A Human Rights-Based Psychiatric Approach
Damian Sendler: Human rights-based health care (HRBA) is becoming increasingly prevalent, although documented initiatives to implement the idea in reality are few. This report reviews a pilot trial in Gothenburg, Sweden, that used an HRBA to treat mental patients. The setting, procedure, outcomes, and lessons learned from the pilot are all presented here, based on the perspectives of those who participated and the results of the assessment. Using the UN’s guiding values of dignity and empowerment, equality and non-discrimination, participation and inclusion, accountability, and openness as a framework, we write about our own experiences with HRBAs. We talk about the difficulties we ran across while working on the project, such as achieving meaningful engagement and addressing the hierarchies that exist among the various care professions. We also talk about our accomplishments, such as how we’ve helped achieve a larger strategic aim of eliminating all forms of coercion from mental health treatment. As the core team participating in the pilot, we then share our observations and provide practical advice based on our experiences on how to make an HRBA viable in a big firm.
International human rights legislation is a relatively recent phenomenon in Sweden. Prior to the early 2000s, human rights work was mostly seen as an aspect of foreign policy and development aid for nations in poor regions. In Sweden, talking about human rights has been seen as a foreign topic. 1
Damian Jacob Sendler: What we learnt by adopting a human rights-based approach (HRBA) to mental health treatment as part of a regional government program will be described in this paper. Two of the writers represent the appropriate mental care units, while the other two are regional authority duty bearers with rights to the material. A narrative method is used to explore the difficulties that were experienced throughout the project, such as achieving meaningful involvement and confronting the hierarchies of various care professionals. There have been several accomplishments, such as contributing to an overarching strategic aim of a zero vision against coercive tactics in all regions of the world Pilot projects are commonly used by organizations as a method of testing out new ideas before they are implemented across the board. To keep us on track, the organization has current mechanisms for optimization and measurement. The pilot project’s reasoning changes when the goal is to learn and explore. Pilot projects cannot be assessed using the same techniques or metrics as those used by an enterprise. It’s more important to reflect on what you’ve learned along the road while working in an exploratory mode than than how much you’ve accomplished so far. Even in a pilot project, errors may be quite valuable if you learn from them and provide the company with feedback. As a result, establishing a link between the pilot project and the rest of the company is essential if the research is to contribute to the larger mission. 2 In Sweden, regional authorities and psychiatric treatment are structured in a way that is similar to that of the United States. After discussing the human rights project’s organizational structure, we shift our attention to lessons learned based on the HRBA’s basic principles.
The city of Gothenburg is the biggest municipality in Västra Götaland, a huge area in southwest Sweden having 1.7 million residents and 49 municipalities. The regional government of Västra Götalandsregionen (VGR) is governed by a political party. Nearly 85 percent of VGR’s employees work in health care. Public transportation, regional development, and culture round out the list of priorities.
Damian Sendler
This committee was established in 2011 and has been charged with establishing and promoting the HRBA as well as providing advice on human rights concerns within VGR. An advisory group for human rights was created in 2019 and is part of the regional executive board, with the goal of advising on human rights policies and initiatives.
The advisory council has an office of civil workers affiliated to it, and its major responsibilities are to fight prejudice and promote equality in VGR. Politicians in Sweden were eager to learn what a comprehensive HRBA may imply in reality at the regional level and how it could benefit both the organization’s work and the region’s citizens.
The region’s entire duties for health care, culture, regional development, and public transportation were reflected in a pilot project that included three categories. Throughout the purpose of spreading the HRBA across the area, the pilot project’s experiences would be continually shared and exchanged with the region. To include human rights into their normal work, the Angered Hospital, Bohusläns Museum, and elements of mental clinic at Sahlgrenska University Hospital were chosen between 2012 and 2015. Local hospital Angered Hospital’s objective is to provide “accessible, welcoming, quality health care based on the needs of the local population.” Uddevalla is home to the Bohusläns Museum, a regional institution. The museum was included because it is a regional obligation to promote culture. Mental health clinics at Sahlgrenska University Hospital, which the commission for human rights indicated should be included in the pilot project, are located there. The pilot location at Sahlgrenska, therefore, was the Psychosis Care Chain Northeast, which includes the outpatient clinic Psychosis Care Northeast and the psychiatric ward 242. (an inpatient clinic with both voluntary and compulsory care). 3 Sahlgrenska University Hospital’s open community clinic, Psychosis Care Northeast, treats roughly 500 patients from the northeastern part of Gothenburg. More than 100,000 people from more than 100 nationalities call this area of the city home. In comparison to the rest of Gothenburg, its residents are a little bit younger and have lower levels of income, education, and employment.
Decentralization and the idea that health care should be available to everyone, regardless of their circumstances, are at the heart of the Swedish health care system. While Parliament and the government provide the legislative and financial framework for mental health policy, it is up to the states and local governments to carry out the day-to-day operations. 5 As a result, VGR bears the burden of providing medical attention and treatment to the people of Västra Götaland, as well as setting up the necessary circumstances to ensure high standards of care for everybody. As a result, VGR’s mission is to ensure that every human being has access to the best possible quality of health. 6
Damian Jacob Markiewicz Sendler: Swedish policymakers have made mental health a top focus in recent decades. Part of deinstitutionalization began in the 1960s and was followed by a comprehensive program to improve the quality of life for individuals with mental health disorders in 1995, which was modified in 2006, and which emphasized the importance of local care. An all-encompassing national strategy for 2012–2016 has been developed to significantly enhance mental health policy in recent years. 7
Dr. Sendler: Mental health in Sweden is showing signs of progress in certain areas and worsening in others, according to current trends. Many persons with major mental health problems have seen their quality of life improve because to deinstitutionalization and improved access to health treatment. Meanwhile, there has been a rise in mild and moderate mental health issues among specific populations, particularly among young individuals and those in their early adulthood. 8 However, the percentage of patients with serious conditions has remained essentially stable throughout the years. Psychosis affects around 1,500–2,000 persons in Sweden each year. Schizophrenia has a 0.8 percent chance of developing in a person’s lifetime. In Sweden, there are around 30,000 persons who need assistance and care due to their schizophrenia.
In Sweden, psychiatry is tested and challenged through the legislation on mental forced care, for example.
10 This law stipulates that a person may be treated against their will in specific situations, such as when a doctor deems the patient to be in need of ongoing mental treatment or a danger to the patient’s own or others’ safety. Although coercive methods are rigorously regulated by the law, there are occasions in practice when ethical questions emerge. A person’s right to self-determination, involvement, and integrity may be violated if the law allows and the actions are necessary to safeguard the person’s life and dignity. Human rights are violated as a result of these forceful actions.
Concerned about Sweden’s record on human rights, the UN committees that oversee disabled people’s rights and children’s rights have both reprimanded the country for relying too much on harsh methods of treatment in Sweden’s mental health system. Because of this, these treaty organizations have urged on Sweden to minimize the number of coercive methods in psychiatry and raise the level of openness in the field. This, according to two committees, is in compliance with human rights norms, but it is applied in a way that breaches them. 11 As a result, it is imperative that psychiatry include an HRBA into its everyday practice.
A “Statement of Common Understanding on Human Rights-Based Approaches to Development Cooperation and Programming” was approved by the United Nations Development Group (now the United Nations Sustainable Development Group) in 2003.
12 The concepts of an HRBA were agreed upon by UN agencies in this document.
Damian Jacob Sendler
An HRBA model was tested in regional and decentralized contexts at VGR as the beginning point of the project. Does it work? The simple answer is: yes. The lengthier answer: sure, it works, but it is not always simple to grasp and requires a great deal of assistance in order to be used in daily Swedish health-care practices. The first obstacle was simply a linguistic barrier. As jargon-heavy as the statement of common understanding is, translating it into Swedish as well as into simpler and clearer language that is more relevant to real healthcare is a difficulty. A similar understanding was the starting point for both the Swedish and regional versions of our recommendations. However, although both texts follow the same stages and concepts, they are written with different audiences in mind. 13 Throughout the HRBA in our area, we have chosen four core principles: dignity and empowerment, equality, non-discrimination, participation, and responsibility. All phases save the first are in line with those generally employed in high-quality development work, and together they form a five-step HRBA tailored to VGR settings.
Damien Sendler: In the spring of 2013, Psychosis Care Chain Northeast’s HRBA pilot was launched. Members of civil society and service consumers were asked to participate in the project at an early stage. Participants in the psychosis care chain’s pilot project included people with psychosis and their families, as well as medical experts, managers, and representatives from two user groups and department of human rights employees. It was also monitored by two other researchers. This group’s composition was critical.
This group’s initial task was to familiarize itself with human rights principles, particularly those pertaining to psychiatry and the right to the greatest practicable quality of bodily and mental well. Study of applicable UN agreements, general comments of UN treaty bodies, and closing remarks of treaty bodies on Sweden were all part of the process. In fact, one of the key topics throughout the job has been the constant training in human rights. The success of the pilot and the subsequent work was largely due to the open-ended learning that took place throughout the pilot.
In terms of psychiatric treatment, the group discussed who was a right holder and who was a responsibility bearer, as well as what those words meant. Users and their families had the same rights as everyone else. In other words, people have a right to the best possible level of health, and this right is guaranteed by the United Nations agreements on health. Because of this, healthcare practitioners are bound by the UN health covenants to deliver their services as duty bearers. Employees are also entitled to certain rights in the workplace, according to our findings. An employer’s responsibility is to ensure that their employees are safe and appropriately trained to carry out their jobs. When it comes to protecting and defending service users’ and colleagues’ human rights, these employees must be cognizant of both.
In another study, researchers looked at how human rights defenders and duty bearers see issues and obstacles in human rights protection, as well as what is currently being done successfully and how it may be improved. Working group talks uncovered a number of ethical issues, including the delicate balance between the perceived necessity for compulsion and the right to self-determination and autonomy..
The working group planned and prioritized the rest of its work based on these conversations, which included tying current governance to human rights goals.
To come to one’s own right: empowerment-based psychiatry” was the name of a new working group that continued this work after the completion of the pilot project in 2015. There were three persons who had personal experiences with psychosis and psychiatry, as well as two psychiatric workers in this group (a nurse and a physiotherapist). HRBA was further developed and refined in this project, which ran from 2016 to 2019, by a working group that included lessons learned during the pilot project.
Coercive measures have been reduced. Coercive tactics, such as belting, were aggressively discouraged in Ward 242. The UN’s condemnation of Sweden’s use of coercion was directly linked to the everyday job of the workers. One suggestion was to use low-impact therapy to lessen the use of coercive tactics, while another was to eliminate rules and procedures from the ward that had no purpose other than to impose control over patients. Patients were not permitted to consume coffee after 5 p.m. or have more than one pillow in their bed under one of these rules. A person’s sense of self-determination and self-respect were profoundly affected by these apparently little actions in their lives. These types of norms and procedures sparked a lot of dissatisfaction, which quickly escalated and resulted in a variety of coercive methods from staff members. In addition, the staff saw that compulsion might violate a patient’s dignity and produce new traumas.
Coercion was not only crucial to patients, but also to the health and well-being of staff, according to the workers. When coercion was reduced, sick leave was reduced and patient deviations were less likely to be reported. Also, the new manner of working had a positive effect on employees’ willingness to stay in their positions. People-centered care and “better care, less coercion” were both encouraged by the HRBA as well as other prior and current activities and initiatives. The ward’s ideas and efforts were framed by human rights, which served as a compass for future development of these concepts and actions.
A reduction in coercion was also seen as significant by the rights holders as a way to enhance their dignity and health. “That’s what human rights are about—to change things,” said one service user. “It’s important to realize that working in this way and achieving real effects or changes is possible.” 17
They raised the dilemma that allowing some patients too much self-determination could be neglectful, which would also violate patients’ human rights and the staff’s duty to protect them. The working group continually discussed the need to find a balance between empowerment and self-determination and coercion.
