Nursing Ethics

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What Should HIV/AIDS be Called in Malawi? Adamson S Muula Nurs Ethics 2005 12: 187 DOI: 10.1191/0969733005ne781oa The online version of this article can be found at: http://nej.sagepub.com/content/12/2/187

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WHAT SHOULD HIV/AIDS CALLED IN MALAWI?

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Adamson S Muula Key words: CD4 count; HIV/AIDS; immunosorbent assay; immunosuppression; Malawi HIV/AIDS is the leading cause of morbidity and mortality in the southern African country of Malawi. At the largest referral health facility in Blantyre, the Queen Elizabeth Central Hospital, the majority of patients hospitalized in medical wards and up to a third of those in the maternity unit are infected with HIV. Many patients in the surgical wards also have HIV/AIDS. Health professionals in Blantyre, however, often choose not to write down the diagnosis of HIV or AIDS; rather, they prefer to use ‘SGOT’, ‘ELISA’ and ‘spot test’ to represent the HIV test, while ‘immunosuppression’, ‘¡/CD4 disease’ and ‘ARC’ are preferred instead of ‘AIDS’. It is possible that health professionals’ belief that mentioning HIV and/or AIDS will harm patients is encouraging them to use these euphemisms. The use of less than exact terms to label HIV and AIDS may not be without cost. For instance, future attempts to conduct retrospective case study research may be hampered by this practice, which is not in accordance with the international classification of diseases. It is suggested that, although stigmatization and discrimination could be important driving factors in the use of cryptic language, it may be more worthy to fight discrimination and stigmatization head-on, rather than create avenues where these reactions may be perpetuated.

Background In Malawi, the occurrence of human immunodeficiency virus (HIV) was first reported in 1985 in an adult patient. Its diagnosis in a paediatric patient was made in the following year at the Kamuzu Central Hospital, in the capital city, Lilongwe. Patients having what is now known as AIDS were being described or diagnosed as having ‘ARC’ (AIDS-related complex) if the clinical features were minor (WHO clinical stage 2) or ‘full-blown AIDS’ if these were major clinical features, which currently would be WHO AIDS clinical stages 3 and 4. The lay diagnoses of HIV/AIDS include: matenda amasiku ano (the disease of these times), matenda aboma (the government’s disease), zomwezi (these things), ntengano (the disease that leads to both wife and husband dying together or dying one after another), kaliwondewonde (slim disease) and edzi (AIDS). During 2004, being HIV infected was sometimes referred to as wavulalira mkati (being damaged from the inside). Address for correspondence: Adamson S Muula, Department of Community Health, University of Malawi, College of Medicine, Private Bag 360, Blantyre 3, Malawi. E-mail: [email protected]

Nursing Ethics 2005 12 (2) # 2005 Edward Arnold (Publishers) Ltd

10.1191/0969733005ne781oa

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Araya et al. report that in Ethiopia lay diagnoses of HIV/AIDS include lung disease (samba beshita), cold (berd) and ye gizeyaw, zamanu beshita and kesafi beshita (the disease of the times or the disease that kills.1 These authors suggest that the terminology used to label the disease is not really an attempt to ignore or deny the existence of HIV/ AIDS but rather ‘a way to alleviate an offensive reality without explicitly lying about it’. These words used to describe HIV and AIDS in less than exact terms do not occur only among lay members of the community; health professionals also resort to such words. In Malawi, HIV and AIDS have been recorded in patients’ case notes as ‘ELISA disease’ (i.e. enzyme-linked immunosorbent assay), ‘immunosuppression’ or ‘immunosuppressive illness’, and/or ‘ ¡/CD4 disease’. The HIV blood test has been termed the ‘ELISA test’ (even when an enzyme-linked immunosorbent assay is not used), ‘SGOT’, ‘spot test’ and of course ‘HIV test’. In this article, I attempt to describe the possible reasons why these terms have been used, what has been the general community and medical community’s response, and the ethical and professional issues that may be associated with such use.

Origins of the terms Estimation of serum glutamate oxaloacetate transaminase (SGOT) is used to detect acute myocardial infarction or acute hepatic disease, and to monitor progress and prognosis in these conditions. This enzyme is found mostly in the cells of the liver, heart, skeletal muscle, kidneys, pancreas and red blood cells. Its serum level is proportional to the extent of the cellular damage.2 The first HIV test to become available in Malawi utilized the ELISA technique. Prior to the advent of HIV, it would seem that not much ELISA testing was carried out in this country. This procedure has therefore become synonymous with HIV testing, although there are other laboratory tests that use the technique. ELISA testing for HIV requires serum, as opposed to a whole-blood sample, it therefore usually takes longer to achieve a result. Most manufacturers produce reagents that have to be used for serum batches (several samples). In order to accumulate enough samples to make testing cost-effective, it can be up to two weeks before patients know their results. Rapid whole-blood spot tests have revolutionized HIV testing by producing results within 15 minutes. ELISA testing requires highly skilled laboratory personnel, but rapid tests may not have this requirement, therefore improving accessibility to such tests in remote areas where laboratory staff may not be available.3 Rapid HIV testing also offers the possibility of intervening during labour to administer antiretroviral therapy to prevent vertical HIV transmission in a previously HIV untested, but infected, woman.4 Since they take only a short time to complete, rapid HIV tests are called ‘spot tests’ (they are ‘on the spot tests’). AIDS has also been described as ‘the immunosuppressive condition’. However, there are many other immunosuppressive conditions such as chronic renal failure, malnutrition, cancer chemotherapy, diabetes mellitus, chronic use of corticosteroids and radiation therapy, but describing AIDS as ‘the immunosuppressive condition’ gives the impression that there is only one such cause or reason for immunosuppression.

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Terminology for HIV/AIDS in Malawi 189 HIV and AIDS have also been called ‘ ¡/CD4 disease’. HIV affects mostly the immune cells, so T-lymphocyte CD4 cells are particularly affected. The depletion in number and reduced function of these cells is responsible for the decline in cell-mediated immunity, resulting in opportunistic infections and cancers, such as tuberculosis, Pneumocystis carinii pneumonia, aggressive Kaposi’s sarcoma and several diarrhoeal conditions.5,6 The question, however, is whether, because HIV infection results in a reduction of CD4 cells,7 it is then legitimate to label AIDS as a ¡/CD4 disease.

Why not tell the truth? It is often suggested that respect for patient autonomy means telling the truth to patients.8 However, absolute adherence to the principle of always telling the truth has been challenged by some authors.9 One reason is that health practitioners’ goal should be to serve the best interest of patients. Telling the truth at all times may not always serve their best interest because the timing, the place and how it is done all affect how patients may respond to the telling. The first question to consider is why do health professionals not ‘call a spade, a spade’ but call HIV and AIDS something else? There are a number of possibilities, but it would seem that health professionals wish to limit the harm caused to patients. This could be considered as an attempt to serve the best interests of patients. It may not be best for them to know that they have a life-threatening illness because such knowledge may lead to their being anxious. Why do health workers attempt to hide a diagnosis of AIDS when writing in patients’ case notes when the notes are rarely given to persons who are not health workers? It would appear that these health professionals are attempting to hide the diagnosis from other health professionals. However, this does not make much sense because the health workers who may handle a patient’s case notes would themselves know that the patient has HIV or AIDS, since they would know the key to the cryptic language used. The only alternative plausible explanation is that health workers are hiding the diagnosis from the patients themselves in case they have access to their notes. This would seem plausible because the first instances of using ‘SGOT’ to mean HIV and/or AIDS came about when a particular surgeon was testing his patients without their knowledge and therefore without their consent. It appears that there was no particular reason for choosing such a test. In the event that patients or their guardians had access to the case notes, they would not normally know the meaning of the letters SGOT unless they specifically asked. This raises the question of whether HIV testing without a patient’s consent can be justified. There is also another possible reason, which is to hide the patient’s diagnosis from other personnel who may handle the case notes (e.g. reception and domestic staff) either as part of their normal duties or when they are recruited as extra staff. Domestic workers, for instance, are sometimes called on to transfer patients and their case notes, or take notes from one section of the hospital to the other. As long as these workers do not know what the various cryptic words mean, they are excluded from knowing a patient’s diagnosis. In this case, the use of technically questionable terms to describe HIV would serve to preserve the patient’s confidentiality. Calling HIV and AIDS by different names is not entirely an unknown practice. In everyday conversation, people find ways of saying the same thing (while not lying),


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but saying it in a different way. Words like ‘passing on’, ‘passed away’ or ‘loss’ are used to mean death. In Malawi, the Chewa people would say apita (she or he is gone), atayika or amwalira (has got lost) in preference to kufa (died). By saying these words, no attempt is made to hide the reality of the truth; it is just that one is being aware of a culturally sensitive issue. Perhaps health professionals in Malawi, as part of the wider community, are attempting not to be insular and disregarding of cultural sensitivities, lest they be accused of being inhumane.

Ethical challenges One possibility why health professionals in Malawi use terms like ‘immunosuppression’, ‘ ¡/CD4 disease’, or ‘spot test’ is that the majority of Malawian patients are illiterate and, even among the few who can read, many are not medically literate. HIV and AIDS are terms in common usage and it is difficult to hide them from the public. However, words like immunosuppression, SGOT and spot test can easily be hidden. Even when patients can read and write, they would hardly ask questions about what is written about them in medical case notes on the occasions when they have access to their records. Hiding the diagnosis from patients would make sense if testing was occurring without the expressed consent of the patients, or of their guardians in the case of children and incompetent adults. The official guidelines in Malawi, however, are that HIV testing should only be done voluntarily, so patients would know that they are being tested. If health professionals are hiding the testing or the diagnosis of AIDS from patients, it would suggest that HIV testing is being done without explicit consent and patients would not know that they are being tested or that a diagnosis of AIDS has been made or contemplated. Failure to disclose to a patient the tests done on them or their diagnosis infringes patient autonomy and can be construed as being unduly paternalistic. As knowledge of one’s HIV status can lead to avoidance of harm, for instance by consistently using condoms with all future penetrative sexual encounters when there is a positive HIV test result, withholding knowledge of HIV status from patients can be perceived as facilitating both individual and public harm. As a general rule, HIV testing should be done with the full consent of a competent adult in order to facilitate a positive behavioural change. That health professionals may use hidden terminology in order to avoid harm in the event that the case notes are accessed by unauthorized persons may be acceptable. Although the medical records of hospitalized patients are kept at the nurses’ station except when there is a ward round in progress, it is not unusual to see patients’ guardians and visiting friends perusing case notes during visiting hours at times when the notes have been left by patients’ bedside. Guardians or relatives may also have access to patients’ case notes if they are sent to the laboratory to collect blood (for transfusion), or when they are asked to carry the notes (owing to lack of adequate health and support personnel) when patients are transferred from one ward to another. Guardians and relatives may assist in the transfer of patients and personal items at these times. In the absence of HIV and AIDS literacy to the level of understanding the meaning of CD4 counts, or what an ELISA is, patient confidentiality may be preserved if the case notes are not explicit about the diagnosis of HIV and AIDS. In this instance,


Terminology for HIV/AIDS in Malawi 191 health professionals who do not specify an HIV and/or AIDS diagnosis may be guided by the desire to avoid harm. Although it may be possible for patients and their families to be prevented from experiencing harm by the inadvertent disclosure of HIV serostatus through access to case notes by ‘unauthorized’ persons, it should be of concern that such medical records may be rendered less useful at a later date, especially when conducting retrospective studies. If reviews are carried out and the term ‘SGOT’ is used in case notes to mean an HIV test, unless researchers know the history of the usage of the term within a specified period at that health facility, these case notes may be misleading. Advances in medical research may be hampered by such potentially deceptive case notes. This then signifies a dilemma whereby health professionals have a duty to the patients (i.e. by preventing potential harm that could result from disclosure) but also a duty to the profession by contributing authentic medical records that are a true reflection of the history, physical examination and laboratory tests conducted. It is fortunate that we are not aware of any litigation involving health professionals in which patients’ notes have been used as evidence. If that were to occur, the health profession in Malawi would potentially be brought into disrepute because the use of euphemistic terms would be made known to the public. It should also be noted that imprecision in the use of accepted terminology relating to HIV and AIDS is a global problem. Taking the name ‘acquired immunodeficiency syndrome’ (AIDS) itself, as has already been noted, it is not just HIV that may result in acquired immunodeficiency (other causes being malnutrition, cancer chemotherapy, long-term corticosteroid use etc.), yet this term has come to be applied to HIVassociated immunodeficiency only. Perhaps we should now be using terms such as; HIV-related AIDS, malnutrition-related AIDS, chemotherapy-related AIDS and so on, and not just ‘AIDS’.

Possible solutions The stigma and discrimination that HIV and AIDS patients suffer at the hands of both lay members of the community and health care workers may be driving health workers to use terms that do not explicitly describe the presence of HIV and AIDS. It is possible that many of those using terms such as ‘SGOT’, ‘ ¡/CD4’, or ‘immunosuppression’ are doing so to minimize potential harm to patients. It may appear to make sense for these to be used if there is the potential for someone who should not know the diagnosis to have access to the case notes. The use of euphemisms may therefore be a response to the poor levels of confidentiality present in Malawian health facilities. The HIV and AIDS pandemic presents opportunities for reflection and improving our health care systems so that high levels of confidentiality are maintained at all times.

Acknowledgements The writing of this article was funded by the Trocaire HIV/AIDS Literacy Project through the Malawi Health Equity Network.


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