In this paper, the results of the empirical study titled LTC of people with dementia in the theory and practice of social work, which is part of the Slovenian national research, are analysed. The results of the analysis manifest to what extent the elements of the *human-rights-based approach* are authentic in understanding the LTC for people with dementia by formal and informal care providers, in order to be able in the future to design a modern LTC for people with dementia that puts human rights at the forefront.

#### **2. LTC for people with dementia as anti-discrimination field**

LTC for people with dementia should be anti-discriminatory, which means that the long-term care system and all its staff should work against prejudice, negative attitudes and contempt that result in exclusion, labelling and stigmatisation. These are fundamental human rights that should be respected and implemented within LTC. First and foremost, the anti-discriminatory practices should be developed at all three levels of LTC (e.g. micro, meso and macro levels), as this is the guiding principle that makes the realisation of the fundamental human rights of people with dementia possible.

At a *micro level*, people with dementia quickly become stigmatised, because their behaviour is often different from normal, socially acceptable behaviour. To this end, the use of words and expressions is adapted, that is, the language of politicians, professionals, informal and formal care providers, representatives of local and wider society and others who make up LTC. Swaffer [9], Reynolds et al. [10] and Heward,

#### *The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

Innes and Cutler [11] draw attention to the correct use of language to reflect the attitudes towards people with dementia. The use of expressions, such as *demented*, *dementia sufferers*, *dementia subjects*, *dementia victims*, *not all there,* is still common in political documents, in professional and scientific conferences across various disciplines and, consequently, among researchers in these disciplines, and is by no means different from everyday language. Swaffer [9] points out that stigmatisation of people with dementia is endemic in the literature and that discrimination against people with dementia is present even in advocacy organisations. There is a need to advocate for a language that normalises the lives of people with dementia, is inclusive rather than exclusive, and supports people with dementia in making decisions about their lives rather than insulting them. The rhetoric of various professionals working in the field of dementia not only has an impact on people's everyday language but also shapes the general image of people with dementia and determines their position in the community. In such a situation, it is understandable why people with dementia live without social power and unconditionally accept any kind of help. The prevailing rhetoric about dementia and people living with it disempowers people with dementia, is demeaning, affects their identity, labels and stigmatises them. The disability rights movements have been most successful in eliminating the pejorative language previously used to describe people with disabilities, and words like 'retarded', 'handicapped', 'cripple', 'infirm' and 'imbecile' are, fortunately, no longer in use [8]. Following this example, the rhetoric about the people with dementia could be changed and by giving them an activist role in education processes, the language that today is predominantly derogatory in the media, among professionals, researchers, politicians and society at large, could change as well.

People with dementia are not involved in research, not even in research on stigma, the area they could report on most authentically, because they experience stigmatisation on a daily basis. Unfortunately, the research on the social dimensions of dementia is dominated by the principle of knowledge about people with dementia being created without them. A common excuse for excluding people with dementia from research is their reduced cognitive abilities [12]. If we aim to promote the empowerment of people with dementia, research needs to be designed and conducted based on the inclusive research strategies. It is not sufficient to only partially involve, for example, a small number of people with dementia, without drawing up clear goals, purpose and their roles. Including people with dementia in research in this way is 'tokenistic', since it only manifests the awareness of the exclusion of people with dementia on a symbolic level, without actually destigmatising them.

The starting point of such research is based on the belief that only people with experience of living with dementia can change the prevailing exclusionary attitudes towards them. These examples are certainly relevant for the LTC of people with dementia in Slovenia, as there are no such organisations in the field of dementia. They are exemplified by:

together 37 national NGOs working in the field of dementia support, of which Spominčica [15], the Slovenian association is a member. They make sure that the priorities and the perspectives of people with dementia are included in all Alzheimer Europe activities.

3.Australian Dementia Advisory Committee [16] is a national advocacy platform for people with dementia. Its members help shape the services, programmes and policy development, and strive for a community where people with dementia are valued and respected.

At the *meso level*, the so-called *dementia-friendly communities* can serve as a model for establishing anti-discrimination practices. The concept of these communities is rooted in the philosophy of 'age-friendly communities', which can be traced in contemporary social gerontology [17, 18]. It is a community that enables its members to live meaningful lives as they age because it is tailored to meet their specific needs and priorities [19]. Age-friendly communities provide support for people in need of LTC, while allowing them to be actively involved in the community and have recognised social roles. These communities should also be modelled as 'dementia-friendly communities', where the conditions are in place to empower people with dementia to live their lives as they did before their diagnosis. According to the Alzheimer's Society [20], these communities should provide the inclusion of people with dementia in the living community, its activities, early diagnosis, community support and care and mobility and stigma reduction. Only people with dementia can define what a 'dementia-friendly life' is for them and what they want their community to be like, which is inclusive and enables them to live independently as they did before the onset of dementia [21]. There are a number of good practices of 'dementia-friendly communities' around the world, for example, in the UK, Belgium, Germany, the USA, Australia and Japan. In the UK, the economic impact of dementia-friendly communities for people with dementia was quickly recognised, as caring for people with dementia in a home environment is cheaper and safer than institutional care in a nursing home or hospital [11]. However, this should not be the only lever for establishing such communities, otherwise, the desired changes in the destigmatisation of people with dementia will not be achieved.

At a *macro level*, the general public's opinion on dementia can also be changed in different ways. Not only through education. Learning from one's own experience is effective, as is manifested by Reynolds et al. [10], who present an experiment in which people with dementia participated in a concert organised by a university campus symphony orchestra. Before the concert, the audience was asked questions about their expectations, and after the event, it was asked how their opinion about people with dementia changed. Their perception of dementia changed a lot after the concert because they realised that people with dementia were not only dependent on others for help but could also make a relevant contribution to the community despite their disease.

#### **3. Human-rights-based approach in LTC for people with dementia**

Cahill [8] develops an interesting concept of understanding dementia through the lens of human rights by introducing dementia as part of the social model of disability. She asserts that dementia as a disability is a human rights issue because the person

#### *The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

diagnosed with dementia is at risk of experiencing injustice, marginalisation, and discrimination. In different countries, it is common for persons with dementia to face various structural barriers, such as difficulties in accessing diagnostic and postdiagnostic services, disregard for the right to autonomy and respect for their dignity. Therefore, it is important to consider the needs of people with dementia as their basic human needs, and the responses to their needs (i.e., services, forms of assistance) must be organised and implemented according to the realisation of human rights.

Respect, consideration and coexistence are values that should be internalised and implemented by people working in the area of LTC. They enable people with dementia to play a participatory role at the level of community and society as a whole. On the other hand, it is also important to develop the methods of support or care at the level of LTC that enable the participation of people with dementia. One such method is personal planning, which is important for people with dementia already before the onset of the disease. There is a method known as advanced personal planning [21–23] because it is important for people with dementia to make decisions about their future and to express their wishes at a stage in their disease when they are still able to do so and are believed by others to be truly able to do so. Boyle [22] cites the results of a study that looked into the participatory role of people with dementia in day-to-day decisions about the course of their lives and the impact of social factors on this role. She concludes that it is up to us without dementia to recognise and provide the participation of people with dementia. By talking less and communicating more, by reducing daily activities and tasks, and by allowing reflection on activities, we will enable people with dementia to take an active part in decisions about their lives. We will identify their wishes and life goals and be able to follow them through the advanced stages of their disease.

This approach is also getting increasingly relevant due to advances in medicine, which can predict at an early stage whether a person may potentially suffer from dementia (e.g. Alzheimer's dementia) through various tests (e.g. biomarkers) [24]. Advances in medical science are "buying time" for people with dementia to think about their future. However, in reality, people do not think this way at the time of diagnosis, and neither do their care providers, who are usually family members and expected to help them. All together, they do not want to plan ahead, because they follow the normative assumptions that it is their duty and commitment to provide care for a relative with dementia. If the assumption that informal care providers are the agents of care for people with dementia is made also at the systemic level of action and organisation of support, it is quite difficult to put the participatory role of people with dementia into practice. This is confirmed by Donnelly, Berley and O'Brien [25] who argue that the power of decision-making is left to the relatives of people with dementia as there is no opportunity for people with dementia to participate in decision-making. For instance, despite the fact that in Ireland the participatory role of people with dementia is legalised, there are bureaucratic procedures at the level of implementation, the organisational procedures that dictate pressures and immediate decisions about life courses. People with dementia who have not planned their decisions in advance are therefore excluded from decision-making and left to the decisions made by their relatives.

In contemporary practice of providing help or LTC, people with dementia are not involved in care planning, either because it is not possible for them to be included (e.g. regulatory provisions to help social workers explain to the relatives why it is relevant for people with dementia to be involved in the care process) or because they are not invited by other professionals to be involved in care planning (usually because they do not think they are able to be involved in the care process) [25]. Family members are automatically involved in planning, a practice that has become routine, while people with dementia rarely play a participatory role in care planning. When they are not excluded, they are most often involved only symbolically, for instance by attending meetings, but not being given the opportunity to talk about their wishes [26]. Such practices are also strongly affected by medical reports showing the extent to which dementia has already advanced and reduced the ability to think and judge. Involving people with dementia in care planning is also important as it informs them about their rights, possible solutions and forms of support [27]. By no means should participation be seen only as a technique or a specific method of work, but rather as a relationship, an attitude, an ethical commitment and a core value of LTC [7]. Or else, it becomes a tool for the realisation of illusory aspirations of equality and empowerment of people with dementia. Participation should become a philosophy or a mindset that creates a culture of support in which a person with dementia plays a central role.

#### **4. Methodology of research on LTC for people with dementia in Slovenia**

During the almost 20 years of drafting the Long-Term Care Act and the many heated debates among professionals, the topic of LTC for people with dementia has rarely been addressed in Slovenia. This is one of the reasons why the basic research project LTC of people with dementia in the theory and practice of social work (No. J5-2567) as the first national study in the field of research on the social dimensions of dementia was focused on LTC. The project applied the method of Rapid Needs and Services Assessment (RANS), which was developed in Slovenia at the Faculty of Social Work, University of Ljubljana, in order to identify LTC needs and plan the process of deinstitutionalisation [28]. The method is one of the fundamental research methods in social work, which is used to develop theory and practice in the core areas of social work in an integrated and hermeneutic way. It is a combination of qualitative research methods, techniques and approaches, among which grounded theory, ethnography and action research are predominant, but with regard to research objectives, it is also complemented with methods from the quantitative research methodology [29]. The purpose of the method is twofold: (1) on the one hand, the needs (scope, type, intensity, characteristics, etc.) are assessed, and, (2) on the other hand, the responses (those that are already known and available, and those that need to be developed in new ways or require action—change). Needs assessment is primarily an analytical assessment of the situation and the resources available. On this basis, the guidelines for new and needed resources are given. RANS is also a method used to make suggestions for necessary research-based interventions, which are feasible with proper planning.

In this paper, we present the results of three focus groups with key actors in the provision of LTC for people with dementia from three selected municipalities. The selection of municipalities was based on the results of the basic project communitybased care for older people in Slovenia [30], in which five groups of municipalities1 were defined with regard to institutional and community-based care, namely municipalities from groups 2, 3 and 5. A total of 29 participants from various organisations

1 Group 1: higher welfare—high quality of care; Group 2: higher welfare—poor quality of care; Group 3: lower welfare—poor quality of care; Group 4: lower welfare—high quality of care; Group 5: Ljubljana and Maribor: high availability of care (favourable price)—no sufficient quality of care.

#### *The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

took part in the focus groups: social work centres, old people's homes, health centres, general and psychiatric hospitals, municipalities and NGOs (pensioners' associations, Spominčica—a dementia support organisation, adult education organisations). The following questions were discussed with them:

People with dementia enter the LTC system when they are diagnosed. The right to a diagnosis is written in the expired Dementia Care Strategy of Slovenia 2016-2020 [31] and in the proposed Dementia Care Strategy of Slovenia 2030 [2]. Our aim was to get a user's perspective on this practice, therefore, 22 relatives of people with dementia from the selected municipalities were interviewed and the following topics were discussed with them:

The empirical data was collected from March to October 2022 and analysed using a qualitative data analysis method [32, 33] to create an overview of the LTC needs of people with dementia. We were interested in the ways in which the 'human-rightsbased approach' was implemented, in particular: the right to early diagnosis, the access to care tailored to people with dementia and the right to organised care in the community. The results are described based on the mentioned themes.

We are aware of the fact that the survey is limited in that we only interviewed communities that were accessible to us, and professionals who later gave us access to the relatives. Unfortunately, this was the only possible approach at the time of the research, because after the epidemic of COVID-19 the field of research on the social dimensions of dementia was quite closed, access to people was limited, and people's trust in research was low. We relied on the research methods available to us in order not to stigmatise the relatives of people with dementia even more than they already are in Slovenian society. In this context, we also ask the readers to understand our research results, which we present in the following sections.

#### **5. Results**

#### **5.1 The right to early diagnosis**

The relatives of people with dementia report that they associated the behaviour and actions of their family member with dementia, which seemed to indicate memory problems. Initially, the memory gaps were attributed to changes in age and therefore

not given much attention. However, when they witnessed an unusual event with tragic implications, they became convinced that the memory problems were due to uncharacteristic ageing.

Memory loss is the second most common reason for relatives to think about dementia, next to the unusual event. When observing the behaviour of their family member, the relatives were quite specific in describing the areas where they observed a memory loss in their family member, which is certainly an important message for professionals and should be taken into account more in the process of providing professional support. The relatives report memory loss in the following areas:

In addition, the relatives described changes in their family members' behaviour, habits and beliefs.  These changes led to an appointment with a general practitioner and a diagnosis. Early diagnosis is important because, in the early stages of dementia, a person can still make independent decisions about his or her life, which from a human rights perspective represents an opportunity to preserve human dignity and autonomy [8].

The diagnosis is experienced and described by the relatives of people with dementia with a range of emotions, for example, shock, fear and sadness. Shock is the most common emotion described by relatives in response to the diagnosis. For some, shock is the result of a rapid deterioration in the relative's health and the diagnosis is only a confirmation of the suspicion of dementia. Similar experiences are also found in the literature, which states that family members also experience stigma when a diagnosis is made [1, 34].

Fear is common in those who have never heard of dementia or have little idea of the consequences it can have on their lives. It is a reaction against the unknown, the feeling of insecurity and ignorance of the changes that await them: *'The doctors didn't have much work to do, because my mother seemed to conceal the disease that was already fully advanced. So the doctors quickly found out through tests that it was dementia. As I didn't know about dementia at the time, I came to terms with the diagnosis with great fear'.* (Z 1).

#### *The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

However, those who know about the disease, are overwhelmed by a feeling of sadness when they are informed about the diagnosis, especially if a person with dementia knows the disease and does not want to accept it.

In addition, the relatives' accounts show that the process of diagnosis varies. The relatives describe different experiences of how they made the conclusion about the diagnosis themselves, although the Dementia Care Strategy for Slovenia 2016–2020 [31] prescribes a uniform procedure for treating the patients: 'A patient suspected of having dementia is treated by a specialist, a psychiatrist or a neurologist. To be seen by a neurologist, the patient needs a referral from a general practitioner, while a psychiatrist is available without a referral'. The story of a daughter describing a revolving door syndrome, a common problem in the medical model of help, is particularly striking: *'We turned to doctors for help. First, we met a psychologist, who soon gave up, said that he could not help us and referred us to a general practitioner. The GP referred us to a psychiatrist and after the psychiatrist assessed my mother's condition it became clear that a neurologist should also be involved.  The doctors went through their treasure trove of knowledge and tried to help us, but at that moment, when we were still so confused, we needed someone to do all they could and get to the bottom of it. The last neurologist looked into my mother's health, examined everything that could have impacted the changes in her and discovered many things. In the multitude of tests and examinations, for the first time we were able to really understand what it was all about - Mum had been diagnosed with multi-infarct dementia. Besides, during this time the rest of us got to get acquainted with the guest who had been hiding in the corridors of our home for years'. (Z 20).*

Diagnosis takes between a year and a few months. Sometimes it can take several years from the first problem to the diagnosis, either because the person neglects the first signs, or because the family doctor is inattentive to the initial signs. National guidelines on diagnosis should follow international guidelines to ensure that people with dementia receive a diagnosis as soon as possible and are entitled to follow-up care. For example, the Global Action Plan on the Public Health Response to Dementia 2017–2025 [35] states that 'by 2025, at least 50% of countries will have at least 50% of the estimated number of people diagnosed with dementia'. Often the initial signs of the disease do not seem alarming for people who experience them. In contrast to the relatives who experience strong emotional reactions to the diagnosis, some people with dementia take the diagnosis for granted, mainly as resignation: *'Stane did not react emotionally to the illness, but rather accepted it with indifference, even when he was asked about what he thought, he replied that if that was the way it had to be, so be it'.* (Z 12) In some families, however, the members take on a caring, protective attitude and do not even mention the diagnosis to the relative with dementia: *'As I've mentioned before, my mother does not even know that she has got dementia. We didn't tell her because she would have forgotten it the next day anyway. Why tell her something she might not even understand, or that would depress her. We benefit from the moments when we are with her to talk or go for a walk together'.* (Z 10) It is hard to say for sure that people with dementia are not aware of the disease, therefore, it is unacceptable for relatives to disbelieve them by feeling that they are unaware of the disease: *'After her diagnosis, my mother's life didn't change much, she was already in her own world. Even when we talked to her about her disease, she didn't understand the conversation, she claimed that she didn't have dementia and that she didn't notice that she was forgetting things. But she had forgotten that she had forgotten. For us, it was just the beginning, because it turned things upside down'.* (Z 1) This belief is probably due to the fact that dementia still causes fear among people. The social dimensions of dementia are still full of stigma, dementia is still a mark, a sticker, a label and something bad.

The relatives describe how difficult it is to accept dementia of a family member. The information about the characteristics of dementia, the course of the disease and the treatment options are welcome, but sometimes they do little to help with the next step that the relatives need to take, which is to accept all the changes that the disease brings to the life of the person with dementia and to all those around them.

The family is faced with the challenge of how to change the patterns of life that have been established so far so that everyone can live together with dementia in the least stressful and most comfortable way possible. Often children choose to take their parents under their own roof, or a relative may move in with the person with dementia, which can be an additional barrier.

The biggest changes concern the abandonment of activities and tasks that help the person maintain their identity, as they present a new challenge for both the person with dementia and their relative. The person with dementia needs new roles within and outside the family, and needs time and space to assert them. He or she needs a lot of support and understanding from family members in establishing and asserting the new roles. Due to the disease, the persons experience a lot of negative emotions and losses on a daily basis, they do not understand what is happening to them, so our role is to help them cross the threshold of a negative understanding of the world and to guide them into a world where they will feel accepted in their new role. Doing so also requires us to accept certain risks and responsibilities, but at the same time, it gives the persons with dementia a better quality of life.

#### **5.2 The accessibility of personalised care for people with dementia**

The analysis of the empirical results of the focus groups manifests that people with dementia need a lot of help and support from other people in their daily lives, which in the current LTC means that most care is provided by relatives. Help from existing institutions is insufficient, poorly accessible or not available at all. Old people's homes are full, with people with dementia waiting for months or years to be admitted. Home help is not evenly developed across municipalities, its scope (20 hours per week), in particular, is not sufficient to meet the needs of people with dementia. It is the relatives who ask for professional help, not people with dementia, in particular when they are no longer able to provide care for family members with dementia. They would also need help themselves, as they feel exhausted and helpless due to burnout. However, the professionals cannot offer them adequate solutions as the existing system does not provide services that would respond to the acute needs of people with dementia and their relatives.

Among the existing forms of support, care in old people's homes appears to be the most adapted to the needs of people with dementia, as modern forms of care are developed along with the existing organisation of care and focus on meeting the needs of the residents. Similarly, this could be the case with home care, but its scope is too narrow to provide personalised and individualised care, tailored to the needs of people living with dementia [7]. We have recognised that we really need personalised plans for people with dementia, as highlighted in the World Alzheimer's Report 2022 [1], where it is stated that every person deserves care and support that meets their individual needs and ensures they have access to the right information at the right time to make decisions about the whole course of their care.

#### *The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

In recent years, all municipalities have developed programmes to raise awareness of dementia among the general population, which is a relevant activity in terms of proactivity to identify the specific needs of people with dementia. In the municipalities, involved in our study, these programmes are implemented by public universities, old people's homes and NGOs. Unfortunately, we did not experience the correct use of expressions during the focus groups, as even the professionals referred to people with dementia by using terms such as 'demented' or 'demented people' and felt that they were passive and unable to make decisions about their lives. Perhaps the guidelines for more appropriate language being developed by various NGOs around the world to help people with dementia could be of great help in changing our vocabulary. Swaffer [9] cites three organisations that between 2008 and 2021 adopted the guidelines for using the language that is no longer offensive to people with dementia: Alzheimer's Australia (2009), Alzheimer's Society Canada (2012) and Alzheimer's Society of Ireland (2008). The example of these organisations in designing the Dementia Care Strategy for Slovenia 2030 [2] should be followed, as the draft document does not sufficiently highlight the correct use of words and expressions.

The issue most often referred to by our respondents is that the existing LTC system should be developed and upgraded, increasing both institutional and communitybased forms of care, especially home care. Personal assistance for people with dementia could also be developed in the future. The staff in the current and, more particularly, in the future LTC system need to know how to deal with people with dementia, and they need to be educated and trained to be able to help them. Their work needs to be valued and better paid, as there is already a lack of qualified staff in this area.

When it comes down to the trends in support, our respondents mention the promotion of self-organisation of people with dementia in self-help groups, the increased presence of people with dementia in the community and their active role in developing support programmes. We find that the experts aim to encourage user organisations and activism on the part of the people with dementia, but do not find the right levers to make this happen.

The vision of help is reflected in coordinated care that is integrated and integrative, where the available services complement each other. No one benefits from too much competition between service providers. If we are to develop new forms of support and new services for people with dementia, they need to be coordinated. In two municipalities, the focus group resulted in an agreement on such cooperation; therefore, in one municipality it was agreed that the municipality's Social Council would convene a meeting to organise the preventive dementia awareness activities, while in the other municipality, it was agreed that the providers of support for people with dementia would meet again to agree on how to tackle the problems at hand on the ground.

We need a national programme for early detection of dementia to help both to accept the taboo of the disease and to develop appropriate forms of help and services for people with dementia. At the same time, a register of people with dementia will be introduced, therefore, we shall gain a more accurate perception of how many people with dementia need organised help. However, as long as we do not even know how many people with dementia are living in our country and what types and stages of dementia they have, we will continue to spin in a vicious circle in which no one is satisfied with existing system of help.

#### **5.3 The right to organised care in the community**

Current trends in LTC and care for people with dementia highlight the need to create the conditions for living independently in the home environment for as long as possible by providing a base of LTC policies at national and local levels on these premises [36]. This ensures, on the one hand, the development of home care services and, on the other, the support for maintaining home and its possible adaptation in the event of sudden adaptations to ensure independent living in the home environment.

Traditionally, the concept of family care for old people in Slovenia has been established and supported by institutional care [30]. Intergenerational solidarity is formally reflected in existing legislation, which requires family members to care for the ageing family members when they are unable to care for themselves independently. There is also a strong cultural intergenerational solidarity based on reciprocity of help—the parents who provided care for their children when they were young can expect their children to provide care for them when they are dependent on other people for help in old age. This 'caring culture' [37] is also passed on to members of the extended family when older people do not have children. In addition, it is mentioned by our respondents in the study, as most of them encounter in their work the relatives of people with dementia who, in desperation and exhaustion, ask for help from professionals and institutions.

From a socio-cultural point of view, it is extremely important that people with dementia are provided with care in their own homes, as close as possible to their immediate and extended family members. This is reflected both in our previous research [28, 38, 39], as the contact with family members is extremely important in the lives of older people, and in the current research. Older people describe family as a community that provides them with help and support in all forms, from material and emotional to providing contact and companionship. They rely on their family members (most often their children) in all situations, also when it comes down to various life crises. In the context of LTC for people with dementia, this involves developing services and forms of support that aim to support both, people with dementia and their family members.

Institutional care is the last in a series of services for a person with dementia, as it is important for them to remain in their home environment for as long as possible. As home care is the only available form of community care and there are no available places in old people's homes, people with dementia are forced to follow an institutional career path, which most often leads them to being admitted to an old people's home.

First, they are hospitalised, often in a psychiatric hospital, from where they return home and are soon hospitalised again, and then after a while, they are placed in an old people's home, often away from their home town. It is not uncommon for them to move from one old people's home to another in order to be as close as possible to their familiar surroundings and, above all, to their relatives. The pointless multiple institutionalisations should be stopped, either re-institutionalisations in a hospital that are due to inadequate care in the home environment, or moving from distant old people's homes to those that are closer to the relatives, so that they can visit more often, etc.

People with dementia have the right to live in their own homes and should be empowered to live in the community and receive care aligned with their wishes and preferences [35]. However, when life circumstances are such that institutionalisation is inevitable, it is important that the institution is in the home environment of a person with dementia, or in the vicinity. An old people's home could provide a crisis

*The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

accommodation to provide temporary institutionalisation until the living situation in the home environment has been sorted out (e.g. adjustments in a flat or a house), home help has been provided and life in the extended family has been organised in a way as to provide support in the home environment.

The existing response is not in line with the real needs of people with dementia, therefore, the research data is needed to identify what changes in the organisation of care provision (sectoral division, supply of care, resources) and the way care is delivered (services, work methods, role of users) are needed to create a long-term sustainable system of LTC for people with dementia. The existing services need to be reorganised by redesigning large institutions, dispersing services, ensuring coherence and changing the work of professionals. Along with reorganising existing services, new services and structures need to be set up by organising new spaces (forms of living, socialising and occupation), new forms of work and methods in various organisations (e.g. individualised care). The new services should be accompanied by new activities, by linking organisations with activities outside their own sphere of interest, providing more choice, more events and, in particular, ensuring the participation and involvement of people with dementia in the planning and delivery of services.

#### **6. Conclusions**

In Slovenia, the LTC of people with dementia needs to be regulated in several areas in order to respect fundamental human rights. **Table 1** summarises the main findings of the research on the existence of a human-based approach according to Cahill [8].

Firstly, all people should have equal access to medical treatment and early diagnosis. The experience of relatives shows that there are various practices involved when it comes down to pinpoint a diagnosis, which leads to people waiting for years before they are actually diagnosed. During this time, the disease may worsen to the point where people with dementia are no longer able to make independent decisions about their lives. Cahill [8] critically observes that in 'high-income countries', only half of people are diagnosed with dementia, while in other countries, only 10% are diagnosed, which is not serve as an example in Slovenia. In terms of the realisation of human rights, we should strive for the right of every person to early medical treatment and diagnosis.

#### **Table 1.**

*The realisation of human-based approach in LTC for people with dementia in Slovenia.*

Secondly, the access to personalised care for people with dementia needs to be increased. The waiting periods for the provision of formal care in LTC are unacceptable as is the repeated institutionalisation of people with dementia, which does not respect their self-determination and participation in care planning. We need LTC in which people with dementia are active agents in their own care planning. A system of advance planning or planning ahead [21–23] needs to be developed to make the implementation of care tailored to the needs of people with dementia possible. In the Long-Term Care Act [6] the planning of LTC is provided as a method of support, which is a good basis for the development of 'human-based approach'.

Thirdly, the right to organised care in the community is heavily limited due to the prevailing cultural and professional orientations that perceive people with dementia as vulnerable members of society whose voices are powerless, unheard and ignored. There is a need to create conditions in the society and at a local level that would enable people with dementia to express their need to live in a home environment, in their community and, to strive for a 'dementia-friendly society'. The right to live in the community needs to be given more prominence in professional circles and at the level of policy-making. It should become the basis for new solutions in LTC.

We suggest that LTC in Slovenia for people with dementia is built on the experience from abroad, which highlights the rights of people with dementia to free, autonomous and participative decision-making about their lives.

#### **Acknowledgements**

This research was financially supported by the Slovenian Research Agency within the research program P5-0058 and the research project J5-2567 (Long-term Care of People with Dementia in Social Work Theory and Practice).

#### **Conflict of interest**

The author declares no conflict of interest.

#### **Author details**

Jana Mali Faculty of Social Work, University of Ljubljana, Ljubljana, Slovenia

\*Address all correspondence to<EMAIL_ADDRESS>
© 2023 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

*The Possibilities for Human-Rights-Based Approach in Long-Term Care for People… DOI: http://dx.doi.org/10.5772/intechopen.112578*

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#### **Chapter 4**

## Healthcare Rights for Gender and Sexual Minorities

*John P. Gilmore*

#### **Abstract**

There is broad consensus that a key factor for human flourishing is access to safe, effective, and appropriate healthcare. Whilst health inequalities exist for many marginalised and minoritised groups, the impact of broader social inequities on healthcare delivery and health outcomes is particularly notable in gender and sexual minority groups. Health inequalities faced by Lesbian, Gay, Bisexual, Transgender, Intersex, and other gender and sexual minority groups exist across domains of physical, psychological, and emotional wellbeing; many stemming from experiences of broad social exclusion and discrimination, explained through the concept of 'Minority Stress'. This chapter will explore the concept of health inequality and inequity faced by LBGTQI+ groups, considering the relationships between social inclusion, legislative protection, and access to healthcare. It will also question why, even in societies with high acceptance rates of gender and sexuality diversity, health inequalities remain evident. Furthermore, the chapter will present strategies to enhance the healthcare rights of sexual and gender minority groups.

**Keywords:** LGBTQI+ rights, LGBT, healthcare, LGBT health, Trans

#### **1. Introduction**

This chapter will discuss the health and healthcare of Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex people, framing it as an issue of human rights. Across the world, there are significant differences in the visibility, participation, and access to civil and legal rights for gender and sexual minority communities, which inevitably intersects with the availability and accessibility of appropriate healthcare and, ultimately, health outcomes for these groups.

Some key differences between gender and sexual minority communities and other minoritised and marginalised groups are that they are not always recognisable through their appearance or physical characteristics. They are not necessarily born into or socialised within these groups, and in many cases, the minoritisation and marginalisation they face are directly linked to societal perceptions that their lived experiences are unnatural, and that they are somehow way disordered [1].

Whilst research into the health of gender and sexual minority communities remains limited in many contexts, this chapter will put forward some of the areas where health disparities and inequalities are established, as well as discuss some of the confounding factors around these inequities including experiences of discrimination,

stigma, and minority stress [2]. These inequalities both directly and indirectly link to wider issues of LGBTQI+ rights.

Addressing gender and sexual minority healthcare as a right is dependent on the realisation of other human rights, but also in the understanding and acknowledgement of specific healthcare needs of LGBTQI+ communities. This chapter puts forward an argument as to why issues of health equity for these communities should be considered through a Human Rights lens. There are also more specific issues put forward where human rights abuses intersect with healthcare such as the case of conversion practices to change gender and sexual minority identity, often framed as therapy, and surgical violence perpetrated on intersex individuals.

#### **2. Gender and sexual minority rights around the world**

Globally there has been an overall positive shift towards more visibility and recognition of the rights of LGBTQI+ people. However as pointed out by the Council of Foreign Relations [3] this shift in progress has not been evenly experienced; whilst there are growing numbers of countries decriminalising homosexuality, ensuring legal protections, recognising partnership rights, and the right to legally change gender, in other jurisdictions there has been growing opposition to LGBTQI+ rights.

Since the 1970s, there has been consistent campaigning and social activism to combat the oppression, inequality, and injustices faced by gender and sexual minorities, stemming from many legal and societal injustices with roots in nineteenth century colonial laws [4]. Initially, these movements were very much focused on safety and opposition to violence and the criminalisation of LGBTQI+ people.

The Stonewall Riots, which occurred in response to police brutality and oppression experienced at the Stonewall Inn, a gay bar in New York, marked the most notable event during the early period of LGBTQI+ activism, as LGBTQI+ people fought back against the violence and discrimination they faced by taking to the streets. Whilst this is often seen as the beginning of the modern LGBTQI+ rights movement, it was neither the first, nor arguably the most impactful activism of the time [5]. The 'Stonewall Myth' as described not only obscures history, and ignores the contextual nature of global LGBTQI+ movements; LGBTQI+ rights have a particular history and approach within the particular context they appear. It is important to remember when considering the history of LGBTQI+ rights that discussions around legal protections, recognition, partnership rights, and access to services can be hard to grasp in areas where there is an immediate and direct threat to safety and life.

Legal protections for LGBTQI+ individuals vary widely across different regions of the world; and how LGBTQI+ communities view the role of the legal system, whether as oppressor, or liberator, concurrently differs. Some countries have laws that protect LGBT individuals from discrimination, conflictingly others have laws that criminalise same-sex behaviour. According to a report by the International Lesbian, Gay, Bisexual, Trans, and Intersex Association (ILGA), as of 2020, 70 countries still criminalise same-sex behaviour, with punishments ranging from fines to imprisonment, and even the death penalty in some jurisdictions [6]. In many of these countries, laws which are used to persecute and criminalise gender and sexual minorities have roots in colonial penal codes; however, it is too simplistic to suggest that just simply revoking such laws would lead to societal acceptance and freedom from persecution. Indeed, in some jurisdictions such as India and Uganda, former colonial laws were

#### *Healthcare Rights for Gender and Sexual Minorities DOI: http://dx.doi.org/10.5772/intechopen.111641*

repealed and subsequently replaced with new laws which criminalise LGBTQI+ communities to some extent. Addressing LGBTQI+ inequality on a global scale needs to be done cautiously and with cognisance to this history [4], what is happening in many cases is that the promotion of LGBTQI+ rights is being seen as a Western dictate, and almost as a new form of colonialism, this is why a clear human rights approach is favourable.

Although legal protections are vitally important in the promotion of gender and sexual minority rights, this does not necessarily lead to a concurrent shift in societal views, which are often linked to cultural and religious norms. In many countries, where there is widespread stigmatisation of sexual and gender minorities, their lifestyles are considered immoral or against cultural norms. This stigma can have a profound impact on LGBT individuals' mental health and well-being, leading to feelings of shame and self-hatred [2]. In some countries, the threat and experience of violence, harassment, or persecution of LGBTQI+ individuals, leads in turn to fleeing their homes or seek asylum in other countries as described by the UN High Commission for Refugees in their discussion paper [7].

Societal stigma and discrimination against gender and sexual minorities are widespread and take many forms, such as verbal and physical abuse, exclusion from commercial or social activities, and indeed physical violence. LGBTQI+ individuals may also face discrimination in employment, housing, and access to health care. These issues are not only experienced in contexts where there is criminalisation of gender and sexual minorities, but is commonly experienced, even in jurisdictions with legal protection. The ILGA Europe reported that 2022 saw the deadliest rise in anti-LGBTQI+ violence in over a decade across Europe and Asia [8]; and similar trends are being seen in other parts of the world, with statistics from the USA national crime victimisation survey 2017–2019; LGBT individuals are more likely to experience hate crimes than non-LGBT individuals, and these experiences have a significant and lasting impact on health and wellbeing [9].

Concurrent with the criminalisation and stigmatisation of gender and sexual minority communities, there has also been an attempt in many contexts to pathologise LGBTQI+ identity. Homosexuality and gender non-conformity are seen as either symptoms of, or diseases in themselves. Homosexuality was classified as a mental disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1978, and it was only in 2018 that the World Health Organisation declassified transgender identity as a mental illness [10]. The theories of pathologisation are grounded in the belief that the presence of atypical gender or sexuality behaviour are symptoms of a disease or disorder to which a medical professional should attend to [11]. In a similar vain to the dichotomy of a justice system which can either be seen as a liberator or oppressor, the relationship between LGBTQI+ individuals and healthcare providers can be complex. This perspective then further adds to stigmatisation and non-acceptance in society more generally.

The international human rights community has been strong in advocating for the rights of LGBTQI+ individuals. Organisations such as the United Nations, Council of Europe, World Health Organisation, and Amnesty International have all advocated for the decriminalisation and de-pathologisation of homosexuality, and in promoting sexual and gender minority rights as human rights. In addition to being linked to core human rights values such as respect for the dignity, liberty, and autonomy of the individual, as well as rights related to life and safety, the right to good health and appropriate healthcare for gender and sexual minorities is a key intersection that this chapter will discuss.

#### **3. Healthcare as a human right**

In initially addressing the substantive issue of gender and sexual minority healthcare as a human right, it is important to acknowledge that this chapter proposes, more generally, that universal healthcare is a human right for all. This stance, although widely accepted within the community of human rights scholars and practitioners, is not universally accepted; and for some, healthcare should be treated as a commodity rather than a right.

The concept of healthcare as a human right has its origins in the Universal Declaration of Human Rights (UDHR) adopted by the United Nations in 1948. The UDHR has become the foundational document for modern understanding of human rights and outlines the basic human rights that every person is entitled to, including rights to life, security, and safety. It explicitly recognises the right to healthcare by stating that 'everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including medical care'. The UNDHR is subsequently supported in this statement by various subsequent international treaties, instruments, and covenants, such as International Covenant on Economic, Social, and Cultural Rights, the EU Charter on Human Rights, the European Convention on Human Rights, and the African Charter on Human and Peoples' Rights.

Opponents of the idea that healthcare is a human right argue that healthcare is a service or commodity, and therefore, like any other service or commodity, it should be provided based on the principles of supply and demand. One challenge is that there is a perceived vagueness in support for universal healthcare, as the distinction between needs/fundamental and preferences/amenities is not always made clear in debates on universal healthcare provision [12]. For them, there is a fundamental difference between providing life preserving care and what is considered more elective healthcare.

Whilst opponents of universal healthcare as a human right do not refute that basic health is necessary for human flourishing, they still contend that the government's role in healthcare should be limited to providing a regulatory framework that ensures quality standards are met and promotes competition amongst healthcare providers. For some, a key issue in provision of healthcare as a universal right is the role of lifestyle and behaviour in the fulfilment of good health outcomes. In an era where many public health crises worldwide are linked to preventable conditions like cardiovascular disease, diabetes, and obesity, questions arise about how to consider individual behaviours and strike a balance between the choice to engage in unhealthy behaviours and the right to access healthcare to address negative outcomes [13].

Undoubtedly, healthcare services are expensive, and providing them as a fundamental human right places a significant financial burden on governments and healthcare providers. It may also be argued that considering universal healthcare as a human right would lead to an overburdening of the health system, because of an inability to discriminate based on issue of acuity and need. If everyone tried to access healthcare benefits to maximise their wellbeing to the full extent possible, it would be impossible to provide, and ultimately result in the failure of the system. Viewing healthcare provision as a continuum that encompasses health system planning, education, health promotion, and service delivery can help to mitigate its burdensome expense.

#### *Healthcare Rights for Gender and Sexual Minorities DOI: http://dx.doi.org/10.5772/intechopen.111641*

Despite the ongoing debate on whether healthcare is a human right, evidence suggests that healthcare as a human right has numerous benefits. The WHO World Health report in 2010 found that countries that provide universal healthcare coverage have better health outcomes than those that do not [14], countries with universal healthcare coverage had lower rates of infant mortality, lower rates of deaths from preventable diseases, and higher life expectancies. Inevitably this approach leads to significant economic benefits with more opportunity for participation in the economic activity of any society, as well as a society where people can realise their rights more fully. There is also evidence that the provision of universal healthcare coverage leads to higher economic growth rates for countries that provide when compared to those that do not [15].

Furthermore, advocates of healthcare as a human right argue that healthcare services should be accessible to everyone, regardless of their social status, race, ethnicity, gender, or sexuality. Asserting that the provision of healthcare services should not be based on one's ability to pay but on the principle of equal access to healthcare services. This is based on the idea that healthcare is a public good and that the benefits of good health are shared by everyone in society.

Providing healthcare services as a human right has been found to reduce health disparities; simply put, by removing cost as a barrier, countries that provide universal healthcare coverage have lower rates of health disparities compared to those that do not [16]. This is because universal healthcare coverage ensures that everyone has equal access to healthcare services, regardless of their social status or income.

Universal healthcare provision, however, should not mean the same healthcare provision for everyone. Healthcare needs are diverse, some groups face particular health inequalities and disparities which require unique and specific interventions. In the next section, I will describe some of the health inequalities faced by gender and sexual minorities.

#### **4. LGBTQI+ health inequalities**

This chapter contends that universal healthcare is a human right for all, but it is important to note that healthcare must also be appropriate, culturally responsive, and address the specific needs of those who access it. One size does not fit all, and one approach to healthcare does not address the needs of all either. Lesbian, gay, bisexual, transgender, queer, and intersex individuals have specific health needs and related to the specific health disparities and inequalities that they face. These disparities and inequalities are attributable to a range of social, economic, and cultural factors, including lived experiences of discrimination, stigma, and prejudice. Research has shown that LGBTQI+ individuals experience higher rates of mental health issues, problematic and harmful substance use, sexually acquired infections (STIs), body image issues as well as higher prevalence and poorer outcomes related to other physical health conditions when compared to their non-LGBTQI+ peers [17]. The field of LGBTQI+ health studies is an emerging area of research, there is much we do not know about LGBTQI+ health; however, addressing the inequalities and disparities we do know about is a good start.

Mental health issues are some of the most significant and recorded health disparities experienced by LGBT individuals. Several studies have found that LGBTQI+ individuals have higher rates of depression, anxiety, and suicidal ideation compared to their non-LGBTQI+ peers [18].

The mental health disparities experienced by sexual and gender minority individuals are attributable to a range of social, economic, and cultural factors. Discrimination, stigma, and prejudice are significant contributors to these disparities. LGBTQI+ individuals face discrimination in various forms, including employment, housing, and healthcare and this discrimination can lead to social isolation, low selfesteem, and a sense of hopelessness, which can contribute to mental health problems [2]. A significant contributing factor to this may be that the isolation and exclusion experienced by many LGBTQI+ people in their youth, may also be attributed to poorer mental health outcomes, with adverse childhood experiences having a major impact on mental wellbeing later in life [19].

Substance use disorders are another significant health issue experienced within gender and sexual minority communities, linked in many ways to poorer mental health. Several studies have found that LGBTQI+ individuals have higher rates of substance use disorders compared to their non-LGBTQI+ peers and the health impacts are multifaceted and complex [20, 21]. The factors that contribute to substance abuse disparities amongst LGBT individuals are complex and multifaceted. Discrimination, stigma, and prejudice are significant contributors to substance abuse disparities.

Whilst substance use may be a coping strategy for many individuals who experience social isolation, stigma, and discrimination within gender and sexual minority communities, it is important to note that in many of these communities, alcohol and other substances perform an important role in socialisation, and the substances and norms associated with these communities are diverse and contextual [22].

Rates of Sexually transmitted infections (STIs) and HIV continue to have a more significant burden in communities of gender and sexual minorities than the general population, particularly in communities of Gay and Bisexual men and Trans people [23–25].

In the 1980s and 1990s, during the height of the HIV and AIDS epidemic, Gay, Bisexual men, and the Trans community were some of the most impacted by the new virus, which was killing most people infected. Communities of LGBTQI+ people were also at the forefront of political action to ensure adequate resources and appropriate information were provided. Treatment for HIV has now significantly improved to mean that people living with HIV can live full and healthy lives. However, a significant impact of the burden of HIV and STIs within LGBTQI+ communities is the shame and stigma associated with infectiousness and transmissibility of these diseases [26]. People living with HIV on effective treatment can no longer transmit the virus to sexual partners, however, the message around undetectability and transmissibility is not as well-known as it could be.

Few issues in health and medicine receive as much focus as cancer, and given that it is one of the leading causes of death globally, this focus is undoubtedly justified. However, much of the rhetoric surrounding cancer is generic and generalised, despite emerging evidence indicating that gender and sexual minority individuals may be at higher risk for certain cancers than the general population. Lifestyle and behavioural issues are often key factors in the development of cancers, excess alcohol and drug usage as well as higher prevalence of STIs such as HPV in LGBTQI+ may have an impact on the development of cancer.

Data about cancer risk amongst members of the LGBTQ community is limited, however, some recent studies have found that this group may have an elevated rate of cancer diagnoses. In a review of the 2013–2016 US National Health Interview Survey, a comparison was made in cancer diagnoses between 129,431 heterosexual adults and 3357 lesbian, gay, and bisexual adults [27]. Gay men had over a 50 percent increased

likelihood of reporting a cancer diagnosis compared to heterosexual men. Likewise, compared to heterosexual women, bisexual women had a 70 percent greater likelihood of reporting a diagnosis of cancer, although the authors suggest that this figure may be an underestimation due to the possibility of non-disclosure of LGBTQI+ identity status.

As with the areas of health and illness discussed above, data on the prevalence and aetiological links between sexual and gender identity and experiences of other chronic illness is sparse. LGBTQI+ people are often invisible, and if demographic data on sexual and gender identity is not gathered, causative links cannot be identified.

The dearth of research around sexual and gender minority experiences of chronic illness aside from HIV plays a particular role in stigmatising gay men's health issues in particular [28], with LGBTQI+ healthcare only being seen as HIV and sexual healthcare. Using the American National Health Interview Survey data, it was identified that there were some areas where LGB people had higher prevalence of certain disease categories, sexual minority men in particular identified as having higher prevalence of coronary disease and cancer [29]. With a universally ageing population, focus should be given to the experiences of LGBTQ people living with chronic illness. In a qualitative survey of 190 LGB people exploring experiences related to 52 different non-HIV related chronic illness, four distinct themes emerged: ableism within LGBT communities, isolation from LGBT communities, heteronormativity within healthcare, and homophobia from healthcare staff [30]. Regardless of prevalence of illness or disease, the clear disparities in access, experience, and utilisation of healthcare by sexual minorities warrant particular focus.

In conclusion, gender and sexual minority communities experience significant health inequalities and disparities that are attributable to a range of social, economic, and cultural factors. Mental health problems, substance use disorders, STIs, and healthcare disparities are amongst the most significant health disparities experienced by LGBTQI+ individuals. Discrimination, stigma, and prejudice are significant contributors to these disparities. Addressing LGBTQI+ health inequalities requires a multifaceted approach that addresses the social, economic, and cultural factors that contribute to these disparities. Strategies to address these disparities include increasing access to healthcare, addressing discrimination, stigma, and prejudice, and supporting LGBTQI+ communities.

#### **5. Intersections between sexual and gender minority health and wider human rights**

A key limitation in gender and sexual minority healthcare is the absence in data around LGBTQI+ health experiences or outcomes, in many cases this is because sexual orientation and gender identity data simply is not collected in healthcare provision or research. In contexts where gender and sexual minority communities are not recognised, and particularly in cases where these identities are persecuted and criminalised, it is obvious why this is the case; it would be dangerous to gather data which could be used against individuals or communities. However, there is also evidence that LGBTQI+ people more generally hesitant to share their sexual orientation and gender identity data with healthcare providers. In a European-wide survey of LGBTI individuals, the EU Fundamental Rights Agency found that 46% of people have not disclosed their sexual orientation or gender identity to any healthcare provider [31]. A lack of trust in healthcare systems may be linked to histories of pathologisation

and stigma, and indeed to histories where health systems largely ignored the needs of LGBTQI+ people such as during the AIDS crisis of the 1980s and 1990s.

Not collecting this data makes it impossible to address the health inequalities and disparities that exist for gender and sexual minorities, with the old adage of—if you are not counted, you do not count—ringing true with these groups. In an aim to address LGBTQI+ health inequalities by understanding more about the disparities in health outcomes, the US government issued a directive on collection of sexual orientation and gender identity, and whilst this approach is a useful one in highlighting health needs of gender and sexual minority communities, in many cases individuals are choosing not to disclose, or there is a failure on the part of the healthcare provider in gathering this data [32].

The experiences of discrimination in everyday life, employment, and services add to the stigmatisation and oppression of gender and sexual minority individuals. Compounding this, the experience of discrimination within healthcare can have an even greater impact on health and wellbeing. In a prospective study of LGB individuals and experiences of discrimination in everyday life, almost a quarter of LGB individuals perceived that they received less favourable treatment by medical professionals because of their sexuality [33]. The experience of Trans people can be even further victimising and stigmatising, due to wider unacceptability of Trans identity in society and inability to withhold gender identity in many circumstances [34].

The experiences of discrimination within healthcare are obviously a barrier to build trust and therapeutic relationships with healthcare professionals, and to receive appropriate and culturally responsive care, but may also have a significant impact on health-seeking behaviours. A study by UK LGBT rights organisation Stonewall reported that a 17% of LGBT individuals reported that they avoided healthcare when they needed it due to fear of discrimination [35].

The minority stress model presented by Ilan Meyer [2] highlights three stress processes experienced by sexual and gender minorities: External events and conditions, which in large relates to the direct experience of discrimination and stigmatisation faced by LGBTQI+ individuals; the awareness and vigilance around that discrimination and stigmatisation, being constantly prepared to experience negative responses to sexual identity disclosure; the internalisation of wider discriminatory and oppressive societal attitudes of homosexuality. These experiences of prejudice, expecting rejection, concealing identity, and internalising homophobia in turn can lead to maladaptive coping processes [2]. Although sexual and gender minority individuals may become more familiar with adapting to these stressors over time, the ongoing need to adapt due to external environment can ultimately have further negative impacts on their mental and physical health, as the stress associated with this adaptation persists [36].

The theory provides a useful framework to consider how inequalities related to gender and sexual minority health are complex and dependent not only on internal experiences but also linking these experiences to wider societal conditions. The minority stress model presupposes that the stressors are unique to sexual minorities and not experienced by heterosexual people, chronic (related to social and cultural structures), and socially based [2].

Minority stress theory is a most explicit determination of how wider LGBTQI+ rights can have a significant impact on an individual sexual or gender minority person's health outcomes. Societal rejection of gender and sexual minority communities can lead to a lack of access to specific services for LGBTQI+ individuals. It further leads to a limitation of social support within a close and more broad social

#### *Healthcare Rights for Gender and Sexual Minorities DOI: http://dx.doi.org/10.5772/intechopen.111641*

structure—therefore feelings of isolation, stigma, and discrimination become internalised, leading in turn to poor mental health outcomes and coping behaviours which may have further negative physical health outcomes.

Although it has been well established for decades that homosexuality is not an illness, some jurisdictions still pathologise and attempt to 'treat' homosexuality [37]. Although clearly repudiated by all major health and human rights organisations, the practice of 'conversion therapies' aimed at 'treating' or 'curing' homosexuality continues, even in jurisdictions with relative societal acceptance and legal protection of LGBTQI+ individuals such as in Ireland [38]. Conversion therapy practice has strong associations with religious beliefs, especially strongly held beliefs that sexual orientations and gender identities that fall outside heterosexuality or cisgender are sinful [39].

With widespread condemnation from human rights organisations, there has been a movement to internationally regulate and ban conversion therapy; however, approaches differ and there are narratives of conflict between banning these practices and religious freedoms [37].

 Intersex variations encompass a diverse set of congenital differences relating to gonads, chromosomes, and genitals that fall outside usual binary views of male and female sex.

Although some intersex people may also identify as Transgender, not all do, and there are very specific needs and experiences shared by these communities. A significant issue for intersex communities is the commonplace surgical interventions which are performed on intersex infants to address anatomical variations [40]. Argued by many, these interventions are cosmetic and not medically warranted, and because they are performed without the consent of the individuals who they are performed on, are equivocal to a form of torture [41]. The long-term consequences of these surgeries are not only physical, and can have wider impacts on the emotional and mental wellbeing of intersex adults—for many of whom the surgeries are kept a secret from them for much of their lives.

It is contradictory that in some contexts where adults face significant barriers to accessing medical and surgical interventions for transitioning to their preferred gender, unwarranted surgical procedures are performed on infants to align them with perceived gender norms.

#### **6. Addressing the healthcare rights of gender and sexual minorities**

The right to healthcare is indivisible and interdependent on all other human, civil, and social rights. In order to promote the healthcare rights of sexual and gender minorities, their other rights must be realised in order for them to access healthcare in a safe and appropriate way. Even in a country where there is a right to universal healthcare, this right cannot be realised for gender and sexual minority communities if their other legal and civil rights are not maintained. If healthcare is not appropriate, culturally responsive, and addressing the needs of people then it is not in fact universal. The principles of equality and non-discrimination are key in ensuring that gender and sexual minority healthcare rights are realised.

In addressing the healthcare needs of gender and sexual minority communities there is a dichotomy of approaches which could be taken: either providing specialist and targeted services addressing the communities' needs based on the health disparities they face, or an approach of promoting LGBTQI+ inclusion within all healthcare services. In truth, a blended approach is most likely to be effective, whereby there are concurrent programs promoting LGBTQI+ visibility and healthcare needs within the main healthcare system, whilst also providing targeted interventions to support LGBTQI+ communities specifically where there are health disparities to be addressed.

The provision of specialist gender and sexual minority healthcare services emerged through community LGBTQI+ healthcare in the USA, whereby LGBTQI+ organisations and clinicians began providing specialist healthcare within their own communities. The provision is clearly linked to political, social, and scientific associations between LGBTQI+ people and health, and the wider needs of the community in gender and sexuality affirming approaches [42].

One significant factor in providing effective healthcare for gender and sexual minority individuals is the need to have confident, competent, and knowledgeable healthcare practitioners, aware of the specific healthcare needs of LGBTQI+ people. For healthcare providers, the gaps in education at both undergraduate and continuing professional development level around LGBTQI+ issues are key barriers to ensuring appropriate care for gender and sexual minorities [43].

Within medical, nursing, and dental students and providers, LGBTQI+ related bias have been identified, and training is a key strategy to reduce this [44]. Whilst there is no definitive and agreed strategy for implementing gender and sexual minority issues within healthcare professional education, an approach that integrates LGBTQI+ issues within both theoretical and practice-focused learning could be beneficial [45].

As with the development and provision of healthcare services discussed above, a strategy which encourages and promotes both inclusion and integration of LGBTQI+ issues within mainstream healthcare education and delivery, as well as prepare practitioners to develop specific healthcare provision is warranted. A framework of 'Usualising' and 'Specifising' has been developed to ensure both LGBTQI+ individuals are considered in a general way in healthcare education whilst also giving consideration to the specific needs of sexual and gender minority communities [46]. The recommended two-pronged framework suggests that gender and sexual minority identities should be 'Usualised' throughout the curriculum, with clinical cases involving LGBTQI+ individuals accessing healthcare as a natural occurrence rather than the primary focus. At the same time, the curriculum should engage in 'Specifising' by directly addressing issues related to the specific healthcare needs of gender and sexual minority communities, health inequalities, and interventions to support gender and sexuality affirming care.

#### **7. Conclusion**

Undoubtedly there have been significant strides in recognising and protecting sexual and gender minority rights globally, but there is still much work to be done. Discrimination, social stigma, and legal barriers continue to exist in many countries, creating significant challenges for LGBTQI+ individuals. Issues around the health inequalities and disparities further contend that basic legal protections are only one elementary part of ensuring that the rights of sexual and gender minority individuals are realised.

#### *Healthcare Rights for Gender and Sexual Minorities DOI: http://dx.doi.org/10.5772/intechopen.111641*

Advocacy and activism have been critical in raising awareness and pushing for legal protections, but continued efforts are needed to ensure that LGBTQI+ can live healthy and well lives, ensuring that all consideration to universal healthcare rights are cognisant of the specific needs of these communities.

Whilst further research on the healthcare needs of gender and sexual minorities is necessary to gain a more comprehensive understanding of their specific healthcare requirements and appropriate interventions, it is important to remember that sexual and gender minority health rights are inseparable from other universal health rights.

### **Author details**

John P. Gilmore University College Dublin, Dublin, Ireland

\*Address all correspondence to<EMAIL_ADDRESS>
© 2023 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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### **Chapter 5**

## Addressing Wrongful Convictions in Croatia through Revision of the *Novum* Criterion: Identifying Best Practices and Standards

*Andrej Bozhinovski*

### **Abstract**

The topic of miscarriages of justice in Croatia is new. It had begun to be the center of academic discussion in 2015 and culminated with the establishment of the experimental Innocence Project in Croatia in 2020. For the first time, experts started to analyze the domestic legal framework and judicial practice concerning the protection of the rights of wrongfully convicted persons, with a special emphasis on carrying out a post-conviction revision of criminal proceedings to prove eventual miscarriages of justice. This chapter examines wrongful convictions as miscarriages of justice through the scope of the *novum* criterion in different European countries, and the standards of the ECtHR and CJEU. The novum criterion is a legal principle that allows for the reopening of a case if new evidence emerges that could change the outcome of the trial. The purpose is through comparative and case study methods to address the revision of criminal proceedings in Croatia by examining the requirements for establishing a *novum* in the legislation of different European countries and examine the jurisprudence of the European Court of Human Rights (ECtHR) and Court of Justice of the E.U. (CJEU) and establish best practices.

**Keywords:** revision of procedure, *novum*, innocence projects, wrongful convictions, miscarriages of justice

#### **1. Introduction**

The topic of miscarriages of justice in Croatia is relatively new. It had begun to be the center of academic discussion in 2015, after for the first time was presented at the ISABS Conference in Dubrovnik and culminated with the establishment of the experimental Innocence Project in Croatia in 2020. For the first time, experts started to analyze the domestic legal framework and judicial practice concerning the protection of the rights of wrongfully convicted persons, with a special emphasis on carrying out a post-conviction revision of criminal proceedings to prove eventual miscarriages of justice. They are analyzing judicial practice *de lege lata* on the use of the *novum criterion* in the reopening of criminal cases for serious crimes. So far serious criminal

cases, where renewal of the proceedings was requested, have been reviewed. Also, the potential discrepancy in the evaluation of the *novum* criterion in theory and practice is analyzed to determine what constitutes a *novum* in the eyes of the courts. However, preliminary results of several cases indicate that establishing a *novum* criterion in Croatia is far from an easy ordeal. It is a costly and time-consuming effort with a high threshold. On average the pre-trial investigation procedure in Croatia lasts 1–2 years, including the time to review the new evidence or conduct new forensic investigations. The absence of income and deprivation of liberty of the convicted persons, to finance this endeavor to establish a novum criterion is very problematic.

This chapter examines wrongful convictions as miscarriages of justice through the scope of the *novum* criterion in different European countries, and the standards of the ECtHR and CJEU. The novum criterion is a legal principle that allows for the reopening of a case if new evidence emerges that could change the outcome of the trial. The purpose is through comparative and case study methods to address the revision of criminal proceedings in Croatia by examining the requirements for establishing a *novum* in the legislation of different European countries and examine the jurisprudence of the European Court of Human Rights (ECtHR) and Court of Justice of the E.U. (CJEU) and establish best practices. In doing so, the first part of this chapter will explain the importance of the *novum* in correcting miscarriages of justice. The second part will identify positive legislative best examples from Italy, Germany, and the Netherlands, as countries with similar legal traditions. The third part shall examine the principles and standards from the jurisprudence of the ECtHR and the Court of Justice of the European Union. The fourth part will present the revision of the criminal procedure from the Croatian procedural legislation and a few cases of the Croatian Innocence Project in identifying the main problems in establishing the *novum* criterion in practice. The conclusive part highlights which positive practices should be adopted in Croatia, as well as why the promulgation of the special law of lowering the threshold of the *novum* criterion is needed in Croatia in order to protect the rights of the wrongfully convicted persons as a special vulnerable group. Ultimately, this chapter will provide valuable insights into the use of the novum criterion as a tool for correcting wrongful convictions and will inform the development of best practices for its implementation in the Croatian criminal legal system. This chapter will also contribute to the ongoing debate on wrongful convictions in Europe and the role of new evidence in correcting them.

#### **2. Wrongful convictions and the importance of the** *Novum*

Merriam-Webster's dictionary [1] defines miscarriage of justice as a "Grossly unfair outcome in a judicial proceeding, as when a defendant is convicted despite a lack of evidence on an essential element of the crime". This means that Innocent people lose their liberty and do "end up in jail". Regardless of the legal system, this *virus* can be found in either the Continental or the Common law system. The wrongful convictions came to light with the birth of the innocence movement in the U.S. in the 80s and the 90s through which academics and law practitioners started to take seriously this problem by analyzing cases and having them overturned to shed light on the causes of such mistakes. This was by no mistake. These were the formative years of the DNA sciences as well. Science reached the ability to match with sufficient precision DNA profiles. Luparia [2] argues that the DNA testing technology, which is

#### *Addressing Wrongful Convictions in Croatia through Revision of the* Novum *Criterion… DOI: http://dx.doi.org/10.5772/intechopen.111427*

frequently used to convict a suspect dead to rights, is also used in the post-conviction procedure to repeat the procedure and overturn the initial judgment based on the re-examination of the biological samples which were either inconsistently tested or contained inconclusive results. In the U.S. alone post-conviction DNA examination is used to exonerate persons wrongfully convicted of rape and murder charges. However, the grounds for exoneration are numerous and do not apply only to DNA evidence. They can also be: witnesses or victims' recantations of testimonies, police or prosecutorial misconduct, illegally obtained evidence, and depositions given under duress. For any of these reasons, a revision of the criminal procedure can be requested. Peters [3] further explains that the adversarial (accusatorial) systems, particularly in the American version, may be more vulnerable to factual errors than their European counterparts. Furthermore, Kilias [4] argues that another factor may be that factual errors in Europe have a higher chance of remaining undiscovered because of the statutes of limitation for the retention of evidentiary materials. Also, this pertains to physical evidence, such as blood samples, skin, sperm, and hair are usually destroyed once the case has been disposed of through the judicial hierarchy. Another reason is that in the U.S. the rulings are never "final" as in Europe, given the many possibilities to appeal or petition the redress under the form of *"habeas corpus"* petitions. Also, the storage of physical evidence tends to be conserved over long periods of time. In the European (Continental legal system), the availability of legal remedies for revision of the criminal procedure is very narrow, and it is usually an extraordinary legal remedy.

With the transcendence of the "innocence" revolution in the U.S. in Europe, past judicial decisions and legislation were reviewed aimed at overturning wrongful convictions. The results uncovered those judicial errors existed in Europe as well. European judges were obliged to face what Luparia and Pitturi call a long-standing *taboo* that European judges do make mistakes and yes, there are wrongfully convicted persons in Europe as well [5]. Unlike in the U.S., in Europe, there is no single style of criminal procedure. Some European countries switched from an inquisitorial to an adversarial style of criminal procedure, some retained the inquisitorial style, and others made a mixed style of procedure. According to Kilias [6] several prominent causes for wrongful convictions were identified through cross-national studies in Europe: simplified and accelerated procedures with negotiated outcomes in the form of plea bargains and mostly penal orders. Gilleron [7] explains that these are the major factors for wrongful convictions because facts are assessed summarily and beyond the controls of the courts. Other sources for wrongful convictions are the unreliability of witnesses and incompetent or corrupt forensic reports [8]. However, both authors agree that the predominant problem for wrongful convictions in Europe is preconceived police and prosecutorial investigations. By law, they should investigate exculpatory evidence as well. Judges are obligated to critically assess what the parties present in court. However, this works in theory only, as certain researches from Luparia and Geert indicate that confirmation bias is very present in European court practice. Confirmation bias pertains to the tendency to uncritically confirm what the law enforcement authorities have found in the investigatory procedure or in the first instance procedure (should an appeal is lodged against a judgment) and to eliminate any other alternative hypotheses. As Geert puts it, such biases occur particularly under systems and in countries with a strong preference for consensual thinking [9].

The system of extraordinary legal remedies in Europe was mostly left untouched by the reform process. For overturning wrongful convictions and ascertaining judicial errors, only the "Revision of the criminal procedure" remedy can be considered as a main tool. Revisions are tools that benefit convicted persons, as it is the only way to ascertain judicial error and reverse the final decision. It allows the overturning of the final judgment due to the existence of new cognitive elements that reveal the court's faulty evaluation of the factual state. However, there is a mutual dependency between revision and judicial error. Luparia calls this a 'system security mechanism' where the error is a prerequisite for the request of revision, while on the other side, the judicial error gains legal significance after its assessment through the revision judgment [10]. This makes the system more efficient in guaranteeing the individual's personal freedom. Revision is perceived as a remedy operating only in favor of the convicted person. The most common type is a revision to the advantage of the accused who is convicted. All jurisdictions offer this remedy. Another type of revision is the *ad malam partem* revision or to the detriment of the convicted person. This type of revision is found in some jurisdictions in Europe, Croatia included.

The revision is often guided by the principle of the *novum* criterion. This criterion helps to ensure that any revision to the criminal procedure is not arbitrary but is based on solid reasons and evidence. Furthermore, this ensures that the revision is guided by objective criteria and promotes the goal of justice and fairness in the criminal justice process. Revision can be requested for all final judgments and decisions made by the court, only for factual issues *error facti*. Revision is allowed to be proposed at any time by the convicted person or his or her next of kin or person's guardian; if the convicted person is deceased, by his heir or a next of kin. However, revision is also permissible to be lodged by the public prosecutor or the procurator general. All judgments can be subject to revision. The only precondition is the finality of the judgment. Revision must not be understood as a fourth degree of judgment. Only the error that emerges from new facts can justify the overcoming of a final judgment.

The *novum* criterion or the new evidence criterion plays an important part in the revision hypothesis. The new evidence in the classical legal theory is divided into *noviter repertae, noviter productae, and noviter cognitae* evidence. The *repertae* evidence pertains to newly discovered evidence and refers to evidence that was not available at the time of the trial but has been discovered after the finality of the judgment. This type of evidence can include physical evidence, witness testimony, or other forms of evidence that could change the outcome of the trial if it had been presented during the original trial. The *productae* evidence refers to evidence that was not available at the time of the trial because it was not in existence. An example of this type of evidence could be a new scientific method that is used to re-test DNA evidence, which was not available at the time of the original trial. The *cognitae* evidence refers to evidence that was known to exist at the time of the trial but was not presented in the original trial. This type of evidence can include, for example, evidence that was withheld by the prosecution or defense, or evidence that was not considered relevant at the time but is now considered relevant considering new information.

However, there is a lack of consensus regarding the *novum* criterion in judicial practice. In Croatian jurisprudence, the applicability of the *novum* differentiates in theory and in practice. In theory, the court should be obliged to take into consideration all three types of *novum*. However, the inspection of several cases by the Innocence Project in Croatia, identified that the application of the *novum* by the courts is restricted mostly to the *noviter productae and repertae* evidence, and not so much to the *cognitae*.

*Addressing Wrongful Convictions in Croatia through Revision of the* Novum *Criterion… DOI: http://dx.doi.org/10.5772/intechopen.111427*

#### **3.** *Novum* **in the revision proceedings in Europe: Practices and experiences**

Here we will identify several legislative examples from Italy, Germany, and the Netherlands, because of their diverse and special laws for lowering the threshold of establishing a *novum* in the revision of the procedure. The interpretation and application of the *novum* ground vary between jurisdictions. The question of whether a different expert opinion or a change of law can be considered a *novum* is still a topic of debate among legal scholars. The criteria for what is considered new enough and how the new evidence is evaluated also differ between countries. Some countries require new evidence to prove the person's innocence, while others only require substantial doubt on the person's culpability. The standard for what is considered enough for revision is still under development. In European jurisdictions, there are two types of revision. The first type is the revision to the advantage of the convicted person, and the second type is a revision to the detriment of the convicted person, even though the proceedings resulted in his acquittal. The second type of revision exists only in some jurisdictions and is considered problematic regarding the *non bis in idem principle*. The jurisdictions of France, Belgium, and Spain do not accept revision *ad malam partem*. In France, there was a proposal to add this option in 2014 but it was ultimately rejected due to conflict with the Constitutional provisions of *non bis in idem* [11]. Meanwhile, Germany, Croatia, the Netherlands, Poland, Sweden, and England allow for revision to the detriment of the accused under specific circumstances. The *novum* being the most common ground for granting revisions, its interpretation depends on judicial determination in each country specifically. For instance, in Germany, facts can still be considered new even if they were discussed in the main proceedings, as long as the court did not take them into account deliberately. Furthermore, a change of law can also be a cause for revision in some jurisdictions but not in others. England and Croatia, for instance, allow for new arguments of law to be raised in the revision procedure, while Germany and the Netherlands reject a change of law as a ground for revision. The aim here is to detect the diverse practices and experiences these countries have and how can they be transferred into the Croatian criminal procedural legislation.

#### **3.1 Italy**

The Italian legal system, after the 1988 reform can be considered a hybrid system with both inquisitorial and adversarial traits. The Italian experiences of the revision proceedings and the establishment of *novum* are quite interesting and very close to the Croatian examples. The cases for renewal are stipulated in the Italian Code of Criminal Procedure [12], under which a revision can occur if: (a) the facts in the judgment or criminal decree of conviction are incompatible with those established in another final criminal judgment; (b) the decision was based on a judgment that was later revoked if new evidence that proves the accused person's acquittal is found, or (c) the judgment of conviction was delivered on the basis of false documents or statements. However, the new evidence must be exculpatory and prove the accused person's innocence. Another basis for revision of the procedure, allowed by the Constitutional Court of Italy, and not envisaged in the law is the revision based on compliance with an ECtHR judgment. To some extent, this is not seen as a direct remedy for judicial errors, and it is considered as an indirect remedy because it does not produce any new evidence [13].

Luparia and Pittiruti [5] explain the legal treatment of the revision proceedings stemming from the 1988 Code of Criminal Procedure where the assessment of admissibility and the revision trial are handled by the Court of Appeal. According to Article 634, paragraph. 2 of the 1988 CCP the Court of Appeal must preliminarily assess the admissibility of the request and exclude groundlessness while being careful not to evaluate the merit of the request. If the request is deemed inadmissible, the applicant can appeal to the Court of Cassation. If the request is deemed admissible, the revision trial can take place and the enforcement of the sentence can be suspended by the Court of Appeal. If the request is accepted, the judgment of conviction will be revoked and the acquitted will be ordered. If the request is rejected, the applicant can appeal to the Court of Cassation or file another application based on different elements. Furthermore, the judgment of the Court of Appeal can also be appealed to the Court of Cassation for errors in *procedendo*, *iudicando*, or *motivation*.

Concerning the clarity of the revision provisions in the law, Luparia notes that revision in article 630, paragraph 1, letter c of the Code of Criminal Procedure has been the subject of numerous legal interpretations, due to the lack of clarity in the law regarding the definition of "new evidence" pertaining to the *noviter cognitae* type of evidence [2]. Initially, he argues that the judicial praxis's interpretation was extensive and encompassed all three types of new evidence. Recently, this position was reversed to allow for admission in the revision of any evidence that was not considered by the court. Furthermore, Gialuz [14] identifies the challenge of balancing the limitations of a criminal trial with the continuous advancements in science and technology. Italian case law generally allows revision requests based on new scientific evidence, but there are difficulties in regard to reassessments of previously acquired evidence. However, with the inclusion of new evidence in the legal definition, the Court of Cassation reversed its stance and has started to allow revisions based on new scientific methods applied to previous evidence. The principle of *favor innocentiae* supports this adaptation of the trial to the advancements in science. Another extraordinary legal remedy in the Italian procedural system is the Rescission of the final judgment stipulated in art. 629-bis CCP [12]. This remedy allows a convicted person who was absent during the entire proceedings to obtain a revocation of the final judgment if they can prove that their absence was due to an inculpable unawareness of the proceedings. However, the requirements for this remedy, according to the practice of the Court of Cassation are very strict. Such example the absence must be ruled out if the accused had stated an address for service during the investigation phase. The request must be submitted within thirty days to the Court of Appeal in whose district the decision was taken and if accepted, the judgment will be rescinded and the case file forwarded to the first instance court. This remedy is a restorative *post iudicatum* remedy and is meant to protect the convicted if it is proven that the presumed knowledge of the trial was not accurate. The rescission of final judgment does not result in acquittal but rather a new trial where the accused can fully exercise their right of defense. The new judgment might end with the acquittal of the accused, making the rescission of final judgment a "mediated" remedy for miscarriages of justice.

Summarizing the Italian experiences, it is obvious that the extensive judicial policy of the Court of Cassation is crucial in the admissibility of new scientific evidence. It is important in jurisprudence not to limit the *novum* criteria to only evidence which were not known previously to the court—*the productae.* It is imperative to include scientific evidence from supplementary expertise (such as in DNA cases) as a point to establish a *novum*. Furthermore, as argued by Luparia and other Italian eminent experts, the accessibility to data is of crucial importance. In this perspective along the

*Addressing Wrongful Convictions in Croatia through Revision of the* Novum *Criterion… DOI: http://dx.doi.org/10.5772/intechopen.111427*

lines of the American experience, it would be advisable to create an Italian equivalent of the U.S. National Registry of Exonerations, providing detailed information on all the cases where final convictions were reversed in a revision trial. This tool would be extremely helpful for scholars to easily obtain the information and data they need to build their own theory on the causes of wrongful convictions, advance reform proposals, and share awareness.

#### **3.2 Germany**

The German style of criminal procedure is a classic inquisitorial type of procedure. The German CCP stipulates the grounds for retrying a case in sections 359 and 362 and there are two types of retrial: (a) in favor of the convicted and (b) in disadvantage of the convicted [15]. The grounds for retrial in favor of the convicted are: (a) if separate final verdicts have been reached which are in difference with each other; (b) If a procedural violation has been established by the European Court of Human Rights that has led to a conviction or a conviction of the same act, and a retrial is necessary in line with the principle of redress enshrined in article 41 of the ECHR; (c) If there is a new finding which was not known to the trial judge and, such if the judge would have been aware thereof, it must have most likely resulted in a different verdict. Concerning the applicability of the novum, retrial is possible should new facts or evidence is discovered, or falsified documents have emerged [16]. Furthermore, the law takes into perspective any false confessions from witnesses or experts given under oath or a judge or juror involved in the ruling being guilty of a criminal violation of their public duties. Concerning the praxis of allowing a retrial, they argue that the conditions for reaching a novum are stringent and have been criticized by experts for several reasons. One of the main criticisms is the high threshold of the requirement of proof, and the other is the possible conflict with the constitutional principle of non bis in idem. The provisions for a retrial to the disadvantage of the defendant under Section 362 nos. 1 to 3 of the Code of Criminal Procedure are largely similar to the provisions for a retrial in favor of the convicted persons in Italy. However, there are some differences between the two provisions that are worth noting. Section 362 no. 3 of the CCP, does not envisage the fact that the defendant caused a criminal violation of public duty, unlike in Section 359 no. 3 of the CCP. Furthermore, Section 362 does not contain any grounds for a retrial that correspond to those contained in Section 359 no. 4, which concerns the annulment of a civil court decision. On the other hand, Section 362 no. 4 includes grounds for a retrial that are not found in Section 359 such as the giving of a credible confession by the acquitted party to the crime in question. As this is a new ground that is not found in the Italian, Dutch, or Croatian legislation, A. Engländer and T. Zimmermann point out that this pertains to convicts who are boasting about the crime without punishment. They put this into perspective, as the convicts are factually guilty, but were exonerated on procedural grounds, or lack of evidence [17]. Furthermore, grounds for credible confession can be established when the confession comes directly from the acquitted person, meaning that the facts admitted must be logically possible and in line with reality. Furthermore, the confession must be given personally, and testimonial confessions from alleged accomplices are not sufficient. Permissibility and merit of the petition for retrial are reviewed using the addition method or Additionsverfahren envisaged in Section 366 et seq. The petition must specify the statutory ground for reopening proceedings and the evidence [16]. Furthermore, the petition must be signed by the defense counsel or other legal representative. If the defendant or a close family member wishes to seek a

retrial, they may do so in writing or orally, recorded by the court registry. The petition for retrial is decided by another court with the same jurisdiction to avoid unconscious bias or conflict of interests. The court reviews the formal requirements and evidence indicated in the petition.

Concluding the German experiences there is a need for up-to-date empirical knowledge and potentially establishing a national registry for exonerations to aid research. The lack of retrial statistics is also a problem. in Germany no official statistics are kept for successful retrial processes, making it difficult to determine the actual number of judicial errors. However, in Germany, certain Innocence Projects and academic studies are analyzing successful retrial processes and are publishing the results which would further aid the promulgation of updated legal solutions. Alongside the German Innocence Project which is monitoring the field situation, Lindemann and Lineau refer to the study by the Kriminologische Zentralstelle in Wiesbaden [18]. The preliminary results of these studies have shown that the majority of the wrongfully convicted persons had been convicted of sexual or violent offenses and the reasons for the errors were mainly false accusations and incorrect evidence from expert witnesses. Regional differences in handling retrial processes and the threshold for novum criteria were also noted. Also, several political initiatives in Germany campaigned to allow for the retrial of a defendant in criminal cases if new facts or evidence come to light. The idea was primarily driven by advancements in DNA analysis but was limited to murder and other crimes potentially subject to life imprisonment. However, these initiatives faced constitutional objections and the most recent proposal faced significant opposition in Parliament. Some of the concerns were that losing the current restriction on presenting new evidence would potentially undermine the principle of non bis in idem.

#### **3.3 The Netherlands**

The Dutch criminal justice system is inquisitorially based. What makes this system unique is the promulgation of the new law on lowering the threshold for establishing a *novum* in the retrial procedure. Before the promulgation of this law, wrongful convictions were perceived to be a problem that occurred abroad, and not in the Netherlands. The law was a product of the work of the Netherlands' Innocence Project and the several major cases that were revised based on the wrongful determination of the facts. As in Germany, the judge and the public prosecutor are expected to establish the truth. Knoops and Bell [19] argue that this system in the Netherlands will be successful only when the investigation is truly objective and when incriminatory and exculpatory evidence is fully disclosed to the defense. Concerning the retrial procedure, in the Netherlands, the Supreme Court determines whether or not a retrial should be granted. If it is granted, the case is referred to the Court of Appeals to conduct a new trial. The major case which has contributed to the promulgation of the Law on Redressing Miscarriages of Justice was the *Schiedammer Park Murder* case where a wrongful conviction was established. That case illustrated that the threshold for revision of the criminal procedure, was very narrow, and thus, a new Law was promulgated. The law on redressing the miscarriages of justice further expanded the review system of criminal cases to the advantage of the accused and lowered the threshold for establishing a *novum*. The promulgation of this law was not *pro forma*. The first new aspect of this law puts the focus on expert scientific findings to be subsumed under the *novum* criterion. Furthermore, this new law established the ACAS Commission for finding new facts and aiding convicted persons in identifying

#### *Addressing Wrongful Convictions in Croatia through Revision of the* Novum *Criterion… DOI: http://dx.doi.org/10.5772/intechopen.111427*