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Disclosure of cancer diagnosis and prognosis in Northern Tanzania.

Whether to tell patients with cancer about their diagnoses and prognoses is a matter of great debate. While many argue the importance of giving this information to facilitate informed decision-making, others argue that this same information can extinguish hope. Although there is some evidence that disclosure of this information is now commonplace in many Northern and Western settings, there are very few data about this issue from resource-poor nations describing physicians' decision-making regarding whether to disclose this information. Using a combination of ethnographic and other qualitative methods including participant observation, semi-structured interviews, informal interviews, and a review of key documents in Northern Tanzania, we map some of the salient issues in this setting. Like their colleagues in many other parts of the world, Tanzanian physicians often withhold diagnostic and prognostic information from patients. In addition, however, to the cultural arguments often used to justify this practice, issues of treatment availability and patient poverty also influenced the physicians' disclosure practices. Expatriate and Tanzanian physicians practicing in Northern Tanzania often had different approaches to informing patients of their diagnoses and prognoses. Some Tanzanian physicians advocated the use of a "roundabout" approach to disclosure, arguing that it was more reflective of the normal mode of discourse in Tanzania than the more direct approach advocated by many of their expatriate colleagues. Expatriate physicians and some of their Tanzanian colleagues felt that such an indirect approach often left patients confused, or indeed, uninformed.

Cost of Illness↗

'All the services were excellent. It is when the human element comes in that things go wrong': dissatisfaction with hospital care in the last year of life.

Patient satisfaction surveys are seen as an important way of obtaining 'user views' of health service provision. However, there is a growing body of research and theoretical literature that questions the validity of the concept of 'patient satisfaction' and hence the use of this type of survey. A postbereavement survey of people who registered a random sample of cancer deaths in an inner London health authority was undertaken in 1996/7. The survey questionnaire (VOICES) included 14 open-ended questions which asked respondents to add any comments they felt were relevant about the care of the deceased. This paper uses these data to examine the causes of dissatisfaction with hospital-based care. Of the 229 informants responding to the questionnaire, 138 included some written comment about care in hospital. At least one negative comment was made by 59% (82) of those making any comment. Of these, 55% (44) rated the care given by doctors as 'excellent' or 'good' and 63% (50) rated that given by nurses as 'excellent' or 'good'. Qualitative analysis of responses to open questions suggest that expressions of dissatisfaction arise from a sense of being 'devalued', 'dehumanized' or 'disempowered' and from situations in which the 'rules' governing the expected health professional-patient relationships were broken. As such, the causes of dissatisfaction for this particular group of patients are similar to the causes of dissatisfaction with health care in general reported elsewhere. The palliative care approach emphasizes patient- and family-centred care and aims to promote physical and psychosocial well-being. The study findings suggest that adoption of the palliative care approach could reduce the experience of dissatisfaction for many service users, not only those whose deaths are anticipated.

Dehumanization↗

An assessment of orthopaedic surgeons' knowledge of medical ethics.

We developed a survey instrument to evaluate knowledge of ethical issues among orthopaedic surgeons and to assess their ability to handle ethical dilemmas. The twenty-six-item survey evaluates seven areas of medical practice: confidentiality, informed consent, truth-telling, the physician-patient relationship, economic aspects of care, end-of-life decision-making, and the approach to an incompetent colleague. It was administered to 117 attending orthopaedic surgeons and residents in two orthopaedic surgery training programs. One hundred and two orthopaedic surgeons (87 per cent) completed the survey. Overall, they correctly answered a mean of nineteen (73 per cent) of the twenty-six questions. The respondents appropriately handled questions involving economic aspects, truth-telling, confidentiality, and an incompetent colleague. However, there was poorer understanding of proper ethical conduct with regard to informed consent (58 per cent of the responses were correct), the physician-patient relationship (72 per cent of the responses were correct), and end-of-life decision-making (78 per cent of the responses were correct). No significant differences were found, with the numbers available, in overall performance according to site, attending compared with resident status, age, gender, or whether the physician had had training in ethics. Economic, social, and professional forces have increased the medical ethical issues facing orthopaedic surgeons. Medical ethics now must be taught in training programs in orthopaedic surgery. Our survey of two orthopaedic surgery training programs demonstrated that orthopaedic surgeons approach most medical ethical problems appropriately. However, improvement is needed in selected areas.

Adult↗

Maternal brain death--an Irish perspective.

BACKGROUND: Brainstem death is a concept used in cases in which life-support equipment obscures the conventional cardiopulmonary criteria of death. Brainstem death during pregnancy is an occasional and tragic occurrence. AIMS: To considerthe ethical, legal and medical issues raised by maternal brainstem death. METHODS: Medline and Embase search. RESULTS: The death of the mother mandates consideration of whether continuing maternal organ supportive measures in an attempt to attain foetal viability is appropriate, or whether it constitutes futile care. There is no theoretical limit to the duration of time for which maternal somatic function may be sustained. However, successful prolongation of maternal somatic function in pregnancies of less than 16 weeks gestation has not been reported to date. There is no legal imperative to continue maternal somatic support where there is little likelihood of a successful foetal outcome. CONCLUSION: The difficult issues raised by maternal brainstem death mandates a consensus building approach to decision making in this context.

Adult↗

Empirical Bayes and adjusted estimates approach to estimating the relation of mortality to exposure of PM(10).

In the framework of the APHEIS program (Air Pollution and Health: A European Information System), a health impact assessment of air pollution in 26 European cities was performed for particles of an aerodynamic diameter less than or equal to 10 microns (PM(10)). For short-term effects, it was based on overall estimates from the APHEA-2 project (Air Pollution and Health: A European Approach). These city-specific risk assessments require city-specific concentration-response functions, raising the question of which concentration-response is most appropriate. Estimates from city-specific models are more specific, but have greater uncertainty than those provided from multicity analyses. We compared several estimates derived from the city-specific analyses in cities that were part of the APHEA-2 project, as well as in a city that was not included in APHEA-2 but was part of the APHEIS project. These estimates were: the estimates from a local regression model, the adjusted estimates based on two significant effect modifiers identified through meta-regression models, and the city-specific empirical Bayes (shrunken) estimates and their underlying distribution. The shrunken and adjusted estimates were used to improve the estimation of city-specific concentration-response function. From these different estimates, attributable numbers of deaths per year were calculated. The advantages and limits of the different approaches are discussed through real data and in a simulation study.

Air Pollutants↗

Informed consent: British otolaryngologists surveyed.

A repeat postal questionnaire of British otolaryngologists has been carried out to assess changes in their practice of obtaining informed consent. The previously reported high level of good practice is maintained. Currently informed consent is more often obtained in outpatients or the preadmission clinic than it was in 1991. Consultants and specialist registrars are more involved in this process. Although there is little evidence given to support a persistent increase in a defensive approach towards gaining informed consent, there is some change in the reporting of surgical complications that may reflect an increased awareness of the concept of 'material risk'.

Ethics, Medical↗

Assessment of dermal exposure--empirical models and indicative distributions.

The Health and Safety Executive embarked upon a program of work to address the issue of exposure to nonagricultural pesticides in the United Kingdom. Early on it became clear that the primary route of exposure was via the skin. Empirical dermal exposure models have been developed which allow estimates of potential dermal exposure to be derived from distributions of rate of contamination with in-use formulations during typical use conditions in the workplace. Estimates of actual dermal exposure (what gets onto the skin) may also be anticipated and used in quantitative risk assessment to inform product registration. The key interpreted data from the empirical models are presented. Data are presented for six models. Separate summary data are presented for exposure to the body, hands, and feet. In the case of hand exposure, data are presented, in some cases, for contamination arising from wearing used (previously worn, of unknown history) and clean protective gloves. This article proposes a mechanism for addressing exposure assessment where little or no direct dermal exposure data are available--the indicative distribution approach. The empirical distributions of rate of contamination have been studied to seek commonalities which may allow the construction of a universal tool for use in screening level risk assessment. A simple 12-box matrix is proposed.

Databases, Factual↗

Whose information is it anyway? Informing a 12-year-old patient of her terminal prognosis.

OBJECTIVE: To examine students' attitudes and potential behaviour towards informing a 12-year-old patient of her terminal prognosis in a situation in which her parents do not wish her to be told, as they pass through a modern medical curriculum. DESIGN: A cohort study of students entering Glasgow University's new medical curriculum in October 1996. METHODS: Students' responses obtained before year 1 and at the end of years 1, 3, and 5 to the "childhood leukaemia" vignette of the Ethics in Health Care Survey Instrument (EHCI) were examined quantitatively and qualitatively. Analysis of the students' multichoice answers enabled measurement of the movement towards professional consensus opinion. An analysis of their written justifications for their answers helped to determine whether their reasoning was consistent with professional consensus and enabled measurement of changes in knowledge content and recognition of the values inherent in the vignette. Themes on the students' reasoning behind their decision to tell the patient or not were also identified. RESULTS: Unlike other vignettes of the EHCI in which autonomy was a main theme, few students chose the consensus answer before year 1 and there was no significant movement towards consensus at any point during the course. In defence of their decision to withhold information, the students expressed strong paternalistic opinions. The patient's age was seen as a barrier to respecting her autonomy. CONCLUSIONS: It is important to identify students' perceptions on entry to medical school. Transformative learning theory may provide the basis for an approach to foster doctors who consider the rights of young people. Small-group teaching is most conducive to this approach. The importance of positive role modelling is also emphasised.

Age Factors↗

Empirical antibiotic treatment with piperacillin-tazobactam in patients with microbiologically-documented biliary tract infections.

AIM: To report our experience with empiric antimicrobial monotherapy (piperacillin/tazobactam, of which no data are available in such specific circumstances) in microbiologically-documented infections in patients with benign and malignant conditions of the biliary tract. METHODS: Twenty-three patients, 10 with benign and 13 with malignant conditions affecting the biliary tree and microbiologically-documented infections were recruited and the efficacy of empirical antibiotic therapy was assessed. RESULTS: The two groups featured similar demographic and clinical data. Overall, the infective episodes were most due to Gram negative agents, more than 60% of such episodes (mostly in malignant conditions) were preceded by invasive instrumental maneuvers. Empirical antibiotic therapy with a single agent (piperacillin/tazobactam) was effective in more than 80% of cases. No deaths were reported following infections. CONCLUSION: An empiric therapeutic approach with piperacillin/tazobactam is highly effective in biliary tract infections due to benign or malignant conditions.

Adult↗

A survey of nurses attitudes to AIDS related issues.

A small survey was undertaken to examine nurses attitudes to a wide range of matters relating to the management of patients and persons with AIDS, and the prevention of HIV infection. Strong support is shown for current AIDS related public health measures, particularly in the area of health education. Unnecessary measures like mandatory screening have scant support, and there is even less support for more extreme measures. Most nurses believe AIDS patients should be treated no differently than other disease sufferers. And while there is an awareness and concern about occupational transmission, most nurses approach or would approach caring for AIDS patients no differently than other patients. While, the study has some limitations, it nonetheless provides an interesting outline of nurses attitudes to a range of important issues.

Acquired Immunodeficiency Syndrome↗

Teicoplanin plus pefloxacine versus teicoplanin plus netilmicin in empiric therapy of febrile patients with cancer and neutropenia. A randomized study of two once daily regimens in patients with previously inserted catheters.

In a comparative randomized trial, teicoplanin 5 mg/kg plus either netilmicin 5 mg/kg or pefloxacine 10 mg/kg was administered in a once daily empiric therapy to 40 cancer patients with fever and neutropenia after cytotoxic chemotherapy. Both regimens were analyzed with respect to the localisation of the underlying disease, catheter presence and agents isolated from blood culture. The cure and improvement rate were 80% (teicoplanin plus netilmicin) and 85% (teicoplanin plus pefloxacin), with no statistically significant difference between the groups. Teicoplanin with either an aminoglycoside or a quinolone administered once daily seems to be a suitable approach in empiric therapy for fever in neutropenia and may prevent catheter insertion in cancer patients.

Adult↗

Autonomy and intellectual disability: the case of prevention of obesity in Prader-Willi syndrome.

BACKGROUND: The policy concerning care for people with intellectual disability (ID) has developed from segregation via normalization towards integration and autonomy. Today, people with ID are seen as citizens who need to be supported to achieve a normal role in society. The aim of care is to optimize quality of life and promote self-determination. The promotion of autonomy for people with ID is not easy and gives rise to ethical dilemmas. Caregivers are regularly confronted with situations in which there is a conflict between providing good care and respecting the client's autonomy. This becomes evident in the case of prevention of obesity in people with Prader-Willi syndrome (PWS). METHOD: As part of a study about the ethical aspects of the prevention of obesity, in-depth qualitative interviews were conducted with the parents and professional caregivers of people with PWS. RESULTS: In analysing interviews with parents and formal caregivers, the present authors found that the dichotomy between respecting autonomy and securing freedom of choice on the one hand, and paternalism on the other, is too crude to do justice to the process of care. The stories indicated that caregivers see other options and act in other ways than to intervene without taking into account the wishes of the individual with PWS. The present authors elaborated these options, taking models of the physician-patient relationship as a heuristic starting point. They extended the logic of these models by focusing on the character of the process of interaction between caregiver and care receiver, and on the emotional aspects of the interactions. CONCLUSION: This approach results in more attention to processes of interpretation, deliberation and joint learning.

Adolescent↗

Ethics and statistical methodology in clinical trials.

Statisticians in medicine can disagree on appropriate methodology applicable to the design and analysis of clinical trials. So called Bayesians and frequentists both claim ethical superiority. This paper, by defining and then linking together various dichotomies, argues there is a place for both statistical camps. The choice between them depends on the phase of clinical trial, disease prevalence and severity, but supremely on the ethics underlying the particular trial. There is always a tension present between physicians primarily obligated to their own patients (the weight of 'individual ethics') and ethical committees responsible for the scientific merit of the trial and its long-term implications ('collective ethics'). Individual ethics, it is proposed, favour the Bayesian approach; collective ethics, the frequentist. Though in some situations the choice appears clear-cut, there remain other where both methodologies can be appropriate.

Bayes Theorem↗

How disturbing is it to be approached for a genetic cascade screening programme for familial hypercholesterolaemia? Psychological impact and screenees' views.

OBJECTIVES: To assess the screenees' views on, and the psychological impact of, a family-based genetic screening programme for familial hypercholesterolaemia (FH) and to evaluate non-participation. METHODS: Self-administered questionnaires were filled out at the time of screening and after communication of the test result. Non-participants were interviewed by phone. RESULTS: Of the people approached for screening, 2% did not participated. These 2% were not interested, had already been clinically diagnosed, or were afraid of insurance consequences. 677 screenees participated, of whom 215 (32%) tested FH positive. Less than 5% of the screenees were critical of the approach and the information provided. 20% of the screenees expressed feelings of social pressure. Effects on mood were minimal to absent, as were general 'quality of life' effects. CONCLUSIONS: Screening for FH is highly acceptable to screenees, although social pressure is prevalent. Only a small percentage of people being approached did not participate.

Age Factors↗

Successful hematopoietic stem cell transplantation for Fanconi anemia from an unaffected HLA-genotype-identical sibling selected using preimplantation genetic diagnosis.

The only proven cure for Fanconi anemia (FA)-associated bone marrow failure is successful allogeneic hematopoietic stem cell transplantation (HSCT). However, HSCT with donors other than HLA-identical siblings is associated with high morbidity and poor survival. Therefore, we used preimplantation genetic diagnosis (PGD) to select an embryo produced by in vitro fertilization (IVF) that was unaffected by FA and was HLA-identical to the proband. The patient was a 6-year-old girl with FA and myelodysplasia previously treated with oxymetholone and prednisone. After her parents underwent 5 cycles of IVF with intrauterine transfer of 7 embryos over a span of 4 years, successful pregnancy ensued. Twenty-eight days after delivery, the patient underwent transplantation with her newborn sibling donor's HLA-identical umbilical cord blood hematopoietic stem cells (HSCs). Neutrophil recovery occurred on day 17 without subsequent acute or chronic graft-versus-host disease. Currently, 2.5 years after transplantation, the patient is well and hematopoiesis is normal. In summary, we have described the first successful transplantation, using IVF and PGD, of HSCs from a donor selected on the basis of specific, desirable disease and HLA characteristics. The medical, legal, and ethical issues involved with this approach are discussed.

Child↗

Variations and voids: the regulation of human cloning around the world.

BACKGROUND: No two countries have adopted identical regulatory measures on cloning. Understanding the complexity of these regulatory variations is essential. It highlights the challenges associated with the regulation of a controversial and rapidly evolving area of science and sheds light on a regulatory framework that can accommodate this reality. METHODS: Using the most reliable information available, we have performed a survey of the regulatory position of thirty countries around the world regarding the creation and use of cloned embryos (see Table 1). We have relied on original and translated legislation, as well as published sources and personal communications. We have examined the regulation of both reproductive cloning (RC) and non-reproductive cloning (NRC). RESULTS: While most of the countries studied have enacted national legislation, the absence of legislation in seven of these countries should not be equated with the absence of regulation. Senator Morin was not correct in stating that the majority of recent legislation bans both RC and NRC. Recent regulatory moves are united only with regard to the banning of RC. While NRC is not permitted in seventeen of the countries examined, it could be permitted in up to thirteen countries. CONCLUSIONS: There is little consensus on the various approaches to cloning laws and policies, and the regulatory position in many countries remains uncertain.

Asia↗