The right to choose an assisted death : time for legislation?

The legal framework that operates at the end of life in Australia needs to be reformed. • Voluntary euthanasia and assisted suicide are currently unlawful. • Both activities nevertheless occur not infrequently in Australia, in part because palliative care cannot relieve physical and psychological pain and suffering in all cases. • In this respect, the law is deficient. The law is also unfair because it doesn’t treat people equally. Some people can be helped to die on their own terms as a result of their knowledge and/or connections while some are able to hasten their death by the refusal of life-sustaining treatment. But others do not have access to the means for their life to end. • A very substantial majority of Australians have repeatedly expressed in public opinion polls their desire for law reform on these matters. Many are concerned at what they see is happening to their loved ones as they reach the end of their lives, and want the confidence that when their time comes they will be able to exercise choice in relation to assisted dying. • The most consistent reason advanced not to change the law is the need to protect the vulnerable. There is a concern that if the law allows voluntary euthanasia and assisted suicide for some people, it will be expanded and abused, including pressures being placed on highly dependent people and those with disabilities to agree to euthanasia. • But there is now a large body of experience in a number of international jurisdictions following the legalisation of voluntary euthanasia and/or assisted suicide. This shows that appropriate safeguards can be implemented to protect vulnerable people and prevent the abuse that opponents of assisted dying have feared. It reveals that assisted dying meets a real need among a small minority of people at the end of their lives. It also provides reassurance to people with terminal and incurable disease that they will not be left to suffer the indignities and discomfort of a nasty death. • Australia is an increasingly secular society. Strong opposition to assisted death by religious groups that is based on their belief in divine sanctity of all human life is not a justification for denying choice for those who do not share that belief. • It is now time for Australian legislators to respond to this concern and this experience by legislating to enhance the quality of death for those Australians who seek assisted dying.

Study protocol : establishing good relationships between patients and health care providers while providing cardiac care. Exploring how patient-clinician engagement contributes to health disparities between indigenous and non-indigenous Australians in South Australia

Abstract Background: Studies that compare Indigenous Australian and non-Indigenous patients who experience a cardiac event or chest pain are inconclusive about the reasons for the differences in-hospital and survival rates. The advances in diagnostic accuracy, medication and specialised workforce has contributed to a lower case fatality and lengthen survival rates however this is not evident in the Indigenous Australian population. A possible driver contributing to this disparity may be the impact of patient-clinician interface during key interactions during the health care process. Methods/Design: This study will apply an Indigenous framework to describe the interaction between Indigenous patients and clinicians during the continuum of cardiac health care, i.e. from acute admission, secondary and rehabilitative care. Adopting an Indigenous framework is more aligned with Indigenous realities, knowledge, intellects, histories and experiences. A triple layered designed focus group will be employed to discuss patient-clinician engagement. Focus groups will be arranged by geographic clusters i.e. metropolitan and a regional centre. Patient informants will be identified by Indigenous status (i.e. Indigenous and non-Indigenous) and the focus groups will be convened separately. The health care provider focus groups will be convened on an organisational basis i.e. state health providers and Aboriginal Community Controlled Health Services. Yarning will be used as a research method to facilitate discussion. Yarning is in congruence with the oral traditions that are still a reality in day-to-day Indigenous lives. Discussion: This study is nestled in a larger research program that explores the drivers to the disparity of care and health outcomes for Indigenous and non-Indigenous Australians who experience an acute cardiac admission. A focus on health status, risk factors and clinical interventions may camouflage critical issues within a patient-clinician exchange. This approach may provide a way forward to reduce the appalling health disadvantage experienced within the Indigenous Australian communities. Keywords: Patient-clinician engagement, Qualitative, Cardiovascular disease, Focus groups, Indigenous

Development, implementation and evaluation of a cancer survivor self-management care plan

Aim There is a growing population of people with cancer who experience physiological and psychological effects that persist long after treatment is complete. Interventions that enhance survivors’ self-management abilities might help offset these effects. The aim of this pilot study was to develop, implement and evaluate interventions tailored to assist patients to manage post-treatment health issues effectively. Method In this pre-post intervention cohort study, participants were recruited on completion of cancer treatment. Participants recruited preimplementation, who received usual care, comprised the control group. Participants recruited later formed the intervention group. In the intervention group, the Cancer Care Coordinator developed an individualised, structured Cancer Survivor Self-management Care Plan. Participants were interviewed on completion of treatment (baseline) and at three months. Assessments concerned health needs (CaSUN), self-efficacy in adjusting and coping with cancer and health-related quality of life (FACIT-B or FACT-C). The impact of the intervention was determined by independent t-tests of change scores. Results The intervention (n = 32) and control groups (n = 35) were comparable on demographic and clinical characteristics. Sample mean age was 54 + 10 years. Cancer diagnoses were breast (82%) and colorectal (18%). Statistically significant differences (p < 0.05) indicated improvement in the intervention group for: (a) functional well-being, from the FACIT, (Control: M = −0.69, SE = 0.91; Intervention: M = 3.04, SE = 1.13); and (b) self-efficacy in maintaining social relationships, (Control: M = −0.333, SE = 0.33; Intervention: M = 0.621, SE = 0.27). No significant differences were found in health needs, other subscales of quality of life, the extent and number of strategies used in coping and adjusting to cancer and in other domains of self-efficacy. Conclusions While the results should be interpreted with caution, due to the non-randomised nature of the study and the small sample size, they indicate the potential benefits of tailored self-management interventions warrant further investigation in this context.

An exploratory study of grief and health-related quality of life for caregivers of people with dementia

The aim of this qualitative study was to explore key positive and negative factors that impact on grief resolution and health outcomes of caregivers who were caring, or had cared, for a family member with dementia who had died. The study was a scoping study and involved face-to-face interviews with these family caregivers (N ¼ 13). Results indicated a complex interaction of issues (many unique to dementia caregiving) which in different combinations acted as protective or risk factors for caregiver outcomes. Interaction of individual characteristics, role appraisal, value of intrinsic and extrinsic resources, and experiences with health professionals during the caregiving period and around the death of their relative were shown to have the most influence on caregiver outcomes. Psychological resilience and satisfaction with caregiving were protective against negative outcomes while unresolved grief was a risk factor. These findings highlight the potential benefits of multicomponent, holistic dementia caregiver interventions.

Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai

Background: There is a paucity of research assessing health-related quality of life (HRQoL) and self-efficacy in caregivers of relatives with dementia in mainland China. Aims: To compare the level of HRQoL between caregivers and the general population in mainland China and to assess the role of caregiver self-efficacy in the relationship between caregiver social support and HRQoL. Methods: A cross-sectional study was conducted in Shanghai, China. The caregivers were recruited from the outpatient department of a teaching hospital. A total of 195 participants were interviewed, using a survey package including the Chinese version of the 36-Item Short-Form Health Survey (SF-36), demographic data, the variables associated with the impairments of care recipients, perceived social support and caregiver self-efficacy. The caregivers' SF-36 scores were compared with those of the general population in China. Results: The results indicated that the HRQoL of the caregivers was poorer compared with that of the general population when matched for age and gender. Multiple regression analyses revealed that caregiver self-efficacy is a partial mediator between social support and HRQoL, and a partial mediator between behavioral and psychological symptoms of dementia (BPSD) and caregiver mental health. Conclusion: Assisting with managing BPSD and enhancing caregiver self-efficacy can be considered integral parts of interventions to improve caregiver HRQoL.

Working together-apart : exploring the relationships between formal and informal care networks for people dying at home

Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

Development and pilot study of the Primary Care Practice Improvement Tool (PC-PIT) : an innovative approach

Objective To assess the usability and validity of the Primary Care Practice Improvement Tool (PC-PIT), a practice performance improvement tool based on 13 key elements identified by a systematic review. It was co-created with a range of partners and designed specifically for primary health care. Design This pilot study examined the PC-PIT using a formative assessment framework and mixed-methods research design. Setting and participants Six high-functioning general practices in Queensland, Australia, between February and July 2013. A total of 28 staff participated — 10 general practitioners, six practice or community nurses, 12 administrators (four practice managers; one business manager and eight reception or general administrative staff). Main outcome measures Readability, content validity and staff perceptions of the PC-PIT. Results The PC-PIT offers an appropriate and acceptable approach to internal quality improvement in general practice. Quantitative assessment scores and qualitative data from all staff identified two areas in which the PC-PIT required modification: a reduction in the indicative reading age, and simplification of governance-related terms and concepts. Conclusion The PC-PIT provides an innovative approach to address the complexity of organisational improvement in general practice and primary health care. This initial validation will be used to develop a suite of supporting, high-quality and free-to-access resources to enhance the use of the PC-PIT in general practice. Based on these findings, a national trial is now underway.

What are pregnant women told about models of maternity care in Australia? A retrospective study of women's reports

Objective To describe women’s reports of the model of care options General Practitioners (GPs) discussed with them at the first pregnancy consultation and women’s self-reported role in decisionmaking about model of care. Methods Women who had recently given birth responded to survey items about the models of care GPs discussed, their role in final decision-making, and socio-demographic, obstetric history, and early pregnancy characteristics. Results The proportion of women with whom each model of care was discussed varied between 8.2% (for private midwifery care with home birth) and 64.4% (GP shared care). Only 7.7% of women reported that all seven models were discussed. Exclusive discussion about private obstetric care and about all public models was common, and women’s health insurance status was the strongest predictor of the presence of discussions about each model. Most women (82.6%) reported active involvement in final decision-making about model of care. Conclusion Although most women report involvement in maternity model of care decisions, they remain largely uninformed about the breadth of available model of care options. Practical implications Strategies that facilitate women’s access to information on the differentiating features and outcomes for all models of care should be prioritized to better ensure equitable and quality decisions.

Stress and burnout amongst professional carers of people with intellectual disability : another health inequity

Purpose of review This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. Recent findings Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. Summary The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

Age, physical inactivity, obesity, health conditions, and health-related quality of life among patients receiving conservative management for musculoskeletal disorders

Background Musculoskeletal conditions and insufficient physical activity have substantial personal and economic costs among contemporary aging societies. This study examined the age distribution, comorbid health conditions, body mass index (BMI), self-reported physical activity levels, and health-related quality of life of patients accessing ambulatory hospital clinics for musculoskeletal disorders. The study also investigated whether comorbidity, BMI, and self-reported physical activity were associated with patients’ health-related quality of life after adjusting for age as a potential confounder. Methods A cross-sectional survey was undertaken in three ambulatory hospital clinics for musculoskeletal disorders. Participants (n=224) reported their reason for referral, age, comorbid health conditions, BMI, physical activity levels (Active Australia Survey), and health-related quality of life (EQ-5D). Descriptive statistics and linear modeling were used to examine the associations between age, comorbidity, BMI, intensity and duration of physical activity, and health-related quality of life. Results The majority of patients (n=115, 51.3%) reported two or more comorbidities. In addition to other musculoskeletal conditions, common comorbidities included depression (n=41, 18.3%), hypertension (n=40, 17.9%), and diabetes (n=39, 17.4%). Approximately one-half of participants (n=110, 49.1%) self-reported insufficient physical activity to meet minimum recommended guidelines and 150 (67.0%) were overweight (n=56, 23.2%), obese (n=64, 28.6%), severely obese (n=16, 7.1%), or very severely obese (n=14, 6.3%), with a higher proportion of older patients affected. A generalized linear model indicated that, after adjusting for age, self-reported physical activity was positively associated (z=4.22, P<0.001), and comorbidities were negatively associated (z=-2.67, P<0.01) with patients’ health-related quality of life. Conclusion Older patients were more frequently affected by undesirable clinical attributes of comorbidity, obesity, and physical inactivity. However, findings from this investigation are compelling for the care of patients of all ages. Potential integration of physical activity behavior change or other effective lifestyle interventions into models of care for patients with musculoskeletal disorders is worthy of further investigation.

Health Information Exchange in the wake of ‘big data’ paradigm – the theme is from ‘quality of information to quality of life’

Health Information Exchange (HIE) is an interesting phenomenon. It is a patient centric health and/or medical information management scenario enhanced by integration of Information and Communication Technologies (ICT). While health information systems are repositioning complex system directives, in the wake of the ‘big data’ paradigm, extracting quality information is challenging. It is anticipated that in this talk, ICT enabled healthcare scenarios with big data analytics will be shared. In addition, research and development regarding big data analytics, such as current trends of using these technologies for health care services and critical research challenges when extracting quality of information to improve quality of life will be discussed.

Just what the doctor ordered? Investigating the impact of health service quality on consumer misbehaviour

The growth in demand and expenditure currently being experienced in the Australian health sector is also accompanied by a rise in dysfunctional customer behaviour, such as verbal abuse and physical violence, perpetrated against health service providers. While service failure and poor recovery are known to trigger consumer misbehaviour, this study investigates whether lower than expected perceived service quality generates cognitive and emotional appraisals that trigger two common forms of misbehaviour: refusal to participate and verbal abuse. Data were collected using a 2 × 2 between-subjects experiment administered via online written survey and analysed using path modelling. The findings indicate that perceptions of service encounter quality have an indirect effect on whether consumers refuse to participate in the service and/or verbally abuse the service provider through the mediating effect of anger.

The primacy of vital signs – Acute care nurses’ and midwives’ use of physical assessment skills: A cross sectional study

BACKGROUND: Registered nurses and midwives play an essential role in detecting patients at risk of deterioration through ongoing assessment and action in response to changing health status. Yet, evidence suggests that clinical deterioration frequently goes unnoticed in hospitalised patients. While much attention has been paid to early warning and rapid response systems, little research has examined factors related to physical assessment skills. OBJECTIVES: To determine a minimum data set of core skills used during nursing assessment of hospitalised patients and identify nurse and workplace predictors of the use of physical assessment to detect patient deterioration. DESIGN: The study used a single-centre, cross-sectional survey design. SETTING and PARTICIPANTS: The study included 434 registered nurses and midwives (Grades 5-7) involved in clinical care of patients on acute care wards, including medicine, surgery, oncology, mental health and maternity service areas, at a 929-bed tertiary referral teaching hospital in Southeast Queensland, Australia. METHODS: We conducted a hospital-wide survey of registered nurses and midwives using the 133-item Physical Assessment Skills Inventory and the 58-item Barriers to Registered Nurses’ Use of Physical Assessment scale. Median frequency for each physical assessment skill was calculated to determine core skills. To explore predictors of core skill utilisation, backward stepwise general linear modelling was conducted. Means and regression coefficients are reported with 95% confidence intervals. A p value < .05 was considered significant for all analyses. RESULTS: Core skills used by most nurses every time they worked included assessment of temperature, oxygen saturation, blood pressure, breathing effort, skin, wound and mental status. Reliance on others and technology (F = 35.77, p < .001), lack of confidence (F = 5.52, p = .02), work area (F = 3.79, p = .002), and clinical role (F = 44.24, p < .001) were significant predictors of the extent of physical assessment skill use. CONCLUSIONS: The increasing acuity of the acute care patient plausibly warrants more than vital signs assessment; however, our study confirms nurses’ physical assessment core skill set is mainly comprised of vital signs. The focus on these endpoints of deterioration as dictated by early warning and rapid response systems may divert attention from and devalue comprehensive nursing assessment that could detect subtle changes in health status earlier in the patient's hospitalisation.

Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities (APPCOID)

Background People with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID. Methods A two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven’t done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don’t have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It’s important to know that the therapist will be blinded and won’t know the subjects of each group. Discussion Offering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense. Trial registration ClinicalTrials.gov Identifier: NCT01915381.

Linking client and employee perceptions of the organization: A study of client satisfaction with health care services

Client satisfaction with health care services has usually been researched in terms of socio-demographic and predispositional characteristics associated with the client. The present study included organizational characteristics as predictors of client satisfaction with health care services. Participants in the research were clients and employees of an Australian public-sector health care organization who responded to separate client and employee questionnaires. Hierarchical regression analyses indicated that, after controlling for a number of client characteristics, organizational characteristics, as perceived by employees, accounted for a significant proportion of additional variance in client satisfaction with health care services. Results of the present study provided some support for the proposition that employee perceptions of the working environment should be considered in a more comprehensive understanding of client satisfaction with health care services. Limitations of the study highlight practical difficulties in the assessment of client outcomes and methodological complexities in linking individual and organizational processes.