services - in order to gauge whether this is indeed a promising development.

[Communication, information, and roles of parents in the pediatric intensive care unit: A review article]. / Communication, informations et place des parents en réanimation polyvalente pédiatrique : revue de la littérature.

Pediatric intensive care units (PICUs), whose accessibility to parents raises controversy, often operate under their own rules. Patients are under critical and unstable conditions, often in a life-threatening situation. In this context, the communication with the parents and their participation in the unit may be difficult. Information is a legal, deontological, and moral duty for caregivers, confirmed by the parents' needs. But the ability to enforce them is a challenge, and there is a gap between the theory and the reality. The communication between the parents and the physicians starts at the admission of the child with a family conference. According to the Société de réanimation de langue française (SRLF), the effectiveness of the communication is based on three criteria: the patients' comprehension, their satisfaction and their anxiety and depression. It has been shown that comprehension depends on multiple factors, related on the parents, the physicians, and the medical condition of the child. Regarding the parents' participation in the organization of the service, the parents' presence is becoming an important factor. In the PICU, the parents' status has evolved. They become a member of the care team, as a partner. The best interest of the child is always discussed with the parents, as the person knowing the best their child. This partnership gives them a responsibility, which is complementary to the physician's one, but does not substitute it.

[Parental Information and Consent in Neonatology]. / Aufklärung in der Neonatologie.

Careful analysis of current adjudication reveals increasing demand of adequate record-keeping as well as meticulously documented informed consent forms regarding all aspects of medicine. Although standardized informed consent forms or explicit guidelines for obtaining procedural consent already exist in surgical disciplines there is strong evidence that, however, in neonatology (and paediatric intensive care) these processes are still incomplete and qualitatively insufficiently implemented. Therefore the author discussed all existing information prescriptions with the legal department and quality management of a large German clinic group especially in terms of relevant legislation, recent case law and specialist literature in order to obtain potential for improvement. Based on the results of this audit of expert opinions improved recommendations could be implemented in the daily practise of a department of neonatology and paediatric intensive care on a tertiary level.

Trends in the aggressiveness of end-of-life care for Korean pediatric cancer patients who died in 2007-2010.

BACKGROUND: In light of the Korean Supreme Court's 2009 ruling favoring a patient's right to die with dignity, we evaluated trends in aggressive care in a cohort of pediatric cancer patients. Methods We conducted a population-based retrospective study that used administrative data for patients who died in 2007-2010 among the 5,203 pediatric cancer patients registered at the Korean Cancer Central Registry (KCCR) during 2007-2009. RESULTS: In the time period covered, 696 patients died. The proportion who had received chemotherapy in the last 30 days of life decreased from 58.1% to 28.9% (P<0.001), those who received new chemotherapy in the same time period decreased from 55.2% to 15.1% (P<0.001), and those who received treatment in the last 2 weeks of life decreased from 51.4% to 21.7% (P<0.001). In the last 30 days of life, the proportion of patients whose hospital admission period was over 14 days increased from 70.5% to 82.5% (P = 0.03), the proportion who received cardiopulmonary resuscitation decreased from 28.6% to 9.6% (P<0.001), and we found no statistically significant trends in the proportion of emergency department visits, intensive care unit admissions, or mechanical ventilation. CONCLUSIONS: In this study, in contrast with earlier ones, the aggressiveness of end-of-life care of Korean pediatric cancer patients decreased dramatically.

[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]. / Opinions des soignants des réanimations pédiatriques françaises sur l'application de la loi Léonetti.

INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.

Estado actual y utilidad de la autopsia clínica en una unidad de cuidados intensivos pediátricos / Current situation and usefulness of autopsy in a paediatric intensive care unit

Introducción: La autopsia clínica (AC) es una herramienta de confrontación diagnóstica que se encuentra en descenso en las últimas décadas. Nuestro objetivo es describir la tasa de autopsias, la correlación de los diagnósticos clínicos y hallazgos postmortem para valorar su utilidad global en nuestro medio. Pacientes y método: Revisión de las AC en una unidad de cuidados intensivos pediátricos de un hospital terciario en un periodo de 6 años (2004-2009). Resultados: De los 154 fallecidos, se realizaron 23 AC (tasa 14,9%). Hemos asistido a un descenso en el número de autopsias practicadas, del 26 al 11%, desde el 2004 hasta el 2009. El examen postmortem mostró concordancia completa (clase V) en 7/23 casos (30,4%). En 4 casos se realizó un diagnóstico que pudo eventualmente haber afectado al pronóstico a medio-largo plazo (clase IV). En 5 casos se identificaron patologías que pudieron haberse relacionado con la enfermedad principal y pudieron contribuir a la causa de muerte (clase III). Hubo 4 casos de discrepancia de clase II. En 3 pacientes (13%) el diagnóstico postmortem, de haber sido detectado en vida, pudiera haber aumentado la supervivencia (clase IA). En 3 casos (13%) la AC permitió el consejo genético. Conclusiones: La tasa de AC en nuestro medio es baja en comparación con otros países desarrollados. El hecho de que en el 69,6% de los casos la AC arrojara nueva información acerca de la enfermedad que condujo, contribuyera o se relacionara con la muerte indica que las razones que justifican la realización de la autopsia continúan estando vigentes(AU)

Backgrounds: The autopsy is a diagnostic tool in decline over the last few decades. Our purpose is to describe the autopsy rates, the relationship between clinical and post-mortem diagnosis to evaluate the current overall usefulness of the autopsy. Patients and methods: Retrospective review of all cases in which clinical autopsy was performed between January 2004 and December 2009 in a paediatric intensive care unit (PICU) of a tertiary care hospital. Results: Of 154 deaths in the PICU during the study period, 23 autopsies were performed (rate 14.9%). Autopsy rates decreased over the study period; from 26% in 2004 to 11% in 2009. There was a complete correlation (class V) in seven patients (29.1%). Some missed minor diagnosis (class IV) were found in four patients. Five patients had class III discrepancies, and four had class II discrepancies. Major diagnoses were missed in three (17.4%) patients, with a potencial adverse impact on survival and that could have changed management in life (Class IA). In three cases (13%) the autopsy results led to parents having genetic counselling. Conclusions: The autopsy rate in our country is low when compared to other developed countries. The fact that in 69.6% of cases the autopsy revealed new findings related with the illness that caused or contributed to death shows that the reasons for performing the autopsy are still valid(AU)

[Epidemiology and evaluation of withdrawing and withholding of treatment procedure in a pediatric intensive care unit]. / Épidémiologie et évaluation des procédures de limitation et d'arrêt des traitements de maintien des fonctions vitales en réanimation pédiatrique.

OBJECTIVES: Leonetti Law of 2005 concerns procedures for questioning about the appropriateness of initiating or maintaining life-sustaining treatments. Decision of withdrawing and withholding treatment has long been practiced by neonatologists, adult and pediatricians intensivists. In this regard, the recommendations of societies encourage medical teams to assess their practices to improve them. Our evaluation is based on the document of the Ethics Committee of SRLF edited in 2010. TYPE OF STUDY: We achieved a retrospective evaluation of professional practices of the transcription of our decisions of withdrawing and withholding treatment. PATIENTS AND METHODS: This study included all children (95 patients) who have had a questioning about life-sustaining treatment of ICU between March 2008 and August 2011 in the pediatric intensive care unit of Children's Hospital of Lyon. Our evaluation is based on the document of the Ethics Committee of French Society of intensive care (SRLF) edited in 2010. We collected epidemiological data on children concerned by questioning about the appropriateness of initiating or maintaining LST and an evaluation of the transcription of our procedures for LST in our folders. Evaluation included 40 cases: 20 folders randomly selected prior an information meeting (January 2011) which were compared with 20 cases occurred consecutively after this information. This meeting was intended to remind recommendations of good practice and principal points of the law. The main assessment measure was the improvement of the practices respecting criteria of the document of the Ethics Committee of SRLF modified for pediatric care. MAIN RESULTS: Epidemiological data on procedures are comparable to literature data. Concerning the evaluation of our practices before/after a briefing and highlighted a tendency to the improvement without statistically significance. The transcription of reflection and the arguments of decision of withdrawing and withholding treatment and evaluation of pain was the points who need improvement. Finally, despite the positive developments in the therapeutic use of analgesics and sedatives, pain continues to be undervalued. CONCLUSION: The evaluation of professional practices is recommended to improve the procedures of questioning about life-sustaining treatments have become an area of expertise in intensive care.

Issues of patient consent: a study of paediatric high-dependency care.

This article reports on the issues relating to obtaining informed, signed consent for a study of paediatric high-dependency care and provides practical guidance on confidentiality for health service researchers. Consent and confidentiality are not new concepts but recent changes to the legislation and guidance offered from nursing and medical regulatory bodies have caused concerns and confusion for researchers with respect to both issues. Balancing health service research and the development of services against the requirements of patients for confidentiality is essential yet challenging. This was a time consuming, costly exercise. Resource implications may ultimately mean that studies which are of benefit to patients in relation to the delivery of their care may not be undertaken. Health professionals need to be continually updated and made aware of the legislation and confidentiality requirements for health service research involving the collection of patient-identifiable details.

Ethical problems in pediatric critical care: consent.

Informed consent constitutes one of the important considerations included in the myriad ethical dilemmas in the pediatric intensive care unit. Traditionally, the law has viewed children as incompetent to make medical decisions, and society has authorized parents or guardians to act on behalf of children. Empirical evidence has revealed that children may be more capable of participating in their medical decisions than previously thought. Some scholars now think that parents have the right to give informed permission and that professionals should seek the child's assent in many circumstances. Physicians in the intensive care unit should seriously consider consulting adolescent patients about the direction of their care and may wish to seek the input of younger patients in appropriate circumstances.

Review of ethics in paediatric anaesthesia: intensive care issues.

This is the third of a series of three articles examining the recent changes in the law in relation to ethics and the practice of paediatric anaesthesia. The review covers, in a practical question and answer format, the topics of consent, research, intensive care issues and organ donation in children.