Patients with serious illnesses or injuries may decide to quit their medical treatment if they think paying the fees will put their families into destitution. Without treatment, it is likely that fatal outcomes will soon follow. We call this phenomenon “near-suicide”. This study attempted to explore this phenomenon by examining how the seriousness of the patient’s illness or injury and the subjective evaluation of the patient’s and family’s financial situation after paying treatment fees affect the final decision on the (...) treatment process. Bayesian Mindsponge Framework (BMF) analytics were employed to analyze a dataset of 1042 Vietnamese patients. We found that the more serious the illnesses or injuries of patients were, the more likely they were to choose to quit treatment if they perceived that paying the treatment fees heavily affected their families’ financial status. Particularly, only one in four patients with the most serious health issues who thought that continuing the treatment would push themselves and their families into destitution would decide to continue the treatment. Considering the information-filtering mechanism using subjective cost–benefit judgments, these patients likely chose the financial well-being and future of their family members over their individual suffering and inevitable death. Our study also demonstrates that mindsponge-based reasoning and BMF analytics can be effective in designing and processing health data for studying extreme psychosocial phenomena. Moreover, we suggest that policymakers implement and adjust their policies (e.g., health insurance) following scientific evidence to mitigate patients’ likelihood of making “near-suicide” decisions and improve social equality in the healthcare system. (shrink)

Patients with serious illnesses or injuries may decide to quit their medical treatment if they think paying the fees will put their families into destitution. Without treatment, it is likely that fatal outcomes will soon follow. We call this phenomenon “near-suicide”. This study attempted to explore this phenomenon by examining how the seriousness of the patient’s illness or injury and the subjective evaluation of the patient’s and family’s financial situation after paying treatment fees affect the final decision on the (...) treatment process. Bayesian Mindsponge Framework (BMF) analytics were employed to analyze a dataset of 1042 Vietnamese patients. We found that the more serious the illnesses or injuries of patients were, the more likely they were to choose to quit treatment if they perceived that paying the treatment fees heavily affected their families’ financial status. Particularly, only one in four patients with the most serious health issues who thought that continuing the treatment would push themselves and their families into destitution would decide to continue the treatment. Considering the information-filtering mechanism using subjective cost–benefit judgments, these patients likely chose the financial well-being and future of their family members over their individual suffering and inevitable death. Our study also demonstrates that mindsponge-based reasoning and BMF analytics can be effective in designing and processing health data for studying extreme psychosocial phenomena. Moreover, we suggest that policymakers implement and adjust their policies (e.g., health insurance) following scientific evidence to mitigate patients’ likelihood of making “near-suicide” decisions and improve social equality in the healthcare system. (shrink)

The question of whether a patient has insight is among the first to be considered in psychiatric contexts. There are several competing conceptions of clinical insight, which broadly refers to a patient’s awareness of their mental illness. When a patient is described as lacking insight, there are significant implications for patient care and to what extent the patient is trusted as a knower. Insight is currently viewed as a multidimensional and continuous construct, but competing conceptions of insight still lack consensus (...) on the specifics. Studies also give contradictory evidence regarding the frequency and consequences of poor insight. A number of crucial questions remain unanswered. After outlining some of the key theoretical disagreements about what insight means, I highlight ethical issues that have not received much attention in the literature. Given the conceptual ambiguities and the absence of standardised bedside tools, there are significant ethical concerns about insight assessments. I highlight two main ethical concerns, specifically that these assessments risk: marginalising patients by setting unattainable ideals for self-knowledge and minimising the patient’s own perspective on their mental health. I close with recommendations for documenting and responding to concerns about poor insight, so patients who are vulnerable to losing epistemic trust are better supported in their therapeutic relationships. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best (...) regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method’s increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of consent and ethical research in international SP studies. Since a foundational discussion of the research ethics of the method was published in 2012, a growing number of studies (...) have implemented this method to collect data on the quality of care in a variety of settings around the world. We draw from that experience to provide empirical foundations for a popular approach to ethical approval of such studies in the United States and Canada, which has been to obtain a waiver of informed consent from the health care providers who are the subjects of the research. However, the majority of studies to date have evaluated quality of care outside the U.S., requiring additional ethical consideration when partnering with international institutions. We discuss these considerations in the context of a case study from a completed SP study in South Africa, where informed consent is constitutionally protected. (shrink)

Health systems are integrating medical-legal partnerships (MLPs) into clinical care and increasingly center “complex care” patients. These patients have intersecting medical and social needs and often face systemic inequities that exacerbate their chronic health conditions. This paper describes a role for MLPs in hospital quality initiatives; examines the ethics of MLPs assisting with guardianship and institutionalization of hospital patients including marginalized groups; and advocates for MLP interventions designed to address intersectional and ethical concerns.

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and (...) protect the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

In their article, “Patients’ beliefs about deep brain stimulation (DBS) for treatment resistant depression,” Lawrence, Kaufmann, DeSilva, and Appelbaum analyze the responses of 24 psychiatric inpat...

In this paper we propose a new way of conceptualizing animals in experimentation – the animal-as-patient. Construing and treating animals as patients offers a way of successfully addressing some of the entrenched epistemological and ethical problems within a practice of animal experimentation directed to human clinical benefit. This approach is grounded in an epistemological insight and builds on work with so-called ‘pet models’. It relies upon the occurrence and characterization of analogous human and nonhuman animal diseases, where, if certain (...) criteria of homology and mechanism are met, the animal simultaneously becomes a patient and a spontaneous model of the human disease. (shrink)

Poor medication adherence in patients with a psychosis is associated with relapse. It has been proposed that outcomes might be improved by using financial incentives for treatment adherence (FITA). However, a strong moral intuition against this practice has been found. This paper examines the ethics of FITA. Three arguments are presented, which if accepted would severely restrict or even prohibit the practice. These are based on (1) “incommensurable values”, where FITA denigrates an aspect of “respect for the person”, (2) (...) “exploitation”, where unfair advantage is taken of the patient, and (3) “fairness”, where it is difficult to draw a line between those who should and should not be offered payment. A number of practical impediments are also considered. (shrink)

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into adequately (...) account the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden. (shrink)

Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers (...) and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics. (shrink)

For a few decades, patients with Parkinson's disease have been treated with intracerebral transplantations of fetal mesencephalic tissue. The results of open trials have been variable. Double blind, placebo-controlled studies have recently been started in order to further investigate the efficacy of this new medical technique. In this paper we challenge the need for sham surgery in neurotransplantation research on PD patients. Considerations regarding the research subjects' informed consent, therapeutic misconception, the integrity of the human body, and the (...) assessment of risks and benefits argue against sham surgery for patients with PD. Moreover, there is an alternative, less harmful mode of research that can provide the same or comparable scientific evidence. A plea is made for intrapatient research based on quantitative measurements of the patient's pre- and post-operative condition combined with similar research on a reference group of patients who have received the standard treatment. (shrink)

Decisions about brain surgery pose existential challenges because they are often decisions about life or death, and sometimes about possible personality changes. Therefore they require rigorous neuroethical consideration. However, we doubt whether metaphysical interpretations of ambiguous statements of patients are useful for deriving ethical and legal conclusions. Particularly, we question the application of psychological theories of personal identity on neuroethical issues for several reasons. First, even the putative “standard view” on personal identity is contentious. Second, diverse accounts of personal (...) identity have been introduced into the neuroethical debate, which are incompatible. Third, the criteria for “diagnosing” the supposed changes in “identity” are ambiguous and indeterminate. Fourth, the metaphysical theories of personal identity imply highly questionable ethical and legal revisions, namely the denial of advance directives, particularly of Ulysses contracts, and, for patients with brain cancer, even therapeutic nihilism.We discuss three examples in which ideas from the personal identity debate in metaphysics are straightforwardly applied to discuss ethical issues of neurosurgery. We discuss revisions of the current medico-legal practice that have been proposed on grounds of psychological theories of personal identity. We argue that the established status quo in law and clinical practice is beneficial to the patients concerned. Furthermore, it is metaphysically neutral, which is an important principle of liberal, democratic, pluralistic societies.We recommend a pragmatic approach: empirical research on personality changes arising from brain disorders or interventions, comprehensive information about risks of personality changes, and advance directives, particularly Ulysses contracts. (shrink)

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of (...) consent: first, how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

Moral injury occurs when a person perpetrates, bears witness to, or fails to prevent an act that transgresses their deeply held moral beliefs. The deeply held moral belief that physicians share is the oath they take when completing their lengthy training and embarking on their career: Put the needs of patients first. In today's American healthcare system, doctors, nurses, and other healthcare providers are increasingly forced to consider the demands of other stakeholders -- insurers, hospitals, even their own financial (...) security -- before the needs of their patients. Whenever they are forced to make a decision that contravenes their patient's best interest, they feel a sting of moral injustice. Over time, these repetitive insults amass into moral injury. Moral injury and its causes help explain why healthcare workers started leaving the field in droves long before the COVID-19 pandemic exposed weaknesses in the US system, why a rich country has such poor outcomes in certain categories, why there is a shortage of young doctors training for critical areas, and why patients feel so frustrated. In If I Betray These Words, Wendy Dean explores and exposes the impacts of moral injury through vividly told stories that are at once bewildering and eye-opening. Her book serves as a roadmap through a healthcare landscape that can be confounding, and at times even hellish, for those who must navigate it, and it suggest alternative routes for healers and their patients. (shrink)

Last year saw the 20th anniversary edition of JECP, and in the introduction to the philosophy section of that landmark edition, we posed the question: apart from ethics, what is the role of philosophy ‘at the bedside’? The purpose of this question was not to downplay the significance of ethics to clinical practice. Rather, we raised it as part of a broader argument to the effect that ethical questions – about what we should do in any given situation – are (...) embedded within whole understandings of the situation, inseparable from our beliefs about what is the case, what it is that we feel we can claim to know, as well as the meaning we ascribe to different aspects of the situation or to our perception of it. Philosophy concerns fundamental questions: it is a discipline requiring us to examine the underlying assumptions we bring with us to our thinking about practical problems. Traditional academic philosophers divide their discipline into distinct areas that typically include logic: questions about meaning, truth and validity; ontology: questions about the nature of reality, what exists; epistemology: concerning knowledge; and ethics: how we should live and practice, the nature of value. Any credible attempt to analyse clinical reasoning will require us to think carefully about these types of question and the relationships between them, as they influence our thinking about specific situations and problems. So, the answers to the question we posed, about the role of philosophy at the bedside, are numerous and diverse, and that diversity is illustrated in the contributions to this thematic edition. (shrink)

This article aims to foreground alcohol abuse by cancer patients and explore how alcohol abuse functions as a biographic master motive and at the same time is a shadow side in the oncological field and research. The research is based on a single case study which draws on empirical material from interviews, field notes and staff policy, with analysis using Bourdieu’s concepts of trajectory of life and habitus. The findings show that the cancer patient’s alcohol abuse is an important (...) part of the trajectory of his private life and spare time. In social life with family and friends alcohol is given and normal and acts as a socialisator. Alcohol abuse provides both stability and instability in the cancer patient’s life. When cancer results in work breaks and retirement, and spare time often is used as drinking time, then all daily life becomes drinking time for the cancer patient. Alcohol is often a hidden abuse at the working place and in the oncological field. In meetings with healthcare professionals, the patient chooses not to speak about his alcohol abuse to avoid further medicalisation. The challenge for the healthcare professionals is to see and accept alcohol abusers with cancer and their social lives without always trying to change their ‘unhealthy’ lifestyles. (shrink)

BackgroundIn the early stages of the COVID-19 pandemic, many health systems, including those in the UK, developed triage guidelines to manage severe shortages of ventilators. At present, there is an insufficient understanding of how the public views these guidelines, and little evidence on which features of a patient the public believe should and should not be considered in ventilator triage.MethodsTwo surveys were conducted with representative UK samples. In the first survey, 525 participants were asked in an open-ended format to provide (...) features they thought should and should not be considered in allocating ventilators for COVID-19 patients when not enough ventilators are available. In the second survey, 505 participants were presented with 30 features identified from the first study, and were asked if these features should count in favour of a patient with the feature getting a ventilator, count against the patient, or neither. Statistical tests were conducted to determine if a feature was generally considered by participants as morally relevant and whether its mean was non-neutral.ResultsIn Survey 1, the features of a patient most frequently cited as being morally relevant to determining who would receive access to ventilators were age, general health, prospect of recovery, having dependents, and the severity of COVID symptoms. The features most frequently cited as being morally irrelevant to determining who would receive access to ventilators are race, gender, economic status, religion, social status, age, sexual orientation, and career. In Survey 2, the top three features that participants thought should count in favour of receiving a ventilator were pregnancy, having a chance of dying soon, and having waited for a long time. The top three features that participants thought should count against a patient receiving a ventilator were having committed violent crimes in the past, having unnecessarily engaged in activities with a high risk of COVID-19 infection, and a low chance of survival.ConclusionsThe public generally agreed with existing UK guidelines that allocate ventilators according to medical benefits and that aim to avoid discrimination based on demographic features such as race and gender. However, many participants expressed potentially non-utilitarian concerns, such as inclining to deprioritise ventilator allocation to those who had a criminal history or who contracted the virus by needlessly engaging in high-risk activities. (shrink)

Background Hip fracture repair surgery carries a certain mortality risk, yet evidence suggests that orthopedic surgeons often refrain from discussing this issue with patients prior to surgery. Aim This study aims to examine whether orthopedic surgeons raise the issue of one-year post-surgery mortality before hip fracture repair surgery and to explore factors influencing this decision. Method The study employs a cross-sectional design, administering validated digital questionnaires to 150 orthopedic surgeons. Results A minority of orthopedic surgeons reported always informing (...) class='Hi'>patients about the risk of mortality in the year following hip fracture surgery. The main reasons for not discussing this risk were a desire to avoid frightening patients, time constraints, and concerns about undermining patient hope. Orthopedic surgeons reported a medium-high level of perceived self-efficacy, with higher self-efficacy associated with a reduced likelihood of discussing one-year mortality risk. Conversely, older age and holding a specialist status in orthopedic surgery were associated with an increased likelihood of discussing this risk with patients. Conclusions These findings suggest a need for interventions to address communication barriers and ensure consistent provision of essential information to patients undergoing hip fracture surgery. Additionally, they highlight the importance of considering individual factors such as self-efficacy, age, and expertise in designing strategies to improve patient-provider communication in orthopedic care settings. Trial registration : The study doesn`t report the results of a health care intervention. (shrink)

ZusammenfassungDie jüngste höchstrichterliche Rechtsprechung zur Selbstbestimmung der Patienten und zur Normierung medizinischer Handlungen am Lebensende hat eine intensive Debatte ausgelöst. Das Urteil und die akademisch vorgetragene Kritik werden einer grundlegenden medizinethischen Analyse unterworfen. Sie betrifft die objektive Eingrenzung der Zulässigkeit einer Behandlungsbegrenzung und die Subsumtion des Wachkomas als irreversibel tödliches Grundleiden, das ärztliche Ermessen bei der Indikationsstellung, die normative Einordnung einer Ernährungstherapie am Lebensende und die Verbindlichkeit von Patientenverfügungen. Die medizinethische Kritik offenbart eine unzureichende Wahrnehmung medizinischer und medizinethischer professioneller Dokumente (...) und den Rückgriff auf medizinethisch veraltete Konzeptionen der Sterbehilfe durch das Gericht. Die Folge ist eine fehlerhafte Subsumtion der Wachkomapatienten in die Kategorie irreversibel tödlicher Erkrankungen und eine inhaltliche Schwächung der Verbindlichkeit von Patientenverfügungen. Beides bedarf dringend der Korrektur. (shrink)

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a multidimensional (...) and continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making. (shrink)

Can we draw substantive conclusions about the reasons for action agents have from premisses about the desires of their idealized counterparts? The answer is that we can. The argument for this conclusion is Rawlsian in spirit, focusing on the choices that our idealized counterparts must make simply in virtue of being ideal, and inferring from these choices the contents of the desires that they must have. It turns out that our idealized counterparts must have desires in which we ourselves figure (...) as both agents and patients, and in which others must figure too, though only as patients. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges of (...) professional ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland]. Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

BackgroundResearchers currently are not obligated to share individual research results with participants. This non-disclosure policy has been challenged on the basis of participants’ rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.MethodAs a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment. Participants (...) had the option to receive their brain amyloid PET scan result. Interviews were conducted before they received their IRR.ResultsA total of 38 aMCI patients wanted to know their IRR. The two most frequently mentioned reasons for choosing IRR disclosure were to better understand their brain health status and to be better able to make informed decisions about future personal arrangements. Emotional risk was mentioned as the primary disadvantage of knowing one’s IRR. On the other hand, non-disclosure was considered to be emotionally difficult also, as patients would be uncertain about their future health condition.ConclusionsMany patients diagnosed clinically with aMCI want to know their brain amyloid test results, even though this knowledge may be disadvantageous to them. Knowing what is going on with their health and the ability to make informed decisions about their future were the two principal advantages mentioned for obtaining their amyloid PET results. Because of the overwhelming consensus of aMCI patients was to disclose their brain amyloid PET scan results, researchers should strongly consider releasing this information to research subjects. (shrink)

Objective: To gain insight into the standards of rationality that physicians use when evaluating patients’ treatment refusals.Design of the study: Qualitative design with indepth interviews.Participants: The study sample included 30 patients with cancer and 16 physicians . All patients had refused a recommended oncological treatment.Results: Patients base their treatment refusals mainly on personal values and/or experience. Physicians mainly emphasise the medical perspective when evaluating patients’ treatment refusals. From a medical perspective, a patient’s treatment refusal based (...) on personal values and experience is generally evaluated as irrational and difficult to accept, especially when it concerns a curative treatment. Physicians have a different attitude towards non-curative treatments and have less difficulty accepting a patient’s refusal of these treatments. Thus, an important factor in the physician’s evaluation of a treatment refusal is whether the treatment refused is curative or non-curative.Conclusion: Physicians mainly use goal oriented and patients mainly value oriented rationality, but in the case of non-curative treatment refusal, physicians give more emphasis to value oriented rationality. A consensus between the value oriented approaches of patient and physician may then emerge, leading to the patient’s decision being understood and accepted by the physician. The physician’s acceptance is crucial to his or her attitude towards the patient. It contributes to the patient’s feeling free to decide, and being understood and respected, and thus to a better physician–patient relationship. (shrink)

The author describes an alternative approach that careproviders may want to consider when caring for patients who request interventions that careproviders see as futile. This approach is based, in part, on findings of recent neuroimaging research. The author also provides several examples of seemingly justifiable “paternalistic omissions,” taken from articles in this issue of The Journal of Clinical Ethics (JCE). The author suggests that while careproviders should always give patients and their loved ones all potentially relevant information regarding (...) “futile” decisions, careproviders may wish to consider, paradoxically, not giving advice in these situations, when the advice is based mostly or wholly on their own moral views, based on this same, ethical rationale. (shrink)

ObjectiveHead and neck cancer treatments are known to significantly affect functionality and appearance, leading to an increased risk for body image disturbances. Yet, few longitudinal studies exist to examine body image in these patients. Based on a conceptual model, the current study aimed to determine, in patients newly diagnosed with HNC: the prevalence, level, and course of body image concerns; correlates of upon cancer diagnosis body image concerns; predictors of immediate post-treatment body image concerns; and association between body (...) image concerns and levels of anxiety, depression, suicidal ideation, support, and alcohol and drug misuse.MethodsTwo hundred and twenty-three, newly diagnosed with a primary HNC were assessed using structured clinical interviews and psychometric measures at three, and 6 months after diagnosis. Primary outcome was 3-month, as it was most salient to body image disturbance. Multiple linear regression analyses were conducted on the potential body image predictors, based on the model.ResultsSixty-eight percent of patients with HNC presented some level of body image concerns. Body image concerns at baseline and post-treatment were significantly related and significantly increased from pre- to post-treatment. Immediately post-treatment, 89% presented some level of body image concerns. Correlates of body image concerns in patients with HNC at baseline included: physical symptom burden, difficulties with communication and eating, coping with the cancer diagnosis using denial, suicidal ideation, and having had a past anxiety diagnosis. When controlling for sociodemographic and medical variables, body image concerns in patients with HNC in the immediate post-treatment were predicted by: baseline body image, physical symptom burden, and neuroticism.ConclusionThis longitudinal study helps identify patients more susceptible to experience body image disturbance following head and neck cancer. Clinicians ought to pay special attention to body image concerns upon cancer diagnosis, physical symptom burden, and neuroticism, and may want to target these factors in future preventive interventions. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main (...) outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

While online medical consultations have become increasingly popular, not least in times when epidemics make access to medical facilities difficult, research exploring the interactive value of OMC is still in its infancy. This study examines patients’ disalignment with speculative diagnosis and its management by doctors in OMC interactions, which to my best knowledge are not examined. From a discourse analytic perspective, this study adopts Du Bois’s notion of stance-taking to approach text-based interactions collected from a widely used OMC website (...) in China. This study finds that patients’ disalignment is often based on hard evidence, which is different from the major findings of previous studies. When addressing such disalignment, doctors adopt varied discursive strategies, which are hardly mentioned in prior studies, in particular, strategies that address the affective aspect of patients’ disalignment. This study thus provides a different perspective on disalignment and its management in the clinical context. (shrink)

Personal health technologies such as apps and wearables that generate health and behavior data close to the individual patient are envisioned to enable personalized healthcare - and self-care. And yet, they are consumer devices. Proponents of these devices presuppose that measuring will be helpful, and that data will be meaningful. However, a growing body of research suggests that self-tracking data does not necessarily make sense to users. Drawing together data studies and digital health research, we aim to further research on (...) data ambivalence, a term we use to refer to the ambiguities and uncertainties people experience when interpreting their own data, as well as the critical obligation towards cultivating ethically sound uses and responses to such data in context. We develop the relationship between data, interpretation, and context as a central theoretical and practical problem in the datafication of healthcare. We then show how interpretation and context matter for data ambivalence through an empirical study of heart patients with an implanted advanced pacemaker who were offered a Fitbit wristband for self-tracking as part of a research project. We argue that the hope, anxiety, and doubt connected to the promise and accuracy of data are tempered by the context and purpose of self-tracking, and by individual circumstances. Finally, we link the findings on context-sensitivity in data interpretation to questions about response-ability in cloud-based care infrastructures. We discuss the ethical dilemmas associated with the use of commercial wellness-technologies in healthcare, and with researching such emerging practices. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing (...) the impact of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

Abstract:The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making capacity (...) in patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments. (shrink)

We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, (...) translated and fully anonymized. Thematic analysis was applied in order to examine stable patients’ attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients’ views on synthetic biology and into the kind of fears triggered by the term “synthetic biology.” Our results show that clear and concrete information can change patients’ initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology. (shrink)

Ethnic minority patients face challenges concerning communication and are at higher risk of experiencing health problems and consuming fewer healthcare services. They are also exposed to disparaging societal discourses about migrants which might undermine healthcare institutions’ ambitions of equitable health care. Therefore, healthcare professionals need to critically reflect on their practices and processes related to ethnic minority patients. The aim of this article is to explore healthcare professionals’ experiences of working with ethnic minority patients by using the (...) critical incident (CI) technique. In two focus group sessions, participants discussed challenging events in their encounters with patients. The critical incidents show that healthcare professionals may experience unfamiliar situations related to their work performance, prejudice toward patients, and labeling by patients the professionals do not identify with. The professionals’ reflections are discussed in relation to social discourses on migration and their work conditions, and the possible influence on the professionals’ preconceptions and the patient–professional relationship in health care. Reflections about work experiences with ethnic minority patients and aligned societal discourses should be included in healthcare workers’ professional development. Critical incident reflections at work may contribute to better‐coping strategies for healthcare professionals and improved patient–professional relationships with ethnic minority patients. (shrink)

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

For the past 45 years a passionate debate has been going on about whether doctors should be allowed or forbidden to bring their consciences—defined as their religious beliefs and moral convictions—into the exam room.1 Focusing explicitly or implicitly on abortion and assisted suicide, this debate has made it almost impossible to talk about conscience in a broader way. And yet it is critical to do so today, as huge corporations take over medicine and, with it, power over doctors' actions.Here, then, (...) I will explore "conscience" in a different way, not as a set of religious beliefs or moral convictions, but as I experience it, as an inner sense of rightness and falseness. My argument will be that to not heed that... (shrink)

The objective of this paper is to describe the organization and modality of provision of clinical psychology services for those patients who had to be hospitalized due to COVID-19 during the pandemic in Northern Italy. The IRCCS Policlinico San Donato hospital in Milan was converted into a COVID-19 center in March 2020, and all the staff, including the Clinical Psychology Service Team, were diverted to assist these patients. A description is given of how the service was organized and (...) the modalities which were utilized to assist the patients. Following the pertinent ministerial decrees, guidelines, and relevant literature, the patients were followed up through telehealth. A COVID-19 rehabilitation unit was later opened in April 2020, where all patients were seen and followed up by the Clinical Psychology team, the last patient being discharged at the end of June. Details are given about the type of services provided during the hospitalization at the different points in time. At admittance and subsequent isolation, patients indicated by the medical and nursing staff, and those who specifically requested it, were given psychological support. Patients transferred to the COVID-19 rehabilitation unit were all evaluated for anxiety, depression, posttraumatic stress disorder, and sleep disorders both on admission and at discharge when possible. (shrink)

Multiple sclerosis significantly affects how patients maintain the resources they consider important. The aim of this paper is to describe the moderation effect of time since diagnosis on the evaluation of resources by patients with multiple sclerosis, on the basis of S.E. Hobfoll’s Conservation of Resources theory. The study was conducted using paper and pencil methods and involved 77 patients, of whom 32 received their diagnosis less than four years ago, and 45 more than four years ago. (...) The patients’ resource evaluation was investigated using the Polish adaptation of the COR questionnaire. Patients who received their diagnosis more than four years ago were more likely to consider vital and spiritual resources to be more important. In patients diagnosed less than four years ago, the loss of economic, political, and vital resources was significant. It is shown moderation effect of time since diagnosis. The results may for the basis for further research. (shrink)

Patients with borderline personality disorder sometimes request to be admitted to hospital under compulsory care, often under the argument that they cannot trust their suicidal impulses if treated voluntarily. Thus, compulsory care is practised as a form of Ulysses contract in such situations. In this normative study we scrutinize the arguments commonly used in favour of such Ulysses contracts: the patient lacking free will, Ulysses contracts as self-paternalism, the patient lacking decision competence, Ulysses contracts as a defence of the (...) authentic self, and Ulysses contracts as a practical solution in emergency situations. In our study, we have accepted consequentialist considerations as well as considerations of autonomy. We conclude that compulsory care is not justified when there is a significant uncertainty of beneficial effects or uncertainty regarding the patient’s decision-making capacity. We have argued that such uncertainty is present regarding BPD patients. Hence, Ulysses contracts including compulsory care should not be used for this group of patients. (shrink)

How can clinical ethics consultants best assist patients and their family members when patients may be dying? In this introduction, I consider this concern in light of four articles that appear in this issue of The Journal of Clinical Ethics, by Jeffrey T. Berger; Mary T. White; Linying Hu, Xiuyun Yin, Xiaolei Bao, and Jin-Bao Nie; and Thaddeus Mason Pope and Melinda Hexum.Patients and family members experience extreme stress at the end of life, a high-stakes situation in (...) which few of us have extensive experience. This stress can make us less able to process new information, cripple decision making, and even lead to long-term harm.I provide a number of practical approaches that clinical ethics consultants can use to help patients and family members in these situations, so that their decisions may reflect more what they really want and so that, after this stress has diminished, they may then do better. (shrink)

In France, the Kouchner law of 2002 has allowed for a rethinking of patients’ rights; as well, it introduced the notion of health democracy. For example, in oncology, advocacy groups for patients and ex-patients now provide support and information to patients, representation of patients in health care institutions and state agencies, education to caregivers, and opportunities for participation in research. In fact, such advocacy groups have been so impactful that some patients have gone on (...) to work in the health care system itself; it is this rise in professionalism that is of interest in this article, where we will discuss the first results of two ongoing research projects on the subject. (shrink)