The right to decide in the context of mental health

On June 3, 2021, Law 8/2021, of June 2 , was published in the Official State Gazette (BOE), which initiates a process of reform of civil and procedural legislation to support people with disabilities, with the aim of guaranteeing the exercise of their full legal capacity.

This new reform represents a significant step forward in guaranteeing the rights of persons with disabilities, as established in the United Nations Convention on the Rights of Persons with Disabilities (New York, 2006). This convention describes disability as “an evolving concept that results from the interaction between persons with impairments and attitudinal and environmental barriers that limit their full and effective participation in society on an equal basis with others.” Therefore, it is crucial to consider variations in a person's level of activity over time. The Convention establishes that these individuals have legal capacity on an equal basis with others in all aspects of life and urges States to adopt appropriate measures to provide persons with disabilities access to the support they may need in exercising their legal capacity.

The recent legislative change is not merely a change in terminology; it aims to modify the approach to the right of people with disabilities to make decisions . The intention is for this new approach to be more accurate and to address situations that, until now, have been overlooked or ignored, such as the fact that people with disabilities have the right to make their own decisions.

Therefore, the term "support" will encompass all types of actions, from friendly accompaniment and technical assistance in communicating wishes, to adapting to architectural and other barriers, providing advice, and even delegating decision-making to the person with a disability. Furthermore, the legal figures of guardianship, extended parental authority, and reinstated parental authority are eliminated, as they are considered "poorly suited" to the system for promoting the autonomy of adults with disabilities that the law proposes.

Processes that did not adapt to people's changing needs

Until now, at the legislative level, with the aim of protecting people with disabilities, processes were carried out in Spain that until very recently were known as "total or partial judicial incapacitation." In the last five years, the terminology was changed to "legal modification of capacity," and some amendments were introduced to allow individuals to retain, for example, the right to vote. However, these changes have clearly been insufficient. Given that it is a judicial procedure, with all that this entails in terms of paperwork and the slowness of the process (sometimes taking more than two years), we have seen how this could not adapt to the evolving needs of individuals. Although this process has not been considered permanent or definitive, in practice, we know that there have been very few cases in which a person's capacity has been rehabilitated or their situation reviewed.

Remember that this process is the same one that was applied to people with neurological diseases, people with intellectual disabilities, or people with mental health problems.

In the field of mental health, it is clearly one of the areas where it is evident that this process did not at all fit the changing needs of people, due to the heterogeneity of mental illnesses, the course of the disease itself, individual characteristics and the difference in life expectancy of this group of people compared to the group of people with dementia.

Thus, sometimes we could find a judicial incapacitation process in a young person of 18 years, with a recent onset of mental illness, conditioning the rest of their life stages.

We know that there is a high degree of heterogeneity within the same mental health diagnosis, such as in schizophrenia, where we find people who can lead an autonomous life, following their usual health checks, and people with marked severity of symptoms and cognitive impairment, where their ability to make decisions is markedly affected and they will need more support.

Within this group, there is also enormous heterogeneity, ranging from individuals with long years of institutionalization, severe functional limitations, lack of social and familial support, and care needs focused on basic self-care, protection, and organization of daily life, to young people with associated substance abuse problems, behavioral disturbances, poor treatment adherence, and multiple readmissions. These are individuals with completely different needs that tend to change throughout their lives. Each situation has its own course and characteristics, and as we have mentioned, the degree of limitations can vary considerably from one person to another with the same diagnosis.

Growing trend of incapacitation proceedings

Nor can we forget that, in the countries of the European Union, the most conservative estimates indicate that each year 27% of the adult population (18-65 years old) suffers from a mental disorder , the most frequent being anxiety, depression, somatoform disorders, and substance use disorders (Wittchen & Jacobi, 2005). Obviously, most of these people will not require support, but we must not forget that mental health problems are a situation that can affect everyone at one time or another in their lives.

On the other hand, it is very important to highlight the growing increase in incapacitation proceedings carried out in recent years in Spain . If we review, for example, the public data reported by the Spanish Judiciary, we can see that in 2005 a total of 14,772 incapacitation proceedings were requested across all the autonomous communities, while just 10 years later, in 2015, the total number of requests was 29,701, more than double, and with an upward trend in subsequent years (Spanish Judiciary, 2015). Data on the total number of people declared incapacitated is not available, nor is data available on the specific pathologies or health conditions that may have motivated these proceedings.

The lack of studies that provide accurate knowledge and information on people's support needs, as well as their health status, cognitive profile (attention, language, memory, executive functions, intellectual level…), personal preferences and any variable that may affect the decision-making process is one of the main challenges when it comes to guaranteeing support for people.

It is clear that a thorough and detailed evaluation of the person, with their strengths and difficulties, as well as a collection of information on preferences and needs, will be key.

In this sense, documents such as the NICE guide, "Decision-making and mental capacity", recently revised in 2018, could be a key tool as one of the reference guides to help us better adapt to the new changes in this support process.

Along the same lines, a study initiated in 2017 at the Sant Joan de Déu Health Park is underway to understand the clinical, cognitive, and social profile of individuals with mental health conditions whose legal capacity to make decisions has been altered. We hope this study will contribute to generating useful knowledge for supporting decision-making within the mental health framework.

All of this must be accompanied by a process of training and development for professionals , a reorganization of certain departments, and a clear need to create faster and more flexible procedures. Furthermore, it will be necessary to monitor how all of this affects previous capacity modifications, because ethically, it will create an inequality between the old and new procedures.

The effort on the part of all parties involved will have to be magnanimous, in order to create this fair framework and ensure that this reform has an effective impact on all those who need it.