Should research ethics committees be told how to think?

Research ethics committees (RECs) are charged with providing an opinion on whether research proposals are ethical. These committees are overseen by a central office that acts for the Department of Health and hence the State. An advisory group has recently reported back to the Department of Health, recommending that it should deal with (excessive) inconsistency in the decisions made by different RECs. This article questions the desirability and feasibility of questing for consistent ethical decisions.

Parenteral nutrition: ethical and legal considerations.

Parenteral nutrition is an expensive therapeutic modality that is used to treat patients with intestinal failure. The benefit it offers in terms of life prolongation needs to be weighed against its risks and burdens. Through the use of descriptive clinical vignettes, this article illustrates the ethical and legal principles that underpin decisions to administer and, more importantly, to withhold or withdraw parenteral nutrition.

"Stepford doctors": an allegory.

The Stepford Wives, a novel by Ira Levin, provides the theme for this allegory. The men of Stepford belong to the Men's Association. Their wives are "perfect", in that they do nothing other than clean, cook, preen, and provide satisfaction without argument for their husbands. They are, furthermore, content with their lot, and believe that their previous interests and freedoms were self indulgent. Levin never informs his readers how the men came to obtain total mastery over their "Stepford wives", although there is the suggestion that the real wives have been replaced by robotic lookalikes.

Pacing extremely old patients: who decides--the doctor, the patient, or the relatives?

Decision making competence is not necessarily present or absent. In many cases it is partial or compromised. This applies especially to those over 80 years old, in whom the prevalence of dementia is high. Three patients who presented with indications for permanent pacemaker insertion are considered. One was apparently competent, one had partial competence, and one was clearly incompetent. In all three cases the closest relatives were opposed to decisions made by either the patient or the doctors. The three cases reflect the tension between doctors, patients, and relatives in situations where medical interests, individual interests, and familial interests conflict. The cases illustrate the type of problems encountered in clinical practice. The current legal position is reviewed.

Withholding life prolonging treatment, and self deception.

OBJECTIVES: To compare non-treatment decision making by general practitioners and geriatricians in response to vignettes. To see whether the doctors' decisions were informed by ethical or legal reasoning. DESIGN: Qualitative study in which consultant geriatricians and general practitioners (GPs) randomly selected from a list of local practitioners were interviewed. The doctors were asked whether patients described in five vignettes should be admitted to hospital for further care, and to give supporting reasons. They were asked with whom they would consult, who they believed ought to make such decisions, and whether the relatives' preferences would influence their decision making. MAIN MEASURES: To analyse the factors influencing the doctors' decisions not to admit otherwise terminally ill patients to hospital for life prolonging treatment. RESULTS: Seventeen GPs and 18 geriatricians completed the interview. All vignettes produced strong concordance in decision making between both groups. Ten per cent of the doctors would provide life prolonging treatment to patients with severe brain damage. Most would admit a surgical patient regardless of age or disability. Medical reasons were largely used to explain decision making. The wishes of relatives were influential and resource considerations were not. There was variability regarding decision making responsibility. CONCLUSIONS: Little attempt was made to link decision making with ethical or legal concepts and there may have been non-recognition, or denial, of the ethical consequences of failure to admit. The process of decision making may involve deception. This may be conscious, because of the illegality of euthanasia, or unconscious (self deception), because of deepseated medical and societal reluctance to accept that intentionally withholding life prolonging treatment may equate with intentionally causing death.

Of pipes, persons, and patients.

Michel Foucault's analysis of Magritte's painting, Ceci N'est Pas Une Pipe, and the later work, Les Deux Mystéres, serves as a template, that is broadened to consider different representations of persons and patients. Kant's noumenal person is contrasted with phenomenal persons, and the well individual is contrasted with the patient. Patients may be considered as the subject or object of illness, and both versions are "imprisoned" within a psychological and social context that curtails freedom, threatens continuity of existence, and may question the nature of their personhood.

The value of taking an 'ethics history'.

OBJECTIVES: To study the value of taking an ethics history as a means of assessing patients' preferences for decision making and for their relatives' involvement. DESIGN: Questionnaire administered by six junior doctors to 56 mentally competent patients, admitted into general and geriatric medical beds. SETTING: A large district general hospital in the United Kingdom. MAIN MEASURES: To establish whether patients were adequately informed about their illness and whether they minded the information being communicated to their relatives. To establish their preference regarding truthful disclosure and participation in decision making with risk attached. To establish whether they wished to be involved in CPR decision making, and if not, who should make the decision. To establish whether they knew of living wills and whether they had any advance directives. RESULTS: Twenty-four (43%) were inadequately informed of their illness. Forty-six (82%) said they would want to know were something serious to be found. Twenty-eight (50%) wanted to make their own decision if requiring risky treatment and 11 (20%) wanted family members involved. Thirty-one (55%) wanted to make a cardiopulmonary resuscitation (CPR) decision and five of these decisions differed from those made by the doctors. Twenty-five (45%) preferred the doctors to decide. Eleven (20%) of the patients had heard of living wills but only one had executed such a will. Seven (13%) of the patients wished to provide advance directives. Three (5%) did not find the history taking helpful but none were discomforted. CONCLUSION: Taking an ethics history is a simple means of obtaining useful information about patients' preferences.

Non-admitted elderly in the accident and emergency department.

The aim of the study was to identify the functional disabilities and support needs of elderly people who presented but were not admitted to a Dublin Accident & Emergency (A & E) department within a 1 month period. Semi-structured interviews were conducted with 19 per cent (100/532) of the non-admitted elderly within 2 weeks of the A & E visit. Injury related complaints were apparent in 51 per cent of the patients with 3 per cent requiring hospital admission within 2 weeks of the A & E visit. Increased dependency in 1 or more Activities of Daily Living (ADL) occurred in 10 per cent while 28 per cent had increased dependency in 1 or more Instrumental Activities of Daily Living (IADL). Increased family support following discharge was received by 45 per cent of the elderly. The most commonly needed statutory service which was not provided was the home-help service. This study provides baseline data on the non-admitted elderly in one Dublin A & E department and should assist planning of future service.

A survey of knowledge and use of folic acid among women of child-bearing age in Dublin.

BACKGROUND: The Medical Research Council vitamin trial highlighted the importance of folic acid in the prevention of neural tube defects. Since 1993, the Irish Department of Health has recommended periconceptional folic acid supplements. The objective of this study was to document the knowledge and behaviour of women in child-bearing years to periconceptional folic acid. METHODS: A cross-sectional community-based survey was conducted in Dublin using an interviewer administered questionnaire. RESULTS: A total of 335 women took part in the study, a response rate of 84 per cent. Approximately two-thirds (213/ 335, 63.6 per cent) had heard of folic acid. Knowledge was significantly associated with higher social class and higher education (p < 0.05). Few (18/335, 5.4 per cent), had been advised to take folic acid before pregnancy. Only 9/335 (2.7 per cent) of the women in the study were currently taking folic acid supplements. Three-quarters (75.9 per cent) of the group would be willing to take periconceptional folic acid supplements if they believed it would reduce the risk of malformations. The majority (77.4 per cent) would prefer to take folic acid in tablet form rather than have it added to food. CONCLUSIONS: This study shows that few women in child-bearing years in Dublin have been advised on folic acid, and very few are taking supplements. However, if advised appropriately the majority would be willing to take periconceptional folic acid in tablet form.

An analysis of CPR decision-making by elderly patients.

Traditionally clinicians have determined their patients' resuscitation status without consultation. This has been condemned as morally indefensible in cases where not for resuscitation (NFR) orders are based on quality of life considerations and when the patient's true wishes are not known. Such instances would encompass most resuscitation decisions in elderly patients. Having previously involved patients in CPR decision-making, we chose formally to explore the reasons behind the choices made. Although the patients were not upset, and readily decided at the time of initial consultation, on later analysing the decision-making we found poor understanding of the procedure, poor recall of information given and in some cases evidence of harm. This may be attributed to impaired decision-making capacity of elderly hospitalised patients as previously shown, or to the discomfort precipitated by having to contemplate the apparent immediacy of cardiac arrest by these patients. We propose that subscribing to autonomy as a general principle needs to be balanced against particular cases where distress may be caused by, or result in, diminished competence and limited autonomy.

Cryptosporidiosis in children who visited an open farm.

In the summer of 1995, cryptosporidiosis was diagnosed in a child in hospital. This child had taken part in a summer activity project involving 161 children and nine adults. Reports of a similar illness among a number of other participants prompted an outbreak investigation. A cohort study was conducted in two phases. Thirteen children (aged 6 to 15 years) out of 161 respondents to the first questionnaire met the case definition for illness and cryptosporidium was detected in stools from seven of the 13. Illness was significantly associated with child participants who had visited an open farm (p < .000005). Nine of the cases sought medical attention, and two were admitted to hospital. The second phase of the cohort study was conducted among 52 of the 55 people who had visited the open farm. Illness was significantly associated with playing in sand to which animals had access, at the edge of a stream beside a picnic area (p < .005). Contact with various animals was not associated with illness. This outbreak emphasises the risk for children of visiting open farms. Managers of open farms need to be aware of the potential for transmission of infectious diseases to visiting children. Strict implementation of hygiene measures is essential to minimise risk.

Epidemiology of acute leukaemia in the Cape Province of South Africa.

Of 535 consecutive cases of acute leukaemia diagnosed in the Cape Province between 1978 and 1985, demographic data are incomplete in 75 black patients and they have had to be excluded from the spatial analysis. Of the remaining 460 cases, 223 (48.5%) occurred in white patients and 237 (51.5%) in those of mixed ancestry, classified as coloureds according to the Population Registration Act No. 30 of 1950. The average incidence was 2.12, 1.37 and 0.58/100,000 for whites, coloureds and blacks respectively. There was no temporal trend in the incidence of acute leukaemia between the three race groups. The median age for whites was 30 years and for the coloureds was 15 years, which is comparable to the 16 years for the black patients. The two-peak age distribution for leukaemia was seen in the white group, but was absent in the other two groups. This is accounted for by a different distribution in non-lymphoblastic as opposed to lymphoblastic subtypes. Furthermore, there was a disproportionately high frequency of acute progranulocytic leukaemia in the black patients, whereas the white and coloured groups were similar. There was a single, clearly defined macro-scale cluster restricted to white patients in Statistical Region 17 (SR-17). This exploratory study provides the first epidemiologic data for acute leukaemia in the Cape Province. It needs to be extended in order to verify these observations under more controlled circumstances and to seek evidence for some environmental factors that may account for the geographical cluster.

Systemic lupus erythematosus and nodular regenerative hyperplasia of the liver.

A patient with systemic lupus erythematosus and nodular regenerative hyperplasia of the liver is presented.