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JAIDS Journal of Acquired Immune Deficiency Syndromes:
doi: 10.1097/QAI.0b013e31802e1eac
Letters to the Editor

Treating HIV/AIDS Patients Until the End of Life

Harding, Richard BSc, MSc, DipSW, PhD*; Gwyther, Liz MBChB, MFGP, MScPallMed†; Powell, Faith Mwangi PhD‡

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*Department of Palliative Care, Policy and Rehabilitation, King's College London School of Medicine, Weston Education Centre, London, United Kingdom, †University of Cape Town, Cape Town, South Africa, ‡African Palliative Care Association, Uganda

To the Editor:

We read with interest Palella et al's analysis of mortality trends in the era of antiretroviral therapy (ART)1 and recognize the importance of such data in considering the needs of those who die as a result of HIV infection. Although the authors conclude that routine screening is necessary to detect the nontraditionally HIV-related conditions that are becoming more prominent in the risk of death, they did not discuss what appropriate intervention is required for those approaching the end of life.

There is no doubt that the current effective management of HIV and AIDS with antiretroviral drugs has had an enormous impact on the quality of life of patients and their families, and on extending good quality of life significantly.

There is also increasing emphasis on comprehensive prevention strategies, a key element in control of the pandemic. The facts that HIV patients die and that patients may experience a host of distressing symptoms during the period of illness before death are still ignored by many clinicians and people living with HIV/AIDS, however. The hope that ART brought to clinicians, patients, and families alike has allowed society to fall back into the comfortable illusion that death does not occur.

Although ART is central to the management of HIV infection, we believe that this has led to less than optimal outcomes for patients and family members. Evidence demonstrates a high prevalence of pain and other distressing symptoms throughout the disease trajectory resulting from the underlying infection and ART.2 Despite this, HIV-related pain is undertreated,3 and physicians detect around just one third of HIV-infected patients' pain and symptoms during clinical encounters.4 There has been a dearth of research activity in this field, despite evidence for the effectiveness of palliative care in managing pain and symptoms for people with HIV disease.5,6

Lack of understanding of the complexity and active nature of palliative care may contribute to the fact that clinicians do not implement palliative care principles alongside disease-oriented treatment. We conducted a systematic review of the abstracts presented at the recent International AIDS Society Conference (Toronto, 2006) to determine the evidence on the relation of pain and symptoms to prevention, treatment, and care and to identify management strategies. Our search strategy included all poster and oral presentations from the database, using search criteria of “pain,” “symptom,” “terminal,” “end of life,” “hospice,” and “palliative” (combined with the “or” connector).

Of the 4384 presented abstracts, 47 described primary data on pain or symptoms. Interestingly, the range of studies linked the experience of pain and symptoms to a range of prevention, treatment, and care domains. Pain and symptoms were found to have high prevalence and were associated with intolerable ART adverse effects, poor satisfaction with ART, low ART uptake, poor ART adherence, lower quality of life, sexual dysfunction, increased risk behaviors, and poorer ability to provide informal care, and neuropathic pain was found to have a similar prevalence among those who did and did not access ART.

Clearly, the range of data demonstrate the importance of assessing and treating pain and symptoms to those who seek to prevent HIV, maximize quality of life, and ensure maximum treatment outcomes. Neglecting pain and symptom control can reduce the ability to affect other areas of health care activity.

We were concerned to see a large number of presentations reporting high mortality in resource-poor settings (where ART availability is limited) and resource-rich countries (with emerging mortality attributable to malignancies and liver failure), none of which mentioned care for these dying patients. In the era of ART, we also have a duty to care for those who die as a result of HIV/AIDS.

We urge HIV clinical services to learn from the 31 presentations that detailed strategies to control pain and symptoms and to improve advanced and terminal care. Management strategies included palliative radiotherapy; cognitive behavioral therapy; symptom self-management instruction; changes to therapeutic regimens; and the provision of multiprofessional care for physical, spiritual, and emotional pain management at the end of life. Physical management in palliative care includes treatment support of ART, aggressive management of opportunistic infections, and pain and symptom management.

The World Health Organization (WHO) describes palliative care as an essential component of any HIV care service because of the distressing pain and symptoms experienced from the point of infection to the end of life, and skills to manage these problems are essential.7 It is important that HIV clinicians develop the knowledge and skills to deliver effective palliative care together with ART to ensure the best possible quality of life for our patients.

There is no dichotomy between pursuing provision of ART and palliative care. Patients require integrated pain and symptom control alongside ART.8 In addition, we have a duty to provide care throughout the lifespan of the infected patient, which requires the ability to provide appropriate end of life care for the 3.1 million people who died of HIV/AIDS during 2005,9 even in those countries with universal ART access. Effective palliative care enhances treatment adherence and quality of life. It also ensures control of distressing symptoms and dignity in death for those patients who die from AIDS-related causes.

Richard Harding, BSc, MSc, DipSW, PhD*

Liz Gwyther, MBChB, MFGP, MScPallMed†

Faith Mwangi Powell, PhD‡

*Department of Palliative Care, Policy and Rehabilitation King's College London School of Medicine Weston Education Centre London, United Kingdom

†University of Cape Town Cape Town, South Africa

‡African Palliative Care Association Kampala, Uganda

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REFERENCES

1. Palella FJ, Baker RK, Moorman AC, et al. Mortality in the highly active antiretroviral therapy era. J Acquir Immune Defic Syndr. 2006;43:27-34.

2. Harding R, Molloy T, Easterbrook PE, et al. Is antiretroviral therapy associated with symptom prevalence and burden? Int J STD AIDS. 2006;17:400-405.

3. Larue F, Fontaine A, Colleau SM. Underestimation and undertreatment of pain in HIV disease: multicentre study. BMJ. 1997;314:23-28.

4. Justice AC, Chang CH, Rabaneck L, et al. Clinical importance of provider-reported HIV symptoms compared with patient report. Clinical Medicine (Northfield, IL). 2001;39:397-408.

5. Harding R, Easterbrook P, Karus D, et al. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Trans Infect. 2005;81:5-14.

6. Harding R, Easterbrook PE, Dinat N, et al. Pain and symptom control in HIV disease: under-researched and poorly managed. Clin Infect Dis. 2005;40:491-492.

7. World Health Organization. HIV: palliative care. Available at: http://www.who.int/hiv/topics/palliative/care/en/. Accessed September 28, 2006.

8. Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs palliative care for late stage HIV/AIDS. JAMA. 2003;290:806-814.

9. UNAIDS. Global summary of the AIDS epidemic, December 2005. Available at: http://www.unaids.org/epi/2005/doc/EPIupdate2005_pdf_en/Epi05_02_en.pdf. Accessed September 28, 2006.

© 2007 Lippincott Williams & Wilkins, Inc.

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