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.

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.

The decision-making journey of a family carer : information and social needs in a cultural context

While the important role of family as carer has been increasingly recognised in healthcare service provision, particularly for patients with acute or chronic illnesses, the carer's information and social needs have not been well understood and adequately supported. In order to provide continuous and home-based care for the patient, and to make informed decisions about the care, a family carer needs sufficient access to medical information in general, the patient's health information specifically, and supportive care services. Two key challenges are the carer's lack of medical knowledge and the many carers with non-English speaking and different cultural backgrounds. The informational and social needs of family carers are not yet well understood. This paper analyses the web-log of a husband-carer who provided support for his wife, who at the time of care was a lung cancer patient. It examines the decision-making journey of the carer and identifies the key issues faced in terms of informational and social practices surrounding care provision.

Ethically defensible decision-making in health care: challenges to traditional practice

The concept of paternalism is deeply entrenched in health care. Decision-making about health care can be extremely difficult at times, and many competing interests may influence the outcomes. However, ethically defensible practice aligns itself with acknowledging the patient's prima facie right to be treated as an autonomous individual. This includes the patient's right to make informed decisions or to decide that other(s), such as the close family, should make decisions on his or her behalf. (author abstract)

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.

Role of knowledge and ability in student nurses` clinical decision-making

Little is known about the acquisition of decision-making skills in nursing students as a function of experience and academic ability. Knowing how experience and academic skills interact may help inform clinical education programs and formulate ways of assessing students' progress. The aims of the present study were to develop a problem-solving task capable of measuring clinical decision-making skills in novice nurses at different levels of domain-specific knowledge; and to establish the relative impact on decision-making of domain-specific knowledge and general ability as determinants of the acquisition of decision-making skills. Three types of clinical problems of increasing complexity were developed. Sixty second-year and third-year student nurses with high and low academic scores were studied in terms of their ability to generate hypotheses for a hypothetical case, recognize disconfirming information and the need to access additional information, and diagnostic accuracy. The results showed that general academic ability and knowledge function partly independently in the acquisition of expertise in nursing. Academic ability affects decision-making in low complexity tasks, but as case complexity increases, domain-specific knowledge and experience determines decision-making skills. There are important differences in the way novices with different levels of knowledge and ability make clinical decisions and these can be studied by systematically increasing the complexity of the decision task. These results have implications for the way in which clinical education is structured and evaluated.

Hemodynamic team decision making in the cardiac surgical intensive care context

Purpose
The purpose of this study was to explore the extent and sources of variability of critical care nurses’ hemodynamic decision making as a function of contextual factors in the immediate 2-hour period after cardiac surgery.

Methods
A qualitative exploratory design with observation and interview was used. Eight critical care nurses were observed on different occasions in clinical practice for a 2-hour period. A brief interview immediately followed each observation to clarify observation data.

Findings
Analysis of the data revealed that patient management decisions were made both by individual nurses and by a team of nurses and health professionals. Team decision making (TDM) is described in this study as integrated or non-integrated and refers to an intra-professional nursing team. During displays of integrated TDM, the primary nurse, who was assigned to care for the patient, made most hemodynamic decisions and nurses who assisted the primary nurse deferred decisions. During displays of non-integrated TDM, nurses assisting the primary nurse assumed responsibilities for most patient-related decisions. Non-integrated TDM occurred more frequently when inexperienced cardiac surgical intensive care nurses were in the role of primary nurse, whereas integrated TDM was more common among experienced cardiac surgical intensive care nurses.

Conclusions
This observed variability can occur in multiple ways and in hemodynamic decision making has implications for patient outcomes as behaviors of non-integrated TDM led to nurses sensing a loss of control of patient management.

Naturalistic decision making: a model to overcome methodological challenges in the study of critical care nurses` decision making about patients` hemodynamic status

The quality of critical care nurses' decision making about patients' hemodynamic status in the immediate period after cardiac surgery is important for the patients' well-being and, at times, survival. The way nurses respond to hemodynamic cues varies according to the nurses' skills, experiences, and knowledge. Variability in decisions is also associated with the inherent complexity of hemodynamic monitoring. Previous methodological approaches to the study of hemodynamic assessment and treatment decisions have ignored the important interplay between nurses, the task, and the environment in which these decisions are made. The advantages of naturalistic decision making as a framework for studying the manner in which nurses make decisions are presented.

Sexual decision making in young women

Research over the last 30 years has examined the way in which young people make decisions about participating in sexual behaviours. This research is limited in that theoretical developments in the area have either not been subjected to empirical scrutiny, or are not consistent with empirical findings. The current study used a modified form of the Theory of Planned Behavior (TPB) as a theoretical position for a longitudinal exploration (over a 6-month period) of sexual decision making in a group of young adult women. One hundred and fifty-six young women aged between 18 and 21 years were involved in the study. Regression analysis were used to evaluate the predictors of intention to engage in six types of sexual behaviours at time 1, as well as experiences of these behaviours at time 2. The study found that intention to engage in sexual behaviour was reasonably well predicted using the constructs of TPB. However, behaviour was not well predicted using the variables in TPB, with the most important predictors of most sexual behaviours being past experience and perceived behavioural control, but not intention to engage in the behaviours. Implications of these findings and directions for future research are discussed.