Decision making in health care: limitations of the substituted judgement principle

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals.

Straddling the pathway from paediatrician to mainstream health care : transition issues experienced in disability care

Objective: To identify the strengths and limitations of health care and related services provided to young adults with a disability during the period of transition from the care of a paediatrician to the mainstream health system.
Design: A descriptive design was used to address the study objectives.
Setting: Barwon and south-western region of Victoria.
Subjects: Twelve focus group discussions, with young adults with a disability, carers of young adults with a disability and health care service providers. Each focus group involved eight to 10 participants.
Results: The findings revealed a number of problems with the transition period. All participants acknowledged the supportive, coordinating role of the paediatrician. In the absence of this type of role, carers felt they lacked the knowledge and support to manage the adolescent with a disability. Communication problems between all service providers were identified as being problematical. The general lack of continuity of care between providers made it difficult for individuals to negotiate the transition period and increased the burden of care on carers.
Conclusion: There is a need for policy makers to address these transition problems and develop appropriate services that improve the situation for young adults with a disability and their carers.
What is already known: It is well documented that the transition period from paediatrician to adult health care services is problematic for the young adult with a disability and their carer. The difficulties experienced are attributed to poor communication between service providers and a lack of continuity of care.
What does this study add: This study provides insights from a number of different consumer and health care professionals' perspectives. The findings identify service delivery gaps and a need to develop health care services that could assist the young adult with the disability negotiate this transition from the paediatric services to mainstream health care services in rural and regional settings in Victoria.

Clinical nurses` response to an environment of health care reform and organizational restructuring

The aim of this paper is to provide an explanation for clinicians' undisputed acceptance of change. This will be performed by examining the process of organizational restructuring across three analytical levels – the macro, meso and micro; identifying the consequences of restructuring for clinical nurses' performance; and evaluating organizational restructuring using a micro-political theoretical framework.

The transition from pediatric to adult health care services for young adults with a disability : an ethical perspective

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood At some stage when the young person with a disability reaches early adulthood, the relationship is severed This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent, paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.

Prevention of type 2 diabetes in a primary health care setting interim results from the Greater Green Triangle (GGT) Diabetes Prevention Project

Although clinical trials have shown that lifestyle modifications reduce the risk of type 2 diabetes, translating lessons from trials to primary care remains a challenge. The aim of the study was to evaluate efficacy and feasibility of primary care-based diabetes prevention model with modest resource requirements in rural Australia. Three hundred and eleven subjects with at least a moderate risk of type 2 diabetes participated in a combined dietary and physical activity intervention. Clinical measurements and fasting blood samples were taken at the baseline and after intervention. After 3 months intervention, total (change −3.5%, p < 0.001) and LDL cholesterol (−4.8%, p < 0.001) plasma levels as well as body mass index (−2.5%, p < 0.001), weight (−2.5%, p < 0.001), and waist (−1.6%, p < 0.001) and hip (−2.7%, p < 0.001) circumferences reduced significantly. A borderline reduction was found in triglyceride levels (−4.8%, p = 0.058) while no changes were observed in HDL cholesterol (+0.6%, p = 0.525), glucose (+0.06%, p = 0.386), or systolic (−0.98%, p = 0.095) or diastolic (−1.06%, p = 0.134) blood pressure levels. In conclusion, a lifestyle intervention improved health outcomes – especially obesity and blood lipids – in a population at high risk of developing type 2 diabetes. Our results suggest that the present model is effective and feasible to carry out in primary care settings.

Prevention of type 2 diabetes by lifestyle intervention in an Australian primary health care setting : Greater Green Triangle (GGT) Diabetes Prevention Project

Background
Randomised controlled trials demonstrate a 60% reduction in type 2 diabetes incidence through lifestyle modification programmes. The aim of this study is to determine whether such programmes are feasible in primary health care.

Methods
An intervention study including 237 individuals 40–75 years of age with moderate or high risk of developing type 2 diabetes. A structured group programme with six 90 minute sessions delivered during an eight month period by trained nurses in Australian primary health care in 2004–2006. Main outcome measures taken at baseline, three, and 12 months included weight, height, waist circumference, fasting plasma glucose and lipids, plasma glucose two hours after oral glucose challenge, blood pressure, measures of psychological distress and general health outcomes. To test differences between baseline and follow-up, paired t-tests and Wilcoxon rank sum tests were performed.

Results
At twelve months participants' mean weight reduced by 2.52 kg (95% confidence interval 1.85 to 3.19) and waist circumference by 4.17 cm (3.48 to 4.87). Mean fasting glucose reduced by 0.14 mmol/l (0.07 to 0.20), plasma glucose two hours after oral glucose challenge by 0.58 mmol/l (0.36 to 0.79), total cholesterol by 0.29 mmol/l (0.18 to 0.40), low density lipoprotein cholesterol by 0.25 mmol/l (0.16 to 0.34), triglycerides by 0.15 mmol/l (0.05 to 0.24) and diastolic blood pressure by 2.14 mmHg (0.94 to 3.33). Significant improvements were also found in most psychological measures.

Conclusion
This study provides evidence that a type 2 diabetes prevention programme using lifestyle intervention is feasible in primary health care settings, with reductions in risk factors approaching those observed in clinical trials.

Trial Number
Current Controlled Trials ISRCTN38031372

Exploring distributive justice in health care

The allocation of resources to providers and the way in which the resources are then prioritised to specific service areas and patients remain the critical ethical decisions which determine the type of health system a community receives. Heath care providers will never be given enough resources to satisfy all the demands placed upon them by a community that is becoming increasingly informed and demanding. This paper discusses the matter of justice as it relates to the distribution of health resources. It translates the theoretical constructs of distribution into a practical situation that arose at The Geelong Hospital. It is important to emphasise that the aim of giving the example is not necessarily to provide the right answer but rather to assist in determining what ought to be the questions.

Rules and resources: a structuration approach to understanding the coordination of childrens`s inpatient health care

Aim. This paper presents findings from a multi-method study exploring the process of care coordination in children's inpatient health care.

Background. Existing work on care coordination is typified by 'black-box' type studies that measure inputs to and outcomes of care coordination roles and practices, without addressing the process of coordination.

Method. Using questionnaires, interviews and observation to collect data in multiple sites in the United Kingdom and Denmark between 1999 and 2005, the study gathered the perceptions of staff and compared these with observed practice. Giddens' structuration theory was used to provide an analytical and explanatory framework.

Findings. Current care coordination practice is diverse and inconsistent. It involves a wide range of clinical and non-clinical staff, many of whom perceive a lack of clarity about who should perform specific coordination activities. Staff draw upon a wide range of different material and non-material resources in coordinating care, the use of which is governed by largely tacit and informal rules.

Conclusions. Care coordination can be usefully conceptualized as a 'structurated' process – one that is continually produced and reproduced by staff using rules and resources to 'instantiate' or bring about care coordination through action. Potentially negative implications of this are manifested in diversity and inconsistency in care coordination practice. However, positive aspects such as the opportunity this provides to tailor care to the needs of the individual patient can be realized.

Women exposed to intimate partner violence : expectations and experiences when they encounter health care professionals : a meta-analysis of qualitative studies

Background The appropriate response of health care professionals to intimate partner violence is still a matter of debate. This article reports a meta-analysis of qualitative studies that answers 2 questions: (1) How do women with histories of intimate partner violence perceive the responses of health care professionals? and (2) How do women with histories of intimate partner violence want their health care providers to respond to disclosures of abuse?

Methods Multiple databases were searched from their start to July 1, 2004. Searches were complemented with citation tracking and contact with researchers. Inclusion criteria included a qualitative design, women 15 years or older with experience of intimate partner violence, and English language. Two reviewers independently applied criteria and extracted data. Findings from the primary studies were combined using a qualitative meta-analysis.

Results Twenty-nine articles reporting 25 studies (847 participants) were included. The emerging constructs were largely consistent across studies and did not vary by study quality. We ordered constructs by the temporal structure of consultations with health care professionals: before the abuse is discussed, at disclosure, and the immediate and further responses of the health care professional. Key constructs included a wish from women for responses from health care professionals that were nonjudgmental, nondirective, and individually tailored, with an appreciation of the complexity of partner violence. Repeated inquiry about partner violence was seen as appropriate by women who were at later stages of an abusive relationship.

Conclusion Women’s perceptions of appropriate and inappropriate responses partly depended on the context of the consultation, their own readiness to address the issue, and the nature of the relationship between the woman and the health care professional.

Contingent valuation in health care and the persistence of embedding effects without the warm glow

This paper reports a test of the presence of embedding effects in a health care contingent valuation study. A within-subject, mixed qualitative–quantitative approach was used to identify and explain the presence of embedding in estimates of willingness to pay for vaccinations. Embedding effects persisted despite controlling for known causes and did so even among respondents who perceived the effect to be anomalous. Results from the qualitative interviews suggest that embedding effects arise for varied reasons but might be indicative of incomplete preferences. It is questionable, however, whether survey techniques can be better designed to encourage values clarification.