Combining the best interest standard with shared decision-making in paediatrics—introducing the shared optimum approach based on a qualitative study

Paediatric decision-making is the art of respecting the interests of child and family with due regard for evidence, values and beliefs, reconciled using two important but potentially conflicting concepts: best interest standard (BIS) and shared decision-making (SD-M). We combine qualitative research, our own data and the normative framework of the United Nations Convention on the Rights of Children (UNCRC) to revisit current theoretical debate on the interrelationship of BIS and SD-M. Three cohorts of child, parent and health care professional interviewees (Ntotal = 47) from Switzerland and the United States considered SD-M an essential part of the BIS. Their responses combined with the UNCRC text to generate a coherent framework which we term the shared optimum approach (SOA) combining BIS and SD-M. The SOA separates different tasks (limiting harm, showing respect, defining choices and implementing plans) into distinct dimensions and steps, based on the principles of participation, provision and protection. The results of our empirical study call into question reductive approaches to the BIS, as well as other stand-alone decision-making concepts such as the harm principle or zone of parental discretion. Conclusion: Our empirical study shows that the BIS includes a well-founded harm threshold combined with contextual information based on SD-M. We propose reconciling BIS and SD-M within the SOA as we believe this will improve paediatric decision-making

Multidisciplinary teams caring for people with variations of sex characteristics: a scoping review

BackgroundIn 2006 the Chicago consensus statement on the management of people with variations of sex characteristics (VSC) acknowledged the importance of a multidisciplinary team (MDT) approach. The consensus update from 2016 reinforced the call for multidisciplinary collaborations between medical professionals, parents and support groups, and proposed guidelines to improve shared decision making and patient-centred care embedded in ethical principles of self-determination and child participation. But there is little evidence that successfully MDTs have been implemented in clinical practice.Methods and aimsA scoping review was conducted to identify studies that address the collaboration and decision making process of MDTs providing care of people with VSC to identify ideal and actual (1) team composition; (2) models of collaboration and (3) ethical principles that MDTs follow. Six databases were systematically searched: CINAHIL, Medline, Psychinfo, Scopus, Socindex and Web of Science. No restriction was placed on the type of methodology used in the studies. To frame the research, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used.ResultsThe MDTs in the literature include mainly medical professionals: endocrinologists, urologists and surgeons. The collaboration among medical professionals in MDTs lacks cooperation as one team member sets the tasks of the team while each professional works separately. Despite the importance of psycho-social support the involvement of psychologists remains secondary. The implementation of ethical principles tends to exclude people with VSC.ConclusionThe care of people with VSC described in the papers is medically oriented as the team members are mainly medical professionals working separately. MDT tend to exclude people with VSC despite references to shared decision making processes and informed consent. There was no mention of adult care and lack of inclusion of patient’s perspective in the care process. The future research should do more empirical research of MDTs

Pädiatrische Palliative Care – wenn das Ende mit dem Anfang kommt

Zusammenfassung. Palliative Care wird normalerweise nicht mit dem Kindes- und Jugendalter in Verbindung gebracht. Trotzdem leben allein im deutschsprachigen Europa mehr als 50 000 Kinder mit lebensverkürzenden Krankheiten und jährlich sterben etwa 5000 Kinder. Palliative Care für Kinder und Jugendliche (PPC) ist eine Haltung, die niemandem aufgezwungen werden darf, sondern gelebt werden muss; bei komplex-chronischen Krankheiten oftmals über viele Jahre. Eine erfolgreiche und nachhaltige Implementierung von PPC basiert deshalb auf einer wertschätzenden Zusammenarbeit zwischen verschiedenen Teams und den betroffenen Familien getreu der hier vorgestellten Quadriga einer umfassenden Symptomkontrolle mit Neugier, Geduld, Aktivität und persönliche Zurückhaltung. Notwendige Grundlagen wie der Betreuungsplan, der interprofessionelle Hausbesuch und der runde Tisch sowie die 24-Stunden-Erreichbarkeit werden ebenso vorgestellt wie eine Triage-Technik und Advanced Care Management

»Schnitt im Kopf«

In the second half of the twentieth century, the Zurich Children’s Hospital (Kispi) developed into an internationally renowned treatment center for »intersexuality.« Children with ambiguous body-sexual characteristics were given there a clearly male or female identification by means of surgical interventions and/or hormone therapies. This study examines the question of how medical and family communication shaped the (narrated) experience of »intersex« treatments. Our analysis is based on nine oral history interviews with former Kispi patients. We show that communication in connection with the treatments was semi-tabooing and directive. We discuss the mode of communication in its social and medical-historical conditions (tabooing of the clitoris and »intersex,« paternalistic relationship between doctors and patients, concealment of »intersex« diagnoses as a doctrine), examine its biographical effects (ignorance of one’s own body, feelings of shame, stigmatization) and address individual processing strategies (breaking taboos, acquisition of knowledge)

Doctors, families and the industry in the clinic: the management of ‘intersex’ children in Swiss paediatric medicine (1945–1970)

This manuscript investigates clinical decisions and the management of ‘intersex’ children at the University Children’s Hospital Zurich between 1945 and 1970. This was an era of rapid change in paediatric medicine, something that was mirrored in Zurich. Andrea Prader, the principal figure in this paper, started his career during the late 1940s and was instrumental in moving the hospital towards focusing more on expertise in chronic diseases. Starting in 1950, he helped the Zurich hospital to become the premier centre for the treatment of so-called ‘intersex’ children. It is this treatment, and, in particular, the clinical decision-making that is the centre of our article. This field of medicine was itself not stable. Rapid development of diagnostic tools led to the emergence of new diagnostic categories, the availability of new drugs changed the management of the children’s bodies and an increased number of medical experts became involved in decision-making, a particular focus lay with the role of the children themselves and of course with their families. How involved were children or their families in an era widely known as the golden age of medicine

No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Background: Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. Procedure: The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. Results: For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. Conclusion: The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals

Early Genital Surgery in Disorders/Differences of Sex Development: Patients’ Perspectives

Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072