Health Care Ethics Consortium of Georgia ...ethics in action

The case of Margaret Haywood, the ‘undercover nurse’, is a significant one for the UK's National Health Service (NHS). She investigated complaints made about the Royal Sussex County Hospital and covertly filmed inpatients experiencing care detrimental to their health. The material was subsequently broadcast on the BBC's Panorama programme. It caused a scandal and brought about changes at the hospital, as well a demand for greater clinical leadership. Margaret Haywood was, however, struck off the nursing register for breaching confidentiality and because of the methods she used to blow the whistle.

The authors apply the ethical lenses of purpose, principle, people and power to explore this case.

This is a morally ambiguous situation in which both the protagonist and the organisation compromised their core values. The undercover nurse used individuals as a means to a ‘higher’ end, and the Brighton and Sussex University Hospitals NHS Trust are seen to have deviated from the ethical to the business map, in a contradiction of what the health service represents.

These deficits can be repaired by reinforcement of the ethics of duty and ideals on a practical level and the involvement of clinicians to lead at a management level, to act as a moral compass.

Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective?

A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness and evidence for neonates born at 28 and 32 GAW.

The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India.

Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders.

The author explores the ethics of decision-making and confidentiality in donor insemination through the narrative of her experience having two children with a sperm donor who was later discovered to carry a gene for a serious heart disease, hypertrophic cardiomyopathy. Contrasting individualist and communitarian ethical models, she questions understandings of confidentiality that hamper the construction of a medical family tree, especially when prognosis and treatment depend on the larger familial profile of the disease. She also emphasises that for the patient family the discovery of biological family through the lens of transmitted illness leads to a shift in family identity that goes beyond the purely medical.

Recent advances in biotechnologies have led to speculations about enhancing human beings. Many of the moral arguments presented to defend human enhancement technologies have been limited to discussions of their risks and benefits. The author argues that in so far as ethical arguments focus primarily on risks and benefits of human enhancement technologies, these arguments will be insufficient to provide a robust defence of these technologies. This is so because the belief that an assessment of risks and benefits is a sufficient ethical evaluation of these technologies incorrectly presupposes that risk assessments do not involve value judgements. Second, it presupposes a reductionist conception of ethics as merely a risk management instrument. Each of these assumptions separates ethical evaluation from discussion and appraisal of ends and means and thus leaves important—indeed, essential—ethical considerations out of view. Once these problematic assumptions are rejected, it becomes clear that an adequate defence of human enhancement technologies requires more than a simple balance of their risks and benefits.

The aim of this study was to examine the development of the implementation of patient rights and the practical course of patient rights legislation in Edirne, as well as the verbal and written applications to relevant departments between 2004 and 2008.

The present study was a descriptive, retrospective and cross-sectional study. The data of the study were obtained by retrospectively reviewing records of written complaints to patient rights units and on-site solutions between 2004, the year of establishment of these units, and 2008.

The incidence of written and verbal complaints were calculated to be 23.1 in 100 000 and 137.9 in 100 000, respectively. The increase was 102.2% for on-site solutions, whereas it was calculated as 97.8% for written applications. It was noticed that the rate of violation judgements was high (42.5% (17/40)) in the first year the Edirne State Hospital patient rights committee was established.

Possible problems encountered during the presentation of health services can be solved by the implementation of patient rights under the legislative guarantee. The implementation of patient rights should be considered as reflections of a socialised government on health services.

Until 2008, if doctors followed the General Medical Council's (GMC's) guidance on providing information prior to obtaining a patient's consent to treatment, they would be going beyond what was technically required by the law. It was hoped that the common law would catch up with this guidance and encourage respect for patients' autonomy by facilitating informed decision-making. Regrettably, this has not occurred. For once, the law's inability to keep up with changing medical practice and standards is not the problem. The authors argue that while the common law has moved forward and started to recognise the importance of patient autonomy and informed decision-making, the GMC has taken a step back in their 2008 guidance on consent. Indeed, doctors are now required to tell their patients less than they were in 1998 when the last guidance was produced. This is an unfortunate development and the authors urge the GMC to revisit their guidance.

Ben Saunders claims that actual consent is not necessary for organ donation due to ‘normative consent’, a concept he borrows from David Estlund. Combining normative consent with Peter Singer's ‘greater moral evil principle’, Saunders argues that it is immoral for an individual to refuse consent to donate his or her organs. If a presumed consent policy were thus adopted, it would be morally legitimate to remove organs from individuals whose wishes concerning donation are not known. This paper disputes Saunders' arguments. First, if death caused by the absence of organ transplant is the operational premise, then, there is nothing of comparable moral precedence under which a person is not obligated to donate. Saunders' use of Singer's principle produces a duty to donate in almost all circumstances. However, this premise is based on a flawed interpretation of cause and effect between organ availability and death. Second, given growing moral and scientific agreement that the organ donors in heart-beating and non-heart-beating procurement protocols are not dead when their organs are surgically removed, it is not at all clear that people have a duty to consent to their lives being taken for their organs. Third, Saunders' claim that there can be good reasons for refusing consent clashes with his claim that there is a moral obligation for everyone to donate their organs. Saunders' argument is more consistent with a conclusion of ‘mandatory consent’. Finally, it is argued that Saunders' policy, if put into place, would be totalitarian in scope and would therefore be inconsistent with the freedom required for a democratic society.

The acceleration of the market globalisation process over the last three decades has internationalised clinical research and influenced both the way in which it is funded and the development and application of research practices. In addition, in recent years international multicentre randomised clinical trials have become the model par excellence for research on new medicines. The neoliberal model of globalisation has induced a decline in state power, both with regard to establishing national research for health priorities and to influencing the development of adequate ethical guidelines to protect human beings that participate in multinational research. In this respect, poor and low-income countries, which lack sustainable control and review systems to deal with the ethical and methodological challenges of complex studies conducted by researchers from affluent countries and funded by large multinational pharmaceutical companies, are particularly vulnerable. The aim of the present paper is to explore critically some of the actual and possible ethical pitfalls of globalisation of clinical research and propose mechanisms for turning transnational clinical research into a more cooperative and fairer enterprise.

Disclosures of funding sources and conflicts of interests (COI) in published peer-reviewed journal articles have recently begun to receive some attention, but many critical questions remain, for example, how often such reporting occurs concerning research conducted in the developing world and what factors may be involved.

Of all articles indexed in Medline reporting on human subject HIV research in 2007 conducted in four countries (India, Thailand, Nigeria and Uganda), this study explored how many disclosed a funding source and COI, and what factors are involved.

Of 221 articles that met the criteria, 67.9% (150) disclosed the presence or absence of a funding source, but only 20% (44) disclosed COI. Studies from Uganda were more likely, and those from Nigeria were less likely to mention a funding source (p<0.001). Of articles in journals that had adopted International Committee of Medical Journal Editors (ICMJE) guidelines, 56% did not disclose COI. Disclosure of funding was more likely when: ≥50% of the authors and the corresponding author were from the sponsoring country, the sponsor country was the USA, and the articles were published in journals in which more of the editors were from the sponsoring countries.

Of the published studies examined, over a third did not disclose funding source (ie, whether or not there was a funding source) and 80% did not disclose whether COI existed. Most articles in ICMJE-affiliated journals did not disclose COI. These data suggest the need to consider alteration of policies to require that published articles include funding and COI information, to allow readers to assess articles as fully as possible.

The updated consensus report on undergraduate medical education (1) provides an extensive framework for teaching ethics and law. However, there is a need for further research into the indicators of good progress towards sound moral reasoning and action to take into account personal and professional developmental trajectories. The report indicates competencies which should be demonstrable by students: additional consideration needs to be given to those competencies which institutions should be able to demonstrate in relation to the provision made for students and teachers.

To ascertain and improve the understanding and use of chaperones among the patients of an English general practice (GP).

Doctors have long been advised to have a third party present during intimate physical examinations. Little is known about the understanding of the term in the general population in England and the consequences of this for the promotion and use of chaperones in GP. We audited the understanding and use of chaperones in an English GP. The aim of the study was to increase the awareness of the availability of chaperones in our population.

A questionnaire was given randomly to 100 patients attending the GP surgery. Participants were asked about their awareness of and frequency of requesting a chaperone while undergoing intimate examinations. Based on the initial results, a poster was designed for the waiting room to increase awareness. Data were collected with the same questionnaire to see if the new poster altered surgery attendees understanding and likely subsequent use of chaperones.

In the initial audit, 29% of patients were unaware of the term chaperone, and only one person (1%) had ever requested a chaperone. After the introduction of a specially designed poster, the results showed an improvement in awareness from 71% to 89%, and the likely frequency of using a chaperone increased from 1% to 4%.

There is a need to improve the understanding of the general population about chaperones if we are to see greater use of chaperones in GP.

Concepts such as ‘coercion’ and ‘inducement’ are often used within bioethics without much reflection upon what they mean. This is particularly so in research ethics where they are assumed to imply that payment for research participation is unethical. Wertheimer and Miller advance our thinking about these concepts and research ethics in a significant way, specifically by questioning the possibility of genuine offers ever being coercive. This commentary argues that they are right to question this assumption, however, more needs to be said about the plausible coercive offer cases and to explain the normativity of these cases.

The Hospital Standardised Mortality Ratio (HSMR) is a commonly used measure of hospital mortality that is standardised for age, comorbidities and other factors. By tradition, this statistic has always excluded patients classified as ‘palliative’. The HSMR has never been validated as a reliable measure of quality of care, and it can be very hard to interpret, partly due to difficulties with defining and applying the term ‘palliative’. In this paper, we review the Canadian experience with the palliative status flag, and explain why it is so difficult to define and apply consistently. We also highlight some potential concerns about clinicians labelling inpatients as ‘palliative’ during their admission. Finally, we propose an organisational ethics framework, and six specific suggestions for hospitals to use when publishing statistics such as the HSMR.

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice.

Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life.

To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice.

A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses.

Nine physicians and ten nurses in 10 nursing homes in Norway.

Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin.

The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying.

This paper analyses the complex issues faced by regulators of the infertility treatment industry in response to the social and technological changes that heralded a new openness in knowledge about genetics, paternity and the concomitant need for donor offspring to know their genetic origins. The imperative for full information about their donor and biological father, who contributed to their creation and half of their genome, was an outcome unanticipated by the architects of the donor insemination programme. Genetic paternity testing realised the possibility of fixed and certain knowledge about paternity. This paper outlines medicine's role in the formation of normative families through the use of donor insemination. Extending information from an Australian study on the use of DNA paternity testing, it analyses what the social and scientific changes that have emerged and gained currency in the last several decades mean for the new ‘openness’ and the role of paternity testing in this context. It concludes with recommendations about how to deal with the verification of paternity in linking donor conceived adult children to their donor.

Consent plays a vital role in every aspect of medicine and surgery, facilitating the patient in making informed decisions about their treatment. The recently published Reference Guide to Consent, by the Department of Health (DH), notes that, although not a legal requirement, the completion of consent forms is good practice, particularly in interventions such as surgery. In addition, the Parliamentary and Health Service Ombudsman noted that a significant number of complaints about consent involved the complainant feeling that they did not fully understand what was going to happen. It was often found that there was no documentation to clarify what the patient was told, when and by whom.

We have performed an audit of 71 randomly selected consent forms, elective and trauma cases within our district general hospital orthopaedics department. Our data demonstrate that a significant number of consent forms were incorrectly or insufficiently completed. This could not only leave the patient confused about their procedure but also leaves the doctor open to litigation, with little in the way of documentation support. Minor changes in consenting methods and more precise documentation could significantly improve patient experience and satisfaction.

The deliberative ethics guidelines elaborated and implemented by members of the IFOM-IEO Campus (Firc Institute of Molecular Oncology (IFOM) and the European Institute of Oncology (IEO)). These should serve the dual purpose of establishing a minimal set of standard rules for bioethical debate and any ensuing decision-making process, especially for the perspective of providing real instruments to foster public engagement and public awareness on the ethical issues involved in biomedical research. It is shown that these guidelines instantiate the scheme of one of the correct ways of debating formalised by the western thought.