Intractable difficulties in caring for people with Sickle Cell Disease

Bergman and Diamond (2013) have articulately and accurately identified many of the reasons why, and the problems associated with, the identification of people with sickle cell disease (SCD) as “difficult patients.” In our view, however, by suggesting that this problem is best dealt with through an ethics service consultation (ESC), they misconstrue the source of the difficulties of SCD and fail to appreciate the limitations of bioethics in seeking to improve the health care experience of people living with SCD. We provide empirical data describing an Australian perspective of SCD care, which highlights not only the complex issues raised by this illness but the challenges it creates for medical decision making and for bioethics. We suggest that the difficulties of SCD are protean in nature and that more can be gained from thinking again about the limits of bioethics and contemporary medicine than it can by seeking solace in clinical ethics consultation

Intractable difficulties in caring for people with Sickle Cell Disease

Bergman and Diamond (2013) have articulately and accurately identified many of the reasons why, and the problems associated with, the identification of people with sickle cell disease (SCD) as “difficult patients.” In our view, however, by suggesting that this problem is best dealt with through an ethics service consultation (ESC), they misconstrue the source of the difficulties of SCD and fail to appreciate the limitations of bioethics in seeking to improve the health care experience of people living with SCD. We provide empirical data describing an Australian perspective of SCD care, which highlights not only the complex issues raised by this illness but the challenges it creates for medical decision making and for bioethics. We suggest that the difficulties of SCD are protean in nature and that more can be gained from thinking again about the limits of bioethics and contemporary medicine than it can by seeking solace in clinical ethics consultation

EBM and Epistemological Imperialism: Narrowing the divide between evidence and illness

Evidence Based Medicine (EBM) is an approach to clinical practice that relies on the use of systematically reviewed published clinical research of high quality. Whilst there is some speculation as to whether a true consensus definition of EBM exists (Loughlin (2008)(1)), a commonly cited explanation “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients’ (Sackett et al (1996)(2)). Most approaches to “EBM” incorporate the use of an evidence hierarchy that presupposes that some forms of evidence are better than others (Guyatt and Rennie (2002)(3)), that meta-analyses and randomised controlled trials (RCTs) will guide a better level of care than expert or local knowledge. Although EBM is pervasive throughout all health literature a number of ethical (Gupta (2009)(4)), epistemological (Loughlin (2008)(1)), and clinical practice critiques (Tobin (2008)(5)) have emerged. Criticisms of EBM on ethical grounds have previously been summarised by Kerridge (2010)(6) and include ; “that the implicit and explicit requirement for RCTs may lead to unnecessary research being done where sufficient evidence already exists;... that methods privileged by EBM, most notably the RCT, are methodologically unable to answer questions related to individual patients;.... that evidence hierarchies are inadequate and misleading;.... that the dataset that EBM draws from is systematically bias[ed],.... that the translation of evidence into practice through clinical practice guidelines and decision aids is both ethically and epistemologically problematic...[and] that evidence is not value-neutral and cannot be easily translated into practice.

The management of children with Spinal Muscular Atrophy Type 1 in Australia

Aims: To (1) estimate the prevalence of Spinal Muscular Atrophy Type 1 (SMA 1); (2) describe what practices characterise end-of-life care of patients with SMA 1; (3) 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: 35 children were included in the clinical audit, accounting for an estimated 61% of children diagnosed with SMA 1 from 2005-2010. 26% 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

Rethinking pediatric ethics consultations

Johnson and colleagues (2015) report a retrospective review of the experience of an ethics consultation service at a single, highly specialized children's hospital over an 11-year period. Despite its methodologic limitations, the results of this study are worthy of note. The St. Jude Children's Research Hospital ethics consultation service consulted on a range of complex cases, including the management of conflict between parents and physicians, futility, parental demands, treatment nonadherence, and, less commonly, end-of-life issues. The number of case consultations was small, fewer than five per year, and did not increase over time. The retrospective nature of the study prevented eliciting how often consultations altered treatment or other decisions. No record was kept of clinical staff, parent, or patient perception of the value of the ethics consultation, nor of the frequency or value of informal (curb side) ethics consultations. The St. Jude ethics consultation process is consistent with “standard” models in the field. An ethics team comprising two to five staff members, including an ethicist, performs the initial ward consultation, which is then discussed with the formal clinical ethics committee of 21 people. Other involved services participate via interdisciplinary meetings. The types of consultation are consistent with many other services, including both formal and informal consultations using a range of methods to assist resolution of cases, including mediation and arbitration. Despite open access to requesting consultations, including anonymous enquiries, almost all requests came from physicians, often the same ones. Only a few came from nurses and none from parents or patients. Importantly, nurses appeared to be subject to repercussions from physicians if they requested consultations, an important issue that requires further attention but goes beyond the scope of our commentary. We suggest that the experience of the St. Jude service illustrates both the limitations of ethics consultation and the need to evaluate the importance and impact of an ethics service using metrics other than simply the number of case consultations

Eliminating latent tuberculosis in low-burden settings: are the principal beneficiaries to be disadvantaged groups or the broader population?

Tuberculosis (TB) remains a leading cause of morbidity and mortality worldwide, and the burdens of this disease continue to track prior disadvantage. In order to galvanise a coordinated global response, WHO has recently launched the End TB Campaign that aims to eliminate TB by 2050. Key to this is the introduction of population screening programmes in low-burden settings to identify and treat people who have latent TB infection (LTBI). The defining features of LTBI are: that it is not an active disease but confers an increased risk of disease; the socially disadvantaged are those most in danger and uncertainty persists as to who will be harmed or benefitted from screening-led prophylactic interventions. Systematic screening programmes that include surveillance, case-finding and treatment of asymptomatic individuals inevitably redistribute the risk of harms and the potential for benefits within a population. The extent to which those targeted within such programmes should be exposed to higher levels of risk in the pursuit of individual or community benefits requires careful consideration prior to implementation. As currently construed, it remains unclear who stands to benefit most from how LTBI screening in high-income countries is being organised, and whose health is being prioritised: members of disadvantaged groups or the broader community. Unless the aims of LTBI screening programmes in these settings are made transparent and their prioritisation ethically justified, there is a significant danger that such a targeted intervention will further disadvantage those who have the least capacity to bear the burdens of TB elimination.NHMRC Centre for Research Excellence in TB Control (CRE 1043225)

Experimental study of pedestrian flow through a bottleneck

In this work the results of a bottleneck experiment with pedestrians are presented in the form of total times, fluxes, specific fluxes, and time gaps. A main aim was to find the dependence of these values from the bottleneck width. The results show a linear decline of the specific flux with increasing width as long as only one person at a time can pass, and a constant value for larger bottleneck widths. Differences between small (one person at a time) and wide bottlenecks (two persons at a time) were also found in the distribution of time gaps.Comment: accepted for publication in J. Stat. Mec

Pedestrian, Crowd, and Evacuation Dynamics

This contribution describes efforts to model the behavior of individual pedestrians and their interactions in crowds, which generate certain kinds of self-organized patterns of motion. Moreover, this article focusses on the dynamics of crowds in panic or evacuation situations, methods to optimize building designs for egress, and factors potentially causing the breakdown of orderly motion.Comment: This is a review paper. For related work see http://www.soms.ethz.c