First steps: Health and social care professionals beginning to address the palliative and end of life care needs of people with diverse gender identities and sexual orientations in Lebanon

Background

Lesbian, gay, bisexual, and transgender (LGBT) people experience distinct health disparities (Elliot et al., 2015). The prevalence of serious illnesses, especially certain types of cancer, is higher among LGBT individuals compared to their cisgender heterosexual counterparts (Brown and Tracy, 2008; Dibble et al., 2004; D’Souza et al., 2008; Feldman and Goldberg, 2007; Katz et al., 1994). In addition, LGBT people are more likely to present with an advanced illness, and are less likely to attend routine health screening (Bristowe et al., 2018; Clark et al., 2001; Stein and Bonuck, 2001) compared to cisgender heterosexual people. The available evidence demonstrates that LGBT people face challenges when accessing palliative care services, and receive suboptimal care at the end of life (Bristowe et al., 2018; Green and Grant, 2008; Harding et al., 2012). This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, transphobia, and homophobia (Bristowe et al., 2018; Chidiac and Connolly, 2016; Reygan and D’Alton, 2013).

In recent years, there have been some developments in the area of LGBT rights activism in Lebanon. These sporadic developments have contributed to a promising gradual shift in legal and societal attitudes towards LGBT people. There has been a noticeable increase in advocacy for LGBT rights witnessed through landmark legal rulings, inclusion of LGBT people in a few mental and sexual health education programmes, and increased visibility in media (Naal et al., 2018; Obeid et al., 2020). In 2011, a Lebanese judge ruled against gay sex being considered ‘unnatural’ (INTO, 2018). In 2014, another Lebanese judge dismissed charges against a transgender woman who was prosecuted for having a sexual relation with a man (The Daily Star, 2014). More recently, a Military Tribunal judge dismissed charges against four Lebanese soldiers who were prosecuted for homosexuality (L’orient Le Jour, 2019). Despite this progress, discrimination and stigmatisation continue to be common characteristics of LGBT people’s lives. Legal and institutional support remains scarce, where criminalisation and prosecution remain a reality for many LGBT individuals in Lebanon. Instances of institutional abuse include the alleged forced anal examination which was performed on a group of detained men to ‘determine’ their ‘sexuality’, and allegations that a transgender woman was subjected to physical violence, and mental abuse by the police (INTO, 2018). The limited LGBT health efforts have mainly focused on an illness-based approach; specifically referring to sexually transmitted diseases and mental health issues, with little attention paid to the broader health and well-being needs of this population in the context of living with a life-limiting illness. Moreover, the provision of palliative care in Lebanon is still scarce and fragmented, where the focus is still on changing legislation relating to the availability of opioids, and policy changes for integrating palliative care into mainstream healthcare to make it more accessible (Osman, 2015). This ultimately compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual.

In response to these challenges, the Lebanese Medical Association for Sexual Health (LebMASH), in collaboration with the Lebanese Centre for Palliative Care - Balsam, developed and piloted a workshop for health and social care professionals providing palliative and end of life care for LGBT people. This workshop was a groundbreaking initiative, and the first of its kind in the Middle East and North Africa (MENA) region. It was based on an adaptation of an existing training programme which was developed and evaluated in the UK by the author, and later became embedded in national training initiatives and health and social care curricula (Hospice UK, 2018). Consequently, this workshop broke new ground, and may be regarded as an innovative model of best practice in the MENA region. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon. It also explores how this initiative has led to further developments and how these efforts can be replicated in the MENA region.

Workshop aim

The aim of the workshop was to explore the issues and needs of LGBT people with a specific emphasis on those needing and receiving palliative and end of life care. It was also aimed at providing participants with the opportunity to reflect on, and identify ways of providing culturally competent care for LGBT people, and their families and partners within a palliative care context.

Workshop outline

After discussions with key stakeholders, it was decided that a one-and-a-half-hour workshop be developed. The workshop was an adaptation of a well-evaluated training programme in the UK, which was developed by the author, and presented in a national report as a case study of best practice example (Hospice UK, 2018). The workshop was open to health and social care professionals, and students who work or have an interest in palliative care, or provide care to people with advanced illness. Over 30 people participated in the workshop, which was held at the Lebanese Centre for Palliative Care - Balsam in Beirut. The workshop included information on terminology and definitions related to gender and sexual identities; some research on the Lebanese context; general LGBT issues and needs in Lebanon; LGBT issues and needs specific to palliative and end of life care, and approaches to creating LGBT-affirmative services in a Lebanese context.

The workshop also included the trailer of the (Gen Silent) documentary which follows the lives of older LGBT people living with advanced illness in the Boston area, and an expert in LGBT end of life care from the UK shared her experiences of addressing gaps in current knowledge about the lives of older LGBT people. The workshop was intended to fit the needs of a diverse group of health and social care professionals, and students from different religious and cultural backgrounds. Therefore, the focus was not merely on disseminating new knowledge; rather, the emphasis was on changing attitudes and beliefs towards LGBT people.

Evaluation and findings

The workshop was evaluated by self-report questionnaires before and after the workshop. The questionnaires focused on the level of knowledge, comfort, and confidence of participants. Over 30 participants (N = 32) attended the workshop, and participated in the evaluation. Among the participants, the largest group of professionals was nurses (59%), followed by medical doctors (18%). Most of the participants were in the age group 30–39 (53%), followed by people in the age group 40–49 (28%). The majority of participants identified as males (53%), followed by females (47%). The majority of participants identified as heterosexual (59%), followed by homosexual (41%).

There was an increase in the overall knowledge of palliative and end of life care (15.6% not knowledgeable before vs. 0% after), general LGBT issues and needs (31.2% not knowledgeable before vs. 0% after), and LGBT issues and needs specific to palliative and end of life care (78.1% not knowledgeable before vs. 0% after). There was an increase in the level of confidence in providing palliative and end do life care (56.2% not confident before vs. 0% after) to LGBT people. Also, there was an increase in the level of comfort in using terms related to gender and sexual identities (25% not comfortable before vs. 0% after). All participants indicated that they found the workshop to be useful for their practice, and that they would like further training in this area. The majority of participants (78.1%) rated the quality of the workshop as ‘excellent’, and all participants indicated that they would recommend it to their colleagues. Qualitative feedback was also obtained where participants were asked to provide narrative feedback at the end of the workshop. A key finding was a demand for further training, and a clear desire to learn more.

Discussion

To our knowledge, this was the first initiative of its kind in the MENA region. It sought to address a gap in palliative care service provision, and to function as a pilot for a larger and sustainable initiative. This workshop demonstrated that despite the minimal legal and institutional support for LGBT people in Lebanon, such initiatives are welcomed by health and social care professionals. However, cultural and spiritual considerations need to be accounted for in the planning phase. Therefore, involving members of the executive team to oversee, provide leadership, and influence strategic decisions is crucial in ensuring successful implementation of such initiatives. In addition, engagement of key stakeholders, including members of the LGBT community, is vital as a facilitator, and to build on and anchor the change.

This workshop started a dialogue about palliative and end of life care for LGBT people, a topic that had never been addressed previously in Lebanon. This also resulted in further developments in this area, including events planned for LebMASH National LGBT Heath Week to keep a focus on improving equity in the provision of palliative care in Lebanon. In addition, conversations with academics have been initiated to explore how this workshop can be introduced to health and social care curricula.

Despite international policy recommendations to improve healthcare provision to LGBT individuals (Bristowe et al., 2018; Department of Health and Human services, 2007; National End of Life Care Programme, 2010), legislative change supporting the rights of LGBT people is still lacking in Lebanon. The Lebanese Penal Code, Article 534, which states that sexual intercourse contradictory to nature will be punished by imprisonment, means that LGBT people can be prosecuted and fined. This will in turn hinder LGBT people from accessing healthcare services (Chidiac and Connolly, 2016; Marie Curie, 2016) at a time of increased vulnerability.

In addition to legal reform, public health approaches are needed to rectify a service gap for LGBT people living with advanced illness. This requires public education, community engagement, and partnership working between healthcare providers, members of the LGBT community and LGBT organisations. Moreover, LGBT people fear accessing healthcare services due to anticipated discrimination and stigmatisation (Bristowe et al., 2018). Approaches to creating LGBT-affirmative service provision at individual and organisational levels are needed. In the Lebanese context, this needs to include an explicit non-discrimination statement, and policy based on sexual orientation and gender identity; increased visibility of LGBT-related materials in healthcare settings; use of inclusive and respectful language and documentation process; and embedding education on LGBT issues in health and social care curricula and in professional training and development.

Conclusion

This workshop responded to a real need within the health and social care arena in Lebanon. Findings from the evaluation of the workshop highlighted that training in LGBT issues was well received, and that there is a need for further training in this area. The openness of participants, and their eagerness to provide culturally sensitive care to LGBT people was apparent during the workshop. This reflects the gradual shift in societal attitude towards LGBT people in Lebanon.