Supporting the Involvement of Adults with Cognitive Disabilities in Research: The Need for Reform.

This article examines current legal and ethical requirements concerning research about adults with cognitive disabilities. These requirements, the article argues, are complex, difficult to navigate, and inevitably act as a disincentive for research to be conducted. These requirements also do little to encourage active involvement by adults with cognitive disabilities in deciding whether to participate in research. The article argues that reforms are needed for State and Territory laws to require, wherever possible, adults to be supported to make their own decisions about research participation. State and Territory law reform is also required to clarify when, and on what basis, others may be appointed to make research participation decisions on behalf of adults with cognitive disabilities. The article concludes by seeking complementary reform of the National Health and Medical Research Council National Statement on Ethical Conduct in Human Research, which would result in it being more human rights compliant and simpler to apply.

Integrity in Guardianship Decision Making: Applying the Will and Preferences Paradigm.

Guardianship laws have changed significantly over the 20th and 21st centuries to shift from the "best interests" model to the "supported decision-making" model. Such changes reflect the importance of supporting the dignity of risk of persons who lack decision-making capacity for some decisions. Recent changes to the Victorian Guardianship and Administration Act 2019 (Vic) in Australia require guardians to give effect to the "will and preferences" of the represented person, as far as practicable. The changes reveal a compromise between the competing rights to autonomy and to safety. Here, we explore the meaning of "will and preferences" before considering the personal factors that may contribute to the understanding of an individual's will and preferences. The practical challenge of ascertaining, interpreting, and giving effect to a person's will and preferences are also discussed. Finally, we consider the practical challenge of identifying when a person needs decision-making support.

Prioritising Patients' Preferences: Victoria's New Advance Planning and Medical Consent Legislation.

The introduction of the Medical Treatment Planning and Decisions Act 2016 Vic signals a profound alteration in focus from best interests substitute decision making, and will result in increased opportunities for patients to control their treatment choices. This will apply for advance care directives, and will also more effectively guide decisions made by a proxy. There will be an increased ability for patients to refuse treatment, and an expansion of the treatment choices covered by legislation. This column explores the impact of the legislation and reflects on its extension, and clinical challenges which may arise from the legislation.

Re Jamie (no 2): A positive development for transgender young people.

Re Jamie (No 2) is an important decision of the Full Family Court that significantly clarifies the law concerning "special medical procedures". The court has held that so-called stage one treatment for gender dysphoria, designed to suppress pubertal development, no longer requires judicial approval. The decision contains an important endorsement of the view that the phenomenon of gender dysphoria could be de-pathologised. Crucially, the decision also confirms that if a young person is found to be Gillick competent, the court has no power to override their treatment decisions. However, given the consequences of such treatment, and consistently with the authority in Marion's Case, the court will continue to have a "safeguard" role in determining whether Gillick competence exists. The article outlines some cautionary notes about the removal of court oversight at stage one, but argues that the decision is a positive one for enabling access to treatment and ameliorating the financial burden of legal proceedings on the families of transgender adolescents.

Consent versus scrutiny: restricting liberties in post-Bournewood Victoria.

The article considers the problem of people with impaired capacity who face restrictions on their liberty but who are compliant with such practices. The issue has bedevilled courts and law reform commissions throughout the common law world since HL v United Kingdom [2004] ECHR 471 exposed the legal "gap" in which such people were languishing. Proposals to address it have either been excessively complex, or largely concerned with the mechanism for lawful consent to restrictive practices rather than scrutinising the practices themselves. The article critically discusses these proposals and argues that a suitable, if not ideal, regime for regulating the problem already exists in the Victorian Disability Act 2006.

Challenging Australia's "closed" model of neonatal care: the need for reform following Re baby D (No 2).

The withdrawal or withholding of life-sustaining treatment to compromised newborns is a subject of controversy in countries where there is now highly advanced neonatal care to keep such newborns alive. The topic has generated comparatively less debate in Australia, where case law is sparse and parents and clinicians themselves make decisions regarding the cessation of care, largely free from extemal oversight. The recent case of Re Baby D (No 2) [2011] FamCA 176 endorses this "closed" approach to neonatal decision-making. This article critically discusses some of its implications and makes suggestions for reform to ensure meaningful oversight of decisions to withdraw or withhold treatment. The authors argue that the judgment fails to address some fundamental issues, such as ensuring that those with the responsibility to make decisions are doing so on a "best interests" basis. This is important because, in a society where disability remains stigmatised and poorly understood, there is no opportunity under the approach adopted in Baby D to guarantee adequate protection of the rights of individuals born with physical or intellectual impairments.

One-year outcomes and a cost-effectiveness analysis for smokers accessing group-based and pharmacy-led cessation services.

INTRODUCTION: An observational study examining 1-year follow-up of clients of two National Health Service smoking cessation services in Glasgow was used to inform a cost-effectiveness analysis. One service involved 7 weeks of group-based support (n = 411) and the other consisted of up to 12 weeks of one-to-one counseling with pharmacists (n = 1,374). Pharmacological aids to quitting (e.g., nicotine replacement therapy) were available to all clients. METHODS: Quit rates were calculated for each service at 52 weeks after the quit date, and these were used for an economic evaluation of both the annual and the lifetime cost-effectiveness of the pharmacy- and group-based interventions in comparison with a baseline "self-quit" scenario. The annual cost-effectiveness model established the incremental cost per 52-week quitter, while a Markov model was developed for the lifetime analysis to estimate the potential lifetime outcomes in terms of cost per quality-adjusted life years (QALY) gained, to account for the benefits quitters will receive in terms of extended life years and improvements in quality of life from smoking cessation. RESULTS: The proportion of carbon monoxide-validated quitters from both services combined fell from 22.5% at 4-week follow-up to 3.6% at 52 weeks. The group service achieved a higher quit rate (6.3%) than the pharmacy service (2.8%) but was more intensive and required greater overhead costs. The lifetime analysis resulted in an incremental cost per QALY of £4,800 for the group support and £2,600 for pharmacy one-to-one counseling. CONCLUSIONS: Despite disappointing 1-year quit rates, both services were considered to be highly cost-effective.

A comparison of the effectiveness of group-based and pharmacy-led smoking cessation treatment in Glasgow.

AIM: To compare the characteristics and outcomes of users accessing pharmacy and group-based smoking treatment. DESIGN: Observational study of administrative information linked with survey data. SETTING: Glasgow, Scotland. PARTICIPANTS: A total of 1785 service users who set a quit date between March and May 2007. INTERVENTION: Smoking treatment services based in pharmacies providing one-to-one support, and in the community offering group support. MEASUREMENTS: Routine monitoring data included information about basic demographic characteristics, deprivation category of residence, nature of intervention and smoking status at 4-week follow-up determined by carbon monoxide (CO) readings < or = 10. These data were supplemented by information about socio-economic status and smoking-related behaviours obtained from consenting service recipients by treatment advisers. FINDINGS: In the pharmacy-based service 18.6 % of users (n = 1374) were CO-validated as a quitter at 4 weeks, compared with 35.5 % (n = 411) in the group-based service. In a multivariate model, restricted to participants (n = 1366) with data allowing adjustment for socio-demographic and behavioural characteristics and including interaction terms, users who accessed the group-based services were almost twice as likely (odds ratio 1.980; confidence interval 1.50-2.62) as those who used pharmacy-based support to have quit smoking at 4-week follow-up. CONCLUSIONS: Specialist-led group-based services appear to have higher quit rates than one-to-one services provided by pharmacies but the pharmacy services treat many more smokers. More research is needed to determine what can be done to bring the success rates of pharmacy services up to those of specialist-led groups and how to expand access to group-based services.

The English smoking treatment services: short-term outcomes.

AIMS: To examine the impact of socio-demographic factors, smoking-related behaviour and service characteristics on CO-validated quit rates at 4-week follow-up in English smoking treatment services, and to compare the results with those for self-reported quitters. DESIGN: Observational study of administrative information linked with survey data for 6959 recipients of smoking treatment services who set a quit date between October 2001 and March 2003. SETTING: Two contrasting areas of England, Nottingham and North Cumbria, consisting of nine primary care trust (PCT) localities. MEASUREMENTS: Routine monitoring data specified by the Department of Health included information about basic demographic characteristics, postcode of residence from which a deprivation category was identified, nature of intervention and smoking status at 4-week follow-up. These data were supplemented with additional information about referral pathways, socio-economic status and smoking-related behaviours obtained from consenting service recipients by NHS advisers. FINDINGS: More than one-half of clients (53%) were CO-validated as quitters at 4 weeks, rising to 60.7% when self-reported cases were included. Age (OR 1.026; CI 1.0221.029) and being extremely determined to quit (OR 1.46; CI 1.261.71) were associated positively with CO-validated cessation, whereas women (OR 0.85; CI 0.770.94), users with lower socio-economic status (OR 0.92; CI 0.880.95), those smoking 31 or more cigarettes daily (OR 0.75; CI 0.640.88) and those with relatively poor health status (OR 0.72; CI 0.630.82) were less likely to quit. Although the vast majority of users received one-to-one support, those who had group counselling were more likely to be successful in their quit attempt (OR 1.38; CI 1.091.76). Self-report and CO-validated quitters were similar in terms of their characteristics. CONCLUSIONS: These results obtained from routine services support those obtained from clinical trials and confirm the effectiveness of counselling combined with pharmacotherapies to assist smokers to quit in the short term. However, the relative effectiveness of group interventions raises questions about why one-to-one counselling is used much more commonly. The importance of socio-demographic and nicotine-related dependency factors also suggests that local service targets for smoking cessation need to take account of the social distribution of these characteristics.

How effective are the English smoking treatment services in reaching disadvantaged smokers?

AIMS: To determine the effectiveness of smoking cessation services in enabling smokers living in disadvantaged areas to access treatment services, and to assess the extent of variations between areas. DESIGN: Observational study of administrative information linked with survey data. SETTING: A representative sample of 19 of the 95 English health areas in 2001. MEASUREMENTS: All England smoking data by deprivation category obtained from the Health Survey of England were used to estimate neighbourhood smoking prevalence rates. Area of residence data from smokers setting a quit date were used to calculate the proportion of smokers in receipt of treatment services in different economic deprivation categories. FINDINGS: In general, treatment services were seeing smokers from the most disadvantaged areas where smoking prevalence rates were highest; 32.3% of all smokers in receipt of treatment services lived in the most disadvantaged quintile of areas compared with 9.6% resident in the most advantaged quintile. An indicator of 'positive discrimination' was calculated for each health authority area to quantify the extent to which the proportion of disadvantaged smokers being treated was greater than the proportion in the local population. This figure ranged from just under 0% to 18%. CONCLUSIONS: National Health Service (NHS) smoking cessation services have been successful in reaching smokers from disadvantaged communities. If improved access to support for smokers living in the poorest communities can be extended, sustained and translated into long-term quitting then smoking cessation services have the potential to make a useful contribution to addressing inequalities in health.

The English smoking treatment services: one-year outcomes.

AIMS: To assess the impact of English treatment services on CO-validated quit rates at 52-week follow-up, to explore the relationship between service-related characteristics and socio-demographic and behavioural factors with cessation outcomes, and to compare the characteristics of service users lost to follow-up with CO-validated quitters. DESIGN: Observational study of administrative information linked with survey data for 2069 recipients of smoking treatment services who set a quit date between May and November 2002. SETTING: Two contrasting areas of England, Nottingham and North Cumbria, consisting of nine primary care trust (PCT) localities. MEASUREMENTS: Routine monitoring data specified by the Department of Health included information about basic demographic characteristics, postcode of residence from which a deprivation category was identified, nature of intervention, and smoking status at 4-week follow-up. These data were supplemented with information about smoking status at 52 weeks, referral pathways, relapse experiences, number of follow-up contact attempts, socio-economic status and smoking-related behaviours obtained from consenting service recipients by treatment advisers. FINDINGS: One user in seven (14.6%) reported prolonged abstinence and was CO-validated as a successful quitter at 52 weeks. This rose to 17.7% when self-report cases were included. Relapse rates between 4 and 52 weeks were almost identical between the two study areas--75%. Relapse was most likely to occur in the first 6 months following treatment. Users who self-reported quitting at 4 weeks were less likely (13.7%) than those with biochemical verification of smoking status at 4 weeks (25.2%) to be CO-validated quitters at 52 weeks (P = 0.004). Older users (OR 1.023; CI 1.014-1.032), people who smoke mainly for pleasure rather than to cope (OR 1.38; CI 1.02-1.87), and those who were extremely determined (OR 1.58; CI 1.21-2.05) were more likely to be quitters at 52-week follow-up, whereas those with lower socio-economic status (OR 0.86; CI 0.78-0.96), who smoked their first cigarette of the day within 5 minutes of waking (OR 0.73; CI 0.55-0.96) or had another smoker in their household (OR 0.65; CI 0.49-0.86) were less likely. In contrast, users lost to follow-up tended to be younger and experienced different referral pathways than CO-validated quitters. Gender was not statistically significantly associated with cessation at 52 weeks and nor were any of the key characteristics of intervention, such as group or one-to-one counselling. CONCLUSIONS: These results obtained from routine services are consistent with those obtained from clinical trials in relation to abstinence at one year. Given that a high proportion of smokers relapsed between 4 weeks and 1 year it is important that future assessments of longer-term outcomes are conducted. However, following-up service users many months after an intervention is expensive, and reasonable estimates of quit rates can be estimated from short-term outcomes, provided that they have been CO-validated. Future studies should monitor outcomes from a selection of services treating different groups of smokers, particularly if more is to be learned about the role of smoking treatment services in reducing inequalities in health.

Care management, dementia care and specialist mental health services: an evaluation.

OBJECTIVE: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people. METHOD: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Forty-three matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months. RESULTS: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group. DISCUSSION: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services.

Measuring satisfaction with social care amongst older service users: issues from the literature.

Issues of quality and accountability in social care for older people are of increasing importance. A key factor in determining quality is the extent to which older people themselves are satisfied with both the assessment of their needs and the services provided. The 1997 White Paper, Modernising Social Services, stated that local authorities will need to establish authority-wide objectives and performance measures to improve the quality and efficiency of services. In measuring quality, the White Paper stipulated that social service departments would need to design and administer satisfaction surveys as one means of capturing user and carer perceptions and experiences of services. This paper attempts to highlight some of the main issues to be considered when designing and conducting such surveys with older users of community care services. Through a review of the British and North American literature on older people's satisfaction with services, current approaches to measuring satisfaction are outlined and the relationship between the characteristics and circumstances of older people and their responses to satisfaction questions is examined. The paper concludes by offering some solutions to overcoming current problems by drawing conclusions about quality from survey findings, so that older people's opinions about the services they receive can begin to be assessed in a more meaningful way.