Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, (...) and was analyzed through deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)

Critical care of neonatesThe recently published report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine, is a valuable contribution to the discussion of decision making in the critical care of neonates. Drawing upon medical evidence, the working party highlights the many practical difficulties arising in neonatal care and by setting out clearly the nature of the ethical and other issues arising in this area of (...) medicine, and their relationship with neonatal development, the resulting report has the potential to lead both to improved practice and to better informed communication between doctors and families when they face difficult decisions about how best to treat very premature babies. Based on medical evidence, the working party sets out guidelines on decision-making about the resuscitation of babies born before the gestational age of 25 weeks and 6 days, dividing this period into four chronological periods: before 21 weeks and 6 days when resuscitation should normally only take place within the context of a research project; between 22 weeks and 23 weeks when resuscitation should not normally be carried out unless the parents request it; at 23 or 24 weeks when parental views should take precedence; and, after 24 weeks when resuscitation should be the norm unless not in the child’s best interests.There are several practical ethical difficulties with this aspect of the advice. To what extent, for example, does the paediatric assessment of the child, intended to play a role in decision-making about the appropriateness of resuscitation, itself depend on the initiation of resuscitation? To what extent is it reasonable and humane to expect parents to take full responsibility for making decisions about resuscitation between 23 and 24 weeks? On what grounds is it acceptable to attempt to resuscitate a baby <21 weeks and 6 …. (shrink)

Death and grief in the ancient world -- Predictions and disability in Rome.

‘Shared’ decision-making is heralded as the gold standard of how medical decisions should be reached, yet how does one ‘share’ a decision when any attempt to do so will undermine _autonomous_ decision-making? And what exactly is being shared? While some authors have described parallels in literature, philosophical examination of shared agency remains largely uninvestigated as an explanation in bioethics. In the following, shared decision-making will be explained as occurring when a group, generally comprised (...) of a patient and or their family, and the medical team become a genuine intentional subject which acts as a collective agent. Collective agency can better explain how some medical decisions are reached, contrary to the traditional understanding and operationalization of ‘autonomy’ in bioethics. Paradoxically, this often occurs in the setting of high-stakes moral decision-making, where conventional wisdom would suggest individuals would _most_ want to exercise autonomous action according to their personally held values and beliefs. This explication of shared decision-making suggests a social ontology ought to inform or displace significant aspects of autonomy as construed in bioethics. It will be argued that joint commitments are a fundamental part of human life, informing and explaining much human behavior, and thus suggesting that autonomy - conceived of as discrete, individuated moral reasoning of a singular moral agent - is not an unalloyed ‘good.’. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of (...) how professionals’ counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

The ethics sections of Critical Care Societies have issued position statements and proposed a variety of position papers and policies describing the appropriate use of critical care services. These policies describe the goals of critical care provision — to support a patient through an acute, potentially reversible, life-threatening illness — and provide broad guidance on physiological and hemodynamic criteria that require the specialized care of an ICU environment. In recent years, many critical (...) care professionals have, however, reported providing care they felt was inappropriate or futile even though most felt they should not have done so. Futile care encompasses treatments that will not work or treatments that have no chance of providing any benefit. ICU teams define care as inappropriate when it fails to restore a person to an awareness of self, and an ability to interact with their environment particularly when a lot of critical care resources are required. When patients experience significant amounts of pain and suffering, such care seems even more inappropriate. (shrink)

Multiprofessional guidelines for fair access to and use of adult critical care services are desperately needed to define a consistent transparent standard of care: when such therapies have the potential to benefit and help a patient as they journey with illness and when they cannot.

Zur patientenorientierten Behandlung bei nichteinwilligungsfähigen Patienten werden aktuell der Einbezug oder auch die Entscheidung durch ein Ethikkonsil oder klinisches Ethikkomitee (KEK) gefordert. Damit die Entscheidung des Entscheidungsträgers durch das KEK unterstützt werden kann, müssen Zuständigkeiten, Besetzung und Arbeitsweise des Gremiums klar umschrieben sein.

Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) (...) favorisiert, die sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht. (shrink)

This study examines the processes ofdecision-making used by intensive care(critical care) specialists. Ninety-ninespecialists completed a questionnaire involvingthree clinical cases, using a novel methodologyinvestigating the role of uncertainty andtemporal-related factors, and exploring a rangeof ethical issues. Validation and triangulationof the results was done via a comparison studywith a medically lay, but highly informed groupof 37 law students. For both study groups,constructing reasons for a decision was largelyan interpretative and imaginative exercise thatwent beyond the data (as presented), (...) commonlyresulting in different reasons supporting thesame conclusions and similar reasons supportingopposite conclusions. The skills of ethicalimagination and interpretation were related toan individual''s prior lived experience,construed in the broadest sense. Application ofthese skills of ethical imagination andinterpretation always occurred, to some degree,in a state of uncertainty and almost alwaysinvolved temporal relationships.Using these results, a theory of ethicaldecision-making is proffered. Three levels ortypes of reasoning processes may be present.Type I decision-making involves the applicationof rules, usually in a deductive fashion. TypeII decision-making is characterised by aprocess where a plurality of reasons arebalanced, weighed and sifted with each other.Type III decision-making is intimately linkedwith respondents lived experiences and `crafts''the content of type I and II reasoningprocesses, via the application of ethicalimagination and interpretation. Relationshipsbetween these three types of reasoningprocesses, and with narrative ethics, are alsodiscussed. (shrink)

" Journal of the American Medical Association "Walton has made a successful attempt to write about medical concerns without ever leaving the layperson to ...

Ein Topos in institutionellen Stellungnahmen zu „Genome Editing am Menschen“ ist die Forderung nach einem Moratorium. Dieses soll einerseits dazu dienen, zu einer angemessenen Risikoabklärung zu gelangen, und andererseits einer gesellschaftlichen und ethischen Diskussion hinreichend Raum zu geben, um zu entscheiden, ob die vom Moratorium betroffenen Eingriffe überhaupt grundsätzlich erwünscht sind. Dabei scheint das Moratorium eine kompromisshafte Lösung zu sein, auf die sich die Mitglieder in weltanschaulich pluralen Ethikgremien verständigen können. Die Analyse der zu Genome Editing in den Jahren 2015 (...) bis 2018 verfassten Stellungnahmen zeigt jedoch ein deutlich komplexeres Bild: Was als konsensuale Kompromissformel erscheint, stellt sich als vielfach konflikthaftes Lösungsmodell dar. Umstritten ist in den unterschiedlichen Moratoriumsmodellen der Umfang (was alles ist vom Moratorium betroffen?), die Dauer (gibt es ein konkretes Datum, bis zu dem das Moratorium gilt?), der Zweck (dient es bloß der Risikoabschätzung oder auch der ethischen und/oder gesamtgesellschaftlichen Diskussion?) und die Frage, was für eine Maßnahme am Ende des Moratoriums getroffen werden soll. Zudem ist zwischen impliziten und expliziten Moratorien zu unterscheiden und zu untersuchen, was mit dem Moratoriumsvorschlag jeweils nicht verursacht werden soll (zum Beispiel die Grundlagenforschung einschränken). Am Ende der ethischen Analyse zeigt sich, dass mit klarer bestimmten Moratoriumsforderungen ein stärkeres Bewusstsein des Aufschub-Charakters dieser spezifischen Empfehlung einhergeht. So lässt sich auch das Ethos der Verantwortlichkeit – gegenüber jetzt Lebenden sowie künftigen Generationen – besser realisieren. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.This last point—the newly visible moral richness of intimate relationship—provides this paper with (...) its field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies. (shrink)

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.This last point—the newly visible moral richness of intimate relationship—provides this paper with (...) its field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies. (shrink)

Background The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022. Objectives (1) To explore the perspectives (...) of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. Methods This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. Results A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value – a less acceptable tiebreaker. Conclusion Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria. (shrink)

AimIn case of extremely rare diseases, case reports are often the only experience to draw from for evidence-based management. Carmi syndrome is a rare, mostly lethal combination of junctional epidermolysis bullosa and pyloric atresia. During an ethical board, there were differences in perception of mortality rate. We tested the hypothesis that the cumulative mortality of single case reports is lower than that of multiple case series.CaseA baby girl was born at 33 weeks gestation with Carmi syndrome. The treatment options discussed (...) in an interdisciplinary ethics board were a palliative approach versus surgical gastrojejunostomy. Because about one third of operated children described in case reports survived, we opted for surgical treatment. The patient died a painful death 4 weeks later.MethodsThe PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome.ResultsA total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients (63%), while that of case series was higher at 62 out of 74 patients (84%,p = 0.036).ConclusionsSelection and publication bias may lead to inflation of survival rates in single case reports because successful cases are more likely to be published in the literature. These biases may lead to inappropriately aggressive treatment in futile cases. Clinicians should be cautious when discussing prognosis and making decisions based on the cumulative experience of case reports of extremely rare or novel diseases. (shrink)

When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care (...) or ethics consultation. In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making. (shrink)

Many medical interventions have both negative and positive effects. When health care professionals cannot achieve a particular desired good result without bringing about some bad effects also they often rely on double-effect reasoning to justify their decisions. The principle of double effect is therefore an important guide for ethical decision-making in medicine. At the same time, however, it is a very controversial tool for resolving complex ethical problems that has been criticized by many authors. For these (...) reasons, I examine in this paper whether the principle of double effect can serve as a basis for ethical decisions in medicine. The conclusion reached in this article is that even though this principle has desirable effects on clinical conduct, it is only an unreliable guide and physicians and nurses cannot feel secure in continuing to use this principle for ethical guidance. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the empirical (...) data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the empirical (...) data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

Definition of the problemThe Shared Decision Making model is becoming increasingly popular also in the German-speaking context, but it only considers values of patients to be relevant for medical decisions. Nevertheless, studies show that the values of physicians are also influential in medical decisions. Moreover, physicians are often unaware of this influence, which makes it impossible to control it.ArgumentsThe influence of both patients’ and physicians’ values is examined from an empirical and normative perspective. The review about the empirical (...) data provides a necessary overview about the status quo, whereas I deduct rules for value-influenced behaviour in the decision making process in the normative approach. Therefore, different scenarios are taken into account to explore in which situations it is acceptable for physicians to let their values be part of the decision making process. The conscious use of values is only possible, when physicians are aware of their influence. To raise awareness, the best option would be to educate future physicians about it in their training. Therefore, this article provides a teaching concept for a unit that could be part of an ethics class for physicians in training. Furthermore, patient’s rights and responsibilities in the decision making process are discussed.ConclusionI conclude that it is necessary to take the influence of values into account and include this knowledge into the training of physicians. Conclusively, recommendations for patients and physicians and their dealing with values in shared decision making processes are suggested. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for (...) other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and (...) even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and (...) even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

Coercive medico-legal interventions are often employed to prevent people deemed to be unable to make competent decisions about their health, such as minors, people with mental illness, disability or problematic alcohol or other drug use, from harming themselves or others. These interventions can entail major curtailments of individuals' liberty and bodily integrity, and may cause significant harm and distress. The use of coercive medico-legal interventions can also serve competing social interests that raise profound ethical, legal and clinical questions. Examining the (...) ethical, social and legal issues involved in coerced care, this book brings together the views and insights of leading researchers from a range of disciplines, including criminology, law, ethics, psychology and public health, as well as legal and medical practitioners, social-service 'consumers' and government officials. Topics addressed in this volume include: compulsory treatment and involuntary detention orders in civil mental health and disability law; mandatory alcohol and drug treatment programs and drug courts; community treatment orders; the use of welfare cards with Indigenous populations; mandated treatment of seriously ill minors; as well as adult guardianship and substituted decision-making regimes. These contributions attempt to shed light on why we use coercive interventions, whether we should, whether they are effective in achieving the benefits that are offered to justify their use, and the impact that they have on some of society's most vulnerable citizens in the names of 'justice' and 'treatment'. This book is essential reading for clinicians, researchers and legal practitioners involved in the study and application of coerced care, as well as students and scholars in the fields of law, medicine, ethics and criminology. The collection asks important questions about the increasing use of coercive care that demand to be answered, and offers critical insights, guidance and recommendations for those working in the field. (shrink)

Objective Although patients exercise greater autonomy than in the past, and shared decision making is promoted as the preferred model for doctor-patient engagement, tensions still exist in clinical practice about the primary locus of decision-making authority for complex, scarce, and resource-intensive medical therapies: patients and their surrogates, or physicians. We assessed physicians’ attitudes toward decisional authority for adult venoarterial extracorporeal membrane oxygenation (VA-ECMO), hypothesizing they would favor a medical locus. Design, Setting, Participants A survey of resident/fellow (...) physicians and internal medicine attendings at an academic medical center, May to August 2013. Measurements We used a 24-item, internet-based survey assessing physician-respondents’ demographic characteristics, knowledge, and attitudes regarding decisional authority for adult VA-ECMO. Qualitative narratives were also collected. Main Results A total of 179 physicians completed the survey (15 percent response rate); 48 percent attendings and 52 percent residents/ fellows. Only 32 percent of the respondents indicated that a surrogate’s consent should be required to discontinue VA-ECMO; 56 percent felt that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection. Those who self-reported as “knowledgeable” about VA-ECMO, compared to those who did not, more frequently replied that there should not be presumed consent for VA-ECMO (47.6 percent versus 33.3 percent, p = 0.007), that physicians should have the right to discontinue VAECMO over a surrogate’s objection (76.2 percent versus 50 percent, p = 0.02) and that, given its cost, the use of VA-ECMO should be restricted (81.0 percent versus 54.4 percent, p = 0.005). Conclusions Surveyed physicians, especially those who self-reported as knowledgeable about VA-ECMO and/or were specialists in pulmonary/ critical care, favored a medical locus of decisional authority for VA-ECMO. VA-ECMO is complex, and the data may (1) reflect physicians’ hesitance to cede authority to presumably less knowledgeable patients and surrogates, (2) stem from a stewardship of resources perspective, and/or (3) point to practical efforts to avoid futility and utility disputes. Whether these results indicate a more widespread reversion to paternalism or a more circumscribed usurping of decisional authority occasioned by VA-ECMO necessitates further study. (shrink)

In this article some of the presuppositions that underly the current ideas about decision making capacity, autonomy and independence are critically examined. The focus is on chronic disorders, especially on chronic physical disorders. First, it is argued that the concepts of decision making competence and autonomy, as they are usually applied to the problem of legal (in)competence in the mentally ill, need to be modified and adapted to the situation of the chronically (physically) ill. Second, it (...) is argued that autonomy and dependence must not be considered as two mutually exclusive categories. It is suggested that decision making may take on the form of a more or less conscious decision not to be involved in making all kinds of explicit and deliberate decisions. Elaborating on Agich's distinction between ideal and actual autonomy, the concept of Socratic autonomy is introduced. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we (...) illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

Philosophers have long recognized that the unique values of the individual physician effect medical-ethical decision-making. While not taking issue with this basic assumption, this article critically examines one discussion of how different philosophies (existential, utilitarian, and value realist) can influence a neurosurgeon's decision to operate upon a person having a malignant brain tumor. It also delineates and discusses a fund of ‘medical wisdom’ commonly available to any neurosurgeon and easily obtainable by both researcher and patient. The article (...) suggests that those in the humanities interested in studying the ethical decision-making process in a medical subspecialty become familiar with this fund of knowledge. It can provide a base for evaluating when and how individual medical decisions vary. In this specific instance, the medical knowledge base was used to direct attention to when and how ethical issues are identified and resolved within the staff clinical neurosurgical setting. An informal survey among resident and staff neurosurgeons supported the conclusion that philosophical analyses of medical-ethical decision-making are appreciated when case examples are carefully and accurately documented, when medical terminology is used correctly and when recognition of the practical limits placed on medical decision-making is given. CiteULike Connotea Del.icio.us What's this? (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles (...) upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

This article comments on the treatment of critical-care ethics in four preceding articles about critical-care medicine and its ethical challenges in mainland China, Hong Kong, Japan, and the Philippines. These articles show how cultural values can be in both synchrony and conflict in generating these ethical challenges and in the constraints that they place on the response of critical-care ethics to them. To prevent ethical conflict in critical care the author proposes (...) a two-step approach to the ethical jus tification of critical-care management: (1) the decision to resuscitate and initiate critical-care management, which is based on the obligation to prevent imminent mortality without permanent loss of consciousness; and (2) the decision to continue critical-care management, which is based on the obligation both to prevent imminent death without permanent loss of consciousness and to avoid unnecessary, significant iatrogenic costs to the patient and psychosocial costs to the family when the reduction of morta lity risk is marginal. Physicians and hospitals should restore the critical-care physician's authority and power - against prevailing cultural values, if necessary - to control when critical-care intervention is offered, when it is recommended to continue, and when it is recommended to be discontinued and the patient allowed to die. (shrink)

BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers (...) working to generate systems medicine knowledge and clinicians working to apply it.DiscussionThis article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through “big data” approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the “death computer,” to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their “quantified self.”SummaryThis paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care. (shrink)

Decision making is a crucial element in the field of medicine. The physician has to determine what is wrong with the patient and recommend treatment, while the patient has to decide whether or not to seek medical care, and go along with the treatment recommended by the physician. Health policy makers and health insurers have to decide what to promote, what to discourage, and what to pay for. Together, these decisions determine the quality of health (...) class='Hi'>care that is provided. Decision Making in Health Care is an up-to-date, comprehensive overview of the field of medical decision making. It includes quantitative theoretical tools for modeling decisions, psychological research on how decisions are actually made, and applied research on how physician and patient decision making can be improved. (shrink)

We seem to prefer that medicine and medical care be provided through altruistic motives. Even the pharmaceutical industry justifies its behavior in terms of altruistic purposes. But economists have known since Adam Smith that self-interested behavior can create large and growing social benefits. This is true for medical care as well as for other goods. First, I consider specifically the case of pharmaceutical promotion, both to physicians and to consumers. I argue that such promotion is highly beneficial (...) to patients and leads to health improvements. I consider some criticisms of promotion, and show that they are misguided. I then provide some evolutionary explanations for our erroneous beliefs about medical care. (shrink)

Although autonomy is clearly still the paradigm in bioethics, there is increasing concern over its value and feasibility. In agreeing with those concerns, I argue that autonomy is not just a status, but a skill, one that must be developed and maintained. I also argue that nearly all healthcare interactions do anything but promote such decisional skills, since they rely upon assent, rather than upon genuinely autonomous consent. Thus, throughout most of their medical lives, patients are socialised to be heteronomous, (...) rather than autonomous. Yet, at the worst possible time – critical care decision-making – when life and death consequences are attached to the choices, the paradigm shifts and real consent is sought, even demanded, thereby making an often traumatic situation even harder.I go on, though, to also reject paternalistic models of beneficence as an alternative. Rather, I conclude that the problem is so fundamental in healthcare that a genuine solution would require a radical restructuring. I recommend steps that can be taken in the interim to improve the situation and to move toward such a restructuring. (shrink)

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making (...) a judgement about the future quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations. (shrink)

This book is a collection of contributions written by philosophers and scientists active in different fields, such as mathematics, logics, social sciences, computer sciences and linguistics. They comment on and discuss various parts of and subjects and propositions introduced in the Handbook of Analytical Philosophy of Medicine from Kadem Sadegh-Zadeh, published by Springer in 2012. This volume reports on the fruitful exchange and debate that arose in the fuzzy community upon the publication of the Handbook. This was not only (...) very much appreciated by the community but also seen as a critical starting point for beginning a new discussion. The results of this discussion, which involved many different perspectives from science and the humanities and was warmly encouraged by Kadem Sadegh-Zadeh himself, are accurately reported in this volume, which is intended to be a critical companion to Kadem Sadegh-Zadeh ́s handbook. Rudolf Seising is currently an adjunct researcher at the European Centre for Soft Computing in Mieres, Asturias (Spain) and a college lecturer at the Faculty of History and Arts, at the Ludwig Maximilians University of Munich (Germany). Marco Elio Tabacchi is currently the Scientific Director of the Italian National Research & Survey Organization Demopolis, and a research assistant in the Soft Computing Group at University of Palermo (Italy). (shrink)

Just as noncapacitated decision making will forever be a feature of clinical medicine, so will the quest for effective advance care planning and serviceable documentation of these preferences. “Re-...

Over the past two decades there has been a great deal of research conducted into the question of gender differences in ethical decision making in organisations. Much of this has been based on questionnaire surveys, typically asking respondents (often students, sometimes professionals) to judge the moral acceptability of actions as described in short cases or vignettes. Overall the results seem inconclusive, although what differences have been noted tend to show women as ‘more ethical’ than men. The authors of (...) this paper believe that attention should be paid to the insight, from Carol Gilligan and others, that women are more inclined than men to subscribe to an ‘ethic of care’, and that once this perspective is adopted a pattern is discernible. In a critical examination of previous research we pay particular attention to the detailed content of cases used in surveys, and the statistical analysis of findings. We advocate greater reflection on the results of quantitative surveys and sensitivity to different possible interpretations of findings. This we do with our own exploratory study, conducted with UK undergraduate students of accounting, the findings from which seem to support the original hypothesis that where a ‘care’ orientation is invited, women do indeed react differently to business ethics issues than do men. (shrink)

Over the past two decades there has been a great deal of research conducted into the question of gender differences in ethical decision making in organisations. Much of this has been based on questionnaire surveys, typically asking respondents (often students, sometimes professionals) to judge the moral acceptability of actions as described in short cases or vignettes. Overall the results seem inconclusive, although what differences have been noted tend to show women as 'more ethical' than men. The authors of (...) this paper believe that attention should be paid to the insight, from Carol Gilligan and others, that women are more inclined than men to subscribe to an 'ethic of care', and that once this perspective is adopted a pattern is discernible. In a critical examination of previous research we pay particular attention to the detailed content of cases used in surveys, and the statistical analysis of findings. We advocate greater reflection on the results of quantitative surveys and sensitivity to different possible interpretations of findings. This we do with our own exploratory study, conducted with UK undergraduate students of accounting, the findings from which seem to support the original hypothesis that where a 'care' orientation is invited, women do indeed react differently to business ethics issues than do men. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute (...) decision making will be highlighted: (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Aristotle’s ethical system was guided by his vision of human flourishing (also, but potentially misleadingly, translated as happiness). For Aristotle, human flourishing was a rich holistic concept about a life lived well until its ending. Both living a long life and dying well were integral to the Aristotelian ideal of human flourishing. Using Aristotle’s concept of human flourishing to inform the goals of medicine has the potential to provide guidance to clinical decision-makers regarding the provision of burdensome treatments, (...) such as intensive care treatment, where pursuing a chance of survival must be balanced against the risk of exposing patients to a negative dying experience. By conceptually uniting potentially competing goals of medicine, such as prolonging life and the promotion of peaceful deaths, Aristotle’s understanding of human flourishing creates an argument for the integration of palliative care considerations into intensive care decision-making and for advanced care planning with healthy patients. (shrink)

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients’ true wishes, meaningfully engaging patients’ significant others, balancing interests among patients and significant others, and determining clinicians’ obligations to change patients’ unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients’ competence (apart (...) from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman’s procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman’s account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician–patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care. (shrink)

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. (...) Information was extracted from each guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision- (...) class='Hi'>making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

BackgroundThe assessment of patients’ decision-making capacity is ubiquitous in contemporary healthcare. This paper examines the ethics of undisclosed probing of capacity by psychiatrists. The discussion will refer to the law in England and Wales, though the highlighted issues are likely to be relevant in similar jurisdictions.Main textDecision-making capacity is a private attribute, and patients may not necessarily be aware that one of their personal abilities is being explored. Routine exploration of capacity has not historically been a part (...) of psychiatric examination, but it is now difficult to avoid during psychiatric interview.Ethical practice and shared decision-making require patients to be aware that their decision-making may be evaluated by the doctor at some point, and the potential implications of an objective professional conclusion of incapacity. Case law directs that patients should be informed about any assessment of their decision-making ability, though the extent to which this has translated into practice is unclear. However, explanation about the assessment may cause a patient to react negatively, which may impede therapeutic engagement and constitute an ethical dilemma. It is argued that in the absence of systemic measures, professionals should retain the discretion to decide whether a particular patient should be informed about the impending probe into their decision-making ability, or not. In the latter instance, concealment of information about the assessment or its purpose should be subject to the caveats and safeguards associated with any recourse to therapeutic exception.ConclusionThe necessity to mandatorily inform patients about assessment of their capacity introduces a novel ethical dilemma for psychiatrists. The negotiation of this dilemma should not be the prerogative of the clinician, and requires systemic initiatives to ensure universal awareness of patients about the possibility of their capacity being assessed during their journeys through healthcare systems. (shrink)

In caring for pediatric patients, a multifaceted approach in decision-making is utilized. The role of the medical team in complementary and alternative medicine is controversial. In cases of conventional treatment refusal by parents in pursuit of complementary and alternative medicine, there must be balanced decision-making, autonomy, and the best interest of the child. This report highlights two illustrative cases of patients with brain tumor, whereby parents refused postoperative conventional therapy involving chemoradiotherapy, in pursuit of (...) complementary and alternative medicine alone. Parental decision-making in complementary and alternative medicine, in lieu of medical recommendations, poses an ethical and legal dilemma that may impede care of the pediatric patient and compromise outcome of oncological care. (shrink)