This article examines and contextualizes a health wish formula found at the opening of eight Roman official letters inscribed in Greek, one of Caesar and seven of Octavian. In each letter the sender mentions that he is well ‘with the army’ (μετὰ τοῦ στρατεύματος), hence the term ‘military’ health wish. The health wish was borrowed from Latin letters into Roman letters written in Greek by means of phraseological imitation. The formulation employs appropriate Koine Greek. (...) It was optional during the Republic for the wish to be used in letters either from or to a Roman holding imperium and commanding an army. Because Caesar and Octavian were in such positions, their use of the wish is conventional. The use of this health wish demonstrates that epistolographers working for Caesar and Octavian not only drafted letters that met the conventions of Hellenistic chanceries but also were proficient enough in the medium to incorporate Roman elements with effectiveness. Attestations of the military health wish declined during the Imperial period. The requirement that the sender or the recipient hold imperium would have restricted usage during the Republic but even more so under the Empire through administrative changes to the command of armies and the increasing centrality of the princeps. (shrink)

There has been a move in medicine towards patient-centred care, leading to more demands from patients for particular therapies and treatments, and for wish-fulfilling medicine: the use of medical services according to the patient's wishes to enhance their subjective functioning, appearance or health. In contrast to conventional medicine, this use of medical services is not needed from a medical point of view. Boundaries in wish-fulfilling medicine are partly set by a physician's decision to fulfil or decline a (...) patient's wish in practice. In order to develop a better understanding of how wish-fulfilling medicine occurs in practice in The Netherlands, a qualitative study (15 semistructured interviews and 1 focus group) was undertaken. The aim was to investigate the range and kind of arguments used by general practitioners and plastic surgeons in wish-fulfilling medicine. These groups represent the public funded realm of medicine as well as privately paid for services. Moreover, GPs and plastic surgeons can both be approached directly by patients in The Netherlands. The physicians studied raised many arguments that were expected: they used patient autonomy, risks and benefits, normality and justice to limit wish-fulfilling medicine. In addition, arguments new to this debate were uncovered, which were frequently used to justify compliance with a patient's request. Such arguments seem familiar from conventional medicine, including empathy, the patient–doctor relationship and reassurance. Moreover, certain arguments that play a significant role in the literature on wish-fulfilling medicine and enhancement were not mentioned, such as concepts of disease and the enhancement–treatment dichotomy and ‘suspect norms’. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 49-50, October 2012.

In this contribution, I wish to explore the potential of health technology assessment and ethics for increasing our capacity to pre-empt the shortcomings and undesired consequences of modern health care while maintaining its benefits. Central is the presumption that in case of some health problems this cannot be done unless we explicitly reconsider some features of the modern health care system, especially those related to its strong reliance on scientific rationality and the strong role played (...) by medical professionals.So as to both maintain the benefits of advanced health care and ensure that it produces less reason for concern, we need to reconsider our approach to rationality—and maybe even the way in which we build our health care system around that rationality. That is, we need to introduce an element of reflexivity. Two types of circumstances are being explored in which such reflexivity may prove worthwhile: controversies on side effects, and persistent problems encountered in optimising health care. Drawing on brief discussions of typical cases, we explore the potential of reflexive HTA and its methodical prerequisites.We conclude that ethicists may contribute to reflexive HTA, if they combine a hermeneutic—and often also participative—methodology with a solid understanding of the relation between the health problem under scrutiny and more general critique of the health care system. Insights from the areas of science and technology studies, as well as from social philosophy may be critical items in their tool kit. (shrink)

Relationships, jobs, and health behaviors-these are what New Year's resolutions are made of. Every year millions resolve to adopt a better diet, exercise more, become fit, or lose weight but few put into practice the health behaviors they aspire to. For those who successfully begin, the likelihood that they will maintain these habits is low. Healthcare professionals recognize the importance of these, and other, health behaviors but struggle to provide their patients with the tools necessary for successful (...) maintenance of their medical regimens. The thousands of research papers that exist on patient adherence and health behavior change can leave professionals overwhelmed. This book synthesizes the results from more than 50 years of empirical research, resulting in simple, powerful, and practical guidance for health professionals who want to know the most effective strategies for helping their clients to put long-term health-relevant behavior changes into practice. It advocates a straightforward 3-ingredient model: Before a person can change, they must know what change is necessary ; desire the change ; and then have the tools to achieve and maintain the change. This book is designed to be informative and compelling, but its numerous anecdotes and examples render it engaging and entertaining, as well. Written for a practitioners and students of medicine, chiropractic, osteopathy, nursing, health education, physician assistant programs, dentistry, clinical and health psychology, marriage and family counseling, social work, school psychology, and care administrators -- and for lay persons who wish to take an active role in their health, this book brings together major empirically-based findings within the field and provides succinct, evidence-based recommendations and strategies for using these findings to make real changes. (shrink)

Herbert, Dilinie How should health professionals respond if a patient nearing the end of life expresses a wish to hasten their death? To answer this question, this article draws upon peer‐reviewed literature, the practices of palliative care, and the experiences of two palliative care physicians, Associate Professor Natasha Michael and Associate Professor Mark Boughey. The expression of a wish to hasten death does not necessarily imply a genuine desire to hasten death or to be helped to die. (...) To the contrary, almost always this means that the patient has been overwhelmed by one or more serious concerns. While inadequate pain relief may be one such factor, more typically these concerns are social and spiritual, such as loneliness, social isolation, feeling oneself to be a burden on others, hopelessness, and fears about the process of dying. If a patient expresses a wish to hasten death, health professionals should therefore discuss with them the reasons for this request, and then devise and effectively communicate an individualised care plan which begins to address these concerns. (shrink)

There are various grounds on which one may wish to distinguish a right to health care from a right to health. In this article, I review some old grounds before introducing some new grounds. But my central task is to argue that separating a right to health care from a right to health has objectionable consequences. I offer two main objections. The domestic objection is that separating the two rights prevents the state from fulfilling its (...) duty to maximise the health it provides each citizen from its fixed health budget. The international objection is that separating a human right to health care fails the moral requirement that, for any given moral human right, the substance to which any two right-holders are entitled be of an equal standard. (shrink)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers (...) need to understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (shrink)

When clinical services aspire to quality improvement, creative and innovative approaches to old problems are needed to drive such change. Whilst new ef orts should be applauded, information on this topic can be somewhat grey from an ethical and research point of view. Within the mental health profession there is currently an expectation to routinely evaluate care and disseminate i ndings. The notion of service enhancements under the guise of routine practice is an interesting and untested ethical issue. Should (...) clinical innovation continue to enjoy such impunity as patient autonomy is often compromised as they are often compelled to accept treatment under the coercion of mental health legislation? We believe that it should not. All involvement in any form of research is voluntary, thus patients should also have the right to decline participation in quality projects if they wish to do so. (shrink)

The risk of transmission of HIV or hepatitis B from infectious health care workers to patients is low. However, inadvertent exposure causes great concern amongst patients of an infected health care worker.The patients of a Scottish dentist diagnosed hepatitis B e antigen positive were informed by letter of their exposure. A sample of patients was sent a postal questionnaire. Most respondents reported feeling anxious on receiving the letter but almost all thought patients should always be informed following treatment (...) by an infectious health care worker, although the risk was very small.We discuss clinical and ethical factors relating to informing patients following exposure to an infectious health care worker. We suggest that a balance should be struck between patients' wishes to know of risks to which they have been exposed, however small, and the professional view that when risks are negligible, patients need not be informed. (shrink)

There is an increasing tendency for administrators and government to expect both the health services and the education service to 'show results' for the investment of public money in them. One response to this has been the growing commitment to 'health promotion', where measurable objectives may be set in terms of desired behaviour (stopping smoking, breast self-examination, child immunisation etc) and where evaluation can be made on the evidence of statistical improvement. Health workers use the term 'promotion' (...) in a variety of ways which seem to be as confusing to them as they are to their clients --the general public. Since successful promotion is likely to depend on the 'hard sell' (and since the methodology and aims of this may be incompatible with those of health education) this paper looks at some of the questions which the customer might wish to ask the salesman before deciding whether or not to buy. (shrink)

BackgroundLiterature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. Aim(1) Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; (2) explore which factors within domains of vulnerability (physical, cognitive, social and psychological) are associated with a current (...) class='Hi'>wish to die; (3) assess how many middle-aged and older adults with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems.MethodsData of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study (1563 Dutch middle-aged and older adults aged between 57 and 99 years), obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems.ResultsN = 62 participants (4.0%) had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear.ConclusionA small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish to die is multi-faceted. There is still a need for more knowledge, such as insight in to what extent suffering stemming from the medical classifiable disease contributes to the development of the wish to die. (shrink)

Several countries have implemented COVID-19 health passes or certificates to promote a safer return to in-person social activities. These passes have been proposed as a way to prove that someone has been vaccinated, has recovered from the disease, or has negative results on a diagnostic test. However, many people have questioned their ethical justification. This article presents some practical and ethical problems to consider in the event of wishing to implement these passes. Among the former, it is questioned how (...) accurate diagnostic tests are as a means of ensuring that a person is not contagious, whether vaccination guarantees immunity, the fact that health passes can be forged, whether they encourage vaccination, and the problem that there is no universally recognized health pass. Among the ethical issues, it is discussed whether health passes promote discrimination and inequality and whether they violate rights to privacy and freedom. It is concluded that health passes have enough ethical justification to be implemented. (shrink)

Edited by four leading members of the new generation of medical and healthcare ethicists working in the UK, respected worldwide for their work in medical ethics, Principles of Health Care Ethics, Second Edition_is a standard resource for students, professionals, and academics wishing to understand current and future issues in healthcare ethics. With a distinguished international panel of contributors working at the leading edge of academia, this volume presents a comprehensive guide to the field, with state of the art introductions (...) to the wide range of topics in modern healthcare ethics, from consent to human rights, from utilitarianism to feminism, from the doctor-patient relationship to xenotransplantation. This volume is the Second Edition of the highly successful work edited by Professor Raanan Gillon, Emeritus Professor of Medical Ethics at Imperial College London and former editor of the Journal of Medical Ethics, the leading journal in this field. Developments from the First Edition include:_ The focus on ‘Four Principles Method’ is relaxed to cover more different methods in health care ethics. More material on new medical technologies is included, the coverage of issues on the doctor/patient relationship is expanded, and material on ethics and public health is brought together into a new section. (shrink)

There is a growing tendency for medicine to be used not to prevent or heal illnesses, but to fulfil individual personal wishes such as wishes for enhanced work performance, better social skills, children with specific characteristics, stress relief, a certain appearance or a better sex life. While recognizing that the subject of wish-fulfilling medicine may vary greatly and that it may employ very different techniques, this article argues that wish-fulfilling medicine can be described as a cohesive phenomenon with (...) distinctive features. Following a few examples of well established wish-fulfilling medical practices and a brief definition of the phenomenon, both theoretical aspects and ethical implications of such practices are discussed and the question is raised how wish-fulfilling medicine should be evaluated from an ethical point of view. It is concluded that modern medicine is currently ill equipped to provide reasons why wish-fulfilling medicine should be banned or discouraged. The phenomenon of wish-fulfilling medicine serves as a prime example of the vagueness of the descriptive and the lack of decisive orientation of the normative categories employed in modern medicine. (shrink)

In this paper, I consider what kind of normative work might be done by speaking of ecosystems utilising a 'medical' vocabulary – drawing, that is, on such notions as 'health', 'disease', and 'illness'. Some writers attracted to this mode of expression have been rather modest about what they think it might purchase. I wish to be bolder. Drawing on the idea of 'thick' evaluative concepts as discussed by McDowell, Williams and Taylor, and resorting to a phenomenological argument for (...) a kind of moral realism, I argue that the project of developing a robust understanding of the moral significance of recognising the health or illness of ecosystems is definitely a starter. (shrink)

Tännsjö’s book Setting Health-Care Priorities defends the view that there are three main normative theories in the domain of distributive justice, and that these theories are both highly plausible in themselves, and practically convergent in their normative conclusions. All three theories point to a somewhat radical departure from the present distribution of medical resources: in particular, they suggest redirecting resources from marginal life extension to the care of mentally ill patients. In this paper I wish to argue, firstly, (...) that prioritarianism should not be considered as an amendment to utilitarianism, as it is in Tännsjö’s view, but as a distinctive fourth option. This can best be appreciated if we focus on a reading of the theory that emphasizes its derivation from egalitarianism and its attempt to develop an intermediate approach between utilitarian and egalitarian intuitions. Secondly, in response to Tännsjö’s central objection to prioritarianism, I will argue that the theory does not apply in intrapersonal cases but is only relevant for decisions regarding the interpersonal distribution of benefits. Finally, I will suggest that a practical convergence of the four theories on specific issues such as artificial reproduction or mood enhancement is far less likely than Tännsjö seems to believe. (shrink)

New testamentThe British Medical Association recently published guidance from its medical ethics committee on decision making concerning the withholding and withdrawing of life-prolonging medical treatment.1 It is a very thoughtful and thought-provoking document, the ramifications of which go far beyond the immediate situation it is addressing. The authors are clearly well aware of this. When considering a doctor's ethical response to “contemporaneous requests for life-prolonging treatment” made by competent patients, the committee observes:“Although patients' wishes should always be discussed with them, (...) the fact that a patient has requested a particular treatment does not mean that it must always be provided.”2They advance four propositions in support of this conclusion, namely: Health professionals are not obliged to provide any treatment which cannot produce the desired benefit”.3 There is no obligation to provide any treatment which is clearly contrary to an individual's health interests. A life-prolonging treatment may, for example, prolong life but result in severe pain or loss of function so that overall it produces severe harm to the patient”.4 Except in an emergency situation, doctors are not obliged to treat contrary to their conscience ”.4 Where resources are limited, it is inevitable that some patients will not receive all of the treatment they request even though such treatment could be potentially beneficial to them”.4Towards the end of their commentary on the last of these propositions, they observe:“Health professionals have an ethical duty to make the best use of the available resources and this means that hard decisions must be made. Whilst this is a much broader issue than can be discussed thoroughly in this document, it is clear that doctors are not obliged to comply with patients' requests for treatment when they …. (shrink)

Reforms in the German health care system in the attempt to bring more competition into health care have increased the sovereignty of the insured or patients, who have finally been allowed to make choices. “The start of a reorientation of the statutory health insurance system and hospital care are to be welcomed as first steps towards a supply of health services that reflects individual preferences.” The authors can be contacted care of Prof. Dr. Oberender at Rechts‐ (...) und Wirtschafswissenschaftliche Fakulät, Universität Bayreuth, 95440 Bayreuth, Germany, where Dr Oberender is Professor in the Faculty of Law and Economics, and Ansgar Hebborn is his Assistant. The authors wish to record their gratitude to Jan Hacker for translating this article. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Public Health Ethics: Health by the NumbersMartina Darragh (bio) and Pat Milmoe McCarrick (bio)Hippocrates had nothing to say about public health. Rather, the idea that a government should protect its citizens from disease by maintaining sanitary conditions has its origin in Renaissance humanities texts, and the notion that physicians have public health responsibilities emerged in the works of such Enlightenment authors as Johann Peter Frank, (...) Benjamin Rush, and John Gregory (II, Coughlin and Beauchamp 1996). When the spread of infectious diseases such as typhoid and cholera accompanied the growth of the Industrial Revolution, England was the first to respond by passing the Public Health Act of 1848. The motivation for this reform was not based in humanitarian concerns but in the realization that unsanitary conditions were costly to industry. “... [The] founders of the public health movement were guided by nineteenth century utilitarian moral theories... the greatest good for the greatest number... accompanied by a growing appreciation for the innate value and dignity of mankind... however, the rights and autonomy of individuals have not always been respected in pursuing these important objectives” (I, Coughlin 1995, p. 1).Public health projects have dramatically improved global health status. One measure of their success is that “... most poor people now live longer, on average, than the wealthiest people a century ago” (I, Beaglehole and Bonita 1997, p. 13) These projects are not limited to such activities as disinfecting sewers. “Public health is what we, as a society, do to collectively assure the conditions in which people can be healthy. This requires that continuing and emerging threats to the health of the public be successfully countered. These threats include immediate crises, such as the AIDS epidemic; enduring problems, such as injuries and chronic illness; and impending crises foreshadowed by such developments as the toxic by-products of a modern economy” (I, Institute of Medicine (IOM) 1988, p. 1) The practice of public health has embraced this IOM challenge and includes the subspecialties of epidemiology, health promotion and education, public health administration, international health, maternal and child health, biostatistics, environmental health, and nutrition. This annotated bibliography focuses on epidemiology, [End Page 339] health promotion and education, and public health administration, and includes a wide variety of opinions on each topic.EpidemiologyAt first glance, it is hard to see what ethical issues could arise in population studies of the causes and control of illness. Disclosure of risk information in the clinical encounter is complicated by issues of uncertainty with regard to the data itself. Causation and causal inference may be affected by “wish bias,” leading to studies that use the same data but reach widely varying conclusions (II, Weed 1997). Given the complexity of the statistical calculations used to validate public health recommendations, and mass media’s portrayal of them, the public may be unintentionally deceived by population-based recommendations (V, Seedhouse 1997; II, Lupton 1995). With the addition of genetic screening, another layer of statistical complexity is added to this mix (VI, Stone and Steward 1996).Health Promotion and EducationIncreased life expectancy brought about by advances in public health has raised a new set of problems. With the realization that illness can be promoted in part by individual life-style choices, population-based recommendations about risk factors become important in the clinical encounter. This shift is not without difficulties; one author notes that he has yet to receive any risk information from his physicians, even when he asks “the experts” (V, Dugdale 1998). This may be due in part to the fact that “... public health lacks a vocabulary with which to speak about and identify commonalities among health problems experienced by very different populations” (IV, Mann 1997, p. 8). Furthermore, the mix of disciplines informing health promotion activities (sociology, psychology, recreation medicine, and the like) creates an illusion of shared ethics where none exists, which in turn leads to programs based on value systems that may not be meaningful for the populations they serve (V, Seedhouse 1997).Given these factors, a number of authors are skeptical of introducing public health measures into the clinical encounter. “We might do well to encourage people to live lives of modified hedonism so that they might... (shrink)

The recent legal dispute about medical treatment for a 19-year-old patient, Sudiksha Thirumalesh, (known initially by the Court of Protection as ‘ST’) in A NHS Trust versus ST & Ors (2023) raised several challenging ethical issues. While Sudiksha’s case bears similarities to other high-profile cases in England and Wales, there are key differences. Crucially, Sudiksha herself was part of the disagreement. She was alert, communicative and sought to advocate for herself. Furthermore, this case was framed in the courts as pivoting (...) not on considerations of best interests but on a determination of decisional capacity. Sudiksha was deemed to lack capacity because she did not believe her doctors’ view of her prognosis.While the legal questions in the case were central to a recent Court of Appeal decision (which overturned the original finding), in this commentary, we focus on the ethical questions therein. We start by describing Sudiksha’s court case and the initial judgment. We then offer an ethical analysis of the relationship between false beliefs, values and the ‘capacity’ to make decisions, arguing for a need for particular care when judging patients to lack capacity based purely on ‘false and fixed beliefs’. After briefly noting the legal basis for the appeal finding, we offer ethical implications for future cases. Although it appears that Sudiksha had decision-making capacity, this did not settle the ethical question of whether health professionals were obliged to continue treatment that they believed to have no prospect of success. (shrink)

The growing prevalence of obesity and related conditions such as Type II diabetes is held by many to be a major public health problem in developed countries, and increasingly in developing countries as well. If we wish to tackle this problem, it will be a major task. Individuals will have to change their consumption and exercise patterns, companies will have to improve the products they make and how they market them, nutrition experts and communities will have to redefine (...) what is acceptable and desirable in food practices and governments will have to lead and promote such societal-level changes in many different fields, including food policy, urban design, educational policies, agricultural subsidies and tax breaks, etc. This is all very difficult to achieve. In many people’s view, government action aiming at social change will be especially controversial and meet some resistance. New York …. (shrink)

How are we to make sense of madness and psychosis? For most of us the words conjure up images from television and newspapers of seemingly random, meaningless violence. It is something to be feared, something to be left to the experts. But is madness best thought of as a medical condition? Psychiatrists and the drug industry maintain that psychoses are brain disorders amenable to treatment with drugs, but is this actually so? There is no convincing evidence that the brain is (...) disordered in psychosis, yet governments across the world are investing huge sums of money on mental health services that take for granted the idea that psychosis is an illness to be treated with medication. Although some people who use mental health services find medication helpful, many do not, and resist the idea that their experiences are symptoms of illnesses like schizophrenia. Consequently they are forced into having treatment against their wishes. So, how do we make sense of this situation? Postpsychiatry addresses these questions. It involves an attempt to rethink some of the fundamental assumptions of mental health work, showing how recent developments in philosophy and ethics can help us to clarify some of the dilemmas and conflicts around different understandings of madness. Throughout, the authors examine the conflicting ways in which politicians, academics, and mental health professionals appear to understand madness, and contrast this with voices and experiences that are usually excluded - those of the people who use mental health services. They then examine the power of psychiatry to shape how we understand ourselves and our emotions, before considering some of the basic limitations of psychiatry as science to make madness meaningful. In the final section of the book they draw on evidence from service users and survivors, the humanities and anthropology, to point out a new direction for mental health practice. This new direction emphasises the importance of cultural contexts in understanding madness, placing ethics before technology in responding to madness, and minimising 'therapeutic' coercion. (shrink)

The free market theory has as its basis the assumption of equity. This equity is ascribed to both purchasers and providers in a perfectly balanced system so that there are seen to be no 'winners' or 'losers' in the market-place. The health system that is developing in the UK is structured as a managed market, but agency relationships between GPs and health authorities buffer the costing process of goods and therefore may be described as distorting the price. This (...) could also be distorting the ability of the users, who are the real purchasers, from exercising their economic freedom. They may also lose the autonomy to choose goods that suit their particular needs, and equally not to choose those services that they do not want or wish to pay for vicariously (i.e. that the common good is respected by both providers and purchasers). This assumes that users of the service know the level of choice that they have and that not only are providers protected at present by the practices of the purchasers but also entry into the market for new providers is severely curtailed. The exercise of true freedom of the market in economic terms is one of moral obliga tion to provide services that not only have a market value that is affordable and a require ment of the 'common good' but also are historically acceptable for social requirements (i.e. that the services are valued as fundamental tenets of the rights of individuals in soci ety). The expression of this need will therefore be utilitarian (i.e. the users of the services should benefit from them rather than the providers). (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making (...) and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life—young or old—cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the minor involved (...) must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient’s assumable ability to choose death over an agonizing existence. (shrink)

In The legal determinants of health: Harnessing the power of law for global health and sustainable development, Gostin et al. provide a sustained account of how law can and should be used as an instrument of health promotion. We pick up on the themes of this report with a specific focus of the importance of abortion for women’s sexual and reproductive health and the impact that particular ways of framing abortion in law can have on the (...) lives of women and girls. In this short comment, we wish to emphasize that abortion regulations need to move beyond frameworks based on narrow understandings of harm towards more progressive agendas that take into account the social determinants of health in order to reduce barriers to care. This contribution is particularly relevant to the Commission’s criticism that those ‘[l]aws that stigmatise or discriminate against marginalized populations are especially harmful and exacerbate health disparities’. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the (...) analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

Galasso calls for “the actualization of the public health potential of precision medicine….as the best realistic contribution to health equity” (Galasso 2024, 83). Unfortunately, this is wishful th...

Those whom the gods wish to destroy, they first make mad, says a Nigerian proverb. These words of wisdom re-echo in traditional approaches to mental health ethics in sub-Saharan Africa. Among many cultures in Nigeria, it is customary to subject persons with mental health illness, especially those who present with violent behavior, to physical restraint and beatings. The belief is that such subjugation could restore mental health in the early stages of madness. Physical restraint and beatings (...) only form a part of the healing process, as it also has communitarian cum spiritual aspects. The healing process is carried out by family members or community, who share in the life of the mentally ill person. Their... (shrink)

The widespread emergence of innumerable technologies within health care has complicated the choices facing caregivers and their patients. The escalation of knowledge and technical innovation has been accompanied by an erosion of moral and ethical consensus among health providers that is reflected in the abandonment of the Hippocratic Oath as the immutable bedrock of medical ethics. Ethical conflicts arise when the values of health professionals collide with the expressed wishes of patients or the dictates of regulatory bodies (...) and administrators. Increasing attempts by groups outside of the medical profession to limit freedom of conscience for health providers has raised concern and consternation among some health professionals. The personal and professional impact of health professionals surrendering freedom of conscience and participating in actions they deem malevolent or unethical has not been adequately studied and may not be inconsequential when considering the recognized impact of other circumstances of coerced complicity. We argue that the distinction between the two ways that freedom of conscience is exercised (avoiding a perceived evil and seeking a perceived good) provides a rational basis for a principled limitation of this fundamental freedom. (shrink)

In this article we wish to establishthe relationshipbetween discourse, as a special formofcommunicative action, and the humanization in health care organizations. This whole discussion has strong references in Jürgen Habermas´s theories of communicative action and discourse. It starts with thecriticismof thebureaucratizationof health organizations done bymedicalrationalization, which createsa profoundasymmetry betweenhealth professionals andpatients. This inequalityimplieslossof the human dimension in health care. It focuses onthe issue of powerand the possibilityofrational reconstructionof relationsfrom adiscourse ethics. Itdiscussesthe issueof health policiesin the (...) public sphere. We wonderhowthe average citizencaneffectively participate inthediscussion ofthese policies, if theydo not havethe expertiseof physicians. Thesame asymmetrybetween health professionals and patientsis reproducedin the public sphere, creating a political issue in democratic societies. Arational reconstructionof a health policyrequiresa formofdeliberativedecision. The lossof the human dimension in health careand the healthpolicy decision-makingproblemseem tofindspaceinthecomplexity ofhealth care. The discussion about quality involves consideringthe indicators producedbyspecializedmedical knowledge, however,theyrequirethe mediationof interests ofhealthcare professionalsand patients.This diversityof perspectivesrequiresprocedures thatprovideunderstandingbetween the partiesfor the construction ofrationalagreementsfor common action. These procedures progress betweenethics and politics. We believe thatthese procedures shouldbe based on discourse. LINGUAGEM, DISCURSO E HUMANISMO NAS ORGANIZAÇÕES DE SAÚDE ResumoNeste artigo pretende-se estabelecer relações entre o discurso, como uma forma especial de ação comunicativa, e a humanização nas organizações de cuidados com a saúde. A argumentação referencia-se fortemente nas teorias da ação da ação comunicativa e do discurso de Jürgen Habermas. Inicia-se com uma abordagem crítica da burocratização das organizações de saúde pela racionalização médica, criando uma profunda assimetria entre profissionais e pacientes. Esta desigualdade implica na perda da dimensão humana no cuidado com a saúde. Focaliza-se a questão do poder e na possibilidade de uma reconstrução racional das relações a partir da ética do discurso. Discute a questão das políticas de saúde na esfera pública. Indaga-se como o cidadão médio pode efetivamente participar na discussão destas políticas uma vez que não possui a expertise dos médicos. A mesma assimetria entre profissionais de saúde e pacientes se reproduz na esfera pública, constituindo uma questão política em sociedades democráticas. Uma reconstrução da política de saúde requer uma forma deliberativa de decisão. A perda da dimensão humana no cuidado com a saúde e o problema das decisões em política de saúde parecem encontrar espaço na complexidade dos cuidado com a saúde. As discussões sobre qualidade devem ter em conta os indicadores produzidos pelo conhecimento médico especializado, entretanto, requerem mediações ente os interesses dos profissionais de saúde e dos pacientes. A diversidade de perspectivas requere procedimentos que provenham entendimento entre as partes para construção racional de argumentos para ação em comum. Estes procedimentos avançam entre ética e política. Acredita-se que estes procedimentos podem ser baseados no discurso. (shrink)

Patient families sometimes ask health professionals, ‘What would you do if this were your family member?’ The purpose of this paper is to examine appropriate responses to this Question. Health professionals may say, ‘It all depends on the patient's wishes’, or ‘I don't know what is best, because my family is different from yours in many ways’. Some may believe that the most favourable course of action is the same regardless of who the patient is and explain this (...) to the patient's family, while others may refuse to answer the Question saying it is personal, or argue that such a Question should neither be asked nor answered because it is unreasonable and unprofessional to do so. We believe that, in principle, health professionals should give an honest answer as to what they would do if the patient was their family member, recognising and empathising with the fact that the patient's family is in a difficult and vulnerable position, and that their circumstances forced them to ask such a Question. Moreover, personal and emotional views of health professionals regarding treatment options may help the patient's family make important decisions. An honest answer will help strengthen the trusting relationship between health professionals and the patient's family and support their decision-making. (shrink)

It is well-known that a sense of belonging is crucial in relation to gaining and maintaining sound mental health. Work is also known to be an essential aspect of recovery from mental health problems. However, there is scant knowledge of what a sense of belonging in the workplace represents. This study explores the nature and meaning of a sense of belonging in the workplace as experienced by persons struggling with mental health issues.Using a descriptive phenomenological methodology, sixteen (...) descriptions of the lived experience of belonging in the workplace were analyzed. The analysis reveals that the experience of belonging in the workplace is restricted and fragile until the moment one becomes accepted, but grows stronger and more resilient as one chooses how one wants to participate. Nonetheless, the sense of belonging is haunted by mixed emotions and ambivalence between the wish to be taken care of and the longing for professional appreciation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Against Their Wishes: The Gift of a GoodbyeAustin MorrisThink back, if you can, to when you were once a 25-year-old young adult. Think back to your hopes, your dreams, your overall plan and expectations for life and where you think you would end up one day. Now imagine facing your own mortality; life as you have known rapidly approaching an end that you were not able to prepare for (...) prior to its arrival. Imagine the fear, the uncertainty; imagine how your family and friends would feel surrounding you on your deathbed.The above was the reality for one of my patients. He was a 25-year-old gentleman rapidly approaching the end of his life. As a physician, it is our duty to do no harm and provide the best standard of care to each patient we see on a day-to-day basis. In some cases, what truly constitutes the best standard of care is uncertain, and oftentimes, we find ourselves stepping out of medicine and into the world of medical ethics. Upon arrival to the hospital, this patient’s initial decision was to be made full “Do Not Resuscitate” and “Do Not Intubate.” This decision was made while the patient was suffering mild symptoms of alcohol withdrawal. He was evaluated by psychiatry, we reviewed every medical note we had to assess for signs of depression, and ultimately he was deemed competent, demonstrating a mental capacity to understand his current healthcare status and the ramifications of the decision he was making.As a 28-year-old resident physician, my experience with medicine may be limited relative to those surrounding me in the profession. My intuition, though, has been sharpened with numerous experiences over the last two years dealing with patients driven into depression following the COVID pandemic, finding solace in the use of hard liquor, and subsequently suffering the side-effects of its toxicity. This 25-year-old patient, upon initial assessment, appeared closer to the age of 40; his eyes were icteric, his skin was profoundly jaundiced, and his abdomen distended visibly underneath his hospital gown and blanket. His mother sat at his bedside, fully unaware of the severity of his condition. The patient was angry, questioning why he was admitted and shouting at his mom for forcing him to be evaluated. My initial review of his chart was as in-depth as it could be for having such a limited health history available. Despite that, I could see the path that this would head down over the next 48 hours. Withdrawal was inevitable. The likelihood of needing intubation within the next 24 hours was extremely high. The only bit of uncertainty I was left with was whether or not this patient would survive following these anticipated life-saving interventions. I had anticipated that this would be a long, tenuous, and challenging admission requiring the highest level of care both for myself as a physician and through the healthcare system within our hospital as a whole. But what I did not anticipate was discussing whether or not a 25-year-old should be a DNR/DNI patient.By day 2 of the patient’s admission, evaluation by hepatology confirmed my suspicions; this patient was suffering from fulminant liver failure, and without a transplant, he would surely die. However, we were not able to have this discussion with the patient, as his withdrawal had progressed to the point of disorientation and agitation. The brief episodes of consciousness were spaced through long [End Page 5] periods of unresponsiveness. Prior to this, as mentioned above, the patient was alert and oriented x3 and had expressed, in no uncertain terms, a DNR/DNI status; the confounding factor, though, was during his time awake, he had not been evaluated by hepatology and had not been diagnosed with fulminant liver failure. As such, the prospect of a liver transplant, which would provide life-saving treatment and potentially a path back to life as this patient knew it, had not existed then. Knowing that my time was limited before the patient would fail to protect his airway and would inevitably die, I reached back out to the patient’s mother... (shrink)

OBJECTIVES: The subject of patient self-determination in health care has gained broad interest because of the increasing number of incompetent patients. In an attempt to solve the problems related to doctors' decision making in such circumstances, advance directives have been developed. The purpose of this study was to examine relationships between public attitudes towards patient autonomy and advance directives. SUBJECTS AND MAIN OUTCOME MEASURES: A stratified random sample of 600 adults in northern Sweden was surveyed by a questionnaire with (...) a response rate of 78.2%. The subjects were asked about their wish for control of their health care, their concerns about health care, their treatment preferences in a life-threatening situation (both reversible and irreversible), and their attitudes towards the application of advance directives. RESULTS: Numerous relationships between various aspects of self-determination in health care (desire for control, fears of over-treatment, and choice of treatment level) in general and advance directives, in particular, were found. Those who wanted to have a say in their health care (about 94%) also mainly supported the use of an advance directive. CONCLUSIONS: The fact that almost 30% of the respondents were undecided concerning their personal use of advance directives points to a lack of knowledge and to the necessity of education of the public on these issues. (shrink)

Die Fortschritte in der Psychopharmakologie führen zu einem immer breiteren Angebot an Substanzen zur Verbesserung der Stimmung, des Gedächtnisses oder der exekutiven Funktionen. Dieses Angebot trifft auf die Wünsche und Bedürfnisse vieler Menschen, ihre mentalen Leistungen und Zustände zu verbessern. Wie sollte die Medizin mit diesen Wünschen umgehen? An welchen Kriterien sollte sich insbesondere der ärztliche Entscheidungsprozess orientieren? Im Folgenden soll gezeigt werden, dass sich aus einer „Treatment-enhancement-Unterscheidung“, einem Krankheits- oder Normalitätsbegriff oder einem bestimmten Medizinkonzept keine zielführenden normativen Kriterien für (...) diesen Entscheidungsprozess ableiten lassen. Demgegenüber wird ein Entscheidungsmodell entwickelt, das auf traditionellen Kriterien ärztlichen Handelns beruht: dem Kriterium des Wohlergehens, des Nichtschadens und der Autonomie. Mit diesem Modell soll zugleich ein neues Konzept einer „wunscherfüllenden Medizin“ vorgeschlagen werden: eine subjektive Medizin mit ärztlichem Empfehlungs- und Vetovorbehalt. (shrink)

This paper addresses sedation at the end of life. The use of sedation is often seen as a last resort for patients whose death is imminent and whose symptoms cannot be treated in any other way. This paper asks how to assess constellations, where patients want to hasten their death by refusing (further) life-sustaining treatment, or by voluntarily stopping eating and drinking (VSED), and wish this to be accompanied by sedation. We argue that sedation is ethically and legally permissible (...) not only as a last resort, but in principle. Furthermore, we see a clear obligation to sedate in cases of acute suffering of any kind, while in some other constellations individual physicians’ objections to supposedly premature or unnecessary sedation must be respected. Such possible reservations should, however, be reconsidered in light of the fundamental ethical and legal right to a self-determined death. In general, sedation practices should be less restrictive, and existing guidelines should be revised accordingly. -/- ----- Dieser Beitrag befasst sich mit Sedierungen von Patienten am Lebensende. In der Regel werden Sedierungen nur als ultima ratio vorgenommen, wenn die Betroffenen dem Tod bereits nahe sind und Leidenssymptome aufweisen, die anders nicht zu lindern sind. Doch wie sind Fälle zu beurteilen, in denen Patienten sich selbstbestimmt für einen Behandlungs- oder einen Flüssigkeits‑/Nahrungsverzicht entscheiden, um zu sterben, und dafür eine „Begleitsedierung“ erbitten oder erwarten – auch wenn dies aus medizinischer Sicht über eine Anwendung von Sedierung als letztes Mittel hinausgeht? Wir argumentieren hier dafür, dass Zusage wie Anwendung einer Begleitsedierung ethisch und rechtlich nicht nur als ultima ratio, sondern grundsätzlich zulässig sind. Eine klare Verpflichtung zu sedieren sehen wir darüber hinaus bei akutem Leiden jeder Art, während in einigen anderen Konstellationen Vorbehalte individueller Ärzte gegenüber vermeintlich verfrühten oder unnötigen Sedierungen respektiert werden müssen. Vor dem Hintergrund des ethischen und juridischen Grundrechts auf ein selbstbestimmtes Sterben plädieren wir allerdings dafür, auch solche Vorbehalte zu überdenken. Die medizinischen Leitlinien sollten entsprechend überarbeitet werden. (shrink)

To avoid contagion, we need information about the health status of those whom we engage with. This is especially important when we have cause for concern that the other is indeed sick, such as is the case during the world-wide outbreak of the coronavirus in 2020. In three studies, one conducted several years before the pandemic, and two during the pandemic, we showed that facial expressions of emotions are used as signals of health status. Specifically, happy expressers are (...) perceived as healthier than expressers showing negative emotions or neutrality (Studies 1–3), whereas anger was interpreted as a signal of ill health (Study 3). Importantly, however, facial expressions affected health perception only when there was a prior reason to suspect ill health. This was the case for older expressers before and after the pandemic for whom age-related stereotypes set expectations of ill health and for all ages during a wide-spread pandemic, which extends this suspicion to everyone. In Study 3, we showed that the effect of emotion expressions was also generalized to the physical distance that the observer wishes to keep from the expresser. Overall, this research is the first to show a role of emotion expressions in informing health perception. (shrink)

The health policy community has a growing interest in the impact of nonmedical determinants of health, such as housing, nutrition, and social supports, on both health outcomes and costs. This interest has been spurred by the Affordable Care Act’s emphasis on prevention, Robert Wood Johnson’s grant‐making focus on a Culture of Health, and an uptick of research demonstrating the potential returns to health care from investments in social services. Much of this policy‐making, grant making, and (...) research has focused on older Americans.The direct policy implications of this strategy can be elusive. It has become clear that more than medicine will be necessary to improve older Americans’ health status. Real improvement likely requires the development of additional social service offerings, including housing that is accessible to people with disabilities, Meals on Wheels‐type nutrition supports, and transportation. But who should bear the costs and control the finances associated with these programs? In this essay, I explore the question of how policy‐makers should consider financing nonmedical investments in older Americans’ health. As the reader will recognize, I stop short of arguing for what will work. Rather, I identify the strands of an emerging strategy—namely, for health care dollars to be diverted into social service programming—and offer several cautions. It may be that policy‐makers still wish to continue down this path, but my hope is that this essay will allow them to so with greater attention to the risks and unintended consequences of that strategy. (shrink)

Siegler identifies the elderly as a population vulnerable to discrimination as society seeks to contain health care costs by rationing medical care. Traditional decision making by physicians and patients, which is based upon medical indications and the wishes of the patient, may yield to decision making based upon institutional and social expediency and economic concerns. Siegler predicts that as a consequence of cost containment measures, certain groups of patients, of whom the elderly constitute a large percentage, will find their (...) access to medical care limited, and the extent of that care reduced. He suggests that this threat to the elderly can be counteracted by retaining the traditional physician patient relationship, by basing care decisions upon clinical criteria, and by beginnning rationing with those groups of patients best able to defend themselves. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Hildegard: Medieval Holism and ‘Presentism’—Or, Did Sigewiza Have Health Insurance?Jerome L. Kroll (bio)Keywordsholistic healing, presentism, Hildegard of Bingen, medieval medicineSuzanne Phillips and Monique Boivin have published an article examining Hildegard of Bingen’s (1098–179) treatment and cure of Sigewiza, a possessed woman. The purpose of their article is to demonstrate Hildegard’s holistic, or biopsychosocial, approach to healing as a model that we in the twenty-first century have lost but (...) would do well to recover. Several questions come to mind:What is Hildegard’s model?Have we lost it?Is it something we wish to emulate?The basics of the case history is that a noblewoman, Sigewiza, is ill or possessed of an evil spirit. Attempts by her local abbot and community to send her on pilgrimages or otherwise to cure or exorcise her, even with Hildegard’s recommendation, have only short-lived success, after which Sigewiza’s illness or demon returns. Finally, the abbot asks Hildegard to take the noblewoman into her Benedictine monastery, and after a suitable time and various interventions, Sigewiza is permanently (presumably) cured. The arduous process of effecting this cure has left Hildegard weak and ill herself, a pattern of poor physical health from which Hildegard suffered all her life.Phillips and Boivin claim that this is an early example of conceptualizing and utilizing a bio-psychosocial model to treat a complex illness. Hildegard, well known for her medical and pharmaceutical knowledge, applies the proper dietary changes to correct Sigewiza’s humoral (biological) imbalance. She treats the psyche and its partner, the soul, by long hours of discussion with Sigewiza and verbal duels with her demon, as well as by exorcising the demon, and she includes the social aspects of treatment by bringing Sigewiza into the Benedictine community of sisters as a participating member. Which of these three modalities may be sufficient for a cure depends upon the medieval literary genre in which the case appears. If in a medical text, then the proper dietary treatment and application of compounds to neutralize and correct the offending humoral imbalances would be the therapeutic agents. In medieval hagiography, [End Page 369] the biological modality is never sufficient and often ridiculed, because the entire thrust of the text is to demonstrate the futility of medical (secular) ministrations and the effectiveness of saintly intervention in producing a cure, whether or not exorcism is technically part of the process. In Sigewiza’s case, perhaps because of the stubbornness of the possessing demon or because of other factors attached to Sigewiza’s condition, the three (biopsychosocial) modalities are utilized. It seems that Sigewiza has a treatment-resistant illness.The narrative follows a familiar topos in saint’s lives (Kroll and Bachrach 2005). Attempts to cure a demoniac by prayers, pilgrimages, intercessions of other local saints or reputedly holy persons, and sometimes by physicians (when available) are to no avail. The sufferer is brought, amidst great fanfare and public attention (a media event), to the holy woman who is the central figure of the particular Vita, and the sufferer is promptly, or protractedly, cured. In such an account, the holiness of the holy woman is further demonstrated and her reputation, shrine, and influence are duly extended and enhanced. The holy person, with humility, attributes the intercession and cure to the power of God, or Jesus or Mary or a particular patron saint, but the crowd of onlookers and the audience of the Vita understand that God (or Jesus or Mary) has in fact granted the miracle cure as a way of demonstrating the holiness of this holy person in contrast to those who previously tried to cure the ill person. The abbot who ‘referred’ Sigewiza to Hildegard, and the previous saints’ shrine to whom Sigewiza was brought, although generally acknowledged as being of fine character or respectability, had to suffer the ignominy of their petitions being rejected to dramatize the special regard in which Hildegard is held.Although we can say that the “purposes” for which Hildegard’s hagiographer includes such anecdotes is to demonstrate her holiness and her importance in God’s eyes, this does not stop us, nine centuries later, from using such... (shrink)

A basic human right to the delivery of health care, even to the delivery of a decent minimum of health care, does not exist. The difficult with talking of such rights should be apparent. It is difficult if not impossible both to respect the freedom of all and to achieve their long-range best interests. -/- Rights to health care constitute claims against others for either their services or their goods. Unlike rights to forbearance, which require others to (...) refrain from interfering, rights to beneficence require others to participate actively in a particular understanding of the good life. Rights to health care, unless they are derived from special contractual agreements, depend on the principle of beneficence rather than that of autonomy, and therefore may conflict with the decisions of individuals who may not wish to participate in realizing a particular system of health care. If the resources involved in the provision of health care are not fully communal, private owners of resources may rightly have other uses in mind for their property than public care….[T]he principles of autonomy and beneficence that lie at the foundations of justice will spawn conflicts within any portrayal of a just allocation of health care resources. (shrink)

Die wachsende Nachfrage nach Anti-Aging-Medizin wirft die Frage auf, welche medizinischen Leistungen ein solidarisches Gesundheitssystem tragen sollte. Die deutsche Entscheidungspraxis beruft sich auf den Begriff der Krankheit. Im Blick auf Anti-Aging wäre demnach 1) zu klären, was der Krankheitsbegriff bedeutet, 2) zu prüfen, ob das Altern sich unter diesen Begriff subsumieren lässt, um 3) abzuleiten, inwieweit Anti-Aging-Maßnahmen zur Verfügung zu stellen sind. Dieses Prozedere führt jedoch zu keinem brauchbaren Ergebnis. Unter Berufung auf den Krankheitsbegriff allein ist der Umfang solidarischer Gesundheitsversorgung (...) nicht zu bestimmen. Allerdings lässt sich durch Reflexion auftretender Probleme ein gangbarer Entscheidungsweg aufzeigen. Er sieht eine faire Verständigung über die Frage vor, wie wir alt werden wollen. (shrink)

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without written permission. We (...) present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)

Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance.Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers (...) in Netherlands, and to examine the meaning of self-management in managing work-life balance.Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers.Results: Twenty studies that met the inclusion criteria could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty’s, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver.Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro, organizational, and employee level. (shrink)

It is not uncommon for patients with advanced disease to express a wish to hasten death. Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient’s personal and sociocultural background, or which necessarily imply taking concrete steps to ending one’s life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we (...) analyse in greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: assumptions related to patients’ moral understandings in terms of dignity, autonomy and authenticity; assumptions related to social interactions; assumptions related to the value of life; and assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients’ experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. (shrink)

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within (...) the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy. (shrink)