A national roll out of an insufficiently evaluated practice : how evidence based are our end-of-life care policies?

There has been increasing international efforts to ensure that health care policies are evidence based. One area where there is a lack of ‘effectiveness’ evidence is in the use of end-of-life care pathways (EOLCP) (1). Despite the lack of evidence supporting the efficacy of the EOCLP, their use has been endorsed in the recent national palliative care strategy document in the UK (2). In addition, a publication endorsed by the Australian Government (titled: Supporting Australians to live well at the End of Life- National Palliative Care Strategy 2010) (3), recommended a national roll out of EOLCP across all sectors (primary, acute and aged care) in Australia. According to this document, it is a measure of “appropriateness” and “effectiveness” for promoting quality end-of-life care.

Defending the sanctity of life principle : a reply to John Keown

This article is a response to Professor Keown’s criticism of my paper “Finding a Way Through the Ethical and Legal Maze: Withdrawal of Medical Treatment and Euthanasia” (2005) 13 (3) Medical Law Review 357. The article takes up and responds to a number of criticisms raised by Keown in an attempt to further the debate concerning the moral and legal status of withdrawing life-sustaining measures, its distinction from euthanasia, and the implications of the lawfulness of withdrawal for the principle of the sanctity of life.

A spoofing detection method for civilian L1 GPS and the E1-B Galileo Safety of Life service

This paper describes an effective method for signal-authentication and spoofing detection for civilian GNSS receivers using the GPS L1 C/A and the Galileo E1-B Safety of Life service. The paper discusses various spoofing attack profiles and how the proposed method is able to detect these attacks. This method is relatively low-cost and can be suitable for numerous mass-market applications. This paper is the subject of a pending patent.

The role of life friendly policies on employees’ work-life balance

Employees' inability to balance work and non-work related responsibilities have resulted in an increase in stress related illnesses. Historically, research into the relationship between work and non-work has primarily focused on work/family conflict, predominately investigating the impact of this conflict on parents, usually mothers. To date research has not sufficiently examined the management practices that enable all 'individuals' to achieve a 'balance' between work and life. This study explores the relationship between contemporary life friendly HR management policies and work/life balance for individuals as well as the effect of managerial support to the policies. Self-report questionnaire data from 1,241 men and women is analysed and discussed to enable organizations to consider the use of life friendly policies and thus create a convergence between the well-being of employees and the effectiveness of the organization.

Quality of life and genetics in men with prostate cancer

As family history has been established as a risk factor for prostate cancer, attempts have been made to isolate predisposing genetic variants that are related to hereditary prostate cancer. With many genetic variants still to be identified and investigated, it is not yet possible to fully understand the impact of genetic variants on prostate cancer development. The high survival rates among men with prostate cancer have meant that other issues, such as quality of life (QoL), have also become important. Through their effect on a person’s health, a range of inherited genetic variants may potentially influence QoL in men with prostate cancer, even prior to treatment. Until now, limited research has been conducted on the relationship between genetics and QoL. Thus, this study contributes to an emerging field by aiming to identify certain genetic variants related to the QoL found in men with prostate cancer. It is hoped that this study may lead to future research that will identify men who have an increased risk of a poor QoL following prostate cancer treatment, which will aid in developing treatments that are individually tailored to support them. Previous studies have established that genetic variants of Vascular Endothelial Growth Factor (VEGF) and Insulin-like Growth Factor 1 (IGF-1) may play a role in prostate cancer development. VEGF and IGF-1 have also been reported to be associated with QoL in people with ovarian cancer and colorectal cancer, respectively. This study completed a series of secondary analyses using two major data-sets (from 850 men newly diagnosed with prostate cancer, and approximately 550 men from the general Queensland population), in which genetic variants of VEGF and IGF-1 were investigated for associations with prostate cancer susceptibility and QoL. The first aim of this research was to investigate genetic variants in the VEGF and IGF-I gene for an association with the risk of prostate cancer. It was found that one IGF-1 genetic variant (rs35765) had a statistically significant association with prostate cancer (p = 0.04), and one VEGF genetic variant (rs2146323) had a statistically significant association with advanced prostate cancer (p = 0.02). The estimates suggest that carriers of the CA and AA genotype for rs35765 may have a reduced risk of developing prostate cancer (Odds Ratio (OR) = 0.72, 95% Confidence Interval (CI) = 0.55, 0.95, OR = 0.60, 95% CI = 0.26, 1.39, respectively). Meanwhile, carriers of the CA and AA genotype for rs2146323 may be at increased risk of advanced prostate cancer, which was determined by a Gleason score of above 7 (OR = 1.72, 95% CI = 1.12, 2.63, OR = 1.90, 95% CI = 1.08, 3.34, respectively). Utilising the widely used short-form health survey, the SF-36v2, the second aim of this study was to investigate the relationship between prostate cancer and QoL prior to treatment. Assessing QoL at this time-point was important as little research has been conducted to evaluate if prostate cancer affects QoL regardless of treatment. The analyses found that mean SF-36v2 scale scores related to physical health were higher by at least 0.3 Standard Deviations (SD) among men with prostate cancer than the general population comparison group. This difference was considered clinically significant (defined by group differences in mean SF-36v2 scores by at least 0.3 SD). These differences were also statistically significant (p<0.05). Mean QoL scale scores related to mental health were similar between men with prostate cancer and those from the general population comparison group. The third aim of this study was to investigate genetic variants in the VEGF and IGF-1 gene for an association with QoL in prostate cancer patients prior to their treatment. It was essential to evaluate these relationships prior to treatment, before the involvement of these genes was potentially interrupted by treatment. The analyses found that some genetic variants had a small clinically significant association (0.3 SD) to some QoL domains experienced by these men. However, most relationships were not statistically significant (p>0.05). Most of the associations found identified that a small sub-group of men with prostate cancer (approximately 2%) reported, on average, a slightly better QoL than the majority of the prostate cancer patients. The fourth aim of this research was to investigate whether associations between genetic variants in VEGF and IGF-1 and QoL were specific to men with prostate cancer, or were also applicable to the general male population. It was found that twenty out of one-hundred relationships between the genetic variants of VEGF and IGF-1 and QoL health-measures and scales examined differed between these groups. In the majority of the relationships involving VEGF SNPs that differed, a clinically significant difference (0.3 or more SD) between mean scores among the genotype groups in prostate cancer patients was found, while mean scores among men from the general-population comparison group were similar. For example, prostate cancer participants who carried at least one T allele (CT or TT genotype) for rs3024994 had a clinically significant higher (0.3 SD) mean QoL score in terms of the role-physical scale, than participants who carried the CC genotype. This was not seen among men from the general population sample, as the mean score was similar between genotype groups. The opposite was seen in regards to the IGF-1 SNPs examined. Overall, these relationships were not considered to directly impact on the clinical options for men with prostate cancer. As this study utilised secondary data from two separate studies, there are a number of important limitations that should be acknowledged including issues of multiple comparisons, power, and missing or unavailable data. It is recommended that this study be replicated as a better-designed study that takes greater consideration of the many factors involved in prostate cancer and QoL. Investigation into other genetic variants of VEGF or IGF-1 is also warranted, as is consideration of other genes and their relationship with QoL. Through identifying certain genetic variants that have a modest association to prostate cancer, this project adds to the knowledge surrounding VEGF and IGF-1 and their role in prostate cancer susceptibility. Importantly, this project has also introduced the potential role genetics plays in QoL, through investigating the relationships between genetic variants of VEGF and IGF-1 and QoL.

Quality of life of women with lower-limb lymphedema following gynecological cancer

Secondary lower-limb lymphedema can develop following treatment for gynecological cancers, and has debilitating effects on quality of life (QoL). Lymphedema can limit mobility and ability to perform daily activities, and have adverse effects on psychological and social wellbeing. When assessing the effect of lymphedema treatment methods, the focus is on change in clinically measured lymphedema status, rather than QoL outcomes. Considering that treatment for lymphedema involves a significant and ongoing commitment from patients, it is essential to determine whether the benefits to patients outweigh the burden associated with treatment. This article summarizes the results of studies assessing the impact of lower-limb lymphedema on QoL in women with gynecological cancer, evaluates their methodologies and discusses limitations and priorities for future research.

A Cochrane review on the effects of end-of-life care pathways : do they improve patient outcomes?

Clinical pathways for end-of-life care management are used widely around the world and have been regarded as the gold standard. The aim of this review was to assess the effects of end-of-life care pathways (EOLCP), compared with usual care (no pathway) or with care guided by a different end-of-life care pathway, across all healthcare settings (e.g. hospitals, residential aged care facilities, community). We searched the Cochrane Register of Controlled Trials (CENTRAL), the Pain, Palliative and Supportive Care Review group specialised register, MEDLINE, EMBASE, review articles and reference lists of relevant articles. The search was carried out in September 2009. All randomised controlled trials (RCTs), quasi-randomised trials or high quality controlled before and after studies comparing use versus non-use of an EOLCP in caring for the dying were considered for inclusion. The search identified 920 potentially relevant titles, but no studies met criteria for inclusion in the review. Without further available evidence, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. There are now recent concerns regarding the big scale roll-out of EOLCP despite the lack of evidence, nurses should report any safety concerns or adverse effects associated with such pathways.

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.

Cross-cultural comparisons of health-related quality of life in Australian and Japanese midlife women

Objective: The purpose of this study was to address (1) the existence of an association between menopausal status and the health-related quality of life (HRQOL) in Australian and Japanese women and (2) the relative contributions of menopausal status, modifiable lifestyle risk factors, health, and sociodemographic factors on HRQOL. Design: The Australian and Japanese Midlife Women's Health Study (AJMWHS) was a multisite, population-based study conducted in 2001 to 2002. Measures were conducted on data collected from a survey questionnaire used for a sample of women from Australia and Japan. HRQOL was assessed with seven subscales from the Short Form-36. Results: The differences seen in physical functioning, general health, and vitality are significant. The results support an effect of country of residence on physical functioning and general health. The impact of menopausal status on HRQOL was significantly associated with bodily pain and role-emotional. The country of residence did have a modifying effect on the relationship between menopausal status and physical functioning. After control for confounders, there was a significant difference between Australian and Japanese women for HRQOL. Menopausal status was not associated with HRQOL in the areas of general health and physical functioning. Modifiable lifestyle risk factors contributed more highly to HRQOL for the Australian women than for the Japanese women. If the women had a lowered body mass index, undertook physical activity, consumed dietary phytoestrogens, and used alcohol, their physical functioning seemed to be better. Differences were seen in the contributions to HRQOL in these areas, with lower body mass index in the Australian women and physical activity in the Japanese women being the highest predictors. Somatic and psychological symptoms seem to negatively affect both Japanese and Australian women's physical functioning, contributing more than sociodemographic factors, menopausal status, and behavioral determinants combined to general health and physical functioning. Conclusions: It is important that that consideration be given to incorporating the same tool within the cross-cultural design of studies so that comparisons between cultures and patterns of healthy aging can be made. The research suggests that there seems to be variations across Australian and Japanese midlife women in some areas of HRQOL and some factors that contribute to these areas.

Associations between perception of wellness and health-related quality of life, comorbidities, modifiable lifestyle factors and demographics in older Australians

Aim: The associations between perceived wellness and health-related quality of life, comorbidities and modifiable lifestyle factors in older adults were explored. Methods: Self-administered questionnaires including the Perceived Wellness Survey and the 36-Item Short Form of the Medical Outcomes Study version two were distributed to 328 community-living adults aged 65 years and over. Results: Results showed positive associations between perception of wellness and health-related quality of life. General health (r(249) = 0.66, P < 0.01), vitality (r(249) = 0.59, P < 0.01) and mental health (r(249) = 0.52, P < 0.01) had the strongest association; and social functioning (r(249) = 0.3, P < 0.01) and pain (r(249) = 0.36, P < 0.01) the lowest. Perceived wellness was influenced by hearing, mobility, memory, chronic disease, exercise, gambling and single status. Conclusion: The study identified that perceived wellness in older adults is a multidimensional construct.