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.

Temporal tracking of mineralization and transcriptional developments of shell formation during the early life history of pearl oyster Pinctada maxima

Molluscan larval ontogeny is a highly conserved process comprising three principal developmental stages. A characteristic unique to each of these stages is shell design, termed prodissoconch I, prodissoconch II and dissoconch. These shells vary in morphology, mineralogy and microstructure. The discrete temporal transitions in shell biomineralization between these larval stages are utilized in this study to investigate transcriptional involvement in several distinct biomineralization events. Scanning electron microscopy and X-ray diffraction analysis of P. maxima larvae and juveniles collected throughout post-embryonic ontogenesis, document the mineralogy and microstructure of each shelled stage as well as establishing a timeline for transitions in biomineralization. P. maxima larval samples most representative of these biomineralization distinctions and transitions were analyzed for differential gene expression on the microarray platform PmaxArray 1.0. A number of transcripts are reported as differentially expressed in correlation to the mineralization events of P. maxima larval ontogeny. Some of those isolated are known shell matrix genes while others are novel; these are discussed in relation to potential shell formation roles. This interdisciplinary investigation has linked the shell developments of P. maxima larval ontogeny with corresponding gene expression profiles, furthering the elucidation of shell biomineralization.

The life-cycle of the fashion garment and the role of Australian mass market designers

This paper uses the lens of life-cycle thinking to discuss recent developments in the Australian mass market fashion industry, and to explore the opportunities and barriers to implementing lifecycle thinking within mass market design processes. Life-cycle analysis is a quantitative tool used to assess the environmental impact of a material or product. However the underlying thinking of life-cycle analysis can also be employed more generally, enabling a designer to assess their processes and design decisions for sustainability. A fashion designer employing life cycle thinking would consider every stage in the life of a garment from fibre and textiles through to consumer use, to eventual disposal and beyond disposal to reuse and later disassembly for fibre recycling. Although life-cycle thinking is rarely considered in the design processes of the fast-paced, price-driven mass market, this paper explores its potential and suggests ways in which it could be implemented.

Sacred cows and crashing boars : ethno-religious minorities and the politics of online representation in Malaysia

Starting with the incident now known as the Cow’s Head Protest, this article traces and unpacks the events, techniques, and conditions surrounding the representation of ethno-religious minorities in Malaysia. The author suggests that the Malaysian Indians’ struggle to correct the dominant reading of their community as an impoverished and humbled underclass is a disruption of the dominant cultural order in Malaysia. It is also among the key events to have has set in motion a set of dynamics—the visual turn—introduced by new media into the politics of ethno-communal representation in Malaysia. Believing that this situation requires urgent examination the author attempts to outline the problematics of the task.

Disputes in Everyday Life : Social and Moral Orders of Children and Young People

"The research presented in this volume has been undertaken in a range of settings and across ages, to display the rich, varied, and complex aspects of children and young people's everyday lives. The papers contribute to understanding children's disputes, framed as forms of social practice, by closely examining children's talk and interaction in disputes to offer insight into how they arrange their social lives within the context of school, home, neighborhood, correctional, and cafe settings. As such, this volume contributes to an emerging body of edited volumes that investigate children and young people's everyday interactions (Cromdal, 2009; Cromdal & Tholander, in press; Gardner & Forrester, 2010; Goodwin & Kyratzis, 2007; Hutchby & Moran-Ellis, 1998). Each paper has been peer reviewed, by respected researchers of the field, in some cases authors of this volume, and revised. We also thank Charlotte Cobb-Moore who so ably assisted in the final preparation of the manuscripts."---publisher website

Introduction : disputes in everyday life – Social and moral orders of children and young people

Volume 15 of Sociological Studies of Children and Youth (SSYC) presents a rich description of children’s and young people’s disputes. Children and young people live and experience their youth in a variety of contexts, settings and situations in contemporary society, and the studies discussed in this volume draw on empirical data to investigate the interactional procedures used by children and young people as disputes arise in varying contexts of their everyday life. The aim of this volume is to extend current understandings of on children’s disputes by examining how, in the varying arenas and social worlds of children and young people, matters of ownership, alignment and social and moral order are always at play. Applying a sociological perspective, the research papers in this special volume show that disputes can offer analytic opportunities to examine, and make visible typically unseen social and moral orders. This consideration provides rich accounts of dispute practices within social and institutional contexts.

Prevalence and prognostic significance of secondary lymphedema following breast cancer

Background The adverse consequences of lymphedema following breast cancer in relation to physical function and quality of life are clear; however, its potential relationship with survival has not been investigated. Our purpose was to determine the prevalence of lymphedema and associated upper-body symptoms at 6 years following breast cancer and to examine the prognostic significance of lymphedema with respect to overall 6-year survival (OS). Methods and Results A population-based sample of Australian women (n=287) diagnosed with invasive, unilateral breast cancer was followed for a median of 6.6 years and prospectively assessed for lymphedema (using bioimpedance spectroscopy [BIS], sum of arm circumferences [SOAC], and self-reported arm swelling), a range of upper-body symptoms, and vital status. OS was measured from date of diagnosis to date of death or last follow-up. Kaplan-Meier methods were used to calculate OS and Cox proportional hazards models quantified the risk associated with lymphedema. Approximately 45% of women had reported at least one moderate to extreme symptom at 6.6 years postdiagnosis, while 34% had shown clinical evidence of lymphedema, and 48% reported arm swelling at least once since baseline assessment. A total of 27 (9.4%) women died during the follow-up period, and lymphedema, diagnosed by BIS or SOAC between 6–18 months postdiagnosis, predicted mortality (BIS: HR=2.5; 95% CI: 0.9, 6.8, p=0.08; SOAC: 3.0; 95% CI: 1.1, 8.7, p=0.04). There was no association (HR=1.2; 95% CI: 0.5, 2.6, p=0.68) between self-reported arm swelling and OS. Conclusions These findings suggest that lymphedema may influence survival following breast cancer treatment and warrant further investigation in other cancer cohorts and explication of a potential underlying biology.

Assessing the impact of a food supplement on the nutritional status and body composition of HIV-infected Zambian women on ARVs

Background Zambia is a sub-Saharan country with one of the highest prevalence rates of HIV, currently estimated at 14%. Poor nutritional status due to both protein-energy and micronutrient malnutrition has worsened this situation. In an attempt to address this combined problem, the government has instigated a number of strategies, including the provision of antiretroviral (ARV) treatment coupled with the promotion of good nutrition. High-energy protein supplement (HEPS) is particularly promoted; however, the impact of this food supplement on the nutritional status of people living with HIV/AIDS (PLHA) beyond weight gain has not been assessed. Techniques for the assessment of nutritional status utilising objective measures of body composition are not commonly available in Zambia. The aim of this study is therefore to assess the impact of a food supplement on nutritional status using a comprehensive anthropometric protocol including measures of skinfold thickness and circumferences, plus the criterion deuterium dilution technique to assess total body water (TBW) and derive fat-free mass (FFM) and fat mass (FM). Methods/Design This community-based controlled and longitudinal study aims to recruit 200 HIV-infected females commencing ARV treatment at two clinics in Lusaka, Zambia. Data will be collected at four time points: baseline, 4-month, 8-month and 12-month follow-up visits. Outcome measures to be assessed include body height and weight, body mass index (BMI), body composition, CD4, viral load and micronutrient status. Discussion This protocol describes a study that will provide a longitudinal assessment of the impact of a food supplement on the nutritional status of HIV-infected females initiating ARVs using a range of anthropometric and body composition assessment techniques.

Challenges for researchers investigating contraceptive use and pregnancy intentions of young women living in urban and rural Australia : face-to-face discussions to increase participation in a web-based survey

Background: It is imperative to understand how to engage young women in research about issues that are important to them. There is limited reliable data on how young women access contraception in Australia especially in rural areas where services may be less available. Objective: This paper identifies the challenges involved in engaging young Australian women aged 18-23 years to participate in a web-based survey on contraception and pregnancy and ensure their ongoing commitment to follow-up web-based surveys. Methods: A group of young women, aged 18-23 years and living in urban and rural New South Wales, Australia, were recruited to participate in face-to-face discussions using several methods of recruitment: direct contact (face-to-face, telephone or email)and snowball sampling by potential participants inviting their friends. All discussions were transcribed verbatim and analyzed using thematic analysis. Results: Twenty young women participated (urban, n=10: mean age 21.6 years; rural, n=10: 20.0 years) and all used computers or smart phones to access the internet on a daily basis. All participants were concerned about the cost of internet access and utilized free access to social media on their mobile phones. Their willingness to participate in a web-based survey was dependent on incentives with a preference for small financial rewards. Most participants were concerned about their personal details and survey responses remaining confidential and secure. The most appropriate survey would take up to 15 minutes to complete, be a mix of short and long questions and eye-catching with bright colours. Questions on the sensitive topics of sexual activity, contraception and pregnancy were acceptable if they could respond with “I prefer not to answer”. Conclusions: There are demographic, participation and survey design challenges in engaging young women in a web-based survey. Based on our findings, future research efforts are needed to understand the full extent of the role social media and incentives play in the decision of young women to participate in web-based research.

The relationship between quality of work life and turnover intention of primary health care nurses in Saudi Arabia

Background Quality of work life (QWL) has been found to influence the commitment of health professionals including nurses. However, reliable information on the QWL and turnover intention of primary health care (PHC) nurses is limited. The aim of this study was to examine the relationship between QWL and turnover intention of PHC nurses in Saudi Arabia. Methods A cross-sectional survey was used in this study. Data were collected using Brooks’ survey of Quality of Nursing Work life (QNWL), the Anticipated Turnover Scale and demographic data questions. A total of 508 PHC nurses in the Jazan region, Saudi Arabia completed the questionnaire (RR = 87%). Descriptive statistics, t-test, ANOVA, General Linear Model (GLM) univariate analysis, standard multiple regression (SMR), and hierarchical multiple regression (HMR) were applied for analysis using SPSS v17 for Windows. Results Findings suggested that the respondents were dissatisfied with their work life, with almost 40% indicating a turnover intention from their current PHC centres. Turnover intention was significantly related to QWL. Using SMR, 26% of the variance in turnover intention was explained by the QWL, p < 0.001, with R² = .263. Further analysis using HMR found that the total variance explained by the model as a whole (demographics and QWL) was 32.1%, p < 0.001. QWL explained an additional 19% of the variance in turnover intention, after controlling for demographic variables. Conclusions Creating and maintaining a healthy work life for PHC nurses is very important to improve their work satisfaction, reduce turnover, enhance productivity and improve nursing care outcomes.

Socioeconomic inequalities in cardiovascular mortality and the role of childhood socioeconomic conditions and adulthood risk factors : a prospective cohort study with 17-years of follow up

Background The mechanisms underlying socioeconomic inequalities in mortality from cardiovascular diseases (CVD) are largely unknown. We studied the contribution of childhood socioeconomic conditions and adulthood risk factors to inequalities in CVD mortality in adulthood. Methods The prospective GLOBE study was carried out in the Netherlands, with baseline data from 1991, and linked with the cause of death register in 2007. At baseline, participants reported on adulthood socioeconomic position (SEP) (own educational level), childhood socioeconomic conditions (occupational level of respondent’s father), and a broad range of adulthood risk factors (health behaviours, material circumstances, psychosocial factors). This present study is based on 5,395 men and 6,306 women, and the data were analysed using Cox regression models and hazard ratios (HR). Results A low adulthood SEP was associated with increased CVD mortality for men (HR 1.84; 95% CI: 1.41-2.39) and women (HR 1.80; 95%CI: 1.04-3.10). Those with poorer childhood socioeconomic conditions were more likely to die from CVD in adulthood, but this reached statistical significance only among men with the poorest childhood socioeconomic circumstances. About half of the investigated adulthood risk factors showed significant associations with CVD mortality among both men and women, namely renting a house, experiencing financial problems, smoking, physical activity and marital status. Alcohol consumption and BMI showed a U-shaped relationship with CVD mortality among women, with the risk being significantly greater for both abstainers and heavy drinkers, and among women who were underweight or obese. Among men, being single or divorced and using sleep/anxiety drugs increased the risk of CVD mortality. In explanatory models, the largest contributor to adulthood CVD inequalities were material conditions for men (42%; 95% CI: −73 to −20) and behavioural factors for women (55%; 95% CI: -191 to −28). Simultaneous adjustment for adulthood risk factors and childhood socioeconomic conditions attenuated the HR for the lowest adulthood SEP to 1.34 (95% CI: 0.99-1.82) for men and 1.19 (95% CI: 0.65-2.15) for women. Conclusions Adulthood material, behavioural and psychosocial factors played a major role in the explanation of adulthood SEP inequalities in CVD mortality. Childhood socioeconomic circumstances made a modest contribution, mainly via their association with adulthood risk factors. Policies and interventions to reduce health inequalities are likely to be most effective when considering the influence of socioeconomic circumstances across the entire life course and in particular, poor material conditions and unhealthy behaviours in adulthood.

Effects of family environment on negative symptoms and quality of life of psychotic patients

This study tested the hypothesis that negative symptoms and quality of life for patients with functional psychoses are associated with family environment. Fifty-seven first-admission patients with functional psychoses were assessed at hospital admission for severity of psychopathology and premorbid adjustment. Relatives residing with patients rated the family environment at admission and one month after discharge on the Family Environment Scale. Patients made the same ratings after discharge. Six months later, patients were reassessed on severity of psychopathology, negative symptoms, and quality of life. Multiple regression analyses showed that higher levels of positive emotional expressiveness in the family predicted milder and fewer negative symptoms and better quality of life at follow-up. The prediction was statistically independent of the initial severity of psychopathology or premorbid adjustment