Browsing by Department "Centre for Bioethics"
Now showing 1 - 11 of 11
Results Per Page
Sort Options
- ItemOpen AccessAchieving gold standards in ethics and human rights in medical practice(2005) Benatar, Solomon RChen Reis and colleagues’ study in this month’s PLoS Medicine showed that most Nigerian physicians commendably appeared to be providing appropriate care for HIV/AIDS patients [1]. However, 9% refused to care for such patients, 9% admitted they had refused a patient with HIV/AIDS admission to hospital, and 20% felt that many of these patients had behaved immorally and deserved the disease. The authors also noted the adverse impact of limited health care resources upon ethical practice and protection of human rights (this impact is not surprising in a very poor country with a per-capita GDP of US$290 [2], less than 1% of the United States per-capita GDP). They conclude that discriminatory behaviour and breaches of ethical codes could be addressed effectively through education, enforcement of anti-discrimination policies, increasing resources for health care, and attempts to change attitudes and cultural beliefs. Presumably, their motivations for this study were (1) to better understand how well physicians in Nigeria respect human rights and meet universal ethical standards of medical practice in caring for patients with HIV/AIDS, and (2) to make recommendations that could improve professional practice. Their fi ndings would be more convincing if they could compare their data with similar studies done elsewhere in the world, including the US (home to some of the authors of the study). In particular, it would be valuable to have comparative international data on ethics and human rights standards achieved in medical practice, and on health professionals’ attitudes to patients with HIV/AIDS and other stigmatised conditions. However, Reis and colleagues’ study raises several important questions.
- ItemOpen AccessEnd of life decision making in a children's hospital : ethical and practice implications(2001) Henley, Lesley D; Fleischer, TheodoreAims: To evaluate end of life practices among hospitalised children who died of HIV/AIDS. Design: Retrospective chart review. Setting: A public, secondary and tertiary children's teaching hospital in a developing country. Patients: A consecutive series of in-patient deaths among HIV-infected children. Main Outcome Measures: Identification of patients as dying, presence of do not resuscitate (DNR) orders, documentation of comfort care plans, whether end of life decisions were discussed with parents or caretakers, nature of diagnostic and therapeutic interventions in the last 24 hours of life, and presence of pain and distress in the last 48 hours of life. Results: 165 out of 167 in-patient deaths were reviewed. 79% of patients died in the general wards. The median age of patients was 4 months. The median length of hospitalisation was 6 days. 30% of patients fell in Category B. Patients with shorter lengths of stay were more likely to fall in Category B (median 4 days versus 7 days, P=0.0000). About 1 quarter of patients had a median length of stay of 25 days. 84% of patients had a DNR order, with a median of 4 days between admission and documentation of the order. DNR orders appeared simultaneously in only 41 % of medical and nursing entries. 39% and 63% respectively of doctors did not document their justification for the DNR order or whether it had been discussed with parents. 50% of patients were identified as dying. Terminology such as 'TLC' and 'keep comfortable' designated 44% of patients to receive comfort care only. The median time between admission and identifying a patient as dying and documenting a comfort plan was 5 days and 7 days respectively. In 44% of folders there was no indication of whether the comfort plan had been discussed with parents. 73% and 62% respectively of patients with comfort plans received IV fluids and IV antibiotics in their last 24 hours of life. 55% of patients who died in general wards experienced pain and distress in the last 48 hours of life. Respiratory symptomatology and oral and oesophageal candidiasis accounted for most discomfort. 2 in 5 patients with a comfort plan failed to receive analgesia, despite pain and distress. Conclusions: Despite extreme diagnostic and prognostic uncertainty, doctors made key end of life decisions. Doctors' practices often failed to meet procedural and ethical requirements in professional guidelines. Failure to discuss DNR orders or comfort plans with parents ignores their role as principal decision makers for their children. The low rate of comfort plans, compared to DNR orders, suggests doctors had difficulty making the transition from curative to palliative care. Many comfort plans were incoherent and included interventions neither meant for, nor likely to promote patients' comfort. Whilst fear of hastening death may explain doctors' reluctance to prescribe adequate analgesia, undertreating pain and distress in a dying child is of more concern morally and medically than the risk of suppressing respiratory effort. To achieve better end of life care for HIV-infected children, it will be necessary to improve practice patterns. A structured medical treatment plan that focuses on goals of care is proposed to manage transitions from life-sustaining treatment to palliation.
- ItemOpen AccessEnrolling adolescents in HIV vaccine trials: reflections on legal complexities from South Africa(BioMed Central Ltd, 2007) Slack, Catherine; Strode, Ann; Fleischer, Theodore; Gray, Glenda; Ranchod, ChitraBACKGROUND:South Africa is likely to be the first country in the world to host an adolescent HIV vaccine trial. Adolescents may be enrolled in late 2007. In the development and review of adolescent HIV vaccine trial protocols there are many complexities to consider, and much work to be done if these important trials are to become a reality.DISCUSSION:This article sets out essential requirements for the lawful conduct of adolescent research in South Africa including compliance with consent requirements, child protection laws, and processes for the ethical and regulatory approval of research.SUMMARY:This article outlines likely complexities for researchers and research ethics committees, including determining that trial interventions meet current risk standards for child research. Explicit recommendations are made for role-players in other jurisdictions who may also be planning such trials. This article concludes with concrete steps for implementing these important trials in South Africa and other jurisdictions, including planning for consent processes; delineating privacy rights; compiling information necessary for ethics committees to assess risks to child participants; training trial site staff to recognize when disclosures trig mandatory reporting response; networking among relevant ethics commitees; and lobbying the National Regulatory Authority for guidance.
- ItemOpen AccessEthical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study(2016) Masiye, Francis; De Vries, Jantina; Mayosi, BonganiINTRODUCTION: Advances in genetic and genomic research have introduced new challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for a genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand the ethical challenges in obtaining informed consent in the RHDGen study. METHODS: We used a qualitative study methodology involving in-depth interviews and participant observations. Our research participants were RHDGen cases and controls as well as research staff involved in the recruitment of RHDGen research participants. In total, we conducted 32 in-depth interviews with RHDGen research participants, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen research participants. The in-depth interviews were conducted in English, audio-recorded and transcribed verbatim. All the data were analysed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa, and these sites were the Groote Schuur Hospital in Observatory, the Vanguard Community Health Centre in Bonteheuwel and the Heideveld Community in the Cape Flats.
- ItemOpen AccessInformed consent for voluntary counselling and testing for HIV infection in South African mothers and children: An assessment of burdens and consequences and an argument for a modification in the process of informed consent(2001) Roux, Paul; Fleischer, TheodoreThe HIV / AIDS epidemic is devastating Africa. The continent lacks the material resources to treat infected persons or to support those affected by the epidemic. One great resource in Africa is the cohesive strength of families. Because of a fear of stigma, HIV infected persons tend not to disclose their diagnosis to their families. This non-disclosure perpetuates stigma, because ordinary people do not discover that their own family may be affected by the epidemic. Non-disclosure also results in the loss of specific family support to infected individuals and the loss of general family support as a national resource. The standard method of taking informed consent prior to HIV testing of pregnant mothers has the effect of enhancing non-disclosure, because of its inherent focus on the patient as an isolated, autonomous decision maker. This dissertation advances the thesis that an alteration in the process of informed consent, to involve the family in deliberation prior to consent, will facilitate disclosure of an HIV-positive diagnosis to the family. Disclosure will have the positive effects firstly of giving the mother access to the emotional support of her family and secondly of serving to educate the family, and through the family society as a whole, that ordinary, virtuous women can be infected with HIV.
- ItemOpen AccessMoral imagination: The missing component in global health(2005) Benatar, Solomon RThe deplorable state of global health and the failure to improve this state have been debated extensively. Recent editorials in the Lancet in relation to the failure of Roll Back Malaria and the potential failure of the 3 by 5 programme [1, 2] illustrate how disappointment, surprise, and admonitions about such failures are usually followed by optimism about the success envisaged from future efforts [1, 3]. There are several possible reasons for our failure to ...
- ItemOpen AccessNew treatments: Costs, benefits and decision-making procedures(Health and Medical Publishing Group, 2003) Benatar, S R; Fleischer, T EOne hallmark of modern medicine is the ever-rising cost of providing life-saving or life-extending treatments. Advances in medical care and the ability to improve the duration and quality of life, combined with the expectations of both doctors and patients that all new modalities of treatment developed will be implemented in everyday practice, are the major reasons for modern medicine’s becoming so expensive. In these circumstances resource allocation decisions need to be made and appropriate priority-setting processes developed. This challenge faces all societies but most agonisingly middle income countries like South Africa where the expectations of physicians and patients are geared to the best that can be achieved in any country — even the wealthiest. Expensive, new or established standard treatments that may benefit patients may be considered in at least two categories. The first is when each individual patient will be a direct beneficiary. This applies, for example, when a pacemaker or orthopaedic prosthesis is installed, when an organ such as a kidney, heart or liver is transplanted, or when chronic renal dialysis is initiated. While such treatments have some mortality and a measure of sub-optimal results, good outcomes are the rule
- ItemOpen AccessPrivacy, secrecy and confidentiality : changing paradigms in the face of the HIV pandemic(2004) Andrews, Steven; Benatar, Solomon RobertThis paper stems from discussion of real life problems experienced at a local state hospital, and that have been presented to the University of Cape Town Bioethics Centre. These problems will be outlined from their social, medical and ethical perspectives. The dilemmas relating to confidentiality and disclosure of HIV status will be illustrated by empirical research data conducted in an HIV treatment unit, and with reference to the broad literature on this subject. It will be argued that confidentiality issues are poorly understood by healthcare professionals and their patients. In addition, and related to this lack of understanding, is a failure to construct and implement policies to protect specific confidentiality needs in the healthcare environment The practical problem of patient disclosure of HIV status will be explored using data generated from the author’s own practice. A review of the debate regarding confidentiality in the healthcare context will be provided, with reference to the literature on the subject. Guidelines for drafting a facility specific confidentiality policy will be provided, along with a draft policy for use as a template in this situation.
- ItemOpen AccessReporting of ethical requirements in published physiotherapy research(2004) Frank, Denise M; Henley, Lesley
- ItemOpen AccessThe state of our prisons and what this reveals about our society(2014) Benatar, SolomonIn the third decade of a new South Africa (SA), major challenges are being faced in almost every aspect of life, ranging from meeting minimum daily subsistence requirements, through providing education and primary healthcare, to the functioning of our legal system and governance at local and national levels. While in this context levels of crime and corruption are reaching new heights, we should not lose sight of the need for humane and accountable approaches to crime and imprisonment. The 37th anniversary on 12 September of Steve Biko’s death under inhumane conditions and without adequate medical care in prison provides an opportunity to remember past failings and to reconsider the lessons these hold for our society.
- ItemOpen AccessUse of the 'Accountability for Reasonableness' Approach to Improve Fairness in Accessing Dialysis in a Middle-Income Country(Public Library of Science, 2016) Moosa, Mohammed Rafique; Maree, Jonathan David; Chirehwa, Maxwell T; Benatar, Solomon RUniversal access to renal replacement therapy is beyond the economic capability of most low and middle-income countries due to large patient numbers and the high recurrent cost of treating end stage kidney disease. In countries where limited access is available, no systems exist that allow for optimal use of the scarce dialysis facilities. We previously reported that using national guidelines to select patients for renal replacement therapy resulted in biased allocation. We reengineered selection guidelines using the 'Accountability for Reasonableness' (procedural fairness) framework in collaboration with relevant stakeholders, applying these in a novel way to categorize and prioritize patients in a unique hierarchical fashion. The guidelines were primarily premised on patients being transplantable. We examined whether the revised guidelines enhanced fairness of dialysis resource allocation. This is a descriptive study of 1101 end stage kidney failure patients presenting to a tertiary renal unit in a middle-income country, evaluated for dialysis treatment over a seven-year period. The Assessment Committee used the accountability for reasonableness-based guidelines to allocate patients to one of three assessment groups. Category 1 patients were guaranteed renal replacement therapy, Category 3 patients were palliated, and Category 2 were offered treatment if resources allowed. Only 25.2% of all end stage kidney disease patients assessed were accepted for renal replacement treatment. The majority of patients (48%) were allocated to Category 2. Of 134 Category 1 patients, 98% were accepted for treatment while 438 (99.5%) Category 3 patients were excluded. Compared with those palliated, patients accepted for dialysis treatment were almost 10 years younger, employed, married with children and not diabetic. Compared with our previous selection process our current method of priority setting based on procedural fairness arguably resulted in more equitable allocation of treatment but, more importantly, it is a model that is morally, legally and ethically more defensible.