Pula: Botswana Journal of African Studies Vol. 15 No 2 (2001) Human rights and ethics in the context of home-based care in Botswana Christine Stegling Botswana Network on Ethics. Law and HIV/AIDS, Gaborone The paper is based on two case studies on home-based care in Kweneng district, Botswana. in March-April 2000. Ethical and legal issues emerged that are in dire need of attention. Is home- based care an ethical solution in a country where almost fifty per cent of the population live below the poverty datum line? Is there adequate provision of food. shelter. physical and psychological support for the patients and families in home-based care? Do patients and carers have any choice about the care setting they prefer? The current stance on confidentiality may also be detrimental to breaking the silence surrounding the epidemic. Most of the carers are women living in cohabitation. Revision of property rights and inheritance laws is necessary to support those who are providing care for the terminally ill. Home-based care in Botswana should not be seen as a tool to de-congest hospitals. but as a way of providing quality care for AIDS patients at home. Introduction With the HIV epidemic becoming ever more visible in Botswana, the question of care for those who are falling ill with AIDS is more crucial today than it has ever been before. Addressing the care of AIDS patients is difficult in any country at the best of times but even harder in those countries that are characterised by a lack of resources in the health sector, ~otswana being one of them. Despite the achievements Botswana has made since mdependence in 1966, the health sector is facing a growing number of problems related to the advancement of the pandemic. This trend is not made any better by the recent exo~us of nurses from a health system that is characterised through under-staffmg and de-motIvated professionals due to unfavourable working conditions. Botswana's answer to the growing number of AIDS patients in need of quality care has been the government led and supported introduction of community home-bas~~.care as a strategy that transfers some of the responsibilities of care from the health facI!ltles to th~ community and ultimately to the family. As commendable as this idea .mayb~ m theory, It faces serious challenges in its practical implementation due to the socIal envrronmen~that forms the framework to the programme. Many of the social realities that have been eVIdent for the past decades are more pronounced and visible in a situation in whi~h gove~ent needs to rely heavily on the resources of its citizens. Poverty and gender m~quahty, f~r example, have been features of Botswana society despite the country's soclo-economlc successes in past decades but are now even more in need of addressing in the face of the Worsthealth crisis the country has ever experienced. h . The following paper seeks to address the concept of home-based care from a uman n.ghts perspective in the context of a developing country. The autho~makes an attempt to dISCUSS the importance of adopting a rights framework when analysmg the car~ ?f AII?S patients in Botswana. It is argued that protecting human rights of people hvmg WIth mV/AIDS is paramount to a public health response to the epidemic. However, ~IV poses serious ethical dilemmas to Botswana society that need to be publicly debated m ord~r~o make a meaningful difference in the fight against a commo~ ene~y. ~e first partn~ ~ paper attempts to discuss human rights in relation to the epIdemIC,whJie the secO ts p f describes the concept of home-based care and its realities in Botswana. The argu: ~ the latter part of the paper are mainly based on two research studies that were unde en m 241 Kweneng District in March-April 2000. The main focus of the argument is that in .the current social and political environment of Botswana, home-based care may be an unethical solution to the care crisis, especially with reference to Vision 2016 and its notion of Botswana becoming a compassionate, just and caring nation. Human rights and HIV/AIDS . Why, one may ask, do scholars develop a human rights framework when addressmg HIV/AIDS when they do not do that in the case of any other disease, such as cancer or tuberculosis. The answer may be simple but should be convincing. AIDS is different because of its communicability through sexual contact, therefore, AIDS presents us with complex problems of stigma that we hardly find with any other disease. Such stigma often leads to the social marginalisation and persecution of those who live with the virus. At a recent conference in Botswana, I fmdings of a study undertaken in 1999 in the Chobe District were revealed to a shocked audience of health practitioners, people living with the virus and members of the academia. According to the study, of the over 700 people interviewed, many displayed outrageous attitudes to people infected with HIV, such as suggesting that HIV positive people should be killed, possibly burned or simply killed by nurses in hospitals and clinics. It was also suggested that those infected should be marked with a sign on their body, such as a tattoo, in order for sexual partners to identify those who are sero-positive (Kaleeba 2001: 1). While these attitudes may not represent the feelings of a majority of Batswana, the example provides a good indication of the social environment many infected people face when they publicly announce their sero-positive status. It is against this background that a human rights approach to the epidemic becomes so important. Botswana is a signatory to many of the international conventions safeguarding human rights and has accepted the Universal Declaration of Human Rights of 1948.2 However, it is common that human rights are neglected in times of epidemics when people fear those infected in an attempt to protect themselves. It is in these times that the public and health authorities cry out for mandatory screening3 and the isolation of infected people. The history of HIV/AIDS is no exception to this and a reoccurring theme within the context of HIV/AIDS is whose right should be protected, that of the group or that of the individual (Stegling 2000: 10). However, it has widely been argued that 'it has become increasingly clear that health and human rights cannot be separated from each other, if either is to be secured' (Piot & Timberlake 1998:1). It is with this understanding in mind that many international organisations such as the World Health Organisation (WHO) and United Nations agencies have argued that protecting human rights of people who are infected with the virus is essential for two reasons. Firstly, because every human being has the right to dignity and secondly, because the appreciation of these rights for individuals is not counter-productive to public health interests. It is argued that by recognising human rights fewer people get infected and it becomes easier for those infected and their families to cope with the 4 disease. In the context of home-based care several rights issues emerge which have neither been debated adequately nor have they been addressed in the current programme. As I have argued elsewhere, the fundamental right to privacy and confidentiality is no longer protected in the context of home care for AIDS patients since the government has opted for a notion of 'shared confidentiality' (Stegling 2000:11). The reasons that informed the decision by government to enable 'health professionals's to share the HIV status with family members who are involved in the care of an AIDS patient are linked to a fear that caregivers may be at risk of infection due to their care activities. 242 While this fear is understandable in a situation in which contracts of care are not between an individual and a professional but between the individual, professional health workers and the family of the patient, the example of discriminating attitudes given above indicates 6 that confidentiality should be paramount given the current social climate in Botswana. Arguments about the ability of 'shared confidentiality' empowering the community and the family and allowing for better quality care to be provided to AIDS patients should be taken into consideration but need to be seen within the context of discrimination and marginalisation.7 In an attempt to discuss issues of rights and ethics within the context of the epidemic, some scholars have suggested reference be made to the African Charter on Human and Peoples' Rights since it has been signed by many African countries and it provides an agreed set of ethical principles that could be referred to when designing and implementing HIY/AIDS policies. The Charter, for example, establishes the right to dignity, to life and health and the right to liberty and security (Turner 1995: 86). Taking these rights into account it becomes questionable whether the notion of 'shared confidentiality' would be in accordance with the Charter's declaration to the right to dignity. Since Botswana is a signatory to the Charter one needs to assess why government has not opted for a different approach when it comes to safeguarding the rights and health status of all citizens, such as the promotion of universal precautions. By promoting universal precautions everybody at all times would take steps to protect themselves against the possibility of infection, regardless of whether the HIV status of the patient is known. In order to understand the ethical and rights issues that emerge in the current situation in Botswana, the following paragraphs assess the formalised home-based care programme as it is currently implemented by government and the problems and challenges that emerge from it. The adoption of home-based care in Botswana Why home-based care? Community home-based care is characterised by a number. of aspects that make it a suitable solution to responding to the epidemic in a developmg country. Since resources are increasingly limited in the public health sector due to the growing number of people falling ill with AIDS related diseases, the s~ate has to look for alternative ways to care for these clients. In Botswana, it is currently estunated that be~een a: 50% and 70% of hospital beds in the main referral hospitals in the country e occuple~ by AIDS patients, a fact that has forced health authorities to relocate such patients ba~k mto the community in order to be able to also provide care for patients .with cur~ble d~seases (GoB & UNDP 1998: 41). This argument is obviously based on the Idea ~~t m Africa the extended family is traditionally the care giving unit on which in times of cnslS the state can fall back on. Community home-based care lies at the heart of Botswana's national. response to the epidemic. At the end of June 2000 the cumulative figure for clients registered on home- based care stood at 7000 with 875 deaths having been registered on home-based .c~e. While not all of these cli~nts are suffering from AIDS related diseas~s, th~ grea~ maJonty does. Additionally, there is a growing number of children that are liv~g With an I~~:n~ currently the total number of children living with a sick parent or Sick parents, y 6,823 (AIDS/STD Unit 2000: 12). However, it is obvious for all involved that m1an case~ ~e not reported for fear of stigmatisation and in many instances because peop e are n~1 mformed about services that are offered b; government departments ~d no~-governmen orga' .. hr . or tennmal diseases. OlsatlOns to assist them in times of hardship due to c OOIC • h b d care In dd" . f e community ome- ase h a Itlon to being a cheaper and practical option 0 car , h' h' the past have cas a great potential to unite aspects of care with preve~tion, .w ICthemfamily and the Ommonly been treated as two exclusive concepts. By mcludmg 243 community in the care of AIDS patients it becomes possible to discuss prevention within the community. Once AIDS patients are considered a reality within the local community it is easier for people within this community to accept their responsibility to prevent further transmission of the virus (AIDS Action 1995: 2). Through care in the community, it is thought that the discrimination and isolation of HIV positive people and their families is being prevented.8 A continuum of care is established, which connects the hospital with the community on the basis of care for people who are infected. In the case of a person infected with HIV, this continuum should start at the time the person is diagnosed with carrying the virus, followed by post-test counselling and advise on positive living, including emotional support and be carried through to the point when the client actually falls ill with AIDS. However, a holistic understanding of care for an AIDS patient should also include the care and support of the family of that patient and should, therefore, not end with the death of the patient but be continued through bereavement counselling of family members. Furthermore, AIDS patients often need care for a very long time and by being cared for at home, carers may be able to pursue income generating strategies in their home environment which would be impossible if they had to stay with the patient in hospital or continuously visit the patient there. In some cases it also enables the patient to continue to earn a living or look after dependants at least for a limited time. This said, care in the home is not supposed to delegate responsibility from the health authority to the family and the community. For community home-based care to operate effectively it needs to be planned as a strategy in which all players acknowledge their responsibility. Traditionally, the family may be the caring unit for ill people in Africa but this does not mean that there are unlimited resources within the family to deal with an increasing number of ill people. 'This source of care must not be taken for granted. As the number of ill people increases, communities may become overwhelmed and lacking support, abandon their traditional caring roles' (McDonnell et aI., 1994: 429). However, in Botswana, government perceives the family as a cornerstone to support the process of self care at home. The multi-pronged approach adopted in our Community Home-based Care strategy aims at reducing the impact of the illness on the client, as well as reducing the burden of care on the family and the home. (AIDS/STD Unit 2000: 2). This approach should be understood within the context of a government organised and formalised home-based care programme that has been in place for some time. According to the policy that is outlining the programme for Botswana, support given through government agencies should include counselling of the patients and the family at home, material support to assist the carer, continuous visits by health staff and a monitored system which co- ordinates the work between the hospital, the clinic, welfare officers, community organisations and the family. It also acknowledges that the carer will need to be trained so that the patient receives quality care and so that the carers know how to protect themselves.9 In order to understand the realities of the programme in Botswana, one needs to make an attempt to assess whether the support structures the home-based care policy envisages for the ~uccessful implementation of the programme are actually in place, that is, whether the famIly ~d the community have the resources and abilities to provide quality care for people With AIDS. Also, one needs to examine the actual implementation of the programme through gov~rnment agencies and whether the assistance they offer is adequate for the needs o~'patients and their families. The following paragraphs will give a brief insight into the realities of home-based care in Botswana which will then be analysed within the earlier discussed rights framework. 244 The realities of home-based care in Botswana In reality, home-based care in Botswana is faced with a number of serious challenges that prevent care providers from offering the best possible care to those who have fallen ill with AIDS, However, one needs to be aware that there is a serious lack of research that has been undertaken in this area, nevertheless, the few studies that are available seem to point out common trends and several sets of problems and weaknesses appear in all the studies currently available, The following discussion is mainly based on two studies that were undertaken10 independently from each other in Kweneng District during March and April 2000. Findings of both studies identified poverty as the main barrier to the provision of quality care to AIDS patients. In one study, of the 29 patients interviewed, 24 had previously been employed and had contributed significantly to the household income before falling ill but at the time of the study only two patients had a paid job (Khan & Stegling 2000: 12). Clients in the same sample were asked about their main worries and a great majority voiced as their main concern the uncertain future of their parents and young children, Also, many patients felt uncomfortable about being cared for at home, in this way becoming a burden to their families, Furthermore, a majority of clients expressed their concern about the detrimental effect the disease has on the economic sustainability of the household. ,Also, since almost all the patients interviewed in this sample denied the nature of the dIsease they were suffering from, they did not utilise certain welfare services, such as the food basketl!, because of the stigma attached to these, The argument brought forward by health and social service providers, being that once you receive the food basket, everybody m the community knows that you are an AIDS patient. Of the 29 patients in the sa~ple, only five were assisted through the food basket programme, Additionally, many p~tle~ts were unaware about the programmes that are available to them, e.g, only a small mmo,nty was registered as destitute and the researchers found that in many cases only the caregiver was registered destitute, often resulting in the entire family sharing ~ single destitute allowancel2 In general, carers interviewed in this sample were strugglmg t,o mak~ ends meet, with none of them being formally employed and the majority either ~emg regIstered des,tI~,te, doing small-scale farming or earning a small income through mformal sector activities, such as running a she been or a tuck shop, In terms of poverty, the other study does not indicate any difference in ~e, research ~ndings, Of the 30 patients interviewed in that study, none was holding a paid Job at the hme of the research and 85% of the carers were also unemployed (Mojap~lo et al. 200 I: 28), Another indication of the inadequacy of the home environment IS. the lack ,of appropriate shelter which is evident in this sample. Two of the patients lived m old derelict houses while one lived in a plastic shack these are obviously not places where the wellness of the patient is supported Additionally' of the 30 patients interviewed in this study, fihourd did :' , d fi b h'ldren while three a , not even have a caregIver and two chents were care or y c I , rncapable 'I caregivers due to old age or disability. ' . t t home It" ISce rtam'ly Wh I e poverty not th I ' seems to be the main obstacle to carmg for a patlen a . d h . , s on home-based care, Th e e on y difficulty experienced by patIents an t err carer d d f: 'I assumption made by government and many scholars in the field that the exten ~ aml'tyl y ro 'd . d t m to hold up m rea I ' th e who are 100k'mg aft er P , VI es WIth support for those being cared for at home oes no see Ftrst f . o all, a clear gender balance exists when It comes to os be' fi I and pati " . th first study mg ema e ents wlthm the home environment with all the carers me. 'ty f 89% of the carers in the second study being women. Additionally, the great ~aJono t vol also female. ThIs seems 0 unte~rs participating in home-based care prograrnme~ are rtin the care of clearly mdicate that it is not the family and the commumty as such suppo g 245 AIDS patients but the female relative and community members who take on the responsibility of care. Many of the participants in both studies also indicated that they receive very little assistance from the extended family and health service providers. In the first study most of the carers were single women (in some cases divorced or widowed) who were the sole caregivers to the patient and many complained that they were not receiving any assistance from the extended family. Only in some rare cases did male relatives occasionally assist by clearing the ground fetching medicines and home-based care materials from clinics or by organising transport to take the patient to the clinic or the hospital (Khan & Stegling 2000: 13). Similar problems were reported in the second study, with carers complaining that other members of the family were not assisting in any material way. Additionally, carers in the second study expressed their dissatisfaction with the services provided through volunteers and health professionals. As one carer pointed out: Healthworkersgive us medicationonly. No other support is provided. Even if the patient is in a bad conditionthe hospitalstaffrefuseto admitthe patient.(Mojapeloet aI., 200I: 38) The last part of the statement also points to another assumption that is commonly made in Botswana, referring to the attitude Batswana have in relation to hospitals. Many scholars and professionals believe that Batswana would rather have their patients being looked after at home than in the hospital. However, research indicates that this is not necessarily the case. One tends to forget the complex nature of AIDS related diseases, resulting in families to prefer for their patients to be taken care of within an institutional setting. Lack of information and knowledge concerning appropriate care and the sheer physical and psychological difficulties encountered by many caregivers often result in a feeling of hopelessness and inadequacy in terms of the care provided. As another carer pointed out: ' It's not good to take care of patientsat hornebecauseI do not knowhow to take care of the patient. I wasnot told anythingbesidesthat I should use gloves' (Mojapeloet aI., 200I: 3I) All the above discussed weaknesses of the home-based care programme are not just featuring in recent studies but were already reported in the baseline study undertaken by government in 1996. In the 1996 study, carers reported difficulties with patient care due to a lack of training and because of limited economic resources within the household. Almost half the households then felt that they needed [mancial support and a large number reported the need for material support (Ministry of Health 1996b: 18). It seems that even though government has paid a lot of attention to home-based care and a large amount of [mancial resources has been allocated to the programme, the programme is still faced with a number of problems which are not necessarily inherent in the programme itself but in the surrounding social realities that form the background to care of AIDS patients at home. Concluding remarks Discussing the realities of home-based care in Botswana within an ethics and rights context leaves one with a strong notion that the current programme is not necessarily an ethical solution to the care crisis in Botswana. With HIV infected people and their families still experiencing discrimination on many different levels within society, one cannot force those infected to be open about their status. Currently, the great majority of AIDS patients are clinically suspected to be HIV positive rather than confirmed through a test and with the ~earthat the n~ture of their status may be communicated to others even less people may test m future. thiS argument indicates that the violation of the human right to dignity is detrimental to public health efforts rather than supporting them. 246 The article discusses many of the problems patients and their families on the programme are facing, the. main ones being poverty and the lack of support by the extended family and health professIOnals. It seems, that government perceives home-based care as a convenient way to decongest hospitals rather than to unite aspects of prevention with care and as a way to provide the best possible care to those infected with HIY. With a considerable number of households in Botswana still living below the poverty datum and with the main burden of care being placed mainly with women who are often elderly, it becomes questionable whether home-based care is an equitable manner of providing for Botswana's AIDS patients. This article suggests that care provided at home does not only mean an often unbearable economic, physical and emotional burden for those who provide care but it also denies patients their right to choose the care setting they prefer. Rather than accepting home-based care as the only way to provide care for those infected with HIY, the author of this article suggests to adopt a rights approach and look for alternative solutions to the care crisis, taking into consideration the rights of patients and carers. Notes Address: Co-ordinator Botswana Network on Ethics, Law and HIV/AIDS (BONELA) Private Bag 00416, Gaborone, Tel. 306998, Fax. 307778 th 1. First Regional Conference on Community Home-based Care in Botswana, March 5th to 8 2001. 2. However, not withstanding its signature not all of the principles contained in these treaties have been incorporated into domestic legislation or even made policy. 3. In Botswana, government agencies and the private sector are increasingly debating mandatory testing of students who apply for overseas scholarships, while one of the main providers of such scholarships, Debswana, is already undertaking pre-scholarship testing. 4. 'Resolution WHA 45.35 of 14 May 1992 recognised that there is no public health rationale for measures which arbitrarily limit individual rights, such as mandatory screening' (UN 1998:58). 5. One needs to bear in mind that the amendment of the act so far only allows doctors and dentists to disclose the HIV status of a person and, therefore, other health professionals such as nurses and midwives still have to adhere to strict rules of confidentiality. For reference please see The Botswana Medical Council (Professional Conduct) (Amendment) Regulations, 1999, Statutory Instrument Number 77 of 1999 as cited in Zuyderdiun and Melville 2000. 6. See for example the Botswana HIV / AIDS and Human Rights Charter that was published by Ditshwanelo, the Botswana Centre for Human Rights, in 1995 in collaboration with the Botswana Red Cross Society. 7. Lucas, for example, argues that 'confidentiality if rigidly pursued can stifle care initiatives which sources external resources and networks such as community based approaches' (Lucas 1998:3). 8. A view shared by the government of Botswana: 'Caring for patients with AIDS is probably the best way for families and communities to perceive AIDS as a reality in the community and for their own lives. A caring family will also be the best guarantee for prevention of ostracism of people with HIV/AIDS' (Ministry of Health, 1996a): 4). 9. Ministry of Mealth, AIDS/STD Unit, Botswana, 'Operational Guidelines-Community home-based care for people with AIDS in Botswana / NACP 30', (Gaborone, 1996). 10. Both studies are not yet published: B. Khan & C. Stegling 'Evaluation of the Kweneng ~is~rict AIDS Home-based Care Programme', Report for SNV -The Netherlands Development OrganisatIOn, May 2000, Gaborone; D. Mojapelo et aI., 'Client Satisfaction and Providers' Perspective with Home- based Care in Kweneg District, Botswana', Draft, February 2001. .' .' 11. Through the Ministry of Local Government, a food basket programme IS a:'aIlabl.e to chents With chronic and terminal diseases. The programme consists of food and matenal asSistance, such as clothing and toiletry .. 12. 'Since many of the carers were over 65 years old, they were receiving the government pensIOn of Pula 110 and did not realise that they would still be entitled for the destitute allowance' (Khan & Stegling 2000: 14). 247 References AIDS Action, Issue 28, March-May, 1995. AIDS/STD Unit, Ministry of Health, 'Community Home-based Care Newsletter', Vol. 1, No.1, September 2000, Gaborone. Ditshwanelo, the Botswana Centre for Human Rights, 'Botswana HIVIAIDS and Human Rights Charter " Gaborone, 1995. Government of Botswana & United Nations Development Programme, 'Botswana Human Development Report 1997: Challenges for Sustainable Human Development: A Longer Term Perspective " Gaborone, 1998. Kaleeba, N., 'Keynote Address " Stigma and AIDS in Africa, , 27 March 2001. Khan, B. & Stegling, c., 'Evaluation of the Kweneng District AIDS Home-based Care Programme " Report for SNV -Netherlands Development Organisation, May 2000, Gaborone. Lucas, T., 'Balancing Confidentiality and Care Delivery in the Context of HIVIAIDS', unpublished paper presented at the World AIDS Conference in Geneva, 29th June 1998. McDonnell, S., Brennan, M., Burnhamn, G., &Tarantola, D., 'Assessing and Planning Home-based Care for Persons with AIDS', Health Policy and Planning, Vol. 9, No.4, 1994. Ministry of Health, AIDS / STD Unit, Botswana, 'Operational Guidelines: Community Home-based Care Programmefor Terminally ill HIVIAIDS Patients in Botswan NACP 31 " Gaborone, 1996 a). Ministry of Health, AIDS / STD Unit, Botswana, 'Baseline Study for the Community Home-based Care Programmefor Terminally III HIVIAIDS Patients in BotswanaNACP 31 " Gaborone, 1996 b). Mojapelo, D., Ditirafalo, T., Tau, M., &Doehlie, E., 'Client Satisfaction and Providers' Perspective with Home-based Care in Kweneng District Botswana " Unpublished Report, April 2001,. Gaborone. Piot, P., & Timberlake, S., 'HIV I AIDS and Human Rights: Continued Commitment in the Second Decade " Health and Human Rights, Vol. 3, No. I, 1998. Stegling, c., 'Current Challenges of HIV I AIDS in Botswana " Working Paper No. I, Department of Sociology, University of Botswana, May 2000. Turner, K., 'Ethical Principles and Practice in Response to the HIV Epidemic " African Network on Ethics, Law and HlV, Proceedings of the Intercountry Consultation, Dakar, Senegal 27 June-I July, 1994. United Nations, HIVIAIDS and Human Rights-International Guidelines, New York and Geneva, 1998. Zuyderduin, A. & Melville, 1., Untitled, Unpublished Paper, July 2000. 248