Parents respond to the death of a child in very different ways. Some parents may be violent or angry, some sad and tearful, some quiet and withdrawn, and some frankly delusional. We present a case in which a father’s reaction to his daughter’s death is a desire to protect his wife from the stressful information. The wife is in the second trimester of a high-risk pregnancy and so is particularly fragile. We asked pediatricians and bioethicists to discuss the ways (...) in which they might respond to the father’s understandable but troubling request. -/- The death of a young child is one of the most stressful events that can happen to parents. The stress of such a loss is compounded if the parents are in a foreign country, far from home, and without a network of family and friends to provide social support. The stress may be more difficult to deal with if the parents have acute health problems of their own. In this month’s “Ethics Rounds,” we present a case in which a father whose daughter died requested that the doctors delay telling his wife. His reason: She is pregnant, in the second trimester, and on bed rest because of preterm labor. He does not want to add to her stress. We asked both pediatricians and bioethicists to respond to this request. (shrink)

The Food and Drug Administration, as a matter of long-standing policy, does not inform the public of instances whereby applications for new drugs or new indications for existing drugs have been rejected by the agency or withdrawn from consideration, nor does it disclose the agency’s analyses of the data submitted with such applications. This lack of transparency is unjustified and prevents patients, researchers, and healthcare providers from gaining insight into why a drug’s application was not approved. The FDA’s policy is (...) particularly troubling in cases where the agency has found a currently marketed drug to be ineffective or unsafe for a newly proposed indication. Disclosure of the FDA’s findings in such cases would promote public health by encouraging healthcare providers to avoid prescribing drugs for unapproved uses that the agency has deemed to be potentially dangerous or ineffective. The FDA’s counterpart agencies in Europe and Canada have demonstrated the feasibility of disclosing information on rejected and withdrawn drug marketing applications. The FDA should follow suit and allow the American public to know when a drug is deemed unsafe or ineffective for a certain use. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity for rational (...) choice in alignment with one's values and goals). (shrink)

The ethics of sales is an important, but neglected, topic in business ethics. I offer criticisms of what others have said about themoral duties of salespeople and formulate what I take to be a more plausible theory. My theory avoids the objections I raise againstothers and yields plausible results when applied to cases. I also defend my theory by appeal to the golden rule and offer a justificationfor the version of the golden rule to which I appeal. I argue that (...) salespeople have prima facie duties to do the following: 1. warncustomers of potential hazards, 2. refrain from lying and deception, 3. fully and honestly answer questions about what they are selling,and 4. refrain from steering customers toward purchases they have reason to think will harm the customers. The paper concludes with a brief appendix that discusses the implications of the ethics of sales for the social responsibilities of business. (shrink)

This essay focuses on cases in which a physician elects to withhold, either temporarily or permanently, certain information from a patient for arguably beneficent reasons. That is, the physician is not being self-serving, to herself or her institution, by not revealing this information. Rather, the goal is purely to promote what the physician believes to be in the patient’s best interest by withholding information that may be harmful to him. This practice of informational guardianship is known (...) as the “therapeutic privilege.” This discussion is thus also limited to clinical interactions and not explicitly discuss withholding information from research subjects, which raises distinct ethical issues and elicits different reasons used to justify or nullify the moral permissibility of nondisclosure. (shrink)

This paper aims to distil the essence of deception performed by means of withholding information, a topic hitherto largely neglected in the psychological, linguistic, and philosophical research on deception. First, the key conditions for deceptively withholding information are specified. Second, several notions related to deceptively withholding information are critically addressed with a view to teasing out the main forms of withholding information. Third, it is argued that deceptively withholding information can (...) be conceptualized in pragmatic-philosophical terms as being based on the violation of Grice's first maxim of Quantity, which is conducive to covertly untruthful meaning, specifically hearer-inferred what is said that presents the violation of the first maxim of Quality. In order to meet this goal, Gricean and neo-Gricean scholarship on the first maxim of Quantity and its consequences is revisited. Fourth, a number of linguistic realizations of withholding information are examined. It is argued that some of the examples found in the relevant scholarship, namely those that involve scalar expressions, qualify rather as lies. (shrink)

Background: More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This will increasingly become a dilemma for practitioners.Objective: To report doctors’ views on whether to disclose or withhold information on low risks of complications.Methods: In a qualitative study design, 37 respondents (...) were included. Focus group interviews were held with 22 respondents and individual in-depth interviews with 15.Results: Doctors have doubts about disclosing or withholding information on complication risk, especially in a risk range of 1 in 200 to 1 in 10 000. Their considerations on whether to disclose or to withhold information depend on a complicated mix of patient and doctor-associated reasons; on medical and personal considerations; and on the kind and purpose of intervention.Discussion: Even though the degree of a risk is important in a doctor’s considerations, the severity of the possible complications and patients’ wishes and competencies have an important role as well. Respondents said that low risks should always be communicated when there are alternatives for the intervention or when the patient may prevent or mitigate the risk. When the appropriateness of disclosing risks is doubtful, doctors should always tell their patients that no intervention is without risk, give them the opportunity to gather all the information they need or want, and enable them to detect a complication at an early stage. (shrink)

The American Journal of Bioethics, Volume 11, Issue 12, Page 70-72, December 2011.

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions (...) judged too futile to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (shrink)

In healthcare priority settings, early access to treatment before reimbursement decisions gives rise to problems of whether negative decisions for cost‐effectiveness reasons should result in withdrawing treatment, already accessed by patients. Among professionals there seems to be a strong attitude to distinguish between withdrawing and withholding treatment, viewing the former as ethically worse. In this article the distinction between withdrawing and withholding treatment for reasons of cost effectiveness is explored by analysing the doing/allowing distinction, different theories of justice, (...) consequentialist and virtue perspectives. The authors do not find any strong reasons for an intrinsic difference, but do find some reasons for a consequentialist difference, given present attitudes. However, overall, such a difference does not, all things considered, provide a convincing reason against withdrawal, given the greater consequentialist gain of using cost‐effective treatment. As a result, patients should be properly informed when given early access to treatment, that such treatment can be later withdrawn following a negative reimbursement decision. (shrink)

This article examines the standard of disclosure, set by law, of risks of treatment and alternative procedures that should normally be disclosed to patients. Therapeutic privilege has been recognized by the courts as an exception to this standard of disclosure. It provides a justification for withholding such information from competent patients in the interests of patient welfare. The article explores whether this justification is either legally or ethically defensible. In assessing patient welfare, the health care professional is required (...) to consider the patient's overall best interests - but this is not limited to an assessment of medical best interests. It is contended that the health care professional is neither qualified nor justified in making such a judgement, as the law recognizes that a competent adult patient determines her own best interests. This is not possible without sufficient information of risks to inform the decision. (shrink)

Background Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments. The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units. Methods A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, (...) legal and religious leaders. Results Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of. Most respondents were between 30 and 49 years old, Catholic Christians, anesthesiologists, working in Beirut. Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the “Principle of Double Effect”. The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary, involving the family, and the patient, or his advance directives or his surrogate and the nurses. The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices. Conclusion Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country. (shrink)

In cases of sudden, life-threatening illness where the chance of survival appears negligible to the admitting physician, this opinion is not always revealed during the initial meeting with the patient's relatives. Reasons as to why this withholding of the truth may be acceptable are explored through review of available evidence and personal reflection. Factors identified include: the importance of hope in families' coping mechanisms, and the instinct to preserve it; the fallibility of physicians' perception of poor prognosis in the (...) early phase of illness; the need to avoid large swings in relatives' expectations that occur when patients appear to rally during initial resuscitation; and the adverse effect that an atmosphere of hopelessness can have on the provision of medical care. A strategy for the staged disclosure of information and the confirmation of hopelessness is then described, the aim being to find a compromise between providing a true opinion about a patient's prognosis, and regard for the opposing factors described. (shrink)

This paper examines public meetings in the Netherlands where experts and officials interact with local residents on the human health effects of livestock farming. Using Conversation Analysis, we reveal a ‘weapon of the weak’: a practice by which the residents resist experts’ head start in information meetings. It is shown how residents draw on the given question-answer format to challenge experts and pursue an admission of, for example, methodological shortcomings. We show how the residents’ first question functions as a (...) ‘foot-in-the-door’, providing them with a strong basis for skepticism. By systematically challenging the expert responses, the residents exploit the interaction’s sequential organization, with the effect that the goal becomes them being convinced rather than being informed. Consequently, the withholding of consent becomes the residents’ ‘weapon’. Finally, we argue that in an age where expertise is increasingly contested, it is crucial to understand how, and to what end, this contestation may occur. (shrink)

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 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 , because of deepseated medical and societal reluctance to accept that intentionally withholding life prolonging treatment may equate with intentionally causing death. (shrink)

People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any (...) claims to be shielded frominformation about the self must compete onequal terms with claims based in the rights andinterests of others. In balancing the weightand importance of rival considerations aboutgiving or withholding information, if rightsclaims have any place, rights are more likelyto be defensible on the side of honestcommunication of information rather than indefence of ignorance. The right to free speechand the right to decline to acceptresponsibility to take decisions for othersimposed by those others seem to us moreplausible candidates for fully fledged rightsin this field than any purported right toignorance. Finally, and most importantly, ifthe right to autonomy is invoked, a properunderstanding of the distinction between claimsto liberty and claims to autonomy show that theprinciple of autonomy, as it is understood incontemporary social ethics and English law,supports the giving rather than the withholdingof information in most circumstances. (shrink)

The nocebo effect, a phenomenon whereby learning about the possible side effects of a medical treatment increases the likelihood that one will suffer these side effects, continues to challenge physicians and ethicists. If a physician fully informs her patient as to the potential side effects of a medicine that may produce nocebogenic effects, which is usually conceived of as being a requirement associated with the duty to respect autonomy, she risks increasing the likelihood that her patient will experience these side (...) effects and therefore suffer (unnecessary) harm, a violation of the duty of nonmaleficence. If, on the other hand, she intentionally withholds side effect information in an effort to protect her patient from suffering unnecessary harm from side effects, which is consistent with the duty of nonmaleficence, she violates the duty to respect patient autonomy. In this paper, the author discusses several previous attempts to deal with the nocebo effect and explains their weaknesses. He then proposes a means of managing the nocebo effect and argues that it does not share the weaknesses found in previous approaches. He concludes with a discussion of a simple, yet practical tool that might help clinicians manage the tension resulting from the nocebo effect. (shrink)

A dilemma exists when a doctor is faced with a child or young person who refuses medically indicated treatment. The Gillick case has been interpreted by many to mean that a child of sufficient age and intelligence could validly consent or refuse consent to treatment. Recent decisions of the Court of Appeal on a child's refusal of medical treatment have clouded the issue and undermined the spirit of the Gillick decision and the Children Act 1989. It is now the case (...) that a child patient whose competence is in doubt will be found rational if he or she accepts the proposal to treat but may be found incompetent if he or she disagrees. Practitioners are alerted to the anomalies now exhibited by the law on the issue of children's consent and refusal. The impact of the decisions from the perspectives of medicine, ethics, and the law are examined. Practitioners should review each case of child care carefully and in cases of doubt seek legal advice. (shrink)

In the last 25 years writing in bioethics, particularly in medical ethics, has generally claimed that action is ethically acceptable only if it receives informed consent from those affected. However, informed consent provides only limited justification, and may provide even less as new information technologies are used to store and handle personal data, including personal genetic data. The central philosophical weakness of relying on informed consent procedures for ethical justification is that consent is a propositional attitude, so referentially opaque: (...) consent is given to specific propositions describing limited aspects of a situation, and does not transfer even to closely related propositions. Assembling genetic data in databases creates additional difficulties for ethical justification. This is not because genetic information is intrinsically exceptional, but because the merger of genetic and information technologies make it possible to assemble massive quantities of complex information that defeat individuals' best efforts to grasp what is at stake, or to give or withhold informed consent. The future agenda for bioethics will need to take account of both these limitations of appeals to informed consent. (shrink)

BackgroundEthics consultations are established in contemporary health care. Informal ethics consultations often occur and are possibly beneficial, yet they have not been empirically studied. We sought to describe features of informal ethics consultations and to identify facilitators and disruptors of patient participation in such ethics consultations.MethodsWe used a mixed methods (quantitative and qualitative) evaluation design and conveniently sampled 64 sequential informal ethics consultations over a period of 3 years in two academic health care centers in one city in Canada. Data (...) were collected by the two participating ethicists. We used statistical description for the quantitative data and thematic analysis for the qualitative data.ResultsPatients participated in only two (3%) of the informal ethics consultations. Factors that disrupted patient participation in ethics consultations were related to patients’ issues (mental impairments), family issues (family withholding information from the patient), and team members’ issues (efficiency considerations).ConclusionInformal ethics consultations may be used for ethics capacity building of health care providers rather than for engagement with addressed patients. Further research on informal ethics consultations is required, including in different sites. (shrink)

Out of 288 Hong Kong cancer patients, 92.3% include themselves in decision-making, 71% prefer joint decision-making: with family, with doctor, with doctor plus family, with family minus doctor, and with doctor minus family. <5% want decision-making by “doctor-alone” and <1% desire decision-making by “family-alone”. Harmony, communication and responsibility are reasons for family participation. Most patients prefer “specialist” for information, followed by “family”, “friends”, and “GP”. Trust in doctors and prospects for controlling/curing disease are important factors in decision-making. Patients want (...) to participate and be listened to rather than make decisions. Doctors should not disclose information to family without patients’ permission, nor withhold information from patient [End Page 109] on family’s request. Only 25% of patients have discussed post-competent treatment with others and 7% have heard of Advance Directive ; 24% refuse to discuss it. After AD has been explained to them, 66% remain reluctant to sign one, preferring to leave oral instructions or appoint family as proxy decision-makers. The family’s decision-making role increases when patients become incompetent. The top reason for signing AD is to receive preferred post-competent treatments, and for not signing it, difficulty with making a prospective decision. The implications of these findings will be discussed. (shrink)

A lively exchange sparked by Ortmann and Hertwig's call to outlaw deception in psychological research was intensified by underlying differences in the meaning of deception. The conception held by Broder, who defended deception, would restrict research more than Ortmann and Hertwig's conception. Historically, a similar difference in conceptions has been embedded in the controversy over deception in research. The distinction between informational and relational views of deception elucidates this difference. In an informational view, giving false information, allowing false assumptions, (...) and withholding information are deceptive. In a relational view these failures to inform are not necessarily deceptive. Rather, relational criteria, including denial of right to the truth, betrayal of trust, and impairment of commerce with reality finally determine what is deceptive. Analyses reveal that fewer research procedures are deceptive on a relational view than on an informational view. Surveys of the Journal of Personality and Social Psychology correspondingly show that a lower percentage of studies are deceptive on the relational view applied in this analysis than on the informational view applied by Sieber, Iannuzzo, and Rodriguez. If restrictions on deception keep increasing, more studies will be vetoed on the currently salient informational view than would be vetoed on a relational view. (shrink)

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 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. (shrink)

Once common, therapeutic privilege—the practice whereby a physician withholds diagnostic or prognostic information from a patient intending to protect the patient—is now generally seen as unethical. However, instances of therapeutic privilege are common in some areas of clinical psychiatry. We describe therapeutic privilege in the context of borderline personality disorder, discuss the implications of diagnostic non-disclosure on integrated care and offer recommendations to promote diagnostic disclosure for this patient population. There are no data in this work.

ABSTRACT When misattributed paternity is discovered in the course of genetic testing, a genetic counselor is presented with a dilemma concerning whether to reveal this information to the clients. She is committed to treating the clients equally and enabling informed decision making, but disclosing the information may carry consequences for the woman that the counselor cannot judge in advance. A frequent suggestion aimed at avoiding this problem is to include the risk of discovering nonpaternity in the informed consent (...) process for counseling. In this paper I argue that such a move does not resolve the problem, because the conflict hinges on the interpretation of equality on which the counselor operates. Given the principles of genetic counseling, neither construal of equality yields a satisfactory solution to the conflict. In fact, I conclude that including nonpaternity in informed consent is not endorsed by either view, and we are still left with the question of what to do should nonpaternity be discovered. I suggest a compromise position concerning disclosure, involving revealing relevant genetic information but withholding nonpaternity when possible. (shrink)

Objectives: to assess physicians’ and patients’ views in Saudi Arabia towards involving the patient versus the family in the process of diagnosis disclosure and decision-making, and to compare them with views from the USA and Japan.Design: A self-completion questionnaire was translated to Arabic and validated.Participants: Physicians from different specialties and ranks and patients in a hospital or attending outpatient clinics from 6 different regions in KSA.Results: In the case of a patient with incurable cancer, 67% of doctors and 51% of (...) patients indicated that they would inform the patient in preference to the family of the diagnosis . Assuming the family already knew, 56% of doctors and 49% of patients would tell the patient even if family objected . However, in the case of HIV infection, 59% of physicians and 81% of patients would inform the family about HIV status without the patient’s consent . With regards to withholding ventilatory support, about 50% of doctors and over 60% of patients supported the use of mechanical ventilation in a patient with advanced cancer, regardless of the wishes of the patient or the family. Finally, the majority of doctors and patients were against assisted suicide.Conclusions: Although there was more recognition for a patient’s autonomy amongst physicians, most patients preferred a family centred model of care. Views towards information disclosure were midway between those of the USA and Japan. Distinctively, however, decisions regarding life prolonging therapy and assisted suicide were not influenced to a great extent by wishes of the patient or family, but more likely by religious beliefs. (shrink)

This article describes three kinds of information constraints in medical encounters that have not been discussed at length in the medical ethics literature: constraints from the concept of a disease, from the diffusion of medical innovation, and from withholding information. It describes how these limit the reliance rational people can justifiably put in their doctors, and even the reliance doctors can have on their own advice. It notes the implications of these constraints for the value of informed (...) consent, identifies several procedural steps that could increase the value of the latter and improve diffusion of innovation, and argues that recognition of these constraints should lead us to devise protections which intrude on but can improve these encounters. (shrink)

An obstacle to abortion exists in the form of abortion ‘counselling’ that discourages women from terminating their pregnancies. This counselling involves providing information about the procedure that tends to create feelings of guilt, anxiety and strong emotional reactions to the recognizable form of a human fetus. Instances of such counselling that involve false or misleading information are clearly unethical and do not prompt much philosophical reflection, but the prospect of truthful abortion counselling draws attention to a delicate issue (...) for healthcare professionals seeking to respect patient autonomy. This is the fact that even accurate information about abortion procedures can have intimidating effects on women seeking to terminate a pregnancy. Consequently, a dilemma arises regarding the information that one ought to provide to patients considering an abortion: on the one hand, the mere offering of certain types of information can lead to intimidation; on the other hand, withholding information that some patients would consider relevant to their decision-making is objectionably paternalistic on any standard account of the physician-patient relationship. This is an unsettling conclusion for the possibility of setting fixed professional guidelines regarding the counselling offered to women who are considering abortion. Thus, abortion ought to be viewed as an illuminating example of a procedure for which the process of securing informed consent ought to be highly context-sensitive and responsive to the needs of each individual patient. This result underscores the need for health care professionals to cultivate trusting relationships with patients and to develop finely tuned powers of practical judgment. (shrink)

Background Informed consent prior to nursing care procedures is an established principle which acknowledges the right of the patient to authorise what is done to him or her; consent prior to nursing care should not be assumed. Nursing care procedures have the potential to be unwanted by the patient and hence require an appropriate form of authorisation that takes into consideration the relationship between the nurse and patient and the ongoing nature of care delivery. Research question How do nurses obtain (...) consent from patients prior to nursing care?. Design Critical incident technique and the collection of critical happenings. Participants 17 participants who were all qualified nurses took part in in-depth interviews Ethical considerations Ethical approval was obtained from the university ethics committee. Findings Information giving is a key component prior to nursing care procedures. Nurses provide information to patients as a routine aspect of care delivery, and do so even when the patient is unable to communicate themselves. Whilst some participants described how information giving might be rushed or overlooked at times, it is clearly an established part of nursing care and is provided to ensure the patient knows what to expect when care is delivered. What is less clear is the extent to which information is given in order to seek the consent – rather than merely inform the patient – about nursing care. Conclusion Implied consent is often an appropriate way in which consent is obtained prior to nursing care procedures. It takes into account the ongoing care provision and the relationship that exists between the nurse and patient. However implied consent should not be assumed. Nurses need to ensure that information is given not only to inform the patient about a procedure but to enable the patient to give his or her consent and to find an alternative way forward if the patient withholds their consent. (shrink)

Background Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical decisions. In China, however, family members usually play a special role in the patient’s informed consent, which creates a unique “doctor-family-patient” model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter in such a model, as well as their attitudes to the family roles in informed consent. Methods A questionnaire was developed including general (...) demographic characteristics, the fulfillment of the obligation to fully inform, who will be informed, and the ethical dilemmas in decision-making. We recruited a total of 421 doctors to complete this questionnaire, of which 368 met the age requirements for this study. Cross tabulation and Pearson’s chi-squared test were used to analyze the differences between types of patients for categorical variables, and a p-value < 0.05 was considered statistically significant. Results Our data shows that only 20 doctors (5.40%) stated “informing the patient alone is sufficient” when it comes to informing patients of their serious conditions. The rest of the participants would ensure that the family was informed. When facing elderly patients with decision-making capacity, the data was statistically different (3.8%; P < 0.001) The primary reason for ensuring that family members be informed differs among the participants. In addition, when family members asked doctors to conceal the patient’s medical condition for the best interests of patients, 270 doctors (73.4%) would agree and cooperate with the family. A similar proportion (79.6%) would do so when it comes to elderly patients. Conclusions (1) Chinese doctors pay extra attention to informing the patient’s family, which may not be in the patient’s best interests. (2) Chinese doctors treat adult (but not elderly) patients and elderly patients differently when it comes to informing family members. (3) When family members request that doctors withhold information from patients “in the best interest of the patient,” the majority choose to comply with the request, although this may cause them distress. (shrink)

Objective: To evaluate feasibility of the guidelines of the Groupe Francophone de Réanimation et Urgence Pédiatriques for limitation of treatments in the paediatric intensive care unit .Design: A 2-year prospective survey.Setting: A 12-bed PICU at the Hôpital Jeanne de Flandre, Lille, France.Patients: Were included when limitation of treatments was expected.Results: Of 967 children admitted, 55 were included with a 2-day median delay. They were younger than others , had a higher paediatric risk of mortality score , and a higher paediatric (...) overall performance category score at admission ; all p<0.002. 34 children died. A limitation decision was made without meeting for 7 children who died: 6 received do-not-resuscitate orders and 1 received withholding decision. Decision-making meetings were organised for 31 children, and the following decisions were made: 12 DNROs , 4 withholding , with 14 withdrawing and 1 continuing treatment . After limitation, 21 children died and 10 survived . 13 procedures were interrupted because of death and 11 because of clinical improvement . Parents’ opinions were obtained after 4 family conferences , 3 days after inclusion. The first meeting was planned for 6 days after inclusion and held on the 7th day after inclusion; 80% of parents were immediately informed of the decision, which was implemented after half a day.Conclusions: GFRUPs procedure was applicable in most cases. The main difficulties were anticipating the correct date for the meeting and involving nurses in the procedure. Children for whom the procedure was interrupted because of clinical improvement and who survived in poor condition without a formal decision pointed out the need for medical criteria for questioning, which should systematically lead to a formal decision-making process. (shrink)

Recent research conducted in Australia shows that many oncologists withhold information about expensive unfunded drugs in what the authors of the study suggest is unacceptable medical paternalism. Surprised by the Australian results, we ran a version of the study in New Zealand and received very different results. While the percentages of clinicians who would prescribe the drugs described in the scenarios were very similar (73–99% in New Zealand and 72–94% in Australia depending on the scenario) the percentage who would (...) not discuss expensive unfunded drugs was substantially lower in New Zealand (6.4–11.1%) than it was in Australia (28–41%). This seems surprising given the substantial similarities between the two countries, and the extensive interaction between their medical professions. We use the contrast between the two studies to examine the generalisability of the Australian results, to identify influences on clinicians' decisions about what treatment information to give patients, and so the tendency towards medical paternalism and, more pragmatically, about how such decisions might be influenced. (shrink)

It is now widely accepted that experiments using human subjects without their informed consent is unethical. However, in certain kinds of experiment, such as placebo trials, informing participants about what will happen will invalidate research results. Some authors have suggested that the principle of informed consent has to be modified, others claim that ethical concerns can be set aside in the interest of advancing medical research. I argue that these attempts at justifying withholding information from participants are inadequate. (...) Drawing from a debate in epistemology between so-called internalists and externalists, I claim thatwe can know on a different level that we are not to know certain details about an experiment, and argue that consent given on the basis of such knowledge is informed consent and is ethically sufficient. (shrink)

It is now widely accepted that experiments using human subjects without their informed consent is unethical. However, in certain kinds of experiment, such as placebo trials, informing participants about what will happen will invalidate research results. Some authors have suggested that the principle of informed consent has to be modified, others claim that ethical concerns can be set aside in the interest of advancing medical research. I argue that these attempts at justifying withholding information from participants are inadequate. (...) Drawing from a debate in epistemology between so-called internalists and externalists, I claim thatwe can know on a different level that we are not to know certain details about an experiment, and argue that consent given on the basis of such knowledge is informed consent and is ethically sufficient. (shrink)

Infant A was born at term with an antenatal diagnosis of gastroschisis. His parents were well informed about the condition and understood that he would require surgery. However, at delivery, his bowel was found to be severely compromised. Infant A returned from theatre with only four centimeters of small bowel. This is physiologically devastating and easily qualifies as ultrashort bowel syndrome. Whilst the prognosis from ultrashort bowel syndrome is greatly improving, the condition continues to carry a significant risk of mortality (...) and morbidity, in part attributable to treatment itself. The cornerstone of management of USBS is provision of intravenous parenteral nutrition. This is not a physiologically normal route of nutrition; it is a medical treatment. Infant A’s parents questioned whether continuation of active treatment was appropriate. If a treatment is not in the patient’s best interests, then it can be argued it is not justified to administer it. Decisions about quality of life are intensely personal. Where there is a significant burden of treatment, even when there is a potential for increased survival, whether the course of treatment is in the child’s best interests must be taken with huge emphasis on the parental perspective and their family values. For well-informed, realistic parents who are welcoming of the full picture of information and implications of their decision, I argue that parents are best placed to make the decision for their child. Long-term PN for USBS may well be a medically encouraged treatment. However, it should not be medically mandated. (shrink)

Do not attempt cardiopulmonary resuscitation decisions (DNACPR) are considered good medical practice for those dying at the end of natural life. They avoid intrusive and inappropriate intervention. Historically, informing patients of these decisions was discretionary to avoid undue distress. Recent legal rulings have altered clinical guidance: disclosure is now all but obligatory. The basis for these legal judgments was respect for the patient’s autonomy as an expression of their human rights. Through critical analysis, this paper explores other bioethical considerations and (...) the potential harms if they are ignored. Arguably, disclosure of DNACPR status on its own will do little to improve patient experience. A focus on good communication with those identified as approaching end-of-life will facilitate personalized care. Discussions around DNACPR may still occur, but only if likely to be beneficial and at a patient-appropriate pace (not dictated by the need to activate the decision). (shrink)

In the first part of this article, we considered how Thandi, a 15-year-old girl, was treated when taken by her mother to their GP, Dr Randera. Dr Randera notified them that Thandi was pregnant, HIV positive, and had syphilis and herpes. Dr Randera also informed them that there was a substantial risk that the baby would be born HIV positive. Both Thandi and her mother wanted an abortion. However, Dr Randera, who was morally opposed to abortions, refused to provide the (...) service and did not refer Thandi to another doctor who would perform the abortion.The saga continues:. (shrink)

People freely disclose vast quantities of personal and personally identifiable information. The central question of this Meador Lecture in Morality is whether they have a moral (or ethical) obligation (or duty) to withhold information about themselves or otherwise to protect information about themselves from disclosure. Moreover, could protecting one’s own information privacy be called for by important moral virtues, as well as obligations or duties? Safeguarding others’ privacy is widely understood to be a responsibility of government, (...) business, and individuals. The “virtue” of fairness and the “duty” or “obligation” of respect for persons arguably ground other-regarding responsibilities of confidentiality and data security. But is anyone ethically required—not just prudentially advised—to protect his or her own privacy? If so, how might a requirement to protect one’s own privacy and to display ethical virtues of reserve, modesty and temperance properly influence everyday choices, public policy, or the law? I test the idea of an ethical mandate to protect one’s own privacy, while identifying the practical and philosophical problems that bear adversely on the case. I consider “conceptual” and “libertarian” objections to the view that each individual indeed has a moral obligation to safeguard his or her own privacy. Government and industry are not off the hook if privacy is a duty of self-care and self-respect: they have responsibilities and are freshly viewed as partners in moral agents’ quest for ethical goodness. (shrink)

Researchers, investigative journalists, community physicians, ethicists, and policy makers have voiced strong concerns about the integrity of medicine. Specifically, questions have been raised about the ways in which financial conflicts of interest (FCOI) in the biomedical field may be compromising the integrity of the scientific research process and thus compromising patient care by disseminating imbalanced or even inaccurate information (Angell 2004). Indeed, many of us are no longer surprised when we read about settlements made by pharmaceutical companies—some totaling hundreds (...) of millions of dollars—for withholding information on adverse side effects, overstating the efficacy of medications, or for aggressive .. (shrink)

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment (...) offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person. (shrink)

Objectives: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. Design: Systematic review of case reports. Findings: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of (...) class='Hi'>information/communication were involved in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). Conclusion: Problems related to information/communication may underlie a classic ethical problem. Identification of these “hidden” problems may be important for the analysis, and hence, the solution to the ethical dilemma. (shrink)

There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. (...) When communication was facilitated through the follow-up of a chance remark, the patient was able to avoid planned major surgery, with its attendant morbidity, and her high anxiety levels were much reduced. We believe this case highlights the need for an ongoing debate on how genetic services can best support patients and their families with disclosing relevant genetic information to other family members. (shrink)

: Arguments for efficiency in health care delivery have been used to support some level of withholding of information about available treatment options from patients in managed care systems. To the extent that such arguments prevail, they may necessitate changes in the established understanding of and commitment to informed consent and the disclosure of information to patients.

Konrad Lorenz does not view behaviors as innate; he does not even regard differences among behaviors (of different species) as innate. Rather, he construes information (about the environment to which the behavior is adapted) as the innate component of (some) behavior. His noted deprivation experiments are intended to withhold environmental sources of that information from the organism: should the organism nevertheless exhibit behavior evidencing possession of such information, then that information must be innate. Lorenz interprets this (...) conclusion to mean that the information is transmitted to the organism genetically, by way of a sort of blueprint in the genome.D.S. Lehrman quarrels with the figure of a blueprint:A blueprint is isomorphic with the structure that it represents…. It is not true that each structure and character in the phenotype is “represented” in a single gene or well defined groups of genes; it is not the case that each gene refers solely or even primarily, to a single structure or character; and it is not the case that the topographical or topological relationships among the genes are isomorphic with the structural or topographical relationships among phenotypic structures to which the genes refer. (Lehrman 1970, p. 34). (shrink)

While their strength, electrical, optical, or magnetic properties are expected to contribute a trillion dollars in global commerce before 2015, nanomaterials also appear to pose threats to human health and safety. Nanotoxicology is the study of these threats. Do nanomaterial benefits exceed their risks? Should all nanomaterials be regulated? Currently nanotoxicologists cannot help answer these questions because too little is known about nanomaterials, because their properties differ from those of bulk materials having the same chemical composition, and because they differ (...) so widely in their applications. Instead, this paper answers a preliminary ethical question: What nanotech policies are likely to contribute to society’s ability to give or withhold free informed consent to the potential risks associated with production and use of nanomaterials? This paper argues that at least four current policies appear to jeopardize the risk-disclosure condition that is required for informed consent. These are the funding problem, the conflict-of-interest problem, the labeling problem, and the extrapolation problem. Apart from future decisions on how to ethically make, use, and regulate nanomaterials, this paper argues that, at a minimum, these four policies must be modified. Government must spend greater monies on nanotoxicology; ensure independent nanotoxicology research; label consumer products containing nanomaterials; and avoid assuming that nanotoxicological properties are based merely on mass and chemical composition. Otherwise free informed consent to these new technologies and materials may be jeopardized. (shrink)

Informed consent began as a way of protecting physicians against legal liability. It did so by requiring physicians to provide their patients with sufficient information so that the patients could assent to or withhold consent from a proffered medical treatment. It was also intended to be an accurate expression of the patient's wishes. As such, it established the conditions by which a patient could be held responsible for his decisions concerning medical treatment.