Supporting People Aging with HIV: What Palliative Care Clinicians Need to Know

Mr. T is a 68-year-old, heterosexual, cisgender man who was diagnosed with HIV in 1989. Today, his viral load is undetectable on antiretroviral therapy (ART), but his HIV is far from his biggest challenge. He now lives with hypertension, diabetes, hyperlipidemia, chronic pain from lumbar radiculopathy, peripheral neuropathy, and schizophrenia. He takes fourteen medications daily, only one of which is for HIV. This is his current reality, which is exacerbated by issues that come with aging.

Referred to an HIV-geriatrics program for worsening memory, Mr. T represents a new generation of long-term survivors of HIV—those diagnosed before ART became available in 1996, who are now navigating the complex realities of aging with HIV.

In this blog, we explore the complexities that this population faces as they age and the central role that geriatrics and palliative care clinicians play in delivering comprehensive support. We dive into the mechanics of team-based support for this population, exploring different frameworks and models of care, and the significant role of advance care planning.

Over the last four decades, HIV has transformed from a fatal infection into a manageable chronic illness. According to CDC surveillance data (2022), more than half of people living with HIV in the U.S. are aged 45 or older, and only 19% of new diagnoses occur in this age group. By 2035, projections suggest that more than 70% of people living with HIV in the U.S. will be aged 50 or older, most of whom will live with multiple chronic conditions.

While ART has extended life expectancy, aging with HIV often brings accelerated and accentuated aging, sometimes referred to as inflammaging. This means earlier onset and higher rates of comorbidities such as cardiovascular disease, neurocognitive decline, and frailty compared to peers without HIV.

There is a role here for geriatrics and palliative care clinicians, who can help improve quality of life for so many people living with the realities of aging with HIV.

In the early days of the HIV/AIDs epidemic, palliative care played a central role in supporting patients. As ART transformed prognosis, the need for this role faded. But now, as survivors are aging, the pendulum is swinging back, and the need for palliative care support is prominent—especially in partnership with geriatric specialists.

Together, geriatrics and palliative care clinicians bring unique skills to this population: from expertise in pain and symptom management, communication, functional assessment, advance care planning, and person-centered care. They can address not just survival but quality of life, and dignity in aging.

A practical tool to guide this integrated approach is by using the Geriatric 6M Framework for Older Adults with HIV, which helps clinicians to think with a geriatric lens—especially for those not trained in geriatrics. The framework, which provides a systematic, comprehensive, and holistic approach to address unique concerns for aging patients, helps clinicians assess and intervene across six domains.

Sources

• *Review medications via the ACB Calculator
• **Explore what matters most via the VACS Index

For Mr. T, this framework highlights both complexity and opportunity that may have been missed through standard care. His back pain and neuropathy limit his mobility; his cognitive decline threatens independence; his relapse to tobacco underscores stress and coping challenges. What “matters most” to him is regaining control of his pain and planning for his future, which are both critical entry points for palliative and geriatric engagement.

The comprehensive assessment saw Mr. T. as a whole person. It saw his functioning and what matters most, rather than just focusing on each specific disease process. Given Mr. T’s priorities of managing chronic pain and future planning, there is no better time to integrate palliative care into Mr. T’s care.

Palliative care is critical for the best outcomes for patients living with HIV—and should begin early. Common symptoms among older people living with HIV include pain, fatigue, anorexia, dyspnea, bowel changes, insomnia, and mood disorders.

The Edmonton Symptom Assessment Scale (ESAS) can help track symptom burden and guide interventions. Evidence shows that proactive treatment of pain and constipation, combined with addressing spiritual concerns, improves both emotional support and psychological well-being, benefits especially relevant to patients facing isolation or stigma.

A multidimensional, person-centered model aligns seamlessly with the comprehensive geriatric assessment (CGA), integrating physical, cognitive, psychosocial, cultural, and spiritual domains.

Advance care planning (ACP) remains one of the most powerful tools clinicians have in providing care for this population. For older adults with HIV, ACP ensures that care preferences are documented and respected across multiple care settings. Health care directives safeguard patients’ wishes, and Medical Orders or Provider Orders for Life-Sustaining Interventions (POLST/MOLST) forms translate those wishes into actionable medical orders.

Yet clinicians often encounter barriers. Patients may be reluctant to disclose their HIV status, or assume that longevity diminishes urgency, and complex nuclear or chosen family dynamics may be present.

There are also gray areas, including whether and when to discontinue ART near the end-of-life. While no consensus guidelines exist, shared decision-making grounded in a patient’s preferences, values, and beliefs is essential.

Patients who identify as LGBTQI+ present additional challenges to ACP, including needing to confront a long history of stigmatization and marginalization, lack of robust social support, discriminatory policies and practices, heteronormative assumptions, and disproportionate access to high-quality health care, among others. Therefore, it is imperative to engage in timely ACP discussions with a trauma-informed, inclusive, and responsive approach—with patients, their chosen families, and designated medical decision-makers.

Up to 90% of people living with HIV have experienced trauma, often from early life adversity, violence, loss, or systemic inequity. Mr. T’s history includes intimate-partner violence, incarceration, unstable housing, and racism—each shaping his health and engagement with care.

A trauma-informed approach, as defined by the SAMHSA framework, rests on four key assumptions: realization, recognition, response, and resisting re-traumatization.

The six guiding principles for trauma-informed care are: safety, trust, peer support, collaboration, empowerment, and attention to cultural, historical, and gender issues. Embedding these principles in clinical encounters promotes safety and engagement, fostering a foundation of trust that enables healing.

Older adults aging with HIV often face profound social isolation—loss of peers, stigma, limited family connections, and dwindling networks among others. For many, loneliness amplifies pain, depression, and cognitive decline. Despite these factors, there is also incredible resilience among older adults living with HIV, defined as the physical and psychological ability to resist functional and physical health decline as well as successful adaptation in the face of significant tragedy, trauma, and ongoing stressors.

Addressing social and structural determinants of health (SSDH) through community engagement, peer networks, and inclusive care models is as critical as managing comorbidities. Moreover, working with various members of the interdisciplinary team—including social workers, chaplains, mental health experts, rehabilitation therapists, and others—is essential to providing a multidimensional care approach for older adults living with HIV.

HIV is now a chronic disease, and the population of older adults living with HIV is rapidly expanding. These patients experience accelerated aging and higher rates of comorbidities, making it crucial to incorporate geriatric and palliative care principles into their care. The Geriatric 6M Framework for Older Adults with HIV provides a roadmap for comprehensive, person-centered care, and early palliative care involvement that can improve symptom management, emotional well-being, and quality of life. Advance care planning should begin early, reflecting each patient’s goals and chosen supports, while a trauma-informed, inclusive, and responsive lens ensures equitable, effective, and high-quality care delivery.

As Mr. T’s story reminds us, HIV may no longer define a person’s mortality, but it continues to shape how they live, age, and plan for the future. A close, collaborative approach between geriatric and palliative care clinicians enabl support this population with dignity, compassion, and hope.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.