Family Medicine first formally confronted systems thinking with the adoption of the biopsychosocial model for understanding disease in a holistic manner; this is a description of a natural system. More recently, Family Medicine has been consciously engaged in developing itself as a system for delivering health care, an artificial system. We make this new system available to all people, whether sick or well, offering to manage not just their diseases, but their lives. However, a major difference (...) between natural and artificial systems is that natural systems have smooth feedback loops to ensures homeostasis, whereas artificial systems do not. They can only adjust themselves by disruptive adaptive and renewal cycles. Further, Family Medicine aspires to base its creation of this artificial system on the key principles of Family Medicine - continuity, comprehensiveness, and compassionate care in the context of family and community. However, there are another set of principles driving the modern Family Medicine system of healthcare, principles that function like the hidden curriculum of medical education. These principles - risk thinking, health as a commodity, and individual responsibility - are part of a deeper current within healthcare called by some biomedicalization. On closer analysis, many of these characteristics are intimately tied with liberal economies that must grow. Yet this economic system is an artificial system that lacks feedback. It is imperative that we in Family Medicine reexamine our commitment to developing artificial systems. (shrink)

While ethicists have directed much attention to controversial biomedical issues--including euthanasia, abortion, and genetic engineering--they have largely ignored the less obvious, but more pervasive, everyday ethical problems faced by family physicians. Ethical Issues in Family Medicine addresses these problems, offering an ethics that reflects the distinctive features of family practice, and helping family physicians to appreciate the extent to which ethical issues influence their practice.

The branch of clinical medicine most likely to qualify as a social science is family medicine. Whether family medicine is a social science is addressed in four steps. First, the nature of family medicine is outlined. Second, the extent to which social science knowledge is used in family practice is discussed. Third, the extent to which family medicine can qualify as a social science is considered with respect to an orthodox (...) model of the social sciences, that is, one that emphasizes affinities between the natural and social sciences. Finally, the same question is addressed with respect to an unorthodox model of the social sciences, that is, one that stresses the evaluative nature of the social sciences. CiteULike Connotea Del.icio.us What's this? (shrink)

Family Medicine Groups (FMGs) are the most recently developed primary care organizations in Quebec (Canada). Nurses within FMGs play a central role for patients with chronic diseases (CD). However, this complex role and the nursing activities related to this role vary across FMGs. Inadequate knowledge of nursing activities limits the implementation of exemplary nursing practices. This study aimed to describe FMG nursing activities with patients with CD and to describe the facilitators and barriers to these activities. A multiple‐case (...) study was performed with ten nurses practicing among patients with CD in FMGs. Five data sources were used to provide an in‐depth description of nursing activities and the facilitators and barriers to the development of these activities. After qualitative data analysis, findings show that nursing activities are clustered into five domains: Global assessment of the patient, Care management, Health promotion, Nurse–physician collaboration, and Planning services for patients with CD. Activities vary depending on contextual factors identified in each case. This multiple‐case study provides a clear description of nursing activities with patients with CD. There is a need for improved nursing activities and expertise in domains of activities that are less present in FMGs, such as case management and interprofessional collaboration. (shrink)

The singular expertise of family physicians is the ability to manage complexity with pragmatism, both clinically and ethically. Telemedicine raises multiple questions about the nature of the patient‐physician relationship as manifested in clinical encounters. Some of these questions are concerning, underscoring the need to assess whether medical care is better with this new technology—or if it is just different or maybe even worse. It seems clear, however, that, regardless of its limitations, telemedicine is here to stay. The pragmatic complex (...) ethical question, then, is how all of us together—both medical professionals and society at large—will manage it. (shrink)

Background Medical Assistance in Dying in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death in general and the specific provision of MAID are unknown among Canadian residents. This study examined residents’ attitudes towards PHD and MAID, and identified factors that may influence (...) their decision to participate in PHD and provide MAID. Methods A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents’ attitudes towards PHD and MAID. Results Overall, 247 residents from 6 family medicine training programs in Canada participated. While residents were most willing to participate in treatment withdrawal, active participation in PHD and MAID by prescription of a lethal drug and lethal injection were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents’ willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD and MAID. Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities had a statistically significant association. Other significant factors included the residents’ sex and location of training. Conclusions Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision. (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)

Background and Objectives Primary care providers (PCPs) report decreased job satisfaction and high levels of burnout, yet little is known about their experience of moral distress. The aim of this study was to gain insight into the experiences of PCPs regarding moral distress including causative factors and proposed mitigation strategies. Methods This qualitative pilot study used semi-structured interviews to identify causes of moral distress in PCPs in an academic family medicine department. Interviews were analyzed using conventional content analysis. (...) Results Of 35 eligible participants, 12 completed the study (34% participation rate). Most were white, female, and had practiced for less than 10 years. Four PCPs had considered leaving their position due to moral distress. Participants identified five causes of moral distress: policies and procedures that conflict with patient needs, the unpredictable nature of primary care, need to “bend the rules,” lack of accountability, and lack of support staff. Six internal conflicts made resolving morally distressing situations difficult: perceived powerlessness, sense of responsibility, socialization to follow orders, emotional toll of the job, competing obligations, and fear of mistakes. Conclusions These findings matched themes in the current literature and identified an unbending infrastructure. This, coupled with the chaotic nature of primary care, resulted in frequent moral distress. Participants offered solutions to reduce and mitigate moral distress (also similar with current literature) and suggested moral distress and burnout are closely linked. (shrink)

The open practice of euthanasia in The Netherlands stood alone in the world until the government of the Northern Territories in Australia accepted the possibility of physician-assisted suicide. Even though the active ending of lives in The Netherlands is still a crime by law, the current practice allows it and acquits physicians if certain conditions have been met. Of the many facets of euthanasia, the teaching of this practice represents a further logical step. In this contribution, we intend to describe (...) the comprehensive teaching program of euthanasia of the Free University of Amsterdam's Postgraduate Family Medicine Program. Here students receive university-based training for 1 day a week in a cohort of 12 and on the job training for 4 days with individual family physicians for 2 consecutive years. We especially intend to portray the integration of euthanasia into the wider teaching of the process of counseling and aid of the dying. (shrink)

This article suggests that motivations to engage in research, as in any other human activity, are both explicit and implicit. Explicit motivations tend to be objective and rationalist, concerned with such goals as the advancement and organization of knowledge. But implicit motivations, the 'hidden agendas' of research, also exist and can influence the objectives, methods, and conclusions of the research process. In addition, a highly affectively charged activity such as research also develops its own set of symbolic meanings, which further (...) complicate its various expressions. In this article, three such symbolic meanings are identified: purpose and seriousness; maturity and adulthood; and legitimacy and belonging. The article highlights qualitative research as a methodology compatible with much of family medicine's philosophy and theoretical foundations; and discusses the role of behavioural scientists in participating in a research agenda for the field. The article concludes with a plea for the discipline of family medicine to opt for authenticity in research, rather than settling for a superficial legitimacy in the eyes of other medical specialties. (shrink)

The importance of bioethics education as a valuable tool to be responsive to medicine’s complexities is affirmed by graduate medical education accreditation bodies and professional organizations alike. The Accreditation Council for Graduate Medical Education, the body that accredits the majority of medical residency and fellowship programs in the United States, affirms the importance of ethics training for physicians in training. How this is accomplished is largely left to the prerogative of individual programs to manage, as benchmarks or milestones to (...) ascertain this are not firmly in place. However, there is doubt that significant education in bioethics is being accomplished by individual residency programs. This review searched the PubMed database for relevant articles on the scope and objectives of ethics education in US and Canadian family medicine residency programs. (shrink)

The importance of bioethics education as a valuable tool to be responsive to medicine’s complexities is affirmed by graduate medical education accreditation bodies and professional organizations alike. The Accreditation Council for Graduate Medical Education, the body that accredits the majority of medical residency and fellowship programs in the United States, affirms the importance of ethics training for physicians in training. How this is accomplished is largely left to the prerogative of individual programs to manage, as benchmarks or milestones to (...) ascertain this are not firmly in place. However, there is doubt that significant education in bioethics is being accomplished by individual residency programs. This review searched the PubMed database for relevant articles on the scope and objectives of ethics education in US and Canadian family medicine residency programs. (shrink)

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

Recent developments in novel therapies for neuromuscular diseases offer parents new perspectives on their affected children's future. This article examines how the emergence of new therapies impacts the lives of parents of children with Duchenne muscular dystrophy or spinal muscular atrophy type 2, two genetic neuromuscular disorders characterized by progressive muscle degeneration. Aiming for a first‐person perspective, fieldwork was conducted utilizing participant observation, semistructured interviews, and several internet sources. Six families with a total of 12 persons, all living in Denmark, (...) were included in the interviews. Two types of parents were identified who were at opposite ends in dealing with the new therapies—the cure optimists and the cure pragmatists. Different hopes resulted in different narratives for their children's futures. The article raises questions about how and when children with chronic diseases should be involved in their parent's hopes for a cure and highlights the dilemmas facing health professionals working in the field of children with chronic diseases for which the prospects of a cure are improving. We conclude that health professionals must find a way to carefully balance guidance and information about experimental medicines, including the fact that experimental medicine sometimes fails, does not work as well as hoped for, or does not become available, with sustaining parental hopes for their children's future. (shrink)

Medicine and families, two venerable institutions crucial to human well-being, are in crisis. The medical profession, struggling to control and equitably distribute care, finds itself compromised by its own success; families are shattered by divorce, violence and confusion about their own nature. What has gone unnoticed is the way these two powerful and pervasive spheres contribute to each other's loss of direction. The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand (...) each other. The authors explore how medicine, through its new reproductive technologies, is altering the structure of families, how families can participate more fully in medical decision-making, and how to understand the impact on families when medical advances extend life but not vitality . This book takes an unprecedented perspective on both institutions. Innovative and vivid, their stories tell the tales of families interacting with the medical establishment. (shrink)

This book about philosophy of medicine bestows a bottom-up and not a top-down approach. It starts from clinical medicine and epidemiology, analyzing their interrelations with philosophical instruments. The book criticizes the constant search for generalities and the essentialism that too often characterizes this discipline, which results in philosophers of medicine dialoguing with each other without direct contact with medical science. In the light of Ludwig Wittgenstein's philosophy, this book proposes an approach to the philosophy of medicine (...) based on the quorum of language, what Wittgenstein calls family resemblances. In this way the author establishes a philosophy of medicine that is closely related to the medical clinic and to public health and as such avoids armchair philosophy. “Don’t think, but look", wrote Wittgenstein. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

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)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public policy (...) settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

While medicine is solidly grounded on scientific areas such as biology and chemistry, some argue that it is in its essence not a science at all. With medicine playing a substantial societal role, addressing questions about the scientific nature of medicine is of obvious urgency. This paper takes on such a task and starts by consulting the literature on the “demarcation” problem in the philosophy of science. Learning from failures of earlier approaches, it proposes that we adopt (...) a Deflated Approach, which acknowledges that “science” is a family resemblance concept that admits differences of degrees to nonscientific undertakings. Then, drawing on Paul Hoyningen-Huene’s (Systematicity: The nature of science, Oxford University Press, Oxford, 2013); (Synthese 196: 907–928, 2019) account of systematicity and Alexander Bird’s (Synthese 196: 863–879, 2019) analysis of examples from the history of medicine, the paper argues that medicine meets the requirement for systematicity on all dimensions and thereby qualifies as a science. The paper then considers and defuses two objections. First, it is shown that nonepistemic differences linked to the distinctive duality of medicine do not warrant thinking that medicine is not science. Second, against some recent criticism (Oreskes in Synthese 196: 881–905, 2019), the paper uses homeopathy as an example to show that (synchronic and diachronic) systematicity can succeed as a demarcation criterion. (shrink)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public policy (...) settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

Honor walks are ceremonies that purportedly honor organ donors as they make their final journey from the ICU to the OR. In this paper, we draw on Ronald Grimes’ work in ritual studies to examine honor walks as ceremonial rituals that display medico-technological power in a symbolic social drama (Grimes, 1982). We argue that while honor walks claim to honor organ donors, ceremonies cannot primarily honor donors, but can only honor donation itself. Honor walks promote the quasi-religious idea of donation (...) as a “good death,” and mask the ambiguity and discomfort inherent in organ donation to promote greater acceptance by the medical community. While some goods may be achieved through honor walks, particularly for donor families, it is still important to examine the negative work done by this practice. (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 (...) class='Hi'>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)

While medicine is solidly grounded on scientific areas such as biology and chemistry, some argue that it is in its essence not a science at all. With medicine playing a substantial societal role, addressing questions about the scientific nature of medicine is of obvious urgency. This paper takes on such a task and starts by consulting the literature on the “demarcation” problem in the philosophy of science. Learning from failures of earlier approaches, it proposes that we adopt (...) a Deflated Approach, which acknowledges that “science” is a family resemblance concept that admits differences of degrees to nonscientific undertakings. Then, drawing on Paul Hoyningen-Huene’s ; account of systematicity and Alexander Bird’s analysis of examples from the history of medicine, the paper argues that medicine meets the requirement for systematicity on all dimensions and thereby qualifies as a science. The paper then considers and defuses two objections. First, it is shown that nonepistemic differences linked to the distinctive duality of medicine do not warrant thinking that medicine is not science. Second, against some recent criticism, the paper uses homeopathy as an example to show that systematicity can succeed as a demarcation criterion. (shrink)

The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions—it can be ‘therapeutic’ and important for patients’ ‘self-identity as active (...) agents’— the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests—including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments—healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope. (shrink)

Bio-heteronormative conceptions of the family have long reinforced a nuclear ideal of the family as a heterosexual marriage, with children who are the genetic progeny of that union. This ideal, however, has also long been resisted in light of recent social developments, exhibited through the increased incidence and acceptance of step-families, donor-conceived families, and so forth. Although to this end some might claim that the bio-heteronormative ideal is not necessary for a social unit to count as a (...) class='Hi'>family, a more systematic conceptualization of the family—the kind of family that matters morally—is relatively underexplored in the philosophical literature. This paper makes a start at developing and defending an account of the family that is normatively attractive and in line with the growing prevalence of non-conventional families and methods of family-formation. Our account, which we call a constitutive-affirmative model of the family, takes the family to be constituted by an ongoing process of relevant affective and affirmative relations between the putative family members. (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)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May. (shrink)

This special thematic issue of The Journal of Medicine and Philosophy brings together a cross-cultural set of scholars from Asia, Europe, and North America critically to explore foundational questions of familial authority and the implications of such findings for organ procurement policies designed to increase access to transplantation. The substantial disparity between the available supply of human organs and demand for organ transplantation creates significant pressure to manipulate public policy to increase organ procurement. As the articles in this issue (...) explore, however, even if well intentioned, the desire to maximize organ procurement does not justify undermining foundational elements of human flourishing, such as the family. While defending at times quite different understandings of autonomy, informed consent, and familial authority, each author makes clear that a principled appreciation of the family is necessary. Otherwise, health care practice will treat the family in a cynical and instrumental fashion unlikely to support social or individual good. (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)

The connections between medicine and well-being are myriad. This paper focuses on the place of well-being in clinical medicine. It is here that different views of well-being, and their connection to concepts like “autonomy” and “authenticity”, both illuminate and are illuminated by looking closely at the kinds of interactions that routinely take place between clinicians, patients, and family members. -/- In the first part of the paper, I explore the place of well-being in a paradigmatic clinical encounter, (...) one where a competent patient interacts with a clinician. The main question here is how, or even whether, the pursuit of patient well-being – however we construe it – figures into a paradigmatic clinical encounter. In the second part of the paper, I consider what I will call a marginal clinical encounter – one where the patient is, as Agnieska Jaworska (1999) puts it, at the “margins of agency” – to theorize about the nature of well-being and to show how different theories of well-being can have dramatic consequences for clinical decision-making. (shrink)

This essay indicates that Confucian family-based ethics is by no means a stumbling block to organ donation in China. We contend that China should not change to an opt-out consent system in order to enhance donation because a “hard” opt-out system is unethical, and a “soft” opt-out system is unhelpful. We argue that the recently-introduced familist model of motivation for organ donation in mainland China can provide a proper incentive for donation. This model, and the family priority right (...) that this model supports, is ethically justifiable in terms of Confucian family-based ethics. (shrink)

This paper asks whether investigation into the ontology of the extended family can help us to think about and resolve questions concerning the nature of the family’s decision-making authority where organ donation is concerned. Here, “extended family” refers not to the multigenerational family all living at the same time, but to the family extended past its living boundaries to include the dead and the not yet living. How do non-existent members of the family figure (...) into its ontology? Does an answer to this question help to resolve questions about the distribution of authority within the extended family? (shrink)

This essay illustrates what the Chinese family-based and harmony-oriented model of medical decision making is like as well as how it differs from the modern Western individual-based and autonomy-oriented model in health care practice. The essay discloses the roots of the Chinese model in the Confucian account of the family and the Confucian view of harmony. By responding to a series of questions posed to the Chinese model by modern Western scholars in terms of the basic individualist concerns (...) and values embedded in the modern Western model, we conclude that the Chinese people have justifiable reasons to continue to apply the Chinese model to their contemporary health care and medical practice. (shrink)

This comprehensive book covers the research, theory, policy and practice context of unusual reproduction using third parties. Olga Van den Akker details the psychological adaptation required to continuing changes in public opinion, advances in technologies and new legislations in surrogate motherhood and discusses their impact at an individual, societal and global level. She describes the competing interests and interactions between legal, organisational, personal, social, psychological and cultural issues in relation to biological and genetic surrogate and commissioning parenthood. This book is (...) intended for professionals, practitioners, academics and students interested in the complexities of unusual reproduction using multidisciplinary perspectives. (shrink)

This article confronts the challenges and opportunities presented by medical-legal partnerships (MLPs) representing families impacted by the family regulation system. Based on the authors’ experience developing a collaboration between a medical-legal partnership, interdisciplinary law school clinic and nurse home visiting program focused on clients impacted by the family regulation system, the article challenges traditional conceptions of the MLP model and proposes an expanded vision for MLPs to address systemic injustice and improve outcomes for families.

In recent years, Confucian ethics has been considered as an alternative to the individual-oriented model of medical decision-making that is dominating in the modern West.

BackgroundKnowledge and attitude towards organ donation are critical factors influencing organ donation rate. We aimed to assess the knowledge and attitude towards organ donation in adolescents in Austria and Switzerland.MethodsA paper-based survey was performed in two secondary schools (age range 11–20 years) in Austria and Switzerland. 354/400 surveys were sufficiently answered and analyzed.ResultsOur study found that knowledge on organ donation is scarce in adolescents. Less than 60% of those surveyed thinks that a person is dead when declared brain dead. 84.6% (...) would authorize organ donation after brain death for themselves, but only 69% would authorize organ donation after brain death for a close relative. 93.7% would accept a donor organ if they needed one. Family discussions, rather than school discussions, influenced knowledge on organ donation, the percentage of respondents who have a firm opinion on organ donation and the rate of declaration of this opinion. Age, gender, nationality and religion also influenced knowledge and attitude towards organ donation. Nearly one third of adolescents are of the opinion that selling non-vital organs should be legalized.ConclusionSince having had family discussions, a potentially modifiable factor, was positively associated with knowledge and attitude towards organ donation, we postulate that educational programs stimulating family discussions on organ donation may be a promising strategy to increase knowledge. (shrink)