Issues recognized as having ethical or moral components are becoming increasingly common, for society in general, the health care system and for general practitioner/family physicians in particular. Some of the peculiar problems for GP's relate to the provision of continuing, comprehensive, primary medical care to large numbers of individuals who provide extensive potential for conflict between all the involved elements: patients, physicians, families, consultants and societal attitudes. There is a need for more formal education programs.

Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods: Self-administered survey of patients at a tertiary care center. Results: Overall, 1169 respondents completed the survey (response rate = 59.8%). (...) Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient's treatment preferences. Conclusions: Contrary to current practice, 33.9% of respondents who had not designated a surrogate and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research that suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them. (shrink)

Bioethics is a subject far removed from the Chinese, even from many Chinese medical students and medical professionals. In-depth interviews with eighteen physicians, patients, and family members provided a deeper understanding of bioethical practices in contemporary China, especially with regard to the doctor-patient relationship (DPR) and informed consent. The Chinese model of doctor-family-patient relationship (DFPR), instead of DPR, is taken to reflect Chinese Confucian cultural commitments. An examination of the history of Chinese culture and the profession of medicine (...) in China is used to disclose the deep roots of these commitments. The author predicts that the DFPR model will further develop in China but that it will maintain its Chinese character. (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)

What should Japanese doctors do when asked by a patient for active voluntary euthanasia, when the family wants aggressive treatment to continue? In this paper, we present the results of a questionnaire survey of 366 Japanese doctors, who were asked how they would act in a hypothetical situation of this kind, and how they would justify their decision, 23% of respondents said they would act on the patient’s wishes, and provided reasons for their view; 54% said they (...) would not practice VE, either because they were opposed to VE as such, or because they believed that the wishes of the patient’s family should be respected.Analysis of these responses yielded the following results: Doctors willing to respect the patient’s wishes defended their decision by highlighting the significance of patient autonomy and the patient’s exclusive ownership of his or her life; doctors unwilling to act on the patient’s wishes fell into two broad categories — those who based their reasoning on the family’s objections, and those who provided other reasons for refusing VE. Respondents who said they would not comply with the patient’s wishes because of family objections provided the following kinds of rationale: doctors have serious responsibilities not only to the patient, but also to the patient’s family; the importance of the family-doctor relationship; fear of lawsuits for murder and related criminal offences; the need for agreement among all those affected by the decision, and the belief that the patient’s life is not his or her own, but the family’s. Respondents who gave non-family centred reasons for not complying with the patient’s wishes pointed to values such as the sanctity of life, or the importance of a natural deathIn the remainder of this paper, we discuss the implications of a family-centred approach to VE. (shrink)

Filial obligation and its implications have been little-debated in ethics. The basis of informed consent in libertarian positions may be challenged by inclusion of others beyond the immediate doctorpatient relationship. Some of the literature arguing for and against filial duty, including feminist literature, is presented as a backdrop to the argument that a patient’s family, and further, his or her community, contains the source of a broader perspective regarding decisions concerning his or her medical treatment. Communitarian models allow for (...) a medical decision to be owned by some or all stakeholders in patient outcomes. Although such a position undoubtedly confronts traditional notions of autonomy, it offers an alternative that may positively impact the practice of medicine by providing a more holistic treatment context. New models premised on shared decision-making will be presented as frameworks that may provide a theoretical basis for greater physician input into medical decisions that impact a patient’s family members and in more global terms, his or her community. (shrink)

Objective Futile treatment, which by definition cannot benefit a patient, is undesirable. This research investigated why doctors believe that treatment that they consider to be futile is sometimes provided at the end of a patient9s life. Design Semistructured in-depth interviews. Setting Three large tertiary public hospitals in Brisbane, Australia. Participants 96 doctors from emergency, intensive care, palliative care, oncology, renal medicine, internal medicine, respiratory medicine, surgery, cardiology, geriatric medicine and medical administration departments. Participants were recruited using purposive maximum (...) variation sampling. Results Doctors attributed the provision of futile treatment to a wide range of inter-related factors. One was the characteristics of treating doctors, including their orientation towards curative treatment, discomfort or inexperience with death and dying, concerns about legal risk and poor communication skills. Second, the attributes of the patient and family, including their requests or demands for further treatment, prognostic uncertainty and lack of information about patient wishes. Third, there were hospital factors including a high degree of specialisation, the availability of routine tests and interventions, and organisational barriers to diverting a patient from a curative to a palliative pathway. Doctors nominated family or patient request and doctors being locked into a curative role as the _main_ reasons for futile care. Conclusions Doctors believe that a range of factors contribute to the provision of futile treatment. A combination of strategies is necessary to reduce futile treatment, including better training for doctors who treat patients at the end of life, educating the community about the limits of medicine and the need to plan for death and dying, and structural reform at the hospital level. (shrink)

It is a terrible thing to let a child die against the deeply held and clearly expressed view of the child's parents. Yet it could be claimed that there are some conditions so burdensome that it may also be a terrible thing to deny a child the escape of death. The focus of this piece is on three ethical issues relating to withholding and withdrawal of treatment in a neonatal and paediatric context. The first is whether there are other interests (...) that should be considered as well as those of the child. The second is how we should think about the interests of the child. The third is a set of issues raised by cases where the medical team and the family reach different conclusions about what it is best to do. Reference is made to the recent cases of Charlotte Wyatt and Luke Winston-Jones. (shrink)

BackgroundThis study aimed to ask a sample of the general population about their preferences regarding doctors holding discretionary powers in relation to disclosing cancer diagnosis and prognosis.MethodsThe researchers mailed 443 questionnaires to registered voters in a ward of Tokyo which had a socio-demographic profile similar to greater Tokyo's average and received 246 responses (response rate 55.5%). We describe and analysed respondents' attitudes toward doctors and family members holding discretionary powers in relation to cancer diagnoses disclose.ResultsAmongst respondents who (...) wanted full disclosure about the diagnosis without delay, 117 (69.6 %) respondents agreed to follow the doctor's discretion, whilst 111 (66.1 %) respondents agreed to follow the family member's decision. For respondents who preferred to have the diagnosis and prognosis withheld, 59 (26.5 %) agreed to follow the doctor's decision, and 79 (35.3 %) of respondents agreed with following family member's wishes.ConclusionsThe greater proportion of respondents wants or permits disclosure of cancer diagnosis and prognosis. In patients who reveal negative attitudes toward being given a cancer disclosure directly, alternative options exist such as telling the family ahead of the patient or having a discussion of the cancer diagnosis with the patient together with the family. It is recommended that health professionals become more aware about the need to provide patients with their cancer diagnosis and prognosis in a variety of ways. (shrink)

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. (shrink)

Objectives To develop and test two educational programmes (interactive and passive) aimed at improving family doctors' (FD) prescribing practices and patient's knowledge and use of non-opioid analgesics (NOA).Methods The educational programmes were conducted in two family medicine clinics by using a three-stage approach: baseline evaluation, design, and implementation of educational activities, and post-programme evaluation. An interactive educational programme (IEP) was compared with a passive educational programme (PEP); both were participated by FDs and patients. The IEP for FDs (...) comprised of workshops, discussion groups, in-service training and guidelines, while for patients the IEP consisted of an interactive session with a video, leaflets and a discussion. The PEP consisted in delivering the guidelines to the FDs and the leaflets to patients. The effect of the programmes on the FDs was measured through the appropriateness of prescriptions and analysed using the differences-in-differences estimator (D-in-D), and on patients through changes in self-medication and in their knowledge about the proper use and adverse events by analysing the inter- and intra-group differences before and after the programmes.Results The IEP obtained better results to improve appropriate FDs prescription of NOA than PEP (D-in-D = 15%). Regarding the patients, the PEP group reached higher reduction of self-medication than the IEP group (13.4% vs. 9.1%); the knowledge of proper NOA use increased by 8.5% in both groups, whereas knowledge of NOA-related adverse events was better in the IEP (39.6%) than in the PEP group (9.2%).Conclusions The IEP was better to improve the doctors' abilities to prescribe NOAs, and both programmes improved patients' knowledge. (shrink)

The notion that the family is the unit of care for family doctors has been enigmatic and controversial. Yet systems theory and the biopsychosocial model that results when it is imported into medicine make the family system an indispensable and important component of family medicine. The challenge, therefore, is to provide a coherent, plausible account of the role of the family in family practice. Through an extended case presentation and commentary, we elaborate two (...) views of the family in family medicine — treating the patient in the family and treating the family in the patient — and defend both as appropriate foci for care by family doctors. The practical problem that arises when the family is introduced into health care is deciding when to concentrate on the family system. The moral problems that arise concern how extensively doctors may become involved in the personal lives of their patients and families. The patient-centered clinical method provides a strategy for handling both problems. Thus, making the family a focus of care in family medicine can be justified on theoretical, practical, and moral grounds. (shrink)

In Pakistan, as in many non‐Western cultures, decisions about a patient's health care are often made by the family or the doctor. For doctors educated in the West, the Pakistani approach requires striking a balance between preserving indigenous values and carving out room for patients to participate in their medical decisions.

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the (...) presumed will of patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

Background: Ethics consultation is used regularly by some doctors, whereas others are reluctant to use these services.Aim: To determine factors that may influence doctors to request or not request ethics consultation.Methods: A survey questionnaire was distributed to doctors on staff at the University Community Hospital in Tampa, Florida, USA. The responses to the questions on the survey were arranged in a Likert Scale, from strongly disagree, somewhat disagree, neither agree nor disagree, somewhat agree to strongly agree. Data (...) were analysed with the Wilcoxon test for group comparisons, the χ2 test to compare proportions and a logistic regression analysis.Results: Of the 186 surveys distributed, 121 were returned, giving a 65% response rate. Demographic data were similar between the groups saying yes and no . No statistically significant differences were observed between the user and non-user groups in terms of opinions about ethics consultants having extensive training in ethics or participating in ethics educational opportunities. On the issue “Ethics committee members or consultants cannot grasp the full picture from the outside”, the non-users were neutral, whereas the users somewhat disagreed . Even more significant was the difference between surgeons and non-surgeons, where, by logistic regression analysis, surgeons who believed that ethics consultants could not grasp the full picture from the outside were highly likely to not use . Non-users of ethics consultations thought that it was their responsibility to resolve issues with the patient or family . Users of ethics consultation believed in shared decision making or the importance of alternate points of view .Implications: Ethics consultations are used by doctors who believe in shared decision making. Doctors who did not use ethics consultation tended to think that it was their responsibility to resolve issues with patients and families and that they were already proficient in ethics. (shrink)

The NHS is an institution of great importance to everybody in the UK - not only doctors, nurses and other health professionals, but also to patients, carers and their families. However, problems within the NHS are regularly reported in the media and we are all anxious about waiting lists, about whether potential illnesses will be identified treated in time, about bleeding to death on trollies in corridors or being struck down by antibiotic-resistant superbugs. This engaging book aims to explore (...) and simplify the issues from both sides of the NHS - professionals and patients - and to improve mutual understanding of the problems, which will hopefully spark an open debate about the future of health service provision. The book uses an innovative fictionalized account of the experiences of 'case study' individuals in the healthcare system, including a GP with depression, a woman with MS and a hospital manager whose wife has cancer. This book will be essential and enjoyable reading for anyone workingwithin the healthcare system, as well as patients and their families and anyone interested in the workings of the NHS. (shrink)

El artículo constituye un acercamiento a las razones que sustentan la necesidad de elevar la calidad de la orientación a las familias de niños en la primera infancia y su objetivo consistió en capacitar al personal de la salud para desarrollar la orientación familiar en función de la prevención de desviaciones en el desarrollo en esta etapa. En él se aborda el rol que tiene la familia en la formación de los niños y la incidencia de los médicos y enfermeras (...) en su orientación; se encuentran reflexiones y comentarios sobre cómo elevar la calidad de la orientación para que la familia pueda desarrollar, en las condiciones de convivencia familiar, la prevención de desviaciones en el desarrollo mediante la realización de un proceso educativo de calidad. The article is an approach to the reasons that support the need to improve the quality of the guidance given to families of early childhood children and its objective consisted on training health staff to develop family guidance according to the prevention of deviations in development during this stage. It deals with the role family plays in children's education and the impact of doctors and nurses on its guidance. Thoughts and comments on how to improve the quality of guidance can also be found so that the family can develop, on family living conditions, the prevention of deviations in development through a quality educational process. (shrink)

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. (shrink)

This paper is based on the second Jack Pritchard Memorial Lecture given at the Queen's University of Belfast (1). The author describes his own personal response to having multiple sclerosis (MS), and then examines the psycho-social aspects of the disease in a wider context. The distress caused by the emotional difficulties associated with MS is emphasised, and in particular the strain placed on the doctor-patient relationship at the time of diagnosis. The physician's ability to cope with the needs of MS (...) families is explored, together with the importance of offering counselling. Also discussed is the ethical question of whether or not the patient should be told the complete truth. Patients with MS are seen as having a potential not only for helping each other, but also for being able to share in the management of their own health care. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced (...) by HCPs in these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

A number of bioethicists have been critical of the power of the family to “veto” a patient’s decision to posthumously donate her organs within opt-in systems of organ procurement. One major objection directed at the family veto is that when families veto the decision of their deceased family member, they do something wrong by violating or failing to respect the autonomy of that deceased family member. The goal of this paper is to make progress on answering (...) this objection. I do this in two stages. First, I argue that the most plausible interpretation of what happens when a person registers as an organ donor in an opt-in system is that she gives her consent to the state to posthumously remove her organs for transplantation purposes. Call this the Authorization Account. Second, given the Authorization Account, I argue by analogy that when families veto an individual’s decision to donate and the individual’s organs are not in the end removed, neither the doctors nor the family violate the individual’s autonomy in any morally objectionable sense. Call this the Nonremoval Thesis. I argue that since the Nonremoval Thesis is true, we do not violate or fail to respect the autonomy of registered donors when we fail to remove their organs because their family has objected. (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who (...) should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)

This paper discusses one of the most famous paintings on medical themes: The Doctor by Sir Luke Fildes (Fig. 1), which exemplifies how an ideal type of doctoring is construed from reality and from the views and expectations of both the public and doctors themselves. A close reading of The Doctor elucidates three fundamental conflicts in medicine: the first is between statistical efficiency in accordance with scales of morbidity and mortality and the personal devotion that every sick child or (...) suffering individual wants to receive; the second is between the doctor-dominated market and the patient-dominated market; and the third is between influential and rich doctors (“consultants”) and practitioners of family medicine (GPs).1 Fig. 1 Sir Luke Fildes, “The Doctor”, oil on canvas, 1891. With permission from The Tate Gallery, London. (shrink)

The first Dr. Lerner -- Super doctor -- Illness hits home -- The second Dr. Lerner -- Forging my own path -- Treating the whole patient -- Family practitioner -- Growing disillusionment -- Slowing down -- Epilogue.

Background Paternalism/overprotection limits communication between healthcare professionals and patients and does not promote shared therapeutic decision-making. In the global north, communication patterns have been regulated to promote autonomy, whereas in the global south, they reflect the physician’s personal choices. The goal of this study was to contribute to knowledge on the communication patterns used in clinical practice in Mexico and to identify the determinants that favour a doctor–patient relationship characterized by low paternalism/autonomy. Methods A self-report study on communication patterns in (...) a sample of 761 mental healthcare professionals in Central and Western Mexico was conducted. Multiple ordinal logistic regression models were used to analyse paternalism and associated factors. Results A high prevalence of paternalism was observed among mental health professionals in Mexico. The main determinants of low paternalism/autonomy were medical specialty and gender, with female physicians being more likely to explicitly share diagnoses and therapeutic strategies with patients and their families. A pattern of highly explicit communication was strongly associated with low paternalism/autonomy. Finally, a modifying effect of age strata on the association between communication pattern or specialty and low paternalism/autonomy was observed. Conclusions Among mental health professionals in Mexico, high paternalism prevailed. Gender, specialty, and a pattern of open communication were closely associated with low paternalism/autonomy. Strengthening health professionals’ competencies and promoting explicit communication could contribute to the transition towards more autonomist communication in clinical practice in Mexico. The ethical implications will need to be resolved in the near future. (shrink)

This paper reviews the results of a pilot study also conducted in the United States, Germany and Chile, the physician decision-making survey of Rothenberg et al. of the Volkswagen Foundation-Kennedy Institute project. The views of university physicians caring for adult patients at an academic medical center concerning advance directives were surveyed. Given a case, almost all respondents chose the option the doctor and family decide the treatment for the demented patients. The process used to decide which person to discuss (...) the treatment was a mixture of relatives and those caring for the patient, and those in the family who have the best ability to decide. The most important factor in making the decision was what is considered best for the patient, followed by the family will. (shrink)

This discussion paper is drawn from a qualitative research project comparing the effect of special and ordinary schools on the lives of children, young people and their families. Special schools are recommended by health professionals who seldom know how ineffective these schools are. We question the beneficence and justice of health professionals' advice on education for children with disabilities and other difficulties. Cooperation with local education authorities (LEAs) plays a considerable part in the work of community paediatricians, clinical medical officers, (...) therapists and other health professionals encountering children with "special needs". The "needs" range from physical disability and sensory impairment to learning difficulties and emotional or behavioural difficulties. This cooperation involves routine administrative problems, but it raises broad ethical issues too, particularly in respect of current tendencies in state schooling towards the integration or inclusion of these children in mainstream schools and classes. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on my way (...) to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

The aim of this study was to ascertain nurses' and doctors' perspectives on the practice of slow codes, which are cardiopulmonary resuscitative efforts that are intentionally performed too slowly for resuscitation to occur. A Heideggerian phenomenological study was conducted in 2005, during which data were gathered in the Republic of Ireland from three nurses and two doctors (via unstructured interviews) and analysed using Colaizzi's reductive procedure. Slow codes do occur in Ireland and are intended as beneficent acts. However, (...) slow codes were identified as pointless and undignified when intrusive measures were employed. There is a need for discussion on the topic of slow codes in Ireland, and for aids to cardiopulmonary resuscitation decision making to be developed, such as advance directives, communication training, clinical guidelines and an explanatory leaflet for patients and families. (shrink)

Background: Medical confidentiality underpins the doctor–patient relationship and ensures privacy so that intimate information can be exchanged to improve, preserve, and protect the health of the patient. The right to information applies to the patient alone, and, only if expressly desired, can it be extended to family members. However, it must be remembered that one of the primary tenets of family medicine is precisely that patient care occurs ideally within the context of the family. There may be, (...) then, certain occasions when difficulties will arise as to the extent of the information provided to family members.Objectives: This study aimed to describe family doctors’ attitudes to confidentiality and providing patient information to relatives as well as their justifications for sharing information.Method: A descriptive postal questionnaire was self-administered by family doctors.Results: Of 227 doctors, 95.1% provided information to a patient’s family and over a third disclosed information to others without prior patient consent.Conclusions: The findings reveal that family doctors should pay more attention to their patients’ rights to information, privacy, and confidentiality, and reflect very carefully on the fine balance between this and the occasional need for the support and collaboration of family members in delivery of care. Emphasis should be placed on ethics and legal problems during undergraduate education and in-service training of doctors. (shrink)

The “family rule” paper by Dr Foreman proposes a way of resolving the present uncertainty about medical law on children's consent and refusal. This commentary reviews how doctors' decisions are already well protected by English law and respected by the courts. The “family rule” appears to be likely only to complicate the already diffuse law on parental consent, and to weaken further the competent minor's position in cases of uncertainty and disagreement. It leaves the difficult questions about (...) defining and assessing children's competence unanswered. This commentary suggests that these questions would be better resolved through professionally determined standards of good practice that respect children and parents, rather than through rules or laws. (shrink)

The annual UK potential donor audit captures families’ reasons for not consenting to donation of their deceased family members’ organs . Given that many families’ refusals and vetoes are based on false beliefs, cognitive bias and misunderstanding, it is incumbent upon doctors, nurses and transplant coordinators to invest sufficient time to facilitate informed consent or authorization. While such families are distressed, organ donation rates could be substantially improved if they were made aware of any mistaken beliefs, using recently (...) suggested criteria for the ethical use of persuasion . This article examines some of the reasons for refusal of donation and suggests ways to help families make better decisions. It emerges that the use of persuasion is ethically essential in order to prevent families making decisions that they may come to regret. (shrink)

L’article s’intéresse aux hommes et aux femmes passés dans l’histoire à l’ombre de la figure « hermaphrodite ». Pour ce faire, il s’intéresse à eux dans le cadre familial, en cessant de les réduire à leurs particularités corporelles et génitales pour les replacer dans une perspective sociale. L’état hermaphrodite permet en effet d’interroger doublement la famille : d’une part parce qu’il brouille le jeu des projections identitaires habituellement à l’œuvre entre parents et enfants et entre membres de la fratrie, de (...) l’autre parce qu’il pose le problème majeur de l’infécondité et du mariage aussi bien pour celui ou celle qui en est victime que pour la cellule familiale dans son ensemble. L’extrême diversité des relations et des affects intrafamiliaux rencontrés rappelle que si l’hermaphrodisme a été puissamment structuré au xixe siècle en catégorie médicale, il ne peut être opérant en catégorie sociale. (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who (...) should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)