Supported decision making: a review of the international literature

Supported decision making (SDM) refers to the process of supporting people, whose decision making ability may be impaired, to make decisions and so promote autonomy and prevent the need for substitute decision making. There have been developments in SDM but mainly in the areas of intellectual disabilities and end-of-life care rather than in mental health. The main aim of this review was to provide an overview of the available evidence relevant to SDM and so facilitate discussion of how this aspect of law, policy and practice may be further developed in mental health services. The method used for this review was a Rapid Evidence Assessment which involved: developing appropriate search strategies; searching relevant databases and grey literature; then assessing, including and reviewing relevant studies. Included studies were grouped into four main themes: studies reporting stakeholders’ views on SDM; studies identifying barriers to the implementation of SDM; studies highlighting ways to improve implementation; and studies on the impact of SDM. The available evidence on implementation and impact, identified by this review, is limited but there are important rights-based, effectiveness and pragmatic arguments for further developing and researching SDM for people with mental health problems.

The right to supported decision-making for people rarely heard

 This thesis explored supported decision-making for people with severe or profound intellectual disability. The findings provide guidance to supporters and policy makers to assist people with severe or profound intellectual disability to lead maximally autonomous lives, a clear obligation of Australia under the Convention on the Rights of Persons with Disabilities.

The right to supported decision-making for people rarely heard

This thesis explored supported decision-making for people with severe or profound intellectual disability. The findings provide guidance to supporters and policy makers to assist people with severe or profound intellectual disability to lead maximally autonomous lives, a clear obligation of Australia under the Convention on the Rights of Persons with Disabilities.

An international comparison of legal frameworks for supported and substitute decision-making in mental health services

There have been important recent developments in law, research, policy and practice relating to supporting people with decision-making impairments, in particular when a person’s wishes and preferences are unclear or inaccessible. A driver in this respect is the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the implications of the CRPD for policy and professional practices are currently debated. This article reviews and compares four legal frameworks for supported and substitute decision-making for people whose decision-making ability is impaired. In particular, it explores how these frameworks may apply to people with mental health problems. The four jurisdictions are: Ontario, Canada; Victoria, Australia; England and Wales, United Kingdom (UK); and Northern Ireland, UK. Comparisons and contrasts are made in the key areas of: the legal framework for supported and substitute decision-making; the criteria for intervention; the assessment process; the safeguards; and issues in practice. Thus Ontario has developed a relatively comprehensive, progressive and influential legal framework over the past thirty years but there remain concerns about the standardisation of decision-making ability assessments and how the laws work together. In Australia, the Victorian Law Reform Commission (2012) has recommended that the six different types of substitute decision-making under the three laws in that jurisdiction, need to be simplified, and integrated into a spectrum that includes supported decision-making. In England and Wales the Mental Capacity Act 2005 has a complex interface with mental health law. In Northern Ireland it is proposed to introduce a new Mental Capacity (Health, Welfare and Finance) Bill that will provide a unified structure for all substitute decision-making. The discussion will consider the key strengths and limitations of the approaches in each jurisdiction and identify possible ways that further progress can be made in law, policy and practice.

Evolution and innovation in guardianship laws: Assisted decision-making

Guardianship laws in most Western societies provide decision-making mechanisms for adults with impaired capacity. Since the inception of these laws, the principle of autonomy and recognition of human rights for those coming within guardianship regimes has gained prominence. A new legal model has emerged, which seeks to incorporate ‘assisted decision-making’ models into guardianship laws. Such models legally recognise that an adult’s capacity may be maintained through assistance or support provided by another person, and provide formal recognition of the person in that ‘assisting’ role. This article situates this latest legal innovation within a historical context, examining the social and legal evolution of guardianship laws and determining whether modern assisted decision-making models remain consistent with guardianship reform thus far. It identifies and critically analyses the different assisted decision-making models which exist internationally. Finally, it discusses a number of conceptual, legal and practical concerns that remain unresolved. These issues require serious consideration before assisted decisionmaking models are adopted in guardianship regimes in Australia.

Reinforcing guardianship regimes through assisted decision-making : a Scottish perspective

Guardianship laws which provide legal mechanisms for decision-making on behalf of adults with limited or impaired capacity to make decisions have become a feature of most Western jurisdictions. In the UK, the Adults with Incapacity (Scotland) Act 2000 and the English and Welsh Mental Capacity Act 2005 have established a comprehensive framework for authorising medical, financial and welfare decisions to be taken on behalf of adults who are unable to take any or all such decisions themselves. One feature of guardianship regimes has been their tendency to evolve over time. Legal reforms have been instigated by the changes in philosophical views about how society should engage with adults with a decision-making impairment and also modern views about the role human rights play in guardianships regimes. The latest ideas in guardianship regimes around the Western world centre on the possibility of legal recognition of the concept of assisted decision-making...

Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4), allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of supporters having positive assumptions of decision-making capacity as a factor affecting supported decision-making. This commentary aims to give a focus for practice and policy efforts for ensuring people with severe or profound cognitive disability receive appropriate support in decision-making, a clear obligation of signatory nations of the UNCRPD. A focus on changing supporter attitudes rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Communicative and Anticipatory Decision-making Supported by Bayesian Networks

The purpose of this research is to draw up a clear construction of an anticipatory communicative decision-making process and a successful implementation of a Bayesian application that can be used as an anticipatory communicative decision-making support system. This study is a decision-oriented and constructive research project, and it includes examples of simulated situations. As a basis for further methodological discussion about different approaches to management research, in this research, a decision-oriented approach is used, which is based on mathematics and logic, and it is intended to develop problem solving methods. The approach is theoretical and characteristic of normative management science research. Also, the approach of this study is constructive. An essential part of the constructive approach is to tie the problem to its solution with theoretical knowledge. Firstly, the basic definitions and behaviours of an anticipatory management and managerial communication are provided. These descriptions include discussions of the research environment and formed management processes. These issues define and explain the background to further research. Secondly, it is processed to managerial communication and anticipatory decision-making based on preparation, problem solution, and solution search, which are also related to risk management analysis. After that, a solution to the decision-making support application is formed, using four different Bayesian methods, as follows: the Bayesian network, the influence diagram, the qualitative probabilistic network, and the time critical dynamic network. The purpose of the discussion is not to discuss different theories but to explain the theories which are being implemented. Finally, an application of Bayesian networks to the research problem is presented. The usefulness of the prepared model in examining a problem and the represented results of research is shown. The theoretical contribution includes definitions and a model of anticipatory decision-making. The main theoretical contribution of this study has been to develop a process for anticipatory decision-making that includes management with communication, problem-solving, and the improvement of knowledge. The practical contribution includes a Bayesian Decision Support Model, which is based on Bayesian influenced diagrams. The main contributions of this research are two developed processes, one for anticipatory decision-making, and the other to produce a model of a Bayesian network for anticipatory decision-making. In summary, this research contributes to decision-making support by being one of the few publicly available academic descriptions of the anticipatory decision support system, by representing a Bayesian model that is grounded on firm theoretical discussion, by publishing algorithms suitable for decision-making support, and by defining the idea of anticipatory decision-making for a parallel version. Finally, according to the results of research, an analysis of anticipatory management for planned decision-making is presented, which is based on observation of environment, analysis of weak signals, and alternatives to creative problem solving and communication.

Developing a multi-dimensional scale for ethical decision making: the managerial ethical profile (MEP)

This article describes the development and validation of a multi-dimensional scale for measuring managers’ perceptions of the range of factors that routinely guide their decision-making processes. An instrument for identifying managerial ethical profiles (MEP) is developed by measuring the perceived role of different ethical principles in the decision-making of managers. Evidence as to the validity of the multidimensionality of the ethical scale is provided, based on the comparative assessment of different models for managerial ethical decision-making. Confirmatory Factor Analysis (CFA) supported a eight-factor model including two factors for each of the main four schools of moral philosophy. Future research needs and the value of this measure to business ethics are discussed.

Impact of a data warehouse model for improved decision-making process in healthcare

The health system is one sector dealing with a deluge of complex data. Many healthcare organisations struggle to utilise these volumes of health data effectively and efficiently. Also, there are many healthcare organisations, which still have stand-alone systems, not integrated for management of information and decision-making. This shows, there is a need for an effective system to capture, collate and distribute this health data. Therefore, implementing the data warehouse concept in healthcare is potentially one of the solutions to integrate health data. Data warehousing has been used to support business intelligence and decision-making in many other sectors such as the engineering, defence and retail sectors. The research problem that is going to be addressed is, "how can data warehousing assist the decision-making process in healthcare". To address this problem the researcher has narrowed an investigation focusing on a cardiac surgery unit. This research used the cardiac surgery unit at the Prince Charles Hospital (TPCH) as the case study. The cardiac surgery unit at TPCH uses a stand-alone database of patient clinical data, which supports clinical audit, service management and research functions. However, much of the time, the interaction between the cardiac surgery unit information system with other units is minimal. There is a limited and basic two-way interaction with other clinical and administrative databases at TPCH which support decision-making processes. The aims of this research are to investigate what decision-making issues are faced by the healthcare professionals with the current information systems and how decision-making might be improved within this healthcare setting by implementing an aligned data warehouse model or models. As a part of the research the researcher will propose and develop a suitable data warehouse prototype based on the cardiac surgery unit needs and integrating the Intensive Care Unit database, Clinical Costing unit database (Transition II) and Quality and Safety unit database [electronic discharge summary (e-DS)]. The goal is to improve the current decision-making processes. The main objectives of this research are to improve access to integrated clinical and financial data, providing potentially better information for decision-making for both improved from the questionnaire and by referring to the literature, the results indicate a centralised data warehouse model for the cardiac surgery unit at this stage. A centralised data warehouse model addresses current needs and can also be upgraded to an enterprise wide warehouse model or federated data warehouse model as discussed in the many consulted publications. The data warehouse prototype was able to be developed using SAS enterprise data integration studio 4.2 and the data was analysed using SAS enterprise edition 4.3. In the final stage, the data warehouse prototype was evaluated by collecting feedback from the end users. This was achieved by using output created from the data warehouse prototype as examples of the data desired and possible in a data warehouse environment. According to the feedback collected from the end users, implementation of a data warehouse was seen to be a useful tool to inform management options, provide a more complete representation of factors related to a decision scenario and potentially reduce information product development time. However, there are many constraints exist in this research. For example the technical issues such as data incompatibilities, integration of the cardiac surgery database and e-DS database servers and also, Queensland Health information restrictions (Queensland Health information related policies, patient data confidentiality and ethics requirements), limited availability of support from IT technical staff and time restrictions. These factors have influenced the process for the warehouse model development, necessitating an incremental approach. This highlights the presence of many practical barriers to data warehousing and integration at the clinical service level. Limitations included the use of a small convenience sample of survey respondents, and a single site case report study design. As mentioned previously, the proposed data warehouse is a prototype and was developed using only four database repositories. Despite this constraint, the research demonstrates that by implementing a data warehouse at the service level, decision-making is supported and data quality issues related to access and availability can be reduced, providing many benefits. Output reports produced from the data warehouse prototype demonstrated usefulness for the improvement of decision-making in the management of clinical services, and quality and safety monitoring for better clinical care. However, in the future, the centralised model selected can be upgraded to an enterprise wide architecture by integrating with additional hospital units’ databases.

Career decision making among gifted students : the mediation of teachers

There is international concern about falling enrollments in higher education, particularly the sciences, by gifted students. In this mixed method study, the top performing 200 students (approximately 1%) within a particular education jurisdiction at the beginning of their first year at university were surveyed and 20 interviewed about their school experiences using a biographical interpretive design. This study focussed on identifying those characteristics of teachers which supported students’ interests. Participants identified seven characteristics of teachers that students identified as supportive of their potential career pathways. These included connecting pedagogical practices with student interests, being passionate about their subject matter, having good content knowledge, making learning experiences relevant, setting high expectations of students, being a good explainer of complex ideas, and being a good classroom manager. This study extends our knowledge of how teachers influence gifted students and has implications for both pre-service and in-service teacher education and career counselling.

Shared decision making in patients at risk of cancer: The role of domain and numeracy

Background
Shared decision making has become an integral part of medical consultation. Research has, however, reported wide differences in individuals' desires to be involved in the decision-making process, and these differences in preferences are likely to be the result of a number of factors including age, education and numeracy.

Objective
To investigate whether patients at genetic risk for cancer had preferences for shared decision making that differed depending on medical domain (general health vs. cancer) and whether decision preferences are linked to numeracy abilities.

Methods
Four hundred and seventy-six women who consented to participate in response to an email sent by a local branch of the U.S.-based Cancer Genetics Network (CGN) to its members. Participants completed the Control Preference Scale, as well as an objective and subjective numeracy scales.

Results
Decision domain (cancer vs. general health) was not associated with women's preferences for involvement in decision making. Objective and subjective numeracy predicted a preference for decision involvement in general, and only objective numeracy was predictive with regard to cancer.

Conclusion
Participants were equally likely to state they wanted to play an active, collaborative or passive role in both medical domains (general and cancer). High-numeracy participants were more likely to express a desire for an active role in general and in case they were diagnosed with cancer.

Practice implications
Health authorities' recommendations to clinicians to include patients in their medical decisions are supported by patients' desires, and clinicians should be cognizant of their patients' preferences as well as their numeracy skills.