The right to refuse treatment is generally accepted in the legal and bioethics discourses; however, the use of advance directives remains contentious. Some jurisdictions have introduced statutory frameworks to govern the creation and implementation of advance directives, underpinned primarily by the recognition of respect for personal autonomy. Although there are no legislation and judicial decisions on advance decision-making in Malaysia, the considered view is that healthcare practitioners perceived its utility in managing patient care. This paper examines (...) the potential and challenges of applying a statutory framework in Malaysia, drawing from relevant regulatory examples. It argues for greater public awareness within the healthcare discourse and knowledge dissemination regarding the availability, usage and clinical guidance on advance decision-making. The main conclusion drawn from this exploratory analysis is that further understanding of and education about advance decision-making within the population and healthcare practitioners should precede the implementation of a statutory regime in Malaysia. (shrink)

As the prevalence of dementia increases across the Western world, there is a growing interest in advance care planning, by which patients may make decisions on behalf of their future selves. Under which ethical principles is this practice justified? I assess the justification for advance care planning put forward by the philosopher Ronald Dworkin, which he rationalises through an integrity-based conception of autonomy. I suggest his judgement is misguided by arguing in favour of two claims. First, that (...) patients with dementia qualify for some right to contemporary autonomy conceptualised under the ‘sense of liberty’ it provides. Second, that respecting precedent autonomy, such as an advance care plan, is not essential to Dworkin’s integrity-based account of autonomy. Together, my claims problematise the practice of using advance decisions in the context of dementia. (shrink)

Derek Parfit’s view of ‘personal identity’ raises questions about whether advance decisions refusing life-saving treatment should be honored in cases where a patient loses psychological continuity; it implies that these advance decisions would not be self-determining at all. Part I of this paper argues that this assessment of personal identity undermines the distinction between suicide and homicide. However, rather than accept that an unknown metaphysical ‘further fact’ underpins agential unity, one can accept Parfit’s view but offer (...) a different account of what it implies morally: that the social and legal bases for ascribing a persisting ‘personal identity’ maintain the distinction between homicide and suicide. (shrink)

Background The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these (...) preferences among urban residents. Methods Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. Results Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. Conclusion Diverse preferences in LST and ANH were shaped by the public’s current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals’ perspectives on LST and ANH decisions for neurological patients.. (shrink)

This article considers the provisions of the Mental Capacity Act 2005 in respect of advance decisions. It considers the new statutory regulation of advance directives (termed 'advance decisions' in the Act) and the formalities necessary to effect an advance decision purporting to refuse life-sustaining treatment. The validity and applicability of advance decisions is discussed with analogy to case law and the clinician's reasonable belief in following an advance decision is considered. The (...) article assesses the new personal welfare Lasting Powers of Attorney, the situation where an attorney purports to refuse life-sustaining treatment on behalf of the donor, and the contrast between best interests and substituted judgment. (shrink)

For people with Bipolar Affective Disorder, a self-binding (advance) directive (SBD), by which they commit themselves to treatment during future episodes of mania, even if unwilling, can seem the most rational way to deal with an imperfect predicament. Knowing that mania will almost certainly cause enormous damage to themselves, their preferred solution may well be to allow trusted others to enforce treatment and constraint, traumatic though this may be. No adequate provision exists for drafting a truly effective SBD and (...) efforts to establish such provision are hampered by very valid, but also paralysing ethical, clinical and legal concerns. Effectively, the autonomy and rights of people with bipolar are being 'protected' through being denied an opportunity to protect themselves. From a standpoint firmly rooted in the clinical context and experience of mania, this article argues that an SBD, based on a patient-centred evaluation of capacity to make treatment decisions (DMC-T) and grounded within the clinician-patient relationship, could represent a legitimate and ethically coherent form of self-determination. After setting out background information on fluctuating capacity, mania and advance directives, this article proposes a framework for constructing such an SBD, and considers common objections, possible solutions and suggestions for future research. (shrink)

BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving (...) understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registration: DRKS00030799. (shrink)

Background Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity (“T1 preference”) should trump a contrary preference expressed after significant cognitive decline (“T2 preference”). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants’ judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one’s future self) versus third-person (deciding for a friend or stranger) (...) perspective. -/- Methods A vignette-based survey was conducted (N = 1445 US Americans; gender-balanced sample), in a 3 (relationship: self, best friend, stranger) × 2 (T1 preference: treat, do not treat) × 2 (T2 contrary preference: ambiguous, unambiguous) design. -/- Results Participants were more likely to defer to the incapacitated T2 preference of a third-party, while being more likely to insist on following their own T1 capacitated preference. Further, participants were more likely to conclude that others with substantial cognitive decline were still their “true selves,” which correlated with increased deference to their T2 preferences. -/- Conclusions These findings add to the growing evidence that lay intuitions concerning the ethical entitlement to have decisions respected are not only a function of cognition, as would be expected under many traditional bioethical accounts, but also depend on the relationship of the decision to the decision-maker’s true self. (shrink)

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

This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed (...) to examine health professionals’ understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents’ profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD’s improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations. (shrink)

This book offers a new perspective on advance directives through a combined legal, ethical and philosophical inquiry. In addition to making a significant and novel theoretical contribution to the field, the book has an interdisciplinary and international appeal. The book will help academics, healthcare professionals, legal practitioners and the educated reader to understand the challenges of creating and implementing advance directives, anticipate clinical realities, and preparing advance directives that reflect a higher degree of assurance in terms of (...) implementation. (shrink)

Advance directives are critically important for capable individuals who wish to avoid the burdens of life-prolonging interventions in the advanced stages of dementia. However, this paper will argue that advance directives should have less application to questions about feeding patients during the clinical course of dementia than often has been presumed. The argument will be framed within the debate between Ronald Dworkin and Rebecca Dresser regarding the moral authority of precedent autonomy to determine an individual’s future end-of-life care (...) plan. We will use a brief analysis of the positions taken in two important papers that come out of the Dworkin/Dresser debate and a hypothetical patient, John, who will be followed from diagnosis of dementia to death, to show how advance directives should apply to key points in the progression of his disease, particularly in relation to food and nutrition. (shrink)

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the implementation of (...) clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. (shrink)

The purpose of this prospective study was to develop a grounded theory explaining the process that family decision makers use to make care decisions with or for a family member with advanced cancer. Adult surrogate decision makers were recruited for multiple interviews over the patient’s care trajectory: 40 surrogates provided 80 semi-structured interviews. Analysis of these narratives revealed a process of responsive care management that is inclusive of, but not limited to, decision-making roles. Monitoring, buffering, and taking over comprise (...) the three phases of the process. Decision making was embedded within the family member’s broader relational and care responsibilities. (shrink)

ObjectivesTo investigate which of two sources of information about an older adult’s wishes—choices made in an advance directive or proxy’s opinion—provides better insight into the older adult’s preferences measured in hypothetical clinical situations involving decisional incapacity.MethodsSecondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare (...) preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult’s answers in each of the seven scenarios.ResultsEighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios.ConclusionsFindings suggest that a directive might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.Trial registration numberISRCTN89993391; Post-results. (shrink)

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of (...) this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia. (shrink)

As the United States population ages, there is a growing group of aging, elderly, individuals who may consider "preemptive suicide"(Prado, 1998). Healthy aging patients who preemptively attempt to end their life by suicide and who have clearly expressed a desire not to have life -sustaining treatment present a clinical and public policy challenge. We describe the clinical, ethical, and medical-legal decision making issues that were raised in such a case that presented to an academic emergency department. We also review and (...) evaluate a decision making process that emergency physicians confront when faced with such a challenging and unusual situation. (shrink)

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such (...) directives. The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don’t, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, “reciprocity” is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. (shrink)

Aim: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions.Patients and methods: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes (...) concerning ventilator support, artificial nutrition and hydration , resuscitation and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated.Results: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support , ANH , DNR and hospice care . At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients .Conclusions: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making. (shrink)

In this article we summarise some previously described proposals for ethical governance of autonomous vehicles, critique them, and offer an alternative solution. Rather than programming cars to react to crash situations in the same way as humans, having humans program pre-set responses for a wide range of different potential scenarios, or applying particular ethical theories, we suggest that decisions should be made jointly between humans and cars. Given that humans lack the requisite processing capacity, and computers lack the necessary (...) ethical capacity, the medical paradigm of advance care planning can be retooled for this new context. Advance car-crash planning provides a way to combine humans’ ethical preferences with the advanced data processing capacities of computers to enable shared decision making in collision situations. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. (...) Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with (...) improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (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-...

In Decision Space: Multidimensional Utility Analysis, first published in 2001, Paul Weirich increases the power and versatility of utility analysis and in the process advances decision theory. Combining traditional and novel methods of option evaluation into one systematic method of analysis, multidimensional utility analysis is a valuable tool. It provides formulations of important decision principles, such as the principle to maximize expected utility; enriches decision theory in solving recalcitrant decision problems; and provides in particular for the cases in which an (...) expert must make a decision for a group of people. The multiple dimensions of this analysis create a decision space broad enough to accommodate all factors affecting an option's utility. The book will be of interest to advanced students and professionals working in the subject of decision theory, as well as to economists and other social scientists. (shrink)

BackgroundCurrently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation.In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008).MethodsUnder the aegis of the OEGARI (Austrian Society of (...) Anaesthesiology, Resuscitation and Intensive Care) an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation.ResultsThere were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy.ConclusionA response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward. (shrink)

News value research has contributed a great deal to the understanding of news selection. For a long time scholars focused exclusively on news selection by the media. Yet, more recent approaches — inspired by cognitive psychology — have conceptionalized news factors as relevance indicators that not only serve as selection criteria in journalism, but also guide information processing by the audience. This article examines the theoretical and methodological developments in the German research tradition and discusses selected results for newspaper and (...) television news. Its theoretical perspective focuses on the conceptionalization of news factors as either event characteristics or characteristics of the reality construction by journalists and recipients. This article explores how and why news factors affect media use and the retention of news items. Finally, this contribution's empirical perspective discusses various modifications of the assumed factors and presents methodological advancements in the measurement of news factors in selection processes. (shrink)

Mary Ann Meeker’s article admirably reminds readers that family members are involved in—or “responsively manage”—the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There’s reason to be worried, however, that one explicit aim of the article—to ease the standing anxieties that (...) many clinicians and ethicists have about the reliability of family members as proxy decision makers—will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients’ interests and the actions of professional providers.To determine whether and when such alterations are something to be concerned about, we’ll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients’ interests above those of non-patients—as Meeker’s own results suggest—any strict allegiance to such a framework may be more notional than normative—as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that. (shrink)

Background Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism - which often takes the form of a pulmonary embolism or deep vein thrombosis. The risk increases with advanced disease. Evidence based treatment is low molecular weight heparin by daily subcutaneous injection. The aim of this research is to explore the barriers for doctors in the UK when diagnosing and treating advanced cancer patients with VTE. Method Qualitative, in-depth interview study with 45 doctors. Doctors (...) were from three specialties: oncology, palliative medicine and general practice, with a mixture of senior and junior staff. Framework analysis was used. Results Doctors opinions as to whether LMWH treatment was ethically appropriate for patients who were symptomatic from VTE but at end of life existed on a shifting continuum, largely influenced by patient prognosis. A lack of immediate benefit coupled with the discomfort of a daily injection had influenced some doctors not to prescribe LMWH. The point at which LMWH injections should be stopped in patients at the end of life was ambiguous_._ Some perceived ‘overcaution’ in their own and other clinicians’ treatment of patients_._ Viewpoints were divergent on whether dying of a PE was considered a “good way to go”. The interventionalism and ethos of palliative medicine was discussed. Conclusions Decisions are difficult for doctors to make regarding LMWH treatment for advanced cancer patients with VTE. Treatment for this patient group is bounded to the doctors own moral and ethical frameworks. (shrink)

BackgroundHospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions.ObjectivesTo determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards.DesignSemi-structured interview study of the experience and process of decision making.SettingA public safety-net hospital and (...) a tertiary referral hospital in a large city in the Midwest United States.ParticipantsThe study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older.MeasurementsThe key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis.ResultsSurrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: respecting the patient’s input, using past knowledge of the patient to infer the patient’s wishes, and consider ing what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included: surrogate’s wishes as a guide, surrogate’s religious beliefs and/or spirituality, surrogate’s interests, and family consensus.ConclusionOur study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient’s autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning. (shrink)

Abstract:Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient’s conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, (...) class='Hi'>advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress. (shrink)

PurposeAdvance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions.MethodsWe recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians (...) were randomly assigned to review the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios.From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions.ResultsPatient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR).Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident).ConclusionFor simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. (shrink)

This book defends the view that any adequate account of rational decision making must take a decision maker's beliefs about causal relations into account. The early chapters of the book introduce the non-specialist to the rudiments of expected utility theory. The major technical advance offered by the book is a 'representation theorem' that shows that both causal decision theory and its main rival, Richard Jeffrey's logic of decision, are both instances of a more general conditional decision theory. The book (...) solves a long-standing problem for Jeffrey's theory by showing for the first time how to obtain a unique utility and probability representation for preferences and judgements of comparative likelihood. The book also contains a major new discussion of what it means to suppose that some event occurs or that some proposition is true. The most complete and robust defence of causal decision theory available. (shrink)

This paper discusses the philosophical argument and the application of the Triple Font Theory for moral evaluation of human acts and attempts to integrate the conceptual components of major moral theories into a systematic internally consistent decision-making model that is theoretically driven. The paper incorporates concepts such as formal and material cooperation and the Principle of Double Effect into the theoretical framework. It also advances the thesis that virtue theory ought to be included in any adequate justification of morality and (...) the need to integrate or coordinate notions of virtue into various act-oriented or principles-based ethics. The TFT offers a comprehensive and practical approach to ethical decision-making and is a useful alternative embedded in traditional wisdom. This paper provides a more general framework of the TFT than traditionally presented. Practical judgment is shown to play a constitute role in providing a guide for right action and is the “glue” that integrates the various components of the TFT. (shrink)