On-line version ISSN 2078-5135
SAMJ, S. Afr. med. j. vol.100 n.3 Cape Town Mar. 2010
To the Editor: No one knows how many people die due to HIV-related causes in South Africa every year. According to the latest statistical release, HIV is the 9th leading underlying cause of death in the country.1 This is hard to believe. Research has shown that only about 25% of all deaths related to HIV are notified as such2 - either 'HIV' as an underlying or contributing cause of death is left out completely, or a euphemism for HIV is recorded instead. These euphemisms(e.g. immunosuppression, retroviral disease), although widely accepted by medical professionals, cannot be classified as HIV by the ICD-10 coders at Statistics South Africa, who may only code what they see.1
Why don't doctors write HIV on death notification forms? Factors contributing to this phenomenon include the misconception that one is not allowed to write HIV on the form, and issues around confidentiality.3 The two-page BI-1663 death notification form was created in 1998 inter alia to allow for HIV to be recorded on the second page, which is supposed to be sealed before being handed to the family. However, no mechanisms exist to protect the confidentiality of this document: official Department of Health guidelines allow for the completion of sections on the second page by Home Affairs officials and funeral undertakers.4 The concern that the cause of death of the deceased may be revealed to the next of kin and/ or other third parties is therefore justified.
This notwithstanding, there rests an ethical and legal obligation on the certifying practitioner to complete the death notification form 'honestly and fully'.5,6 Omitting the real underlying cause or stating incorrect causes amounts in reality to falsifying a legal document, bearing the penalty of a fine or imprisonment or both.6 Yet the HPCSA ethical guidelines also require practitioners to consider whether the effect of disclosing medical information of the deceased will cause distress to or benefit the next of kin.5
This ethical conflict may be resolved by simply writing B24, the ICD-10 code for 'HIV disease unspecified'.7 The use of this code to denote the underlying cause of death on the notification form fulfils both the legal and ethical requirements - it protects the deceased's confidentiality and at the same time ensures that the national statistics are accurately transcribed.
If this practice is implemented by practitioners countrywide, it will surely result in a substantial improvement in the quality of our HIV mortality statistics. Write B24!
Department of Family Medicine
University of Pretoria
1. Statistics South Africa. Mortality and Causes of Death in South Africa, 2007: Findings from Death Notification. Statistical release P0309.3. Pretoria: Statistics South Africa, 2009. http://www.statssa.gov.za/publications/P03093/P030932007.pdf (accessed 1 December 2009). [ Links ]
2. Yudkin PL, Burger EH, Bradshaw D, Groenewald P, Ward AM, Volmink J. Deaths caused by HIV disease under-reported in South Africa. AIDS 2009; 23: 1599-1602. [ Links ]
3. Akinnusi DM, Molosi LD. Low rate of reporting of confirmed AIDS-related deaths using BI-1663 forms by private medical practitioners in the Mafikeng, North West Province. S Afr J Epidemiol Infect 2008; 23: 20-24. [ Links ]
4. National Health Information System of South Africa. Training manual for the death notification form (BI 1663). 1999. http://www.doh.gov.za/nhis/vital/docs/deathmanual.html (accessed 11 May 2008). [ Links ]
5. Health Professions Council of South Africa. Confidentiality: Protecting and Providing Information. 3rd ed. Pretoria: HPCSA, 2008 (Guidelines for Good Practice in the Health Professions: booklet 10). http://www.hpcsa.co.za/downloads/conduct_ethics/rules/Generic%20ethical%20rules/Booklet%2010%20Confidentiality%20Protecting%20and%20Providing%20Information.pdf (accessed 23 December 2009). [ Links ]
6. Births and Deaths Registration Act 51 of 1992; Third Amendment of the Regulations on the Registration of Births and Deaths, 1992. Gazette No. 19006, Notice No. 879. Regulation 6216 (3 July 1998). [ Links ]
7. World Health Organization. ICD-10: International Statistical Classification of Diseases and Related Health Problems: Tenth Revision. 2nd ed. Volume 1. Geneva: World Health Organization, 2004. [ Links ]