Advance Directives Refusing Treatment as an Expression of Autonomy: Do the Courts Practise What They Preach?

The principle of autonomy is at the heart of the right of a competent individual to make an advance directive that refuses life-sustaining medical treatment, and to have that directive complied with by medical professionals. That right is protected by both the common law and, to an extent, by legislation that has been enacted in the United Kingdom and many jurisdictions in Australia. The courts have a critical role in protecting that autonomy, both in those jurisdictions in which the common law continues to operate, and in those jurisdictions which are now governed by statute, and in which judicial determinations will need to be made about legislative provisions. The problem explored in this article is that while the judiciary espouses the importance of autonomy in its judgments, that rhetoric is frequently not reflected in the decisions that are reached. In the United Kingdom and Australia, there is a relatively small number of decisions that consider the validity and applicability of advance directives that refuse life-sustaining medical treatment. This article critically evaluates all of the publicly available decisions and concludes that there is cause for concern. In some cases, there has been an unprincipled evolution of common law principles, while in others there has been inappropriate adjudication through operational irregularities or failure to apply correct legal principles. Further, some decisions appear to be based on a strained interpretation of the facts of the case. The apparent reluctance of some members of the judiciary to give effect to advance directives that refuse treatment is also evidenced by the language used in the judgments. While the focus of this article is on common law decisions, reference will also be made to legislation and the extent to which it has addressed some of the problems identified in this article.

Behavioural biases and information disclosure laws relating to residential property sales : narrowing the gap between existing laws and calls for future reforms

Market failures involving the sale of complex merchandise, such as residential property, financial products and credit, have principally been attributed to information asymmetries. Existing legislative and regulatory responses were developed having regard to consumer protection policies based on traditional economic theories that focus on the notion of the ‘rational consumer’. Governmental responses therefore seek to impose disclosure obligations on sellers of complex goods or products to ensure that consumers have sufficient information upon which to make a decision. Emergent research, based on behavioural economics, challenges traditional ideas and instead focuses on the actual behaviour of consumers. This approach suggests that consumers as a whole do not necessarily benefit from mandatory disclosure because some, if not most, consumers do not pay attention to the disclosed information before they make a decision to purchase. The need for consumer policies to take consumer characteristics and behaviour into account is being increasingly recognised by governments, and most recently in the policy framework suggested by the Australian Productivity Commission

The Federal circuit in Bilski : the machine-or-transformation test

In a much anticipated judgment, the Federal Circuit has sought to clarify the standards applicable in determining whether a claimed method constitutes patent-eligible subject matter. In Bilski, the Federal Circuit identified a test to determine whether a patentee has made claims that pre-empt the use of a fundamental principle or an abstract idea or whether those claims cover only a particular application of a fundamental principle or abstract idea. It held that the sole test for determining subject matter eligibility for a claimed process under § 101 is that: (1) it is tied to a particular machine or apparatus, or (2) it transforms a particular article into a different state or thing. The court termed this the “machine-or-transformation test.” In so doing it overruled its earlier State Street decision to the extent that it deemed its “useful, tangible and concrete result” test as inadequate to determine whether an alleged invention recites patent-eligible subject matter.

Lifting the lifegiving dollar : case samples of creative practice in health and medical research philanthropy

This study aims to stimulate thought, debate and action for change on this question of more vigorous philanthropic funding of Australian health and medical research (HMR). It sharpens the argument with some facts and ideas about HMR funding from overseas sources. It also reports informed opinions from those working, giving and innovating in this area. It pinpoints the range of attitudes to HMR giving, both positive and negative. The study includes some aspects of Government funding as part of the equation, viewing Government as major HMR givers, with particular ability to partner, leverage and create incentives. Stimulating new philanthropy takes active outreach. The opportunity to build more dialogue between the HMR industry and the wider community is timely given the ‘licence to practice’ issues and questioned trust that applies currently somewhat both to science and to the charitable sector. This interest in improving HMR philanthropy also coincides with the launch last year by the Federal Government of Nonprofit Australia Limited (NAL), a group currently assessing infrastructure improvements to the charitable sector. History suggests no one will create this change if Research Australia does not. However, interest in change exists in various quarters. For Research Australia to successfully change the culture of Australian HMR giving, the process will drive the outcomes. Obviously stakeholder buy-in and partners will be needed and the ultimate blueprint for greater philanthropic HMR funding here will not be this document. Instead it will be the one that wears the handprint and ‘mindprint’ of the many architects and implementers interested in promoting HMR philanthropy, from philanthropists to nonprofit peaks to government policy arms. As the African proverb says, ‘If you want to go fast, go alone; but if you want to go far, go with others’.

Political theory and theoretical physics

This paper explains, somewhat along a Simmelian line, that political theory may produce practical and universal theories like those developed in theoretical physics. The reasoning behind this paper is to show that the Element of Democracy Theory may be true by way of comparing it to Einstein’s Special Relativity – specifically concerning the parameters of symmetry, unification, simplicity, and utility. These parameters are what make a theory in physics as meeting them not only fits with current knowledge, but also produces paths towards testing (application). As the Element of Democracy Theory meets these same parameters, it could settle the debate concerning the definition of democracy. This will be shown firstly by discussing why no one has yet achieved a universal definition of democracy; secondly by explaining the parameters chosen (as in why these and not others confirm or scuttle theories); and thirdly by comparing how Special Relativity and the Element of Democracy match the parameters.

Knowledge, attitudes and beliefs towards injury prevention : a population based telephone survey

Public knowledge and beliefs about injury prevention are currently poorly understood. A total of 1030 residents in the State of Queensland, Australia responded to questions about injury prevention in or around the home, on the roads, in or on the water, at work, deliberate injury, and responsibility for preventing deliberate injury allowing comparison with published injury prevalence data. Overall the youngest members of society were identified as being the most vulnerable to deliberate injury with young adults accounting for 59% of responses aligning with published data. However, younger adults failed to indicate an awareness of their own vulnerability to deliberate injury in alcohol environments even though 61% of older respondents were aware of this trend. Older respondents were the least inclined to agree that they could make a difference to their own safety in or around the home but were more inclined to agree that they could make a difference to their own safety at work. The results are discussed with a view to using improved awareness of public beliefs about injury to identify barriers to the uptake of injury prevention strategies (e.g. low perceived injury risk) as well as areas where injury prevention strategies may receive public support.

The land use and public transport accessibility index : phase two final report

The Urban Research Program (URP) was established in 2003 as strategic research and community engagement initiative of Griffith University. The strategic foci of the Urban Research Program are research and advocacy in an urban regional context. The Urban Research Program seeks to improve understanding of, and develop innovative responses to Australia's urban challenges and opportunities by providing training assistance. The authors aim to make the results of their research and advocacy work available as freely and widely as possible.

Withholding or withdrawing life-sustaining treatment from children

Difficult questions regarding the withholding or withdrawing of life-sustaining medical treatment can arise in relation to children (being those under 18 years old). This editorial considers some of the legal principles that are relevant in such cases in Australia, particularly Queensland.

Willingness to buy GM food products : the role of uncertainty orientation, consumer risk perceptions and information search in consumers from Australia

Genetically modified (GM) food products are the source of much controversy and in the context of consumer behaviour, the way in which consumers perceive such food products is of paramount importance both theoretically and practically. Despite this, relatively little research has focused on GM food products from a consumer perspective, and as such, this study seeks to better understand what effects consumer willingness to buy GM food products in Australian consumers.

Are organ donation communication decisions reasoned or reactive? A test of the utility of an augmented Theory of Planned Behaviour with the Prototype/Willingness Model

Objectives: To explore whether people's organ donation consent decisions occur via a reasoned and/or social reaction pathway. --------- Design: We examined prospectively students' and community members' decisions to register consent on a donor register and discuss organ donation wishes with family. --------- Method: Participants completed items assessing theory of planned behaviour (TPB; attitude, subjective norm, perceived behavioural control (PBC)), prototype/willingness model (PWM; donor prototype favourability/similarity, past behaviour), and proposed additional influences (moral norm, self-identity, recipient prototypes) for registering (N=339) and discussing (N=315) intentions/willingness. Participants self-reported their registering (N=177) and discussing (N=166) behaviour 1 month later. The utility of the (1) TPB, (2) PWM, (3) augmented TPB with PWM, and (4) augmented TPB with PWM and extensions was tested using structural equation modelling for registering and discussing intentions/willingness, and logistic regression for behaviour. --------- Results: While the TPB proved a more parsimonious model, fit indices suggested that the other proposed models offered viable options, explaining greater variance in communication intentions/willingness. The TPB, augmented TPB with PWM, and extended augmented TPB with PWM best explained registering and discussing decisions. The proposed and revised PWM also proved an adequate fit for discussing decisions. Respondents with stronger intentions (and PBC for registering) had a higher likelihood of registering and discussing. --------- Conclusions: People's decisions to communicate donation wishes may be better explained via a reasoned pathway (especially for registering); however, discussing involves more reactive elements. The role of moral norm, self-identity, and prototypes as influences predicting communication decisions were highlighted also.

Ethics on-the-run

Midwives are involved in a very dynamic profession. As they face their everyday tasks they encounter many different situations and a variety of people which results in a vast number of interactions. This narrative research project sought to identify some of the ‘ordinary’ encounters and interactions that midwives working in a hospital environment experience in their daily work and explore them from an ethical perspective. It found that many ethical decisions have to be made ‘on-the-run’, with no time to contemplate or decide what the best course of action might be. As ethics is embedded within every encounter a midwife has, it is essential that all midwives have an awareness and understanding of their own value systems, professional ethical codes and ethical principles that can act as guides when they have to make choices in these situations, which are frequently challenging.

The meaning of cancer for Australian Aboriginal women : changing the focus of cancer nursing

Aim: The purpose of the study was to explore why Aboriginal women participate in cancer screening programs but appear reluctant to following-up results, or accept medical advice about treatment. Methods: Interpretive ethnography, a qualitative methodology, was used to explore Aboriginal women’s perception of cancer, and the cultural context in which meaning was constructed and influenced treatment decision. Data collection, which occurred over two years, involved fieldwork, participant-observation, face-to-face interviews and focus groups, in two rural Aboriginal communities. Forty eight interviews were recorded from a cross section of the communities, including cancer survivors and patients, family members, health care providers and other women from the community. Results: Key findings were that Aboriginal women’s had a fearful and fatalistic attitude toward cancer, doubted the efficacy of treatment and carried an enduring ambivalence toward the authority of whiteman’s medicine. The women faced a dilemma of wanting access to cancer treatment options but feared entering hospital or clinics not attuned to their cultural needs. Conclusion: The findings highlight the need for a culture-centred approach that decentres the authority of conventional services and instead gives prominence to Aboriginal cultural values as a focal point in cancer control. It should be the responsibility of cancer nurses and others to engage with their local Aboriginal communities to build relationships that foster an exchange of learning about cultural differences that make a difference to how cancer control is practiced.

Building research capacity in the nursing workforce : the design and evaluation of the nurse researcher role

Objectives: The Nurse Researcher Project (NRP) was initiated to support development of a nursing research and evidence based practice culture in Cancer Care Services (CCS) in a large tertiary hospital in Australia. The position was established and evaluated to inform future directions in the organisation.---------- Background: The demand for quality cancer care has been expanding over the past decades. Nurses are well placed to make an impact on improving health outcomes of people affected by cancer. At the same time, there is a robust body of literature documenting the barriers to undertaking and utilising research by and for nurses and nursing. A number of strategies have been implemented to address these barriers including a range of staff researcher positions but there is scant attention to evaluating the outcomes of these strategies. The role of nurse researcher has been documented in the literature with the aim to provide support to nurses in the clinical setting. There is, to date, little information in relation to the design, implementation and evaluation of this role.---------- Design: The Donabedian’s model of program evaluation was used to implement and evaluate this initiative.---------- Methods: The ‘NRP’ outlined the steps needed to implement the nurse researcher role in a clinical setting. The steps involved the design of the role, planning for the support system for the role, and evaluation of outcomes of the role over two years.---------- Discussion: This paper proposes an innovative and feasible model to support clinical nursing research which would be relevant to a range of service areas.---------- Conclusion: Nurse researchers are able to play a crucial role in advancing nursing knowledge and facilitating evidence based practice, especially when placed to support a specialised team of nurses at a service level. This role can be implemented through appropriate planning of the position, building a support system and incorporating an evaluation plan.

A randomised controlled trial of a tele-based lifestyle intervention for colorectal cancer survivors ('CanChange') : Study protocol

Background Colorectal cancer survivors may suffer from a range of ongoing psychosocial and physical problems that negatively impact on quality of life. This paper presents the study protocol for a novel telephone-delivered intervention to improve lifestyle factors and health outcomes for colorectal cancer survivors. Methods/Design Approximately 350 recently diagnosed colorectal cancer survivors will be recruited through the Queensland Cancer Registry and randomised to the intervention or control condition. The intervention focuses on symptom management, lifestyle and psychosocial support to assist participants to make improvements in lifestyle factors (physical activity, healthy diet, weight management, and smoking cessation) and health outcomes. Participants will receive up to 11 telephone-delivered sessions over a 6 month period from a qualified health professional or 'health coach'. Data collection will occur at baseline (Time 1), post-intervention or six months follow-up (Time 2), and at 12 months follow-up for longer term effects (Time 3). Primary outcome measures will include physical activity, cancer-related fatigue and quality of life. A cost-effective analysis of the costs and outcomes for survivors in the intervention and control conditions will be conducted from the perspective of health care costs to the government. Discussion The study will provide valuable information about an innovative intervention to improve lifestyle factors and health outcomes for colorectal cancer survivors.

Physical and environmental determinants

This chapter describes physical and environmental determinants of the health of Australians, providing a background to the development of successful public health activity. Health determinants are the biomedical, genetic, behavioural, socio-economic and environmental factors that impact on health and wellbeing. These determinants can be influenced by interventions and by resources and systems (AIHW 2006). Many factors combine to affect the health of individuals and communities. People’s circumstances and the environment determine whether the population is healthy or not. Factors such as where people live, the state of their environment, genetics, their education level and income, and their relationships with friends and family, all are likely to impact on their health. The determinants of population health reflect the context of people’s lives; however, people are very unlikely to be able to control many of these determinants (WHO 2007). This chapter and Chapter 6 illustrate how various determinants can relate to, and influence other determinants, as well as health and wellbeing. We believe it is particularly important to provide an understanding of determinants and their relationship to health and illness in order to provide a structure in which a broader conceptualisation of health can be placed. Determinants of health do not exist in isolation from one another. More frequently they work together in a complex system. What is clear to anyone who works in public health is that many factors impact on the health and wellbeing of people. For example, in the next chapter we discuss factors such as living and working conditions, social support, ethnicity and class, income, housing, work stress and the impact of education on the length and quality of people’s lives. In 1974, the influential ‘Lalonde Report’ (Lalonde 1974) described key factors that impact on health status. These factors included lifestyle, environment, human biology and health services. Taking a population health approach builds on the Lalonde Report, and recognises that a range of factors, such as living and working conditions and the distribution of wealth in society, interact to determine the health status of a population. Tackling health determinants has great potential to reduce the burden of disease and promote the health of the general population. In summary, we understand very clearly now that health is determined by the complex interactions between individual characteristics, social and economic factors and physical environments; the entire range of factors that impact on health must be addressed if we are to make significant gains in population health, and focussing interventions on the health of the population or significant sub-populations can achieve important health gains. In 2007, the Australian Government included in the list of National Health Priority Areas the following health issues: cancer control, injury prevention and control, cardiovascular health, diabetes mellitus, mental health, asthma, and arthritis and musculoskeletal conditions. The National Health Priority Areas set the agenda for the Commonwealth, States and Territories, Local Governments and not-for-profit organisations to place attention on those areas considered to be the major foci for action. Many of these health issues are discussed in this chapter and the following chapter.