What Is the Role of Palliative Care in the Current HIV Treatment Era?

Nurse and patient holding hands, end of life care
Nurse and patient holding hands, end of life care
Numerous barriers to palliative care in patients living with HIV have been identified.

As antiretroviral therapy has led to longer life expectancy among people living with HIV, the prevalence of aging-related and other comorbid disease has also increased in this population. A 2016 study, for example, projected a 44% increase in infection-unrelated malignancies over a 5-year period and a 28% reduction in infection-related malignancies.1 Additionally, data show that cancer is the leading non-AIDS cause of death in people living with HIV, and this situation does not appear to be improving, according to Richard Harding, PhD, director of the Centre for Global Health Palliative Care at King’s College London, in a paper published in Lancet HIV.2

According to a modeling study, 28% of individuals infected with HIV will have at least 3 comorbid noncommunicable diseases by 2030.3 “Lastly, the dying phase for people with HIV can cause enormous distress to their family members and caregivers” in terms of emotional, financial, and social functioning, wrote Dr Harding and colleagues.2 Taken together, these issues underscore the need for palliative care in this population at various stages, including end of life. In randomized controlled trials of palliative care in general, results demonstrated reductions in symptoms, in-hospital mortality, and cost, as well as improved physical and psychological functioning.2

Although home palliative care and inpatient hospice care have been linked with improvements in pain and other symptoms, anxiety, and spiritual well-being among people with HIV, numerous barriers to such care have been noted.2 These include service factors such as stigma within these settings, clinician factors including conflict between disease-oriented and palliative care and fear of analgesia misuse, patient factors such as reluctance to address end-of-life issues, and disease factors including lack of predictable illness course.

Ironically, in the early days of HIV treatment, all care was in essence palliative care. “However, the advent of [antiretroviral therapy] has arguably drawn focus away from the terminal care needs of people with HIV toward the behavioural and medical model of test-and-treat,” as stated in the recent paper.2 Despite its demonstrated benefits and endorsement by the World Health Organization and the World Health Association, the availability of palliative care is lacking in one-third of countries.2

Noting the competency of existing specialist palliative care services in managing symptoms and concerns like those common in HIV, HIV-specific “palliative care services might not be necessary if good teamwork between HIV physicians and palliative care teams can provide optimal treatment plans while minimising polypharmacy,” suggests Dr Harding and colleagues. “By paying attention to palliative and end-of-life care needs among people with HIV, an appropriate and effective continuum of care is truly achievable.”2

For additional insights into the state of palliative care in HIV, Infectious Disease Advisor interviewed Jessica Merlin, MD, PhD, MBA, visiting associate professor of internal medicine and infectious disease, University of Pittsburgh Department of Medicine.

Infectious Disease Advisor: Generally, what is the current state of palliative care for people living with HIV?

Dr Merlin: Depending on whether they’ve been diagnosed and treated, people with HIV now have a higher life expectancy, but they still live with pain — especially chronic pain —and other symptoms. [Editor’s note: It is estimated that pain affects 39%-55% of patients.4] Therefore, palliative care for HIV often involves treatment of pain and symptoms. There are still some people with HIV who receive traditional palliative care services, such as those who were diagnosed late and are really sick.

Infectious Disease Advisor: What are some of the unique considerations and challenges pertaining to palliative care in HIV?

Dr Merlin: There is a higher prevalence of mental illness and substance abuse in this population. [Editor’s note: In one recent study, for example, the prevalence of these disorders was 60% and 32%, respectively, and 25% of patients had co-occurring mental illness and substance abuse.5] Also, based on my clinical experience, these patients are often socially isolated and may not have disclosed their HIV status to the people they know.

These are factors that can influence the way patients interact with the healthcare system. Additionally, people with HIV have higher rates of non-HIV comorbidities,6 including hypertension, diabetes, and liver disease, so there may be a need for palliative care [to address these issues].

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Infectious Disease Advisor: What are additional recommendations for clinicians treating these patients?

Dr Merlin: It’s really important to discuss end-of-life planning with these patients. They may or may not have a spouse or children and may be estranged from certain family members, so it could be important to designate a healthcare proxy. In discussing this topic, clinicians might say, “This is something I talk about with all my patients. It’s always good to have a plan. I just want to make sure you’re prepared. Who do you know that is familiar with your medical history?”

Also, for reasons we don’t completely understand, people with HIV have higher rates of chronic pain. When patients present with these complaints, clinicians should make sure that they take the time to thoroughly evaluate the pain. As opioids are not the first line of therapy for pain, we have to make clear that we have other types of treatment to offer, and if addiction is present or develops, to make sure that is addressed appropriately.

Some patients are really focused on their opioids, so this can be a difficult conversation. Patients may have been started on opioids long ago, before we fully understood the associated risks, or they may be the only thing that has helped with their pain thus far. But if a patient is spending an entire visit talking about opioids, for example, or tearing up your phone lines [seeking opioids], that may be a sign of opioid use disorder (OUD). Clinicians should view this as an opportunity to treat OUD in a patient who is struggling.

If I’m concerned about potential OUD in a patient, I try to address it as I’m hearing it, using motivational interviewing techniques — it may take a couple of visits. If I’m the one prescribing and I suspect OUD, I may have the conversation and then switch the patient to buprenorphine. In some cases, it may become necessary for me to set limits about what I am able to offer, which may mean tapering or discontinuing opioids.

Clinicians and patients often conflate pain and opioids — they hear pain and think opioids. It’s important to make sure you’re addressing their pain and also the issue of opioids if that’s a concern.

Infectious Disease Advisor: What are some of the remaining research needs in this area?

Dr Merlin: The area I’m focused on is developing and testing behavioral interventions for chronic pain in patients with HIV. The types of therapies that work best for chronic pain are self-management skills that patients can use in daily life — such as physical activity, improving sleep, and mindfulness. I just received a grant from the National Institutes of Health to conduct a trial of behavioral therapy for chronic pain in HIV, based on a pain management program I previously developed and pilot tested.7


  1. Shepherd L, Borges Á, Ledergerber B, et al; EuroSIDA in EuroCOORD. Infection-related and -unrelated malignancies, HIV and the aging population. HIV Med. 2016;17(8):590-600.
  2. Harding R. Palliative care as an essential component of the HIV care continuum [published online July 16, 2018]. Lancet HIV. doi:10.1016/S2352-3018(18)30110-3
  3. Smit M, Brinkman K, Geerlings S, et al; ATHENA Observational Cohort. Future challenges for clinical care of an ageing population infected with HIV: a modelling study. Lancet Infect Dis. 2015;15(7):810-818.
  4. Merlins JS, Tucker RO, Saag MS, Selwyn PA. The role of palliative care in the current HIV treatment era in developed countries. Top Antivir Med. 2013;21(1):20-26.
  5. Brion J, Kemppainen J. The important role of mental illness and substance abuse in successful management of HIV infection. J Assoc Nurses AIDS Care. 2017;28(2):181-184.
  6. Merlin J, Pahuja M, Selwyn PA. Palliative care: Issues in HIV/AIDS in adults. UpToDate. https://www.uptodate.com/contents/palliative-care-issues-in-hiv-aids-in-adults. Accessed August 27, 2018.
  7. UPMC. Pitt Doctor Gets Grant to Evaluate Self-Management Approach to Chronic Pain in HIV Patients [press release]. https://www.upmc.com/media/news/merlin-grant.aspx. August 21, 2018. Accessed August 27, 2018.