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Why should we care about palliative care for AIDS in the era of antiretroviral therapy?
  1. P A Selwyn
  1. Correspondence to:
 Dr Peter A Selwyn
 Department of Family and Social Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY 10467, USA; selwynaecom.yu.edu

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The possibility of pharmacological interactions between HIV medications and palliative care medications makes it essential to coordinate HIV specific and palliative care

Initially, in the now distant early years of the AIDS epidemic in the developed world, AIDS care was palliative care. As HIV/AIDS therapies have evolved rapidly since the mid-1990s, the focus of clinical care has increasingly been on antiretroviral therapy and the complex decision making that surrounds its use. While the growing “medicalisation” of AIDS is in part because of the advent of effective treatment with the possibility of controlling viral replication and disease progression, the emergence of this more biomedical paradigm has resulted in a loss of perspective on chronic disease and the issues relevant to progressive, incurable illness and end of life care. Early in the epidemic, HIV care providers were by definition palliative care providers. Now the challenge is to reacquaint what have since developed into two distinct disciplines, in order to provide our patients with the benefits of both types of expertise.

As outlined in the review article by Harding et al in this issue of STI (p 5), it is important for HIV care providers to remain sensitive to the need for palliative care interventions across the continuum of HIV disease. Palliative medicine has much to offer to HIV care, and can help improve quality of life, enhance adherence to HAART (highly active antiretroviral therapy) and other therapies, and address the complicated psychosocial issues now faced by patients with AIDS and their families. One of the unintended consequences of the HAART era has been the separation of AIDS care from palliative care: as our focus has narrowed, and our skills in reversing the previously inexorable course of HIV disease have grown, our overall care of the patient has lost some of its completeness.

Studies have consistently documented the under-recognition and under-treatment of pain and other symptoms in patients with AIDS, and have also consistently demonstrated a high prevalence of pain and chronic symptoms such as fatigue, anorexia/weight loss, nausea/vomiting, dyspnoea, and diarrhoea, both in the pre-HAART and current eras.1–7 Within the narrow biomedical model of care, such symptoms are generally regarded as secondary, or incidental, to the primacy of the infectious disease diagnosis which dictates appropriate pathogen specific treatment. While treating specific infections is obviously an essential and fundamental strategy in AIDS treatment, clinicians could benefit from the realisation that there is a large and growing evidence base for palliative medicine interventions which can be very effective as adjunctive or primary treatment for many of these disabling symptoms.8,9,10

In the developed world, we now face difficult decisions about withdrawal of care, goals of therapy, and acceptance of treatment failure and death in the age of HAART that are different from those in the former era when death was expected, imminent, and universal

In fact, one can argue that by treating such symptoms effectively—including, for example, the common gastrointestinal symptoms which can be induced by antiretroviral and other HIV specific therapies—we are in fact helping to promote adherence, which can be jeopardised when patients associate medication use with adverse subjective symptoms. Moreover, the possibility of pharmacological interactions between HIV medications (for example, certain antiretrovirals) and palliative care medications (for example, certain benzodiazepines, opioids, anticonvulsants, non-sedating antihistamines) makes it essential to coordinate HIV specific and palliative care. These are only two examples of how AIDS care should not be “either…or”that is, either palliative or disease specific therapy—but rather both…and” in the hope of integrating both paradigms in the comprehensive care of patients with AIDS.11

As the review indicates, there is also evidence that home based and community based care for patients with advanced illness can provide benefits in quality of life, and as we also know, chronic care coordination is essential for good adherence to HAART regimens over time. The HAART era has taught us that without these long term, community based systems for care and follow up, the risk of antiretroviral resistance grows, and patients are at risk of becoming “untreatable,” with multiple drug resistant HIV. We would do well to learn from the field of hospice and palliative care, where the approach of coordinated, multidisciplinary, home and community based care has been followed successfully for decades.

It should also be mentioned that in addition to the benefits of palliative care for improving quality of life and, potentially, HIV treatment adherence, the need for end of life care has not disappeared in the HAART era. Approximately 15 000 Americans continue to die from AIDS and/or co-existing conditions each year (for example, cirrhosis/liver failure, other end organ disease, non-AIDS defining cancers), and the rates of mortality decline have flattened since the late 1990s. HIV/AIDS remains a leading cause of death for African-Americans and Latinos, and for the foreseeable future, end of life care will be an unavoidable aspect of HIV care in these populations as well as in large areas of the developing world. In addition, in the developed world, we now face difficult decisions about withdrawal of care, goals of therapy, and acceptance of treatment failure and death in the age of HAART that are different from those in the former era when death was expected, imminent, and universal.

If anything, these matters have become more complex and nuanced than they were previously, and it is necessary for us to attend to the psychosocial issues involved in end of life care that may not be as familiar to today’s new generation of HIV care providers as they were in the earlier era when death was inescapable. To turn away from these important clinical issues makes us less effective in our treatment of our patients. If we become “antiretroviral specialists” then we lose something in our ability to provide our patients with the comprehensive care they need. The science and evidence base of palliative medicine have much to offer for improvement in quality of life, relief of suffering, enhancement of disease specific therapy, expert end of life care, and coping with chronic, progressive illness for patients and their loved ones. Recent efforts have attempted to address the importance of integrating HIV specific and palliative care in the HAART era.10,12 Our patients deserve nothing less.

The possibility of pharmacological interactions between HIV medications and palliative care medications makes it essential to coordinate HIV specific and palliative care

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