There is a large body of research on the use by persons with mental health conditions and psychosocial disabilities of various forms of advance planning (Weller, 2013). Advance planning includes practices variously described in English as ‘advance statements’, ‘advance directives’, ‘joint crisis planning’, and so on. These measures can help to avoid the type of crisis situations in which individuals are subject to coercive measures. Some research has considered the impact of various advance planning methods on reducing the use of coercive practices (see Barbui et al., 2020, p.5), with generally positive results, particularly in the most recent meta-analyses (see de Jong et al., 2016). Trends in mental health policy suggest a general agreement that advance planning is an important element in a suite of desirable practices, including as a means to reduce recourse to coercion and promote human rights (Weller, 2013). According to Chris Maylea and colleagues (2018):
psychiatric advance directives or similar documents have been legislated, implemented, or piloted in a number of jurisdictions. These include some states in the United States, Belgium, Ireland, Scotland, India, and England, Wales, and Canada. There is a wide variation in the legislative form. The documents may have no legal force, decision makers may have to ‘have regard’ to them, they may be overturned by a tribunal or other higher authority, or they may be entirely binding in certain circumstances. They may be used to offer advance consent to treatment, in effect ‘binding’ the person making them, which is sometimes described as a Ulysses clause, or they may be used to select, restrict, or refuse specific treatments, in effect ‘binding’ the treating team or other decision maker. Despite this variety, all of the models are intended to empower a person and assist in supporting their will and preferences.
Several COE Member States have some form of advance planning in mental health services. Examples from Spain and France are listed below.
ACP-Mental Health – Spain
In 2016 in Andalusia, Spain, for example, the Andalusian School of Public Health produced a guide for advance care planning in mental health (Submission 9, 28). The program is described as ACP-MH for short. The European Network of National Human Rights Institutions and Mental Health Europe (2020, p.18) describe the program as follows:
The aim is to promote the autonomy of persons with psychosocial disabilities and support people in their decision-making. Users can complete a document explaining symptoms they usually notice when entering in a crisis situation, what makes them feel good and bad when experiencing distress, who their contact person is, who they would allow to visit, the type of care they prefer in case of crises, persons who can take decisions for them, information about their general health, diet etc. This is then included in their medical record and made available to health professionals when they are unable to fully express their wishes and decisions.
This advance planning option for persons with mental health conditions and psychosocial disabilities in Andalusia formed part of a group of practices aimed at promoting human rights in services designed to assist people in mental distress and ill-health. Alongside the advance statement program, for example, was a reduction of mechanical restraint initiative that formed part of the broader Comprehensive Mental Health Plan of Andalusia (2016-2020). (See above here).
At present, uptake of ACP-MH is low, which is consistent with trends in the use of advance planning worldwide (see Weller, 2013). A research study carried out by the team found that ACP-MH processes in Andalusia varies among mental health services and professionals. Most participants, both users and professionals, consider ACP-MH as a useful tool to respect user’s preferences. Reported benefits include a better relationship and communication between professionals and users, greater participation of users in their process of illness, users’ feeling of respect, better self-knowledge and autonomy to manage their mental health problems. Reported weaknesses include the lack of guarantee that user’s preferences will be followed, or even consulted by professionals who will take care of patients in the moment decisions need to be taken. Availability and viability of the options selected by users can also become a limitation. Most professionals reported a lack of teamwork, and stated that some colleagues do not believe in ACP-MH, since they are ‘stuck in an old model where only professionals know what is best for patients’ (Submission 28). Some also think that the entire system needs to change in order to accept and introduce ACP-MH as one more right that needs to be respected. The research concluded that mental health services in Andalusia need more information, teamwork and training on ACP-MH. The tool requires services to evolve into a model of a ‘professional-user relationship based on communication and acceptance that users have rights, among them discussing and choosing their mental health preferences for the future’ (Submission 28). More information, training and coordination in mental health services is required in order to respect user’s rights related to autonomy and decision making
‘My GPS’ – France
‘My GPS - A Guide to Prevention and Care’ (‘My GPS’ for short) is a booklet created for and with people with mental health conditions and psychosocial disabilities. The booklet provides a way for each person to express their wishes in advance of a crisis. Information can be organised under headings such as: ‘What helps me when I am not well?’, or ‘What wishes I would like to have respected if I am hospitalised’. The My GPS kit has been designed primarily for mental health crisis situations. However, much of the information in the booklet is intended to prevent crisis and hospitalisation. The questions in the booklet prompt the person to reflect on the nature of previous crises in her/his life, her/his preferences, and ideas about what she/he thinks helps her/him and what does not help during periods of crisis. A person can refer to My GPS when they start to feel unwell, and others around them can draw on the booklet to support the person more effectively.
More generally, My GPS aims to:
- Promote autonomy, and voluntary support that that takes account of the person's choices
- Promote consultation between users, professionals and/or relatives concerning individual care and support
- Promote the active involvement of the person in his/her recovery
- Promote shared decision making
If a person does enter hospital, or is involuntarily detained, mental health professionals may refer to the My GPS guide to identify and respect, as far as possible, the person's wishes and needs (Submission 26B). However, the information contained in the booklet is intended to avoid crisis and hospitalisation.
The My GPS educational kit was developed by Marie Condemine and Ofelia Lopez Hernandez (psychologists, PRISM Association), in partnership with ‘Psycom’. It was reportedly developed through ‘a participatory approach, with people living with a mental disorder, relatives, health and social professionals’ (Submission 26B). The My GPS educational kit was awarded the Jury's prize in the Health Users' Rights 2020 competition by the French Ministry of Solidarity and Health, and was granted the Health Users' Rights 2020 label by the Ile-de-France Regional Health Agency (Submission 26B).