Medical ethics and truth telling in the case of androgen insensitivity syndrome.

Should a physician always tell the truth to a patient? Is biomedical ethics too "politically correct" in certain situations? The second-place winner in the 1995 Logie Medical Ethics Essay Contest discusses whether telling the truth is the proper course for a physician dealing with certain patients.     

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.     

Informed consent and nudging

In order to avoid patient abuse, under normal situations before performing a medical intervention on a patient, a physician must obtain informed consent from that patient, where to give genuine informed consent a patient must be competent, understand her condition, her options and their expected risks and benefits, and must expressly consent to one of those options. However, many patients refrain from the option that their physician believes to be best, and many physicians worry that their patients make irrational healthcare decisions, hindering their ability to provide efficient healthcare for their patients. Some philosophers have proposed a solution to this problem: they advocate that physicians nudge their patients to steer them towards their physician's preferred option. A nudge is any influence designed to predictably alter a person's behavior without limiting their options or giving them reasons to act. Proponents of nudging contend that nudges are consistent with obtaining informed consent. Here I argue that nudging is incompatible with genuine informed consent, as it violates a physician's obligation to tell their patients the truth, the whole truth, and nothing but the truth during adequate disclosure.     

Patients' responsibilities in medical ethics

Patients have not been entirely ignored in medical ethics. There has been a shift from the general presumption that 'doctor knows best' to a heightened respect for patient autonomy. Medical ethics remains one–sided, however. It tends (incorrectly) to interpret patient autonomy as mere participation in decisions, rather than a willingness to take the consequences. In this respect, medical ethics remains largely paternalistic, requiring doctors to protect patients from the consequences of their decisions. This is reflected in a one–sided account of duties in medical ethics. Duties fall mainly on doctors and only exceptionally on patients. Medical ethics may exempt patients from obligations because they are the weaker or more vulnerable party in the doctor–patient relationship. We argue that vulnerability does not exclude obligation. We also look at others ways in which patient responsibilities flow from general ethics: for instance, from responsibilities to others and to the self, from duties of citizens, and from the responsibilities of those who solicit advice. Finally, we argue that certain duties of patients counterbalance an otherwise unfair captivity of doctors as helpers.     

Telling Lies: The Irrepressible Truth?

Telling a lie takes longer than telling the truth but precisely why remains uncertain. We investigated two processes suggested to increase response times, namely the decision to lie and the construction of a lie response. In Experiments 1 and 2, participants were directed or chose whether to lie or tell the truth. A colored square was presented and participants had to name either the true color of the square or lie about it by claiming it was a different color. In both experiments we found that there was a greater difference between lying and telling the truth when participants were directed to lie compared to when they chose to lie. In Experiments 3 and 4, we compared response times when participants had only one possible lie option to a choice of two or three possible options. There was a greater lying latency effect when questions involved more than one possible lie response. Experiment 5 examined response choice mechanisms through the manipulation of lie plausibility. Overall, results demonstrate several distinct mechanisms that contribute to additional processing requirements when individuals tell a lie.     

Disloyalty and treachery in bug-swapping shocker!

Insects often play host to a multitude of symbiotic partners, but the truth behind the many and varied interactions is only just beginning to be revealed. Three recent papers tell tales of partner swapping and selfishness that would delight even the most seasoned of tabloid editors.     

Using ecology to guide the study of cognitive and neural mechanisms of different aspects of spatial memory in food-hoarding animals

Understanding the survival value of behaviour does not tell us how the mechanisms that control this behaviour work. Nevertheless, understanding survival value can guide the study of these mechanisms. In this paper, we apply this principle to understanding the cognitive mechanisms that support cache retrieval in scatter-hoarding animals. We believe it is too simplistic to predict that all scatter-hoarding animals will outperform non-hoarding animals on all tests of spatial memory. Instead, we argue that we should look at the detailed ecology and natural history of each species. This understanding of natural history then allows us to make predictions about which aspects of spatial memory should be better in which species. We use the natural hoarding behaviour of the three best-studied groups of scatter-hoarding animals to make predictions about three aspects of their spatial memory: duration, capacity and spatial resolution, and we test these predictions against the existing literature. Having laid out how ecology and natural history can be used to predict detailed cognitive abilities, we then suggest using this approach to guide the study of the neural basis of these abilities. We believe that this complementary approach will reveal aspects of memory processing that would otherwise be difficult to discover.     

A survey of Calgary paediatricians' attitudes regarding the treatment of defective newborns: a report from Canada

... Premature infants and those born with severe abnormalities have stimulated the creation of neonatal units, but advances in medicine have created the dilemma of whether to sustain life in neonates who would otherwise die from their abnormalities. Often these methods are sophisticated and costly, and carry their own share of iatrogenic complications... It is crucial that the infant -- unable to be directly involved -- have an advocate, whose role it is to act in the best interests of the patient in determinations of the latter's treatment. Under most circumstances that role is occupied by the child's physician and family... For this reason, it is imperative to discern physicians' -- and specifically pediatricians' -- attitudes towards the treatment of defective newborns. To accomplish this, a survey was taken in Calgary... It is the purpose of this paper to provide information regarding local physicians' views and how they compare with the opinions of their colleagues from other countries.     

Purinergic Receptors,Past and Future (Closing Remarks)

Abstract

At the end of a symposium, it is useful to look back, both at the symposium itself and the developments that led up to the symposium. In this spirit, I thought it would be appropriate to tell the story of how I first became interested in purinergic receptors. I am recounting this story not because I believe that my audience has a burning interest in the history of my intellectual development, but rather because it illustrates the power of ideas.     

Qualitative interview study of communication between parents and children about maternal breast cancer

Objective To examine parents'' communication with their children about the diagnosis and initial treatment of breast cancer in the mother. Design Qualitative interview study within a cross-sectional cohort. Setting Two breast cancer treatment centers. Participants 32 women with stage I or stage II breast cancer with 56 school-aged children. Main outcome measures Semistructured interview regarding timing and extent of communication with children about the diagnosis and initial treatment of the mother''s illness, reasons for talking to children or withholding information, and help available and requested from health professionals. Results Women were most likely to begin talking to their children after their diagnosis had been confirmed by biopsy, but a few waited until after surgery or said nothing at all. Family discussion did not necessarily include mention of cancer. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis. The most common reason for not communicating was to avoid children''s questions, particularly those about death. Although most women had helpful discussion with a physician concerning their illness, few were offered help with talking to their children; many would have liked help, particularly the opportunity for both parents to talk to a health professional with experience in understanding and talking to children. Conclusion Parents diagnosed with cancer or other serious illnesses should be offered help to think about whether, what, and how to tell their children and about what children can understand, especially as they may well be struggling themselves to come to terms with their illness.     

The Doctor-Patient Relationship: A Survey of Attitudes and Practices of Doctors in Singapore

This article reports the results of a survey, by mailed questionnaire, of the attitudes, values and practices of doctors in Singapore with respect to the doctor-patient relationship. Questionnaires were sent to a random sample of 475 doctors (261 general practitioners and 214 medical specialists), out of which 249 (52.4%) valid responses were completed and returned. The survey is the first of its kind in Singapore. Questions were framed around issues of medical paternalism, consent and patient autonomy. As the doctors were exposed to Western ethical concepts in their training, we were not surprised to find that they would mostly allow patients some say in decision-making and keep patients reasonably informed. In respecting patient autonomy, they would usually seek to influence patient choice by persuasion. However, the residual 'Asian-ness' of doctors in Singapore gives rise to some inconsistencies between values and practices. Many doctors still believe that a number of their patients are incapable of rational choice. There is some lack of openness in telling patients the whole truth. When patients choose to refuse treatment, many doctors are prepared to involve family members in making a consensus decision.
Doctors were also asked how they made ethical judgements in the face of dilemmas, and how they would like disputes with patients to be resolved. By and large, the doctors prefer to make their own judgements rather than to rely on rules. They also wish to keep the law courts out of disputes with patients, preferring less public ways of settling disputes.     

Dream Sharing as Social Interaction

A survey was administered to 241 individuals whose questionnaire responses were analyzed to determine if they told their dreams to others, to whom they told their dreams, for what purpose, and in what social contexts dreams were shared. Respondents were also asked whether there were types of dreams they would not tell and individuals with whom they would not share dreams. This exploratory study suggests that dream sharing is a part of everyday social interaction, with the primary purpose of entertainment. There are gender differences with regard to dream sharing, and this sharing involves the utilization of social practices whereby individuals may protect themselves and others through deciding whether or not to share a dream. The study describes dream sharing as a social act that is negotiated based on the social rules regarding what topics friends and other intimates share in public or private.     

Not the doctor’s business: Privacy,personal responsibility and data rights in medical settings

This paper argues that assessing personal responsibility in healthcare settings for the allocation of medical resources would be too privacy-invasive to be morally justifiable. In addition to being an inappropriate and moralizing intrusion into the private lives of patients, it would put patients’ sensitive data at risk, making data subjects vulnerable to a variety of privacy-related harms. Even though we allow privacy-invasive investigations to take place in legal trials, the justice and healthcare systems are not analogous. The duty of doctors and healthcare professionals is to help patients as best they can—not to judge them. Patients should not be forced into giving up any more personal information than what is strictly necessary to receive an adequate treatment, and their medical data should only be used for appropriate purposes. Medical ethics codes should reflect these data rights. When a doctor asks personal questions that are irrelevant to diagnose or treat a patient, the appropriate response from the patient is: ‘none of your business’.     

Avoiding the fate of Troy: response to Arlettaz et al

We agree entirely with Arlettaz et al. that we face an environmental crisis of extraordinary proportions. However, their analysis of how to respond perfectly illustrates our point. In particular, we would transpose their statement 'Although we agree that communication strategies must accommodate human psychology to succeed, we believe that neglecting or euphemizing the dramatic impact that humans have on the biosphere, just through fear of the Cassandra syndrome when addressing an inconvenient truth, is not an acceptable alternative discourse.' to 'Although acknowledging the dramatic impact humans exert on the biosphere, there is no acceptable alternative discourse; to adopting communication strategies that accommodate human psychology.'     

Disabling violence: intellectual disability and the limits of ethical engagement

Those giving care to people with intellectual disabilities in the United Kingdom are obliged to drive bad forms of intimacy, such as abuse, out of the caring relationship. They must also enable these individuals to find positive forms of intimacy through reciprocal relationships such as friendships. These two aims are normally separated, but in an organization called L'Arche UK, they are combined in the same relationship when caregivers pursue reciprocal friendships with those they support. What happens to this ethical project when those with intellectual disabilities are violent to their caregivers? Trying to pursue intimate engagement in this context has the unexpected result of creating distrustful and tense relationships, which raises questions not only about why this ethical project goes so wrong, but also about what it would mean for it to go right: that is, what a richer and fully positive reciprocity between limited and complex human beings would actually look like in practice.     

Dealing with Target Uncertainty in a Reaching Control Interface

Prosthetic devices need to be controlled by their users, typically using physiological signals. People tend to look at objects before reaching for them and we have shown that combining eye movements with other continuous physiological signal sources enhances control. This approach suffers when subjects also look at non-targets, a problem we addressed with a probabilistic mixture over targets where subject gaze information is used to identify target candidates. However, this approach would be ineffective if a user wanted to move towards targets that have not been foveated. Here we evaluated how the accuracy of prior target information influenced decoding accuracy, as the availability of neural control signals was varied. We also considered a mixture model where we assumed that the target may be foveated or, alternatively, that the target may not be foveated. We tested the accuracy of the models at decoding natural reaching data, and also in a closed-loop robot-assisted reaching task. The mixture model worked well in the face of high target uncertainty. Furthermore, errors due to inaccurate target information were reduced by including a generic model that relied on neural signals only.     

Do we have a right to an unmanipulated genome? The human genome as the common heritage of mankind

The human genome is commonly regarded as a ‘natural’ connection between all human beings, as it has been handed down to us by our predecessors. As such, it is believed to represent common heritage of humanity, e.g. a resource of outstanding value that should be the object of special protection and international concern. Some critics argue that germline manipulation would disrupt this natural heritage and that we have a duty to preserve the integrity of the human germline. However, a closer look reveals that the concept of common heritage of humanity does not necessarily imply the impermissibility of germline manipulation. If it is restricted to the prevention of severe diseases, germline manipulation does not represent a threat to the unity and identity of the human species, even though this would create a new form of relationship between human beings, namely that between a designer and a genetically designed person.     

Models for truth‐telling in physician‐patient encounters: What can we learn from Yoruba concept of Ooto?

Empirical studies have now established that many patients make clinical decisions based on models other than Anglo American model of truth‐telling and patient autonomy. Some scholars also add that current medical ethics frameworks and recent proposals for enhancing communication in health professional‐patient relationship have not adequately accommodated these models. In certain clinical contexts where health professional and patients are motivated by significant cultural and religious values, these current frameworks cannot prevent communication breakdown, which can, in turn, jeopardize patient care, cause undue distress to a patient in certain clinical contexts or negatively impact his/her relationship with the community. These empirical studies have now recommended that additional frameworks developed around other models of truth‐telling; and which take very seriously significant value‐differences which sometimes exist between health professional and patients, as well as patient's cultural/religious values or relational capacities, must be developed. This paper contributes towards the development of one. Specifically, this study proposes a framework for truth‐telling developed around African model of truth‐telling by drawing insights from the communitarian concept of oot?? amongst the Yoruba people of south west Nigeria. I am optimistic that if this model is incorporated into current medical ethics codes and curricula, it will significantly enhance health professional‐patient communication.