QualityRights, universal legal capacity and advance care planning
Obertament recently organized the 2nd annual debate conference: Cap Síntimo de discriminació , a space in which it was possible to delve deeper into the Planning of Advance Decisions (PDA) in mental health within the framework of QualityRights , the World Health Organization's (WHO) quality and rights instrument to improve and evaluate the quality and human rights in mental health and social support services.
One of the presentations of the day was given by Maria Lomascolo , head of the health sector at Obertament, Hernán Sampietro , social psychologist and spokesperson for Rights at Activament Catalunya Associació , and Elvira Rodríguez , social integrator and member of the First Person Mental Health Research Group (GR1P) . These speakers addressed the PDA as a strategy for defending mental health rights and the perspective of QualityRights.
In his speech, Lomascolo emphasized the importance of the right to legal capacity and the right to decide, rights that "are frequently denied in social and mental health services due to practices stemming from negative stereotypes and discriminatory attitudes."
Hernán Sampietro dedicated time to explaining that QualityRights place significant emphasis on the right to legal capacity and the right to decide, both of which are enshrined in the Convention on the Rights of Persons with Disabilities (UN, 2006).
Advance Care Planning in Mental Health
The Convention is based on a social-relational model of disability, which understands the person as a subject of rights with the capacity to make decisions, and that disability is not an essential condition of the person, but rather involves the environment and the barriers encountered within it. Article 12 states that:
- People with disabilities have the same rights and are equal before the law (equal legal personality).
- They must exercise their rights under equal conditions (equal legal capacity).
- States must provide a system of support to guarantee the two points above, always respecting the will and preferences of the person.
- These rights must also be guaranteed in circumstances where decision-making capacity may be affected, such as in a mental health crisis, through safeguards.
- Economic rights must also be able to be exercised on equal terms.
General Comment No. 1 defines and expands upon certain terms in Article 12 of the Convention related to universal legal capacity. In this regard, it is necessary to distinguish between mental capacity (the ability to make decisions, which can fluctuate throughout a person's life) and legal capacity (the legal capacity to act, which, as a universal attribute, cannot be limited by functional criteria, conditions, or outcome criteria such as risk assessments for oneself or others).
Article 12 obliges States to:
- Recognize universal legal capacity.
- Abolish regimes of substitution of legal capacity (e.g., guardianships).
- Establish decision support systems that will be voluntary for individuals (i.e., even though they have the right to receive support and safeguards to exercise their legal capacity, they can refuse it).
- Provide safeguards.
Safeguards are resources and mechanisms to ensure that the support offered is what the person wants it to be, or, as defined by the UN (2018), "they are intended to protect people in the provision of support, not to prevent them from making decisions or to protect them from the possibility of taking risks or making mistakes." One way to develop these safeguards is through Advance Care Planning, understood as a collaborative process that establishes preferences in the person's care and prepares them to cope with moments of greater suffering, crises, or clinical relapses. Unlike an Advance Directive (living will), Advance Care Planning is not legally binding and reflects an agreement between the parties.
- The affected person, who chooses who the other parties are.
- The professional, with the authority to ensure compliance with the PDA during a relapse.
- The person's support environment, which may include family, friends, other professionals, etc.
The PDA is situated within a rights-based and supported decision-making model of care, and therefore accepts error as a possibility (assumes the risk) and provides freedom of choice of alternatives.
Elvira Rodríguez reflects on some key points regarding advance healthcare directives, describing them as a useful but insufficient tool. She explains, for example, that:
- With the recent legislative changes, the legal capacity of people cannot be restricted, however, their competence can be questioned.
- Advance directives are legally binding, but they stipulate that expressed wishes should not be respected when they contradict good clinical practice; this is an open debate in this area. Furthermore, they cannot be interpreted.
In her presentation, Rodríguez highlights the progress made in applying a biopsychosocial approach to mental health , addressing all the issues surrounding the individual beyond the purely medical. She also emphasizes the clearly preventative function of the Individualized Care Plan (ICP) , which involves comprehensive work on the needs of the individual and their support network. By including the caregivers and those who support the person with a mental health problem in the process and in the preferences, it allows for addressing the needs of those within this support network, thus reducing the risk of psychological distress they may experience and preventing them from developing a mental disorder themselves.
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