Truth of the matter was, stories was everything and everything was stories. Everybody told stories, it was a way of saying who they were in the world. It was their understanding of themselves. It was letting themselves know how they believed the world worked, the right way and the way that was not so right.
Harry Crews, Searching for the Wrong-Eyed Jesus
Psychosis, Schizophrenia and Early Intervention
Over a lifetime, about 1% of the population will develop psychosis or schizophrenia. While genetics is reshaping our understanding of the etiology of mental illness, Early Intervention in Psychosis (EIP) services are being widely implemented by the NHS in the United Kingdom.
Early detection and intervention in psychosis can improve clinical outcomes and prevent some of the harms associated with schizophrenia (see Amminger et al., 2011). However, given the young age of the majority of people admitted to EIP services, the success of the early intervention strategy relies on how the service is delivered.
The implementation of clinical guidance offered to healthcare professionals working in EIP underlines the importance of good clinical practice, both with regard to service delivery and patient engagement. But what constitutes “good” practice in EIP services? How do we define it? What are our sources when we try to define “good” and “practice”?
Stigma, ethics and fear
Many ethical issues have been identified regarding the implementation of EIP services: the stigma associated with an early diagnosis, risk-benefit ratio in the provision of pharmacological treatment, the necessity to tailor services to a young and heterogeneous population, the needs of the family and carers involved, and the obligation to maintain privacy and confidentiality.
Yet, fear remains the main ethical issue.
As stigma arises from a lack of understanding of mental illness, fear is a genuine reaction to what is unknown, to that unknown which is experienced as a threat to agency and personal identity.
Particularly, the onset of psychotic symptoms is often experienced as a loss of personal identity.
During the “Early Intervention in Psychosis: the Next Generation” conference held in Oxford on the 5th of February 2016, David Shiers, clinical advisor to the National Audit of Schizophrenia, described the onset of psychotic symptoms as characterized by the “feeling of not being in control of what is happening”.
Fear stands at the onset of schizophrenia, and fear is what patients and families share at the onset of the first psychotic symptoms. In this sense, “not being in control of what is happening” could be used as a good definition of lack of autonomy.
As such, it represents not only a call for action for our healthcare system, but also a major concern for clinical ethicists.
Clinical guidelines and sources of good practice
Following the Early Psychosis Declaration of 2005, several countries have started developing clinical guidelines for EIP services. Australia, United Kingdom, Norway, Ontario, British Columbia have all tackled the need for sound professional guidance in EIP services.
In 2005, the International Early Psychosis Association (IEPA) published the International Clinical Practice Guidelines for Early Psychosis, in order to summarize what international efforts had identified as key standards of good clinical practice in EIP services.
In the United Kingdom, clinical guidance for EIP is provided by the IRIS Network and by the National Institute for Health and Care Excellence (NICE). Guidelines, Quality Standards, Pathways and Implementation Tools are specifically designed to inform clinical practice and provide healthcare professionals with standardized advice to implement EIP services.
Clinical guidelines provided by IRIS and NICE are codes of conduct, the main sources of content for implementing “good practice” in EIP.
Ethics, morals and hope in Early Intervention in Psychosis
Clinical guidelines for EIP identify ethical requirements of EIP service delivery: social inclusion, privacy, confidentiality, equal access to services, good communication, and shared decision-making.
Furthermore, guidelines describe what can be referred to as the “moral attributes” required of healthcare professionals working in early Intervention for psychosis: competency, awareness, responsibility, being supportive, and ability to build trust with service users and families.
Using a more outdated definition, all these moral attributes could be termed “virtues”.
Yet, it must be pointed out that if fear stands at the onset of psychosis and schizophrenia, the main ethical requirement of EIP services delivery is to provide hope.
“…Provide help, treatment and care in an atmosphere of hope and optimism” is recognised as a standpoint of prevention and management of psychosis and schizophrenia in children, adolescents and adults. (See NICE, CG178).
As such, hope is at the same time an ethical requirement of service delivery and a moral attribute of healthcare professionals. Therefore, hope stands at the core of good practice in EIP services, and it probably represents the most important value, or virtue, that healthcare professionals working in EIP services should cultivate.
Bringing hope into EIP services can help service users, carers and healthcare professionals know how they believe the world works, the right way and the way that is not so right.
About the Author
Paolo Corsico is a Research Assistant at the Department of Psychiatry, University of Oxford. He works on the Early Intervention Ethics in Psychosis (Psychosis: EIE) study under the BeGOOD flagship project.