Human rights and early intervention: ethics as a positive force

As a medical student in the 1970s, my deep concern about the civil rights of the mentally ill was one of the main reasons for my interest in psychiatry and which ultimately inspired me to enter the field. These were “negative rights” which needed to be addressed and still do.

Galderisi et al¹ devote most of their paper to the protection of these civil rights. Less extensively addressed are the “positive rights”, that is the economic, social and cultural rights of the mentally ill. This includes the structural neglect of the mentally ill within the health care and medical research systems across all societies, including high-income countries².

A global average of just around 2% of the health care budget is spent on the care of the mentally ill. Even in WEIRD (Western, Educated, Industrialized, Rich and Democratic) countries of the Global North, access to and quality of care are dramatically lower than for physical illness, such as cancer and cardiovascular diseases.

This gross global neglect is a major driver of coercive cultures of care, which in turn are an inevitable result of late intervention, with treatment only being offered as a last resort. Neglect also contributes to high rates of premature death from suicide and preventable and treatable medical causes, marginalization and immiseration.

In 2023, the World Mental Health Day celebrated mental health as a universal human right. However, the meaning of this – as eloquently argued by Patel³ – is ideologically loaded. He points out that the population has the right to be protected from “known harms to mental health”. Such harms result from government policies and new megatrends that have created powerful structural forces which undermine mental health and produce higher levels of mental ill-health. They do so through creating increased poverty and marginalization, disproportionate exposure to violence and displacement, and surging wealth inequality.

The paradigm shift that began in the early 1990s to make early intervention a belated addition to the spectrum of treatment and care in psychiatry should be seen as part of the response to the above gross global neglect. Early intervention began within the field of schizophrenia and psychotic disorders and profoundly challenged and ultimately transformed this field. Subsequently it spread as a principle and goal across the full spectrum of mental disorders.

With K. Schaffner, I co-edited a special issue of Schizophrenia Research in 2001 on the ethics of early detection and intervention in schizophrenia. The main topic clearly is the balance between non-maleficence and beneficence, or risks versus benefits. Galderisi et al focus on the clinical high risk (CHR) for psychosis field in discussing the relevant issues. Ultra high risk (UHR) – or, in the US, CHR – is a concept that my colleagues and I introduced and operationally defined in the early 1990s. Proof of concept then led to our formulation of a wider transdiagnostic clinical and research framework, the clinical staging model, which allows ethical issues to be considered while enhancing the clinical utility of diagnosis⁴.

The ethical issues in psychiatry are very similar to those which apply in medicine generally, with the added complexity of enhanced stigma and challenges in establishing competency to give informed consent in certain obvious circumstances. The goal of early intervention is to reduce the impact of a potentially serious and persistent illness, via either cure or disease modification and amelioration. This means a proactive approach to treatment rather than a reactive and delayed one, which is in itself manifestly harmful, while guarding against over-treatment of patients, which may unnecessarily expose them to harmful effects. Clinical research has helped to define this “sweet spot”.

While Galderisi et al ultimately come to a largely valid set of conclusions, their account of the CHR literature and field is somewhat US- and UK/Euro-centric, with a tendency to rely on meta-analyses rather than work of those who conducted and interpreted the landmark studies in the field. Furthermore, the critiques of the CHR concept and its value are fully cited, while the rebuttals are mostly not, particularly those demonstrating the value of offering interventions at this stage in terms of ameliorating and perhaps even delaying transition⁵. The studies supporting the cost-effectiveness of intervening in the CHR stage, and those showing that positive predictive values can be enhanced through such strategies as risk calculators or joint modelling⁶, are neglected.

Finally, the research on stigma is more mixed than the authors suggest. Crucially, this is a risk that can be minimized through communicating in an accurate but broadly optimistic manner about care for current needs and future potential risk, not merely of psychosis, but of ongoing symptoms and disability. Stigma can also be greatly reduced by offering the care in youth-friendly, co-designed settings, and not in clinics which also provide care to older patients with longer-standing and established psychotic illness.

Nevertheless, consistent with my own experience over 30 years of treating such patients, the authors do ultimately conclude that offering care to help-seeking young people with genuine warning signs of psychosis, along with other comorbid symptoms and functional impairment, which may turn out to be the first stage of a sustained psychotic disorder, is of definite value under the right conditions.

One of the valid points raised by critics of the CHR concept is that the standalone, “pure” or narrow-cast CHR clinic model, relying on passive help-seeking alone, implies that only a small percentage of those who manifest the CHR phenotype and who progress to a fully-fledged stage of sustained or “first episode” psychosis are able to be engaged, with the remainder entering care via emergency departments and other pathways when they have already crossed the boundary to psychosis.

Galderisi et al are correct to state that universal, one-step screening strategies are not the appropriate solution to this problem. Instead, the enhanced primary care or integrated youth services model of care, as developed in Australia and subsequently in many other countries⁷, is a potential solution. For example, we were able to recruit 310 CHR patients from a local headspace system for a clinical trial in just over 2 years⁸, and we estimated that at least 20-30% of all patients who access headspace services experience attenuated psychotic symptoms.

However, the advantages of such a “soft entry”, co-designed, and therefore low-stigma and youth-friendly portal and care environment are much broader. They allow early intervention across the full spectrum of emerging mental ill-health in young people, and dilute the need to focus on specific trajectories of illness. Young people can be helped with their presenting clinical issues and their broader needs, including vocational support and other personal and social needs.

More general statements can be made about the need to act now, aiming to prevent the symptoms and syndromes getting worse or developing into other or additional problems. This approach is well accepted, and even the introduction of such terms as bipolar or psychosis can be held without the deterministic and pessimistic shadows that traditional psychiatry tends to cast.

Headspace has operated in Australia for 18 years and is now in over 160 communities. It has had its opponents, as do all genuine reforms. However, the rebuttals that dealt with these critiques are sometimes overlooked. Ultimately, this is a model of care with strong consumer and community support, and a recent independent evaluation has confirmed that it is effective and cost-effective, particularly for early stage and mild-to-moderate levels of disorder⁹. Similar studies have been conducted in a range of service settings in Europe and Canada.

Future progress will depend on strengthening the clinical capacity of these frontline primary care platforms, and backing them up with options for more specialized multidisciplinary care for later stages of illness.