Developmental paediatrics in primary care: what should we teach?

There is little agreement about what constitutes good developmental paediatric practice at the level of primary care. Many of the available screening tests are intrinsically unsatisfactory or badly performed, but screening is only a small part of developmental paediatrics. Every primary care doctor should be familiar with the scientific basis of the subject even if a decision is made not to embark on a formal screening programme.     

Setting priorities: is there a role for citizens' juries?

Citizens'' juries are an attempt to meaningfully involve members of the public in decisions which affect them in their own communities. The Institute for Public Policy Research and Cambridge and Huntingdon Health Authority have recently piloted the first jury in the United Kingdom. Sixteen jurors sat for four days, hearing evidence from a number of expert witnesses. The jurors were asked to consider how priorities for health care should be set, according to what criteria, and to what extent the public should be involved in this process. This pilot was also an attempt to assess the process itself, and our initial evaluation indicates that, given enough time and information, the public is willing and able to contribute to the debate about priority setting in health care.     

Ethical issues in heart failure: overview of an emerging need

Modern therapies in cardiovascular medicine aim at preventing death and improving patients' quality of life. However, cardiologists often focus on what can be done rather than what should be done, and the latter consideration may be neglected in the midst of therapeutic optimism. The life-saving success of cardiovascular treatments, combined with an aging population, has created an epidemic of heart failure, a disease that portends considerable morbidity and mortality and raises important questions about what should be done. This and the following essays in this section address the emerging need for ethical analysis of issues raised by patients with heart failure. In this overview, we discuss end-of-life care in end-stage heart failure, new therapies for heart failure, and heart failure research.     

A report from Japan: choices of Japanese patients in the face of disagreement

Background: Patients in different countries have different attitudes toward self-determination and medical information. Little is known how much respect Japanese patients feel should be given for their wishes about medical care and for medical information, and what choices they would make in the face of disagreement.
Methods: Ambulatory patients in six clinics of internal medicine at a university hospital were surveyed using a self-administered questionnaire.
Results: A total of 307 patients participated in our survey. Of the respondents, 47% would accept recommendations made by physicians, even if such recommendations were against their wishes; 25% would try to persuade their physician to change their recommendations; and 14% would leave their physician to find a new one.
Seventy-six percent of the respondents thought that physicians should routinely ask patients if they would want to know about a diagnosis of cancer, while 5% disagreed; 59% responded that physicians should inform them of the actual diagnosis, even against the request of their family not to do so, while 24% would want their physician to abide by their family's request and 14% could not decide. One-third of the respondents who initially said they would want to know the truth would yield to the desires of the family in a case of disagreement.
Interpretations: In the face of disagreement regarding medical care and disclosure, Japanese patients tend to respond in a diverse and unpredictable manner. Medical professionals should thus be prudent and ask their patients explicitly what they want regarding medical care and information.     

Companion-Animal Caregiver Knowledge,Attitudes, and Beliefs Regarding End-of-Life Care

Although awareness of end-of-life care is growing within the veterinary field and there appears to be consumer demand for these services, it is unclear exactly what caregivers know about end-of-life options for their companion animals. Are companion-animal caregivers aware of the range of options for their nonhuman animals? What do they value most highly for their nonhuman animals at the end of life? Answers to these and other related questions about caregiver perceptions are important because what they know about end-of-life care and how they approach decision-making for their companion animals will shape the kind of care an animal receives. This article presents the results of a large survey exploring companion-animal caregivers’ knowledge, attitudes, and beliefs about end-of-life care, including in-home euthanasia, hospice and palliative care, financial commitment to end-of-life care, insurance usage, and level of comfort in providing care (e.g., subcutaneous fluids) in the home.     

Geriatric-palliative care units model for improvement of elderly care

The aim of this research was to indicate the necessity of a new organizational model of health and social care system for the geriatric population in Croatia. Modern geriatrics puts special emphasis on the idea that the care of the elderly should be performed through home care or long-term care institutions, rather than in the acute care hospital departments. The social healthcare of the elderly requires a multidisciplinary approach, as well as teamwork and coordination of institutional and non-institutional departments. Founding of palliative care units is clearly absent from the existing elderly care system. 33% of the total deceased geriatric population within the target area (2000-2002) has passed away in institutions (Dubrovnik General Hospital and nursing homes), what clearly indicates a need for organized palliative care on the stationary level. Nursing homes in Croatia should accept about 4% of the total number of older population (according to the gerontology research). Nevertheless, this research shows that the available capacity of the nursing homes in the Dubrovansko-Neretvanska County is 50% of the projected percentage. The solution might be setting up of palliative-geriatric units in already existing institutions, as shown by the SWOT analysis.     

Aspects du care et de « l’éthique du care » en psychiatrie

The debate about care and its different forms has developed a lot in social sciences and in moral philosophy, since Carol Gilligan, arguing in a feminist perspective against the prejudices of moral development psychology, has defined an “ethics of care” and claimed that it should be recognized as of the same value as the dominant ethics (Kantian or utilitarian). Following this claim, a variety of researches have been carried out concerning the activity of caring that goes beyond the field of medical practice. However, in the medical field, in which “care” has to be distinguished from “cure,” the development of a theory of care has a strong impact on the conception of treatment (of its organization, its assessment, and the way it is taught). We will focus particularly on what is implied in psychiatry by such a characterization of care.     

The New Health Practitioner — The Past as Prologue

The training and utilization of New Health Practitioners (NHP''s) has moved within a decade from a small tentative beginning in the mid-1960''s to a major health manpower policy issue. Its discussion transcends a number of important and emotionally charged areas including the role of various professions in providing health care services, the renaissance of primary care, the geographic and economic maldistribution of medical services, and the cost of care. It is valuable to highlight what is known, what is professed and what needs to be studied further about this issue.     

General practitioners' responsibilities to their patients.

The views of general practitioners about their responsibilities for patient care have not been canvassed. A survey of general practitioners was therefore carried out to determine their views. A postal questionnaire, in which general practitioners were asked what they saw as their responsibilities, was sent to 525 principals in Avon and completed by 424, giving a response rate of 81%. The doctors generally agreed that their responsibilities for patient care included problems related to internal medicine, such as managing diabetes and hypertension. Less consensus was found in the replies to questions about technical procedures, such as resection of ingrowing toenails, and gynaecological, orthopaedic, or psychosocial problems. The results supported the view that general practitioners are gradually abandoning technical aspects of medicine to specialists without a compensating role having been defined. In the light of this trend the responsibilities of general practitioners should be clearly defined by the profession.     

Rationing in practice: the case of in vitro fertilisation.

One of the few examples of explicit rationing in the National Health Service is provided by in vitro fertilisation. Of six purchasing authorities examined three have decided against buying in vitro fertilisation while three have decided in favour. The decisions reflect local factors such as the absence or presence of local providers and the views of the public and health professionals. But in vitro fertilisation also illustrates some of the wider issues involved in all decisions about purchasing: questions about what should be provided by the National Health Service, about what procedures should be compared when weighing up value for money, and whether equity demands national decisions about what to provide.     

WHAT IS IT TO BE A DAUGHTER? IDENTITIES UNDER PRESSURE IN DEMENTIA CARE

This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.     

The use of infants in drug research when there is no direct benefit to them: a survey of Canadian health care professionals serving on ethics committees.

Canadian health care professionals and lawyers serving on ethics committees were questioned about their views on pharmacokinetic research in newborn infants who are not likely to benefit directly from the results. Of the 50 respondents 13 felt that blood samples should be taken only for therapeutic reasons; 10 of the 13 argued that additional blood samples should not be taken, because there is no direct benefit to the infant; and 8 felt that proxy consent cannot be given for invasive nontherapeutic research. Four of the five participating lawyers would not permit additional blood samples to be taken. Of the 37 respondents who would permit additional blood samples to be taken, 27 felt that the number of samples taken should depend on the researcher''s justification for that number of samples; only 7 of the respondents had a clear idea of what the "upper limit" of the number of blood samples should be.     

Fair Resource Allocation to Health Research: Priority Topics for Bioethics Scholarship

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non‐domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision‐making on whether and to what extent to allocate resources to non‐domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny.     

Resuscitation with an AED: putting the data to use

The increased use of the automated external defibrillator (AED) contributes to the rising survival rate after sudden cardiac arrest in the Netherlands. When used, the AED records the unconscious person’s medical data (heart rhythm and information about cardiopulmonary resuscitation), which may be important for further diagnosis and treatment. In practice, ethical and legal questions arise about what can and should be done with these ‘AED data’. In this article, the authors advocate the development of national guidelines on the handling of AED data. These guidelines should serve two purposes: (1) to safeguard that data are handled carefully in accordance with data protection principles and the rules of medical confidentiality; and (2) to ensure nationwide availability of data for care of patients who survive resuscitation, as well as for quality monitoring of this care and for related scientific research. Given the medical ethical duties of beneficence and fairness, existing (sometimes lifesaving) information about AED use ought to be made available to clinicians and researchers on a structural basis. Creating a national AED data infrastructure, however, requires overcoming practical and organisational barriers. In addition, further legal study is warranted.     

Learning the Moral Economy of Commodified Health Care: “Community Education,” Failed Consumers,and the Shaping of Ethical Clinician-Citizens

Leaders of health professional schools often support community-based education as a means of promoting emerging practitioners’ awareness of health disparities and commitment to serving the poor. Yet, most programs do not teach about the causes of health disparities, raising questions regarding what social and political lessons students learn from these experiences. This article examines the ways in which community-based clinical education programs help shape the subjectivities of new dentists as ethical clinician-citizens within the US commodified health care system. Drawing on ethnographic research during volunteer and required community-based programs and interviews with participants, I demonstrate three implicit logics that students learned: (1) dialectical ideologies of volunteer entitlement and recipient debt; (2) forms of justification for the often inferior care provided to “failed” consumers (patients with Medicaid or uninsured); and (3) specific forms of obligations characterizing the ethical clinician-citizen. I explore the ways these messages reflected the structured relations of both student encounters and the overarching health care system, and examine the strategies faculty supervisors undertook to challenge these messages and relations. Finally, I argue that promoting commitments to social justice in health care should not rely on cultivating altruism, but should instead be pursued through educating new practitioners about the lives of poor people, the causal relationships between poverty and poor health, and attention to the structure of health care and provider–patient interactions. This approach involves shining a critical light on America’s commodified health care system as an arena based in relations of power and inequality.     

Where medical science and human behaviour meet.

Although we may be wrong about the details, we should try to imagine what the future holds for hospital consultants. The days of the independent consultant in the same post for 30 years are over, and there will be a change from "the" consultant to a few tiers of senior staff. Patients will increasingly demand to see specialists, so more specialists will be needed. As patients and their advocates become better informed the traditional rationing of clinical care to patients in Britain, such as restricting access to specialists, cannot continue. There is a current trend for evidence based health care, but the idea that each element of medical practice can be dictated by systematic evidence based research will prove to be naïve--such research informs practice rather than dictates it. Science will continue to act as the guide to medical practice but specialists will not be turned into a set of logical operators running programs designed by health planners.     

Bioethicists to the Barricades!

In this article I begin with an anecdote as a way of exploring just exactly what activism entails. Are we talking about the kind of activism every citizen ought to engage in? Should we confine our topic to activism in health care settings? Just what is activism anyway, and how much and what kind ought bioethicists to engage in? Finally, I consider the possibility that it’s perfectly permissible for bioethicists not to be activists of any kind.     

Clinicians'' requirements for chemical sensors for in vivo monitoring: a multinational survey.

We report on a survey of senior clinicians in 11 countries which asked about what they see as the main areas where in vivo chemical sensors will be most useful in medicine, and about what their operating characteristics should be. This information may help those designing such sensors to match available and new technologies to clinical needs.     

Mouse nomenclature and maintenance of genetically engineered mice

Modern genetic engineering technologies enable us to manipulate the mouse genome in increasingly complex ways to model human biology and disease. As a result, the number of mouse strains carrying transgenes or induced mutations has increased markedly. Thorough understanding of strain and gene nomenclature is essential to ensure that investigators know what kind of mouse they have, and what to expect in terms of phenotype. Genetically engineered mice alter gene function by over-expressing, eliminating, or modifying a gene product. The resulting phenotype is often unexpected and not completely understood, necessitating special care and potentially complex breeding and husbandry strategies. Animal care technicians responsible for routine maintenance of the colony, facility managers, veterinarians, and research personnel working with mice should be well informed about the nature of the mutation, distinguishing characteristics, and necessary precautions in handling the mice. Personnel working with mice also must be aware of the multitude of factors intrinsic to the mouse and present in the environment that can influence reproductive performance. Finally, diligent adherence to the maintenance of genetic quality in conjunction with cryopreservation of germplasm is the best insurance against loss of a colony.     

Health professionals and South Africa: supporting change in the health sector.

Now that political change is on the way in South Africa, what should be the position of doctors who are invited to visit the country? Does the "academic boycott" still have relevance? Waterston and Zwi review the case for and against an academic boycott policy, using evidence collected during the recent visit by Physicians for Human Rights (UK) and the Johannes Wier Foundation. The health system in South Africa is still inequitable, and despite progress towards desegregation in hospitals there is little momentum towards universal provision of primary health care, especially in the rapidly growing townships around big cities. The authors consider that pressure on the government should be maintained by outside organisations but that support directed towards appropriate health care should be encouraged, particularly in public health and primary health care.