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.

Apoptosis-related genes confer resistance to Fusarium wilt in transgenic ‘Lady Finger’ bananas

Fusarium wilt, caused by Fusarium oxysporum f. sp. cubense (Foc), is one of the most devastating diseases of banana (Musa spp.). Apart from resistant cultivars, there are no effective control measures for the disease. We investigated whether the transgenic expression of apoptosis-inhibition related genes in banana could be used to confer disease resistance. Embryogenic cell suspensions of the banana cultivar, ‘Lady Finger’, were stably transformed with animal genes that negatively regulate apoptosis, namely Bcl-xL, Ced-9 and Bcl-2 3’ UTR, and independently transformed plant lines were regenerated for testing. Following a 12 week exposure to Foc race 1 in small-plant glasshouse bioassays, seven transgenic lines (2 x Bcl-xL, 3 x Ced-9 and 2 x Bcl-2 3’ UTR) showed significantly less internal and external disease symptoms than the wild-type susceptible ‘Lady Finger’ banana plants used as positive controls. Of these, one Bcl-2 3’ UTR line showed resistance that was equivalent to that of wild-type Cavendish bananas that were included as resistant negative controls. Further, the resistance of this line continued for 23 weeks post-inoculation at which time the experiment was terminated. Using TUNEL assays, Foc race 1 was shown to induce apoptosis-like features in the roots of wild-type ‘Lady Finger’ plants consistent with a necrotrophic phase in the lifecycle of this pathogen. This was further supported by the observed reduction of these effects in the roots of the resistant Bcl-2 3’ UTR transgenic line. This is the first report on the generation of transgenic banana plants with resistance to Fusarium wilt.

Improving self-report measures of speeding

There is continuing debate regarding the psychometric properties of self-report measures of behaviour, particularly in road safety research. Practical considerations often preclude the use of objective assessments, leading to reliance on self-report measures. Acknowledging that such measures are likely to remain commonly used, this pilot project sought not to argue whether self-report measures should continue to be used, but to explore factors associated with how individuals respond to self-reported speeding measures. This paper reports preliminary findings from a qualitative study (focus groups and in-depth interviews) conducted with licensed drivers to explore the operational utility of self-reported speeding behaviour measures. Drawing upon concepts from the Theory of Planned Behaviour (TPB; Ajzen, 1991) and Agency Theory (Bandura, 2001), we identified four dimensions of self-reported speeding: including timeframe, speed zone, degree over the speed limit and, overall frequency of the behaviour, and examined participants’ perceptions of the operational utility of these factors. Issues related to comprehensibility, perceived accuracy, response format and layout were also explored. Results indicated that: heterogeneity in the timeframe of behavioural reflections suggests a need to provide a set timeframe for participants to consider when thinking about their previous speeding behaviour; response categories and formats should be carefully considered to ensure the most accurate representations of the frequency and degree of speeding are captured; the need to clearly articulate “low-level” speeding on self-report measures; and, that self-reports of speeding behaviour are typically context-irrelevant unless stipulated in the question. Limitations and directions for further research are discussed.

Intraoperative imaging in hallux valgus surgery

Background: This prospective study investigates the use of intraoperative fluoroscopy in 28 consecutive cases undergoing hallux valgus surgery. To our knowledge there have been no studies validating the use of intraoperative fluoroscopy in hallux valgus surgery. Methods: We performed a prospective investigation of 28 consecutive cases undergoing hallux valgus surgery. Fluoroscopic images were examined intraoperatively and any significant unforseen findings documented. A comparison was made between the fluoroscopic images and weight bearing films taken 6 weeks postoperatively to examine whether the intraoperative images are an accurate representation of the standard films obtained post-operatively. We excluded those patients that went on to have an Akin osteotomy. Results: There were no unforeseen intraoperative events that were revealed by the use of fluoroscopy and no surgical modifications were made as a result of the intraoperative images. The intraoperative films were found to be a reliable representation of the postoperative weight bearing films but a small increase in the hallux valgus angle was noted at six weeks and this is thought to be due to stretching of the medial soft tissue repair. Conclusions: Intraoperative fluoroscopy is a reliable technique. This study was performed at a centre which performs approximately 100 hallux valgus operations per year and that should be taken into consideration when reviewing our findings. We conclude that there may be a role for fluoroscopy for surgeons in the early stages of the surgical learning curve and for those that infrequently perform hallux valgus surgery. We cannot however recommend that fluoroscopy be used routinely in hallux valgus surgery.

Editoral : Correspondence regarding Anker SD, Koehler F, Abraham WT. Telemedicine and remote management of patients with heart failure. The Lancet 2011; 378: 731–39. Published 20 August 2011.

We read the excellent review of telemonitoring in chronic heart failure (CHF)1 with interest and commend the authors on the proposed classification of telemedical remote management systems according to the type of data transfer, decision ability and level of integration. However, several points require clarification in relation to our Cochrane review of telemonitoring and structured telephone support2. We included a study by Kielblock3. We corresponded directly with this study team specifically to find out whether or not this was a randomised study and were informed that it was a randomised trial, albeit by date of birth. We note in our review2 that this randomisation method carries a high risk of bias. Post-hoc metaanalyses without these data demonstrate no substantial change to the effect estimates for all cause mortality (original risk ratio (RR) 0·66 [95% CI 0·54, 0·81], p<0·0001; revised RR 0·72 [95% CI 0·57, 0·92], p=0·008), all-cause hospitalisation (original RR 0·91 [95% CI 0·84, 0·99] p=0·02; revised RR 0.92 [95% CI 0·84, 1·02], p=0·10 ) or CHF-related hospitalisation (original RR 0·79 [95% CI 0·67, 0·94] p=0·008; revised RR 0·75 [95% CI 0·60, 0·94] p=0·01). Secondly, we would classify the Tele-HF study4, 5 as structured telephone support, rather than telemonitoring. Again, inclusion of these data alters the point-estimate but not the overall result of the meta-analyses4. Finally, our review2 does not include invasive telemonitoring as the search strategy was not designed to capture these studies. Therefore direct comparison of our review findings with recent studies of these interventions is not recommended.

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?

The impact of completing a drink driving rehabilitation program on future drinking : the clients’ perspective

The paper explores the role and focus of drink driving rehabilitation programs. It is particularly concerned with whether programs that specifically focus on reducing driving after drinking also have a positive effect on clients’ levels of drinking. A sample of volunteering clients was recruited while they were participating in the Australian “Under the Limit” program and they were followed up at least three months post completion. Response rates were very low and the sample is assumed to reflect the views and outcomes of persons who felt positive about the program. Clients reported large and meaningful reductions in their drinking and in their drink driving. They also reported important moves towards action and change in their drinking habits. The findings deserve to be followed up given the fact that drink driving programs are generally of much shorter duration than alcohol focussed interventions. There is a need for further research in this area and for developing more effective recruitment strategies.

Neural interface systems : a new legal frontier?

In an age where digital innovation knows no boundaries, research in the area of brain-computer interface and other neural interface devices go where none have gone before. The possibilities are endless and as dreams become reality, the implications of these amazing developments should be considered. Some of these new devices have been created to correct or minimise the effects of disease or injury so the paper discusses some of the current research and development in the area, including neuroprosthetics. To assist researchers and academics in identifying some of the legal and ethical issues that might arise as a result of research and development of neural interface devices, using both non-invasive techniques and invasive procedures, the paper discusses a number of recent observations of authors in the field. The issue of enhancing human attributes by incorporating these new devices is also considered. Such enhancement may be regarded as freeing the mind from the constraints of the body, but there are legal and moral issues that researchers and academics would be well advised to contemplate as these new devices are developed and used. While different fact situation surround each of these new devices, and those that are yet to come, consideration of the legal and ethical landscape may assist researchers and academics in dealing effectively with matters that arise in these times of transition. Lawyers could seek to facilitate the resolution of the legal disputes that arise in this area of research and development within the existing judicial and legislative frameworks. Whether these frameworks will suffice, or will need to change in order to enable effective resolution, is a broader question to be explored.

Human-specific E. coli single nucleotide polymorphism (SNP) genotypes detected in a South-East Queensland waterway, Australia

The World Health Organization recommends that the majority of water monitoring laboratories in the world should test for E. coli daily since thermotolerant coliforms and E. coli are key indicators for risk assessment of recreational waters. Recently, we developed a new SNP method for typing E. coli strains, by which human-specific genotypes were identified. Here, we report the presence of these previously described specific SNP profiles in environmental water, sourced from the Coomera River, located on South East Queensland, Australia, over a period of two years. This study tested for the presence of human-specific E. coli to ascertain whether hydrologic and anthropogenic activity plays a key role in the pollution of the investigated watershed or whether the pollution is from other sources. We found six human-specific SNP profiles and one animal-specific SNP profile consistently across sampling sites and times. We have demonstrated that our SNP genotyping method is able to rapidly identify and characterise human- and animal-specific E. coli isolates in water sources.

An evaluation of the sustainability of agreements reached through mediations conducted by the dispute resolution centres of the Department of Justice and Attorney General, Queensland between 1999 to 2003

In 1990 the Dispute Resolution Centres Act, 1990 (Qld) (the Act) was passed by the Queensland Parliament. In the second reading speech for the Dispute Resolution Centres Bill on May 1990 the Hon Dean Wells stated that the proposed legislation would make mediation services available “in a non-coercive, voluntary forum where, with the help of trained mediators, the disputants will be assisted towards their own solutions to their disputes, thereby ensuring that the result is acceptable to the parties” (Hansard, 1990, 1718). It was recognised at that time that a method for resolving disputes was necessary for which “the conventional court system is not always equipped to provide lasting resolution” (Hansard, 1990, 1717). In particular, the lasting resolution of “disputes between people in continuing relationships” was seen as made possible through the new legislation; for example, “domestic disputes, disputes between employees, and neighbourhood disputes relating to such issues as overhanging tree branches, dividing fences, barking dogs, smoke, noise and other nuisances are occurring continually in the community” (Hansard, 1990, 1717). The key features of the proposed form of mediation in the Act were articulated as follows: “attendance of both parties at mediation sessions is voluntary; a party may withdraw at any time; mediation sessions will be conducted with as little formality and technicality as possible; the rules of evidence will not apply; any agreement reached is not enforceable in any court; although it could be made so if the parties chose to proceed that way; and the provisions of the Act do not affect any rights or remedies that a party to a dispute has apart from the Act” (Hansard, 1990, 1718). Since the introduction of the Act, the Alternative Dispute Resolution Branch of the Queensland Department of Justice and Attorney General has offered mediation services through, first the Community Justice Program (CJP), and then the Dispute Resolution Centres (DRCs) for a range of family, neighbourhood, workplace and community disputes. These services have mirrored those available through similar government agencies in other states such as the Community Justice Centres of NSW and the Victorian Dispute Resolution Centres. Since 1990, mediation has become one of the fastest growing forms of alternative dispute resolution (ADR). Sourdin has commented that "In addition to the growth in court-based and community-based dispute resolution schemes, ADR has been institutionalised and has grown within Australia and overseas” (2005, 14). In Australia, in particular, the development of ADR service provision “has been assisted by the creation and growth of professional organisations such as the Leading Edge Alternative Dispute Resolvers (LEADR), the Australian Commercial Dispute Centres (ACDC), Australian Disputes Resolution Association (ADRA), Conflict Resolution Network, and the Institute of Arbitrators and Mediators Australia (IAMA)” (Sourdin, 2005, 14). The increased emphasis on the use of ADR within education contexts (particularly secondary and tertiary contexts) has “also led to an increasing acceptance and understanding of (ADR) processes” (Sourdin, 2005, 14). Proponents of the mediation process, in particular, argue that much of its success derives from the inherent flexibility and creativity of the agreements reached through the mediation process and that it is a relatively low cost option in many cases (Menkel-Meadow, 1997, 417). It is also accepted that one of the main reasons for the success of mediation can be attributed to the high level of participation by the parties involved and thus creating a sense of ownership of, and commitment to, the terms of the agreement (Boulle, 2005, 65). These characteristics are associated with some of the core values of mediation, particularly as practised in community-based models as found at the DRCs. These core values include voluntary participation, party self-determination and party empowerment (Boulle, 2005, 65). For this reason mediation is argued as being an effective approach to resolving disputes, that creates a lasting resolution of the issues. Evaluation of the mediation process, particularly in the context of the growth of ADR, has been an important aspect of the development of the process (Sourdin, 2008). Writing in 2005 for example, Boulle, states that “although there is a constant refrain for more research into mediation practice, there has been a not insignificant amount of mediation measurement, both in Australia and overseas” (Boulle, 2005, 575). The positive claims of mediation have been supported to a significant degree by evaluations of the efficiency and effectiveness of the process. A common indicator of the effectiveness of mediation is the settlement rate achieved. High settlement rates for mediated disputes have been found for Australia (Altobelli, 2003) and internationally (Alexander, 2003). Boulle notes that mediation agreement rates claimed by service providers range from 55% to 92% (Boulle, 2005, 590). The annual reports for the Alternative Dispute Resolution Branch of the Queensland Department of Justice and Attorney-General considered prior to the commencement of this study indicated generally achievement of an approximate settlement figure of 86% by the Queensland Dispute Resolution Centres. More recently, the 2008-2009 annual report states that of the 2291 civil dispute mediated in 2007-2008, 86% reached an agreement. Further, of the 2693 civil disputes mediated in 2008-2009, 73% reached an agreement. These results are noted in the report as indicating “the effectiveness of mediation in resolving disputes” and as reflecting “the high level of agreement achieved for voluntary mediations” (Annual Report, 2008-2009, online). Whilst the settlement rates for the DRCs are strong, parties are rarely contacted for long term follow-up to assess whether agreements reached during mediation lasted to the satisfaction of each party. It has certainly been the case that the Dispute Resolution Centres of Queensland have not been resourced to conduct long-term follow-up assessments of mediation agreements. As Wade notes, "it is very difficult to compare "success" rates” and whilst “politicians want the comparison studies (they) usually do not want the delay and expense of accurate studies" (1998, 114). To date, therefore, it is fair to say that the efficiency of the mediation process has been evaluated but not necessarily its effectiveness. Rather, the practice at the Queensland DRCs has been to evaluate the quality of mediation service provision and of the practice of the mediation process. This has occurred, for example, through follow-up surveys of parties' satisfaction rates with the mediation service. In most other respects it is fair to say that the Centres have relied on the high settlement rates of the mediation process as a sign of the effectiveness of mediation (Annual Reports 1991 - 2010). Research of the mediation literature conducted for the purpose of this thesis has also indicated that there is little evaluative literature that provides an in-depth analysis and assessment of the longevity of mediated agreements. Instead evaluative studies of mediation tend to assess how mediation is conducted, or compare mediation with other conflict resolution options, or assess the agreement rate of mediations, including parties' levels of satisfaction with the service provision of the dispute resolution service provider (Boulle, 2005, Chapter 16).

Comparing the medium-term effects of exercise or dietary restriction on appetite regulation and compensatory responses

Previous studies have shown that exercise (Ex) interventions create a stronger coupling between energy intake (EI) and energy expenditure (EE) leading to increased homeostasis of the energy-balance (EB) regulatory system compared to a diet intervention where an un-coupling between EI and EE occurs. The benefits of weight loss from Ex and diet interventions greatly depend on compensatory responses. The present study investigated an 8-week medium-term Ex and diet intervention program (Ex intervention comprised of 500kcal EE five days per week over four weeks at 65-75% maximal heart rate, whereas the diet intervention comprised of a 500kcal decrease in EI five days per week over four weeks) and its effects on compensatory responses and appetite regulation among healthy individuals using a between- and within-subjects design. Effects of an acute dietary manipulation on appetite and compensatory behaviours and whether a diet and/or Ex intervention pre-disposes individuals to disturbances in EB homeostasis were tested. Energy intake at an ad libitum lunch test meal after a breakfast high- and low-energy pre-load (the high energy pre-load contained 556kcal and the low energy pre-load contained 239kcal) were measured at the Baseline (Weeks -4 to 0) and Intervention (Weeks 0 to 4) phases in 13 healthy volunteers (three males and ten females; mean age 35 years [sd + 9] and mean BMI 25 kg/m2 [sd + 3.8]) [participants in each group included Ex=7, diet=5 (one female in the diet group dropped out midway), thus, 12 participants completed the study]. At Weeks -4, 0 and 4, visual analogue scales (VAS) were used to assess hunger and satiety and liking and wanting (L&W) for nutrient and taste preferences using a computer-based system (E-Prime v1.1.4). Ad libitum test meal EI was consistently lower after the HE pre-load compared to the LE pre-load. However, this was not consistent during the diet intervention however. A pre-load x group interaction on ad libitum test meal EI revealed that during the intervention phase the Ex group showed an improved sensitivity to detect the energy content between the two pre-loads and improved compensation for the ad libitum test meal whereas the diet group’s ability to differentiate between the two pre-loads decreased and showed poorer compensation (F[1,10]=2.88, p-value not significant). This study supports previous findings of the effect Ex and diet interventions have on appetite and compensatory responses; Ex increases and diet decreases energy balance sensitivity.

“More tick-the-box”: the challenge of promoting interdisciplinary learning in the middle years through the Australian history curriculum

The Australian Curriculum marks national reforms in social science education, first with the return to the disciplines of history and geography and second, through a new approach to interdisciplinary learning. This paper raises the question of whether the promise of interdisciplinary learning can be realised in the middle years of schooling if teachers have to teach history as a discipline rather than within an over-arching integrated curriculum framework. The paper explores the national blueprints and considers the national history curriculum in light of theories of teachers’ knowledge and middle school education. Evidence from teacher interviews indicates that historical understanding can be achieved through integrated frameworks to meet the goals of middle schooling.

Feedback information and consumer motivation : the moderation role of positive and negative reference values in self-regulation

Marketers spend considerable resources to motivate people to consume their products and services as a means of goal attainment (Bagozzi and Dholakia, 1999). Why people increase, decrease, or stop consuming some products is based largely on how well they perceive they are doing in pursuit of their goals (Carver and Scheier, 1992). Yet despite the importance for marketers in understanding how current performance influences a consumer’s future efforts, this topic has received little attention in marketing research. Goal researchers generally agree that feedback about how well or how poorly people are doing in achieving their goals affects their motivation (Bandura and Cervone, 1986; Locke and Latham, 1990). Yet there is less agreement about whether positive and negative performance feedback increases or decreases future effort (Locke and Latham, 1990). For instance, while a customer of a gym might cancel his membership after receiving negative feedback about his fitness, the same negative feedback might cause another customer to visit the gym more often to achieve better results. A similar logic can apply to many products and services from the use of cosmetics to investing in mutual funds. The present research offers managers key insights into how to engage customers and keep them motivated. Given that connecting customers with the company is a top research priority for managers (Marketing Science Institute, 2006), this article provides suggestions for performance metrics including four questions that managers can use to apply the findings.

Using reflective clothing to enhance the conspicuity of bicyclists at night

Bicycling at night is more dangerous than in the daytime and poor conspicuity is likely to be a contributing factor. The use of reflective markings on a pedestrian’s major joints to facilitate the perception of biological motion has been shown to greatly enhance pedestrian conspicuity at night, but few corresponding data exist for bicyclists. Twelve younger and twelve older participants drove around a closed-road circuit at night and indicated when they first saw a bicyclist who wore black clothing either alone, or together with a reflective bicycling vest, or a vest plus ankle and knee reflectors. The bicyclist pedaled in place on a bicycle that had either a static or flashing light, or no light on the handlebars. Bicyclist clothing significantly affected conspicuity; drivers responded to bicyclists wearing the vest plus ankle and knee reflectors at significantly longer distances than when the bicyclist wore the vest alone or black clothing without a vest. Older drivers responded to bicyclists less often and at shorter distances than younger drivers. The presence of a bicycle light, whether static or flashing, did not enhance the conspicuity of the bicyclist; this may result in bicyclists who use a bicycle light being overconfident of their own conspicuity at night. The implications of our findings are that ankle and knee markings are a simple and very effective approach for enhancing bicyclist conspicuity at night.

Livable housing design: Is it likely to work?

The need for accessible housing in Australia is acute. Both government and the community service sector recognise the importance of well designed accessible housing to optimise the integration of older people and people with disability, to encourage a prudent use of scarce health and community services and to enhance the liveability of our cities. In 2010, the housing industry, negotiated with the Australian Government and community representatives to adopt a nationally consistent voluntary code (Livable Housing Design) and a strategy to provide minimal level of accessibility in all new housing by 2020. Evidence from the implementation of such programs in the United Kingdom and USA, however, serves to question whether this aspirational goal can be achieved through voluntary codes. Minimal demand at the point of new sale, and problems in the production of housing to the required standards have raised questions regarding the application of program principles in the context of a voluntary code. In addressing the latter issue, this paper presents early findings from the analysis of qualitative interviews conducted with developers, builders and designers in various housing contexts. It identifies their “logics in use” in the production of housing in response to Livable Housing Design’s voluntary code and indicates factors that are likely to assist and impede the attainment of the 2020 aspirational goal.