The ethics of publishing in medical journals.

Ethics has been defined as the way we ought to behave. Medical publishing essentially exists to broadcast current and new medical knowledge to aid in the practice of medicine. In this review article we consider many of the aspects of medical publishing with regard to 'what we ought to do' and, equally, 'what we ought not to do' from the perspective of various ethical frameworks. Although ethics is not the law or a set of rules, nor a code of conduct, an ethical lens can be useful when developing good general guidelines for medical publishing.

How mandatory is the mandatory reporting of children at risk?

Although mandatory reporting of suspected child abuse was first introduced over 50 years ago, there are no quantitative studies addressing whether or not it achieves better outcomes for children. We report two cases of maternal infection, one with tuberculosis (TB) and one with human immunodeficiency virus (HIV), where the mothers' failure to attend follow-up appointments raised the possibility of significant harm if their infants were infected. Some health professionals argued strongly that mandatory reporting meant the mothers should be reported to child protection authorities. Others argued that the risk was not critically imminent and an immediate report could seriously compromise maternal confidentiality, risked maternal disengagement and a worse outcome. An alternative was to make more vigorous efforts to contact the mothers and report only if these failed. In the TB case, reporting to child protection was deferred in favour of making more strenuous efforts at communication, which proved successful. In the HIV case, a case worker reported the case to child protection, but when the doctor contacted child protection authorities they agreed not to contact the mother unless the doctor's vigorous attempts to communicate with her failed. We do not advocate for breaking the law regarding mandatory reporting, but we do argue for a considered approach to the timing of reporting and for a collaborative approach with child protection services.

Use of guidelines when planning home care of a girl with severe congenital myopathy.

We use issues that arose in the management of a 4-year old girl with a congenital myopathy to consider the tension between respecting the choices and decisions of the child's parents and applying clinical practice guidelines that emphasise minimising risk to the child. This case raises the issue of when it is reasonable to override parents' choice of management options.

In the beginning, there was general paediatrics .

In this article, we address how general paediatrics has evolved and adapted to change over the past 50 years and speculate on its future directions. We compare the state of general paediatrics with that of general adult medicine. We argue that general paediatrics must continue to have a strong role both in paediatric teaching hospitals and the community.

Spinal muscular atrophy type I: do the benefits of ventilation compensate for its burdens?

We report the progress of an 8-year-old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision-making in SMA type 1.

Management of children with spinal muscular atrophy type 1 in Australia.

AIMS: The study aims to: (i) estimate the prevalence of spinal muscular atrophy type 1 (SMA 1); (ii) describe what practices characterise end-of-life care of patients with SMA 1; and (iii) ascertain whether a consistent approach to the management of these patients exists in Australia. METHODS: An audit of the Australasian pathology laboratories offering the diagnostic SMN1 deletion test was conducted for patients diagnosed with SMA in Australia for 2010 and 2011. In addition, a retrospective clinical audit was conducted in eight major Australian paediatric hospitals of the end-of-life care provided to children with confirmed SMA 1 from 2005 to 2010. RESULTS: Thirty-five children were included in the clinical audit, accounting for an estimated 61% of children diagnosed with SMA 1 from 2005 to 2010. Twenty-six per cent were ventilated invasively, only two of whom were intubated after the diagnosis was confirmed. No children were ventilated long term (>90 days) or had a tracheostomy performed. Nasogastric tube feeding was a common measure to support adequate nutritional intake. Total parenteral nutrition, gastrostomy and fundoplication were not provided for any children. Conflict over end-of-life care decisions was documented in one instance, without the involvement of a guardianship tribunal. CONCLUSION: There appears to be a consistent approach in the management of children with SMA 1 in Australia, which can be characterised as 'actively managed dying'. This study could contribute to the development of Australian consensus guidelines for the management of these children. These results also highlight a number of ethical issues related to the management of children with SMA 1.

Restricting cough and cold medicines in children.

AIMS: Based on concerns about safety and efficacy, international authorities have either advised against the use of cough and cold medication or considering such action. We aimed to systematically review the evidence for the effectiveness and safety of cough and cold medicines in children. METHODS: We conducted a systematic review to identify studies relating to the use of products to treat symptoms of the common cold, influenza or allergic rhinitis, and relating to poisoning or toxicity from unintentional ingestion or overdose in children (<12 years). Medline, Embase and the Cochrane database were searched. No meta-analysis was undertaken because of the paucity of evidence, multiple medicines available, and the need to consider both effectiveness and safety. RESULTS: Seventy two relevant studies or clinical reports were identified. There was little support for the effectiveness of these medicines for acute cough or the common cold in children. However, the majority of these medicines do not appear to be highly toxic in children and are not a major cause of severe effects following unintentional poisoning. The common use of these agents does not appear to be responsible for increased deaths in young children. Many cases of toxicity from cough and cold medications in young children are a result of therapeutic error. Particular medications, including diphenhydramine and codeine, appear to be associated with a high frequency of severe adverse effects and toxicity. CONCLUSION: Restriction of cough and cold medicines in children is supported by currently available evidence.

Expressing ethical principles of treatment and care in a charter: what value?

More than ever before, public institutions are expected to have accessible guidelines on what they do, both for their staff and for those served by them. With this in mind, some principles of treatment and care of sick children were drafted for the Children's Hospital at Westmead. These were centred on ethics, primarily of what was best for the child. They were neither all-inclusive nor specific. They were labelled as a charter. They were rejected by a parent committee and met with unenthusiastic responses at meetings of hospital and ethics professionals. Reasons for this are unclear, but it is speculated that fear of the unknown and distrust of institutions may be factors. To date, the charter has not proved useful, except in provoking further discussion on how general guidelines are written, used and valued and on end-of-life decision-making more generally.

Managing ethically questionable parental requests: growth suppression and manipulation of puberty.

Doctors sometimes struggle with ethically challenging requests for treatment from children's parents. For instance, we have recently had two requests by parents of children, a girl and a boy, each with a severe developmental disability, for hormonal therapy to suppress growth and puberty: the girl's parents requested, in addition, hysterectomy and mastectomy. We propose a reliable approach to assessing the ethical and legal aspects of these and other requests for 'non-therapeutic' treatment of a minor who lacks the capacity to give informed consent. We argue that a doctor should first assess whether the request is one that he or she can, in conscience, accede to, and then, if it is, seek the authorisation of a court. We outline considerations relevant to the doctor's assessment of both the ethical issues and to the need for court authorisation.