Embracing Inclusivity in Hospice Care: A Case Study in Supporting HIV Patients

In a recently published article titled “A Request for Gender-Affirming Treatment in End-of-Life Care: A Case Study From an Inpatient VA Hospice Program,” the authors highlighted the complexities of providing compassionate end-of-life care to lesbian, gay, bisexual, transgender, queer, questioning (LGBTQ +) patients within a hospice setting. ¹ The case revolves around a Veteran assigned male at birth, admitted to a Veterans Affairs Community Living Center (CLC) hospice service. Despite a prognosis of six months, the Veteran courageously disclosed their desire for gender reassignment post-admission. This revelation presented a key moment for the medical team, demanding sensitivity, understanding, and a commitment to affirming the Veteran’s identity. ¹ This paper seeks to advance the discussion on the imperative of integrating hospice care into the continuum of HIV care in the Philippines. Central to this discussion is the recognition of hospice care as a vital component of comprehensive HIV care, encompassing not only symptom management but also psychosocial support, spiritual care, and end-of-life planning. ²

In the Philippines, as in many parts of the world, HIV/AIDS remains a significant public health concern, necessitating comprehensive and compassionate care throughout the disease trajectory. While researches have been madeto advance HIV prevention and treatment, there is a pressing need to expand the discourse on hospice care to better support HIV patients during their end-of-life journey. ³ There is a limited research on the relationship of persons living with HIV and palliative and hospice care. Despite the Philippines having the most rapidly increasing HIV epidemic in the Asia/Pacific region, there is a need to protect the mental health of persons living with HIV in the country. ³ A diagnosis of HIV often brings forth a cascade of psychosocial challenges. HIV positive individuals may experience fear, anxiety, and depression. ⁴ The stigma associated with HIV adds an additional layer of psychological distress, impacting not only the individual diagnosed but also their immediate social circles. Studies have consistently highlighted the bidirectional relationship between HIV and mental health. Individuals with mental health disorders may engage in higher-risk behaviors, increasing their susceptibility to HIV. Conversely, the stressors associated with an HIV diagnosis can contribute to the development or exacerbation of mental health issues. ⁴ In addition, the stress linked to coping with a severe illness like HIV can impact an individual’s mental well-being. Individuals with HIV are more prone to experiencing mood, anxiety, and cognitive disorders. Depression, for instance, is among the prevalent mental health challenges encountered by those living with HIV. ³

Hospice care, rooted in principles of patient-centeredness, comfort, and dignity, holds immense potential in addressing the unique needs of HIV patients as they navigate the complexities of terminal illness. Professor Robert Enck asked a crucial question concerning dignity: “do we really understand the term dignity, or are we just as confused as those who try to define it?”. ⁵ However, in the context of the Philippines, where stigma and discrimination against individuals living with HIV persist, providing inclusive and affirming hospice care poses distinct challenges. ³ First, the provision of hospice care for HIV patients in the Philippines must be grounded in inclusivity, cultural competence, and a commitment to addressing systemic barriers. Second, education and training initiatives are paramount to equip health care professionals with the knowledge and skills necessary to provide affirming care to HIV patients, free from judgment or discrimination. Third, fostering partnerships between health care institutions, community organizations, and government agencies is essential in building a supportive ecosystem that prioritizes the holistic well-being of HIV patients in their final days. Hospice care can be integrated seamlessly into existing HIV care frameworks, ensuring continuity and accessibility of services. This ensures a holistic approach to care for individuals affected by both conditions. Fourth, the principles of patient autonomy and dignity underscore the importance of tailoring hospice care to meet the individual needs and preferences of HIV patients. This includes addressing cultural nuances, facilitating open communication, and providing space for patients to express their identities and desires without fear of stigma or reprisal. Multisectoral approach must be made to integrate in hospice care for HIV patients. Comprehensive care models that address the physical, psychological, and social and spiritual dimensions of health are essential. ²

In conclusion, as the discourse on HIV care evolves, it is imperative that hospice care be recognized as a fundamental right of all individuals living with HIV, regardless of their background or circumstances. There is an urgent need to advocate for policy reforms, promote community engagement, and a culture of acceptance and inclusion. It is imperative that one must ensure that HIV patients receive the dignified and compassionate care they deserve in their final days. In advancing the conversation on hospice care for HIV patients in the Philippines, one must uphold the principles of equity, dignity, and respect. In embracing diversity and challenging stigma, one can create a more compassionate and inclusive hospice care where all individuals can live and die with dignity.