Under the carpet : the politics and trauma of patient harm

Few studies have investigated iatrogenic outcomes from the viewpoint of patient experience. To address this anomaly, the broad aim of this research is to explore the lived experience of patient harm. Patient harm is defined as major harm to the patient, either psychosocial or physical in nature, resulting from any aspect of health care. Utilising the method of Consensual Qualitative Research (CQR), in-depth interviews are conducted with twenty-four volunteer research participants who self-report having been severely harmed by an invasive medical procedure. A standardised measure of emotional distress, the Impact of Event Scale (IES), is additionally employed for purposes of triangulation. Thematic analysis of transcript data indicate numerous findings including: (i) difficulties regarding patients‘ prior understanding of risks involved with their medical procedure; (ii) the problematic response of the health system post-procedure; (iii) multiple adverse effects upon life functioning; (iv) limited recourse options for patients; and (v) the approach desired in terms of how patient harm should be systemically handled. In addition, IES results indicate a clinically significant level of distress in the sample as a whole. To discuss findings, a cross-disciplinary approach is adopted that draws upon sociology, medicine, medical anthropology, psychology, philosophy, history, ethics, law, and political theory. Furthermore, an overall explanatory framework is proposed in terms of the master themes of power and trauma. In terms of the theme of power, a postmodernist analysis explores the politics of patient harm, particularly the dynamics surrounding the politics of knowledge (e.g., notions of subjective versus objective knowledge, informed consent, and open disclosure). This analysis suggests that patient care is not the prime function of the health system, which appears more focussed upon serving the interests of those in the upper levels of its hierarchy. In terms of the master theme of trauma, current understandings of posttraumatic stress disorder (PTSD) are critiqued, and based on data from this research as well as the international literature, a new model of trauma is proposed. This model is based upon the principle of homeostasis observed in biology, whereby within every cell or organism a state of equilibrium is sought and maintained. The proposed model identifies several bio-psychosocial markers of trauma across its three main phases. These trauma markers include: (i) a profound sense of loss; (ii) a lack of perceived control; (iii) passive trauma processing responses; (iv) an identity crisis; (v) a quest to fully understand the trauma event; (vi) a need for social validation of the traumatic experience; and (vii) posttraumatic adaption with the possibility of positive change. To further explore the master themes of power and trauma, a natural group interview is carried out at a meeting of a patient support group for arachnoiditis. Observations at this meeting and members‘ stories in general support the homeostatic model of trauma, particularly the quest to find answers in the face of distressing experience, as well as the need for social recognition of that experience. In addition, the sociopolitical response to arachnoiditis highlights how public domains of knowledge are largely constructed and controlled by vested interests. Implications of the data overall are discussed in terms of a cultural revolution being needed in health care to position core values around a prime focus upon patients as human beings.

Defences in medical negligence : to what extent has tort law reform in Australia limited the liability of health professionals?

Tort law reform has resulted in legislation being passed by all Australian jurisdictions in the past decade implementing the recommendations contained in the Ipp Report. The report was in response to a perceived crisis in medical indemnity insurance. The objective was to restrict and limit liability in negligence actions. This paper will consider to what extent the reforms have impacted on the liability of health professionals in medical negligence actions. The reversal of the onus of proof through the obvious risk sections has attempted to extend the scope of the defence of voluntary assumption of risk. There is no liability for the materialisation of an inherent risk. Presumptions and mandatory reductions for contributory negligence have attempted to reduce the liability of defendants. It is now possible for reductions of 100% for contributory negligence. Apologies can be made with no admission of legal liability to encourage them being made and thereby reduce the number of actions being commenced. The peer acceptance defence has been introduced and enacted by legislation. There is protection for good samaritans even though the Ipp Report recommended against such protection. Limitation periods have been amended. Provisions relating to mental harm have been introduced re-instating the requirement of normal fortitude and direct perception. After an analysis of the legislation, it will be argued in this paper that while there has been some limitation and restriction, courts have generally interpreted the civil liability reforms in compliance with the common law. It has been the impact of statutory limits on the assessment of damages which has limited the liability of health professionals in medical negligence actions.

Loss of chance in medical negligence claims now a lost cause?

The question whether the loss of chance of a better medical outcome in cases of medical negligence should be recognised as actionable damage is ‘a question which has divided courts and commentators throughout the common law world.’ In April 2010, the High Court handed down its anticipated decision in the case of Tabet (by her Tutor Sheiban) v Gett (2010) 240 CLR 537. The issue considered by the court was whether the appellant could claim in negligence for the loss of a chance of a better medical outcome. This issue had not been considered by the High Court previously, the most relevant cases being Rufo v Hosking (2004) 61 NSWLR 678 and Gavalas v Singh (2001) 3 VLR 404. Claiming for a loss of chance in a personal injury action raises questions as to recognised damage and causation, and the members of the High Court considered both of these.

An actor-network research frame for analysing complex socio-technical situations

This paper presents a “research frame” which we have found useful in analyzing complex socio- technical situations. The research frame is based on aspects of actor-network theory: “interressment”, “enrollment”, “points of passage” and the “trial of strength”. Each of these aspects are described in turn, making clear their purpose in the overall research frame. Having established the research frame it is used to analyse two examples. First, the use of speech recognition technology is examined in two different contexts, showing how to apply the frame to compare and contrast current situations. Next, a current medical consultation context is described and the research frame is used to consider how it could change with innovative technology. In both examples, the research frame shows that the use of an artefact or technology must be considered together with the context in which it is used.

Advance directives, autonomy and the refusal of life-sustaining medical treatment

As Australian society 1s agemg, individuals are increasingly concerned about managing their future, including making decisions about the medical treatment they may wish to receive or refuse if they lose decision-making capacity. To date, there has been relatively little research into the extent to which legal regulation allows competent adults to make advance refusals of life-sustaining medical treatment that will bind health professionals and others when a decision needs to be made at a future time. This thesis aims to fill this gap in the research by presenting the results of research into the legal regulation of advance directives that refuse life-sustaining medical treatment. In the five papers that comprise this thesis, the law that governs this area is examined, and the ethical principle of autonomy is used to critically evaluate that law. The principal finding of this research is that the current scheme of regulation is ineffective to adequately promote the right of a competent adult to make binding advance directives about refusal of medical treatment. The research concludes that legislation should be enacted to enable individuals to complete an advance directive, only imposing restrictions to the extent that this is necessary to promote individual autonomy. The thesis first examines the principle of autonomy upon which the common law (and some statutory law) is expressed to be based, to determine whether that principle is an appropriate one to underpin regulation. 1 The finding of the research is that autonomy can be justified as an organising principle on a number of grounds: it is consistent with the values of a liberal democracy; over recent decades, it is a principle that has been even more prominent within the discipline of medical ethics; and it is the principle which underpins the legal regulation of a related topic, namely the contemporaneous refusal of medical treatment. Next, the thesis reviews the common law to determine whether it effectively achieves the goal of promoting autonomy by allowing a competent adult to make an advance directive refusing treatment that will operate if he or she later loses decision-making capacity. 2 This research finds that conunon law doctrine, as espoused by the judiciary, prioritises individual choice by recognising valid advance directives that refuse treatment as binding. However, the research also concludes that the common law, as applied by the judiciary in some cases, may not be effective to promote individual autonomy, as there have been a number of circumstances where advance directives that refuse treatment have not been followed. The thesis then examines the statutory regimes in Australia that regulate advance directives, with a focus on the regulation of advance refusals of life-sustaining medical treatment.3 This review commences with an examination ofparliamentary debates to establish why legislation was thought to be necessary. It then provides a detailed review of all of the statutory regimes, the extent to which the legislation regulates the form of advance directives, and the circumstances in which they can be completed, will operate and can be ignored by medical professionals. The research finds that legislation was enacted mainly to clarify the common law and bring a level of certainty to the field. Legislative regimes were thought to provide medical professionals with the assurance that compliance with an advance directive that refuses life-sustaining medical treatment will not expose them to legal sanction. However, the research also finds that the legislation places so many restrictions on when an advance directive refusing treatment can be made, or will operate, that they have not been successful in promoting individual autonomy.

Refusal of medical treatment : a child's prerogative?

Society has a need for children to be able to make health care decisions. Homeless children need access to health care. Parents may not be accessible or competent to consent to their child’s health care. The familial relationship may have broken down. Children may not want their parents to know about drug, alcohol or pregnancy related issues. There is legal and academic support for the right of children to make autonomous decisions with respect to their health care. However what these decisions cover and who can make them is not clear. Whether or not a minor has capacity and is therefore competent to consent to medical treatment is a question of law. Some states of Australia have enacted legislation, while others rely on the common law to determine this issue. At common law a minor is capable of giving consent to medical treatment when he or she achieves a sufficient understanding and intelligence to be able to understand fully what is proposed. Known as ‘Gillick competence’ this is a well known principle of law. The question posed by this paper is whether the decision of a ‘Gillick competent’ child can and should be overridden by the court?

A prospective cohort study of geriatric syndromes among older medical patients admitted to acute care hospitals

OBJECTIVES: To identify the prevalence of geriatric syndromes in the premorbid for all syndromes except falls (preadmission), admission, and discharge assessment periods and the incidence of new and significant worsening of existing syndromes at admission and discharge. DESIGN: Prospective cohort study. SETTING: Three acute care hospitals in Brisbane, Australia. PARTICIPANTS: Five hundred seventy-seven general medical patients aged 70 and older admitted to the hospital. MEASUREMENTS: Prevalence of syndromes in the premorbid (or preadmission for falls), admission, and discharge periods; incidence of new syndromes at admission and discharge; and significant worsening of existing syndromes at admission and discharge. RESULTS: The most frequently reported premorbid syndromes were bladder incontinence (44%), impairment in any activity of daily living (ADL) (42%). A high proportion (42%) experienced at least one fall in the 90 days before admission. Two-thirds of the participants experienced between one and five syndromes (cognitive impairment, dependence in any ADL item, bladder and bowel incontinence, pressure ulcer) before, at admission, and at discharge. A majority experienced one or two syndromes during the premorbid (49.4%), admission (57.0%), or discharge (49.0%) assessment period.The syndromes with a higher incidence of significant worsening at discharge (out of the proportion with the syndrome present premorbidly) were ADL limitation (33%), cognitive impairment (9%), and bladder incontinence (8%). Of the syndromes examined at discharge, a higher proportion of patients experienced the following new syndromes at discharge (absent premorbidly): ADL limitation (22%); and bladder incontinence (13%). CONCLUSION: Geriatric syndromes were highly prevalent. Many patients did not return to their premorbid function and acquired new syndromes.

Defences in medical negligence : to what extent has tort law reform in Australia limited the liability of health professionals?

Tort law reform has resulted in legislation being passed by all Australian jurisdictions in the past decade implementing the recommendations contained in the Ipp Report. The report was in response to a perceived crisis in medical indemnity insurance. The objective was to restrict and limit liability in negligence actions. This paper will consider to what extent the reforms have impacted on the liability of health professionals in medical negligence actions. After an analysis of the legislation, it will be argued in this paper that while there has been some limitation and restriction, courts have generally interpreted the civil liability reforms in compliance with the common law. It has been the impact of statutory limits on the assessment of damages through thresholds and caps which has limited the liability of health professionals in medical negligence actions.

Human Information behavior (introduction to special issue)

Information behavior studies are a growing body of research that highlights the importance of information for everyone in the information age. This e-book presents an international and diverse range of studies and insights into the current state of theories and models of information behavior. There is an emphasis on the socialpersonalhuman dimensions of information seeking using social science methods and theoretical frameworks. The studies particularly draw on the methods and theories of anthropology, sociology and psychology to produce interpretations of the way in which information is experienced in the lives of individuals working as critical care nurses in a medical environment, the information seeking behavior of the visually impaired, the social interactions within knitting circles in public libraries, and attempts to apply information behavior theory to the design of information solutions. Collectively the papers contribute more generally to our understanding of information behavior theory and models, including the medical and retrieval contexts.

Applications of medical image processing in the diagnosis and treatment of spinal deformity

In Chapter 10, Adam and Dougherty describe the application of medical image processing to the assessment and treatment of spinal deformity, with a focus on the surgical treatment of idiopathic scoliosis. The natural history of spinal deformity and current approaches to surgical and non-surgical treatment are briefly described, followed by an overview of current clinically used imaging modalities. The key metrics currently used to assess the severity and progression of spinal deformities from medical images are presented, followed by a discussion of the errors and uncertainties involved in manual measurements. This provides the context for an analysis of automated and semi-automated image processing approaches to measure spinal curve shape and severity in two and three dimensions.

Bayesian mixtures for modelling complex medical data : a case study in Parkinson’s disease

Mixture models are a flexible tool for unsupervised clustering that have found popularity in a vast array of research areas. In studies of medicine, the use of mixtures holds the potential to greatly enhance our understanding of patient responses through the identification of clinically meaningful clusters that, given the complexity of many data sources, may otherwise by intangible. Furthermore, when developed in the Bayesian framework, mixture models provide a natural means for capturing and propagating uncertainty in different aspects of a clustering solution, arguably resulting in richer analyses of the population under study. This thesis aims to investigate the use of Bayesian mixture models in analysing varied and detailed sources of patient information collected in the study of complex disease. The first aim of this thesis is to showcase the flexibility of mixture models in modelling markedly different types of data. In particular, we examine three common variants on the mixture model, namely, finite mixtures, Dirichlet Process mixtures and hidden Markov models. Beyond the development and application of these models to different sources of data, this thesis also focuses on modelling different aspects relating to uncertainty in clustering. Examples of clustering uncertainty considered are uncertainty in a patient’s true cluster membership and accounting for uncertainty in the true number of clusters present. Finally, this thesis aims to address and propose solutions to the task of comparing clustering solutions, whether this be comparing patients or observations assigned to different subgroups or comparing clustering solutions over multiple datasets. To address these aims, we consider a case study in Parkinson’s disease (PD), a complex and commonly diagnosed neurodegenerative disorder. In particular, two commonly collected sources of patient information are considered. The first source of data are on symptoms associated with PD, recorded using the Unified Parkinson’s Disease Rating Scale (UPDRS) and constitutes the first half of this thesis. The second half of this thesis is dedicated to the analysis of microelectrode recordings collected during Deep Brain Stimulation (DBS), a popular palliative treatment for advanced PD. Analysis of this second source of data centers on the problems of unsupervised detection and sorting of action potentials or "spikes" in recordings of multiple cell activity, providing valuable information on real time neural activity in the brain.