Abstract
The current debate about the role and ethical aspects of ‘ultra-high risk’ (UHR) research and service provision highlights many of the contentious issues in the field (Jorm, 2011; McGorry, 2011; Rosenman and Anderson, 2001). While this debate persists, young people continue to participate in UHR research and continue to be seen at UHR clinics internationally. There is some agreement that these young people should be offered some kind of treatment, but opinion is divided on the type of treatment.
Rosenman and Anderson (2001) suggest that treatment should be based on the main presenting problem of the young person, which fits in with the proposition that by reducing non-psychotic symptoms and other stressors in the young person’s life (e.g. problems with housing), the likelihood of developing a psychotic disorder is reduced. This is also consistent with a client-centred approach to care, whereby the needs and preferences of the client shape the way in which treatment is delivered.
What is critical, regardless of the type of treatment, is due consideration of informed consent of young people and their caregivers to participation in research and clinical care at UHR services. This is essential when research involvement or care includes treatment options that have little or ambiguous evidence of effectiveness, and particularly important when novel or experimental treatment options are shown to have potential risks, for example, the side effects of antipsychotic medication.
In order to ensure judicious treatment planning and true informed consent for involvement in research, there is a need to communicate the potential risks and benefits of different treatment options. This information needs to be evidence-based, up to date, easily understandable (preferably in a format desired by the recipient/s) and offered routinely (i.e. not just to those who ask for it).
Shared decision-making (SDM) (Charles et al., 1997), with the use of decision support tools, is one way to achieve these goals. In doing so, preference-sensitive treatment decisions are made together by both clinician and client, and their caregiver where appropriate, after discussion about the potential risks and benefits of each option as well as the young person’s preferences around these choices.
In UHR research and service provision this is essential not only due to the uncertainty surrounding treatment options, but also because of the uncertainty of the ‘diagnosis’ or premise for treatment itself. The majority of young people identified using the UHR criteria will not go on to develop a psychotic disorder, and this number of ‘false positives’ has increased over time (Yung et al., 2007). The inclusion of a risk syndrome in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) could result in a significant increase in the numbers of young people ‘diagnosed’ with the syndrome, and therefore the number of false positives would rise dramatically.
Given the current limitations of accurately identifying truly prodromal clients, SDM offers a systematic way to ensure that the ‘ethical imperative’ (Drake and Deegan, 2009) to inform, involve and empower individuals meeting the UHR criteria is achieved. In doing so, the rights of the individual can be upheld as debate over the validity of the risk syndrome continues.