ASPEN international survey on ethical competencies dealing with decision-making in the use of artificially administered nutrition and hydration and competency application in clinical practice.

BACKGROUND: Ethical competencies dealing with decision-making for clinicians involved in artificially administered nutrition and hydration (AANH) have not been defined in the literature. Although clinical assessments identify nutrition needs and appropriate routes of nutrition administration, an assessment of the ethical, cultural, and spiritual implications of the medical nutrition therapy may be overlooked. METHODS: Eleven competency statements were developed by members of two international sections of the American Society for Parenteral and Enteral Nutrition. This descriptive cross-sectional survey study was conducted to measure the importance of the competency statements to the membership of two sections using a five-point Likert scale of 1-5 (1-low to 5-high). RESULTS: A total of 113 responses (12.5% response rate) were obtained predominantly from physicians and dietitians from 25 countries. There was a wide range of world regions of the 49% respondents outside of the United States. Means and SDs were calculated for agreement with the 11 competency statements with overall means ranging from 4.32 to 4.67. Most of the participants cared for adult/older adult patients (63.7%) exclusively, and 12.4% cared for pediatric/neonate patients exclusively; the remainder (23.9%) cared for both populations. Respondents reported they were either experienced, competent, or expert (88.6%) in dealing with ethical issues related to AANH. CONCLUSION: This international interdisciplinary group agreed that the integration of ethical, cultural, and spiritual competencies into clinical decision-making regarding artificially AANH is important.

Impact of inpatient self-efficacy and trust in physicians on inpatient satisfaction with medical services: the mediating role of patient participation in medical decision-making.

Objective: Patient satisfaction reflects the social benefits of hospitals and is an important indicator of hospital performance. This study explores the mechanism through which inpatients' trust in physicians, self-efficacy, and participation in medical decision-making impact their satisfaction with medical services. Methods: A questionnaire was administered to 814 inpatients in 10 randomly selected tertiary hospitals and 10 randomly selected secondary hospitals in Hangzhou, China. A correlation analysis and hierarchical linear regression were conducted to analyze the factors influencing inpatient satisfaction. Results: The outcome measures of trust in physicians and participation in medical decision-making behaviors had significant positive effects on inpatient satisfaction.Trust in physicians was shown to directly influence inpatient satisfaction, while inpatient participation in decision-making partially mediated this relationship. Inpatient participation in medical decision-making fully mediated the relationship between self-efficacy and inpatient satisfaction. Conclusion: While inpatients were relatively satisfied, there is room for improvement. Healthcare providers should improve patient trust by actively listening to their needs and providing feedback, establishing effective communication mechanisms. Patient self-efficacy can be enhanced through health education, special lectures, and case sharing. Patients should also be encouraged to actively participate in medical decision-making. Practical implications: Based on inpatient feedback during a preliminary survey, we refined this study's questionnaire to enhance its feasibility for future research. This article shares key findings for healthcare managers and providers, advising that patient satisfaction can be enhanced through trust, self-efficacy, and participation.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients Under Guardianships.

Palliative care clinicians often help facilitate coordination of care, complex serious illness, and end-of-life medical decision-making. However, the clinical and legal issues related to guardianship can complicate the decision-making process, care delivery, outcomes, and the role of the palliative care clinician. Adult patients who have a guardian have been found by a court to be unable to make some or all decisions for themselves. Providing care for patients under guardianship is where medicine overlaps with legal rights. It is crucial to be familiar with the patients' rights and the guardians' responsibilities to clarify medical decision-making processes and identify necessary authorities. This article uses an interprofessional approach to leverage the expertise of physicians, nurses, lawyers, and guardians and to guide palliative care clinicians to optimally support patients under guardianship.

Time preference shifts in medical decision-making after serious illness.

This study explores the impact of serious illnesses, such as cancer, on patients' time preferences in medical decision-making. Specifically, we assess how patients value extending their lifespan by one year under varying survival prognoses through three experimental studies. The findings reveal that patients exhibit a higher Subjective Discount Rates (SDR) in their medical decisions after a serious illness diagnosis. Notably, this difference in individual health also affects the time preferences of their family members. Additionally, the subjective contextual setting of the illness can also increase an individual's SDR levels. The research highlights a tendency for patients and families facing a potential short life expectancy to focus more on immediate concerns, leading to potentially shortsighted and irrational medical choices. This behavior often results in regret during the end-of-life stage. These insights are vital for healthcare professionals in optimizing treatment plans and for policymakers in understanding patient behaviors more comprehensively. The study emphasizes the need for considering psychological and behavioral changes in patients grappling with severe health challenges.

Scenario analysis and multi-criteria decision analysis to explore alternative reimbursement pathways for whole genome sequencing for blood cancer patients.

BACKGROUND: Whole genome sequencing (WGS) has transformative potential for blood cancer management, but reimbursement is hindered by uncertain benefits relative to added costs. This study employed scenario planning and multi-criteria decision analysis (MCDA) to evaluate stakeholders' preferences for alternative reimbursement pathways, informing future health technology assessment (HTA) submission of WGS in blood cancer. METHODS: Key factors influencing WGS reimbursement in blood cancers were identified through a literature search. Hypothetical scenarios describing various evidential characteristics of WGS for HTA were developed using the morphological approach. An online survey, incorporating MCDA weights, was designed to gather stakeholder preferences (consumers/patients, clinicians/health professionals, industry representatives, health economists, and HTA committee members) for these scenarios. The survey assessed participants' approval of WGS reimbursement for each scenario, and scenario preferences were determined using the geometric mean method, applying an algorithm to improve reliability and precision by addressing inconsistent responses. RESULTS: Nineteen participants provided complete survey responses, primarily clinicians or health professionals (n = 6; 32 %), consumers/patients and industry representatives (both at n = 5; 26 %). "Clinical impact of WGS results on patient care" was the most critical criterion (criteria weight of 0.25), followed by "diagnostic accuracy of WGS" (0.21), "cost-effectiveness of WGS" (0.19), "availability of reimbursed treatment after WGS" (0.16), and "eligibility criteria for reimbursed treatment based on actionable WGS results" and "cost comparison of WGS" (both at 0.09). Participants preferred a scenario with substantial clinical evidence, high access to reimbursed targeted treatment, cost-effectiveness below $50,000 per quality-adjusted life year (QALY) gained, and affordability relative to standard molecular tests. Reimbursement was initially opposed until criteria such as equal cost to standard tests and better treatment accessibility were met. CONCLUSION: Payers commonly emphasize acceptable cost-effectiveness, but strong clinical evidence for many variants and comparable costs to standard tests are likely to drive positive reimbursement decisions for WGS.

Do Reasons Matter? Navigating Parents' Reasons in Healthcare Decisions for Children.

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it's widely acknowledged that parents' reasons may matter pragmatically; attending to parents' reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents' reasons are irrelevant to whether a decision is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents' reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by 'reasons.' Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents' reasons matter ethically in several ways. We call for further research on the role of parents' reasons in clinical ethics deliberation.

The Ethical Complexity of Medical Decision Making in the Adolescent Oncology Patient.

Adolescent Medical Decision Making (aMDM) is frequently discussed but presents a significant challenge in practice, especially in cases of adolescents with life threatening or life limiting illnesses. In this paper, we present a case that explores the importance of aMDM, the difficulties for providers when engaging adolescents in these discussions, and how certain skills may be incorporated into pediatric practice. Literature suggests that patients of this age group, while being legally without capacity, have meaningful insights into their care. However, unless physicians feel comfortable and competent engaging adolescents in a manner that honors their developmentally appropriate understanding of their illness, these insights can be lost.

Mapping Medical Context: Workshop-Driven Clustering of Influencing Factors on Medical Decision-Making.

Clinical decision support systems (CDSS) can efficiently support doctors in coping with ever-increasing amounts of data by providing evidence-based recommendations for medical decisions. To integrate the systems into the medical workflow and provide patient-specific recommendations for action in the context of personalized medicine, it is essential to tailor the systems to the context of use. This study aims to present an overview of factors influencing medical decision-making that CDSS must consider. Our approach involves the systematic identification and categorization of contextual factors relevant to medical decision-making. Through extensive literature research and a structured card-sorting workshop, we systematized 774 context factors and mapped them into a model. This model includes six primary entities: the treating physician, the patient, the patient's family, disease treatment, the physician's institution, and professional colleagues, each with their relevant context categories. The developed model could serve as a foundation for communication between developers and physicians, supporting the creation of more context-sensitive CDSS in the future. Ultimately, this could enhance the utilization of CDSS and improve patient care.

Anecdotes impact medical decisions even when presented with statistical information or decision aids.

People are inundated with popular press reports about medical research concerning what is healthy, get advice from doctors, and hear personal anecdotes. How do people integrate conflicting anecdotal and statistical information when making medical decisions? In four experiments (N = 4126), we tested how people use conflicting information to judge the efficacy of artificial and real medical treatments. Participants read an anecdote from someone in a clinical trial, or who had undergone a medical treatment previously, for whom the medical treatment was ineffective. We found that reading anecdotes for either artificial or real medical treatments shifted participants' beliefs about the efficacy of a medical treatment. We observed this result even when the anecdote was uninformative, was paired with an icon array, or when participants were provided with thorough medical decision aids about reproductive health procedures. Our findings highlight the pervasive effect of anecdotes on medical decision making.

A Community-Guided Approach to Bronchiolitis: A Needs Assessment and Illness Perception Study.

The factors influencing caregivers' understanding of pediatric respiratory diseases, such as bronchiolitis, can guide patient care and the acceptability of treatment methods within the healthcare system. This study aims to identify illness perceptions and perform a needs assessment among caregivers of children diagnosed with respiratory diseases. This is a prospective, cross-sectional, questionnaire-driven study of a representative sample of caregivers whose children had an acute respiratory illness. The telephone-administered questionnaire was comprised of (1) demographic items; (2) illness perception questionnaire-revised (IPQ-R); and (3) items about personal barriers, the latter 2 of which employed a 5-point Likert response. Cronbach's alpha (α) was used to measure the internal consistency reliability for each item within the IPQ-R. The Pearson 2-tailed correlation coefficient was used to correlate questionnaire items. We included 75 caregivers whose children have been diagnosed with bronchiolitis (51%), reactive airway disease (RAD) (35%), asthma (33%), and wheezing (44%). We found no significance between the child's diagnosis and the site of recruitment. The most important components of the illness perception were illness coherence (α=0.849), psychological attributions (α=0.903), and barriers to diagnosis (α=0.633). Understanding caregivers' perceptions of respiratory diseases will lead to better treatment acceptance. We must clarify the terms used to define bronchiolitis from viral-induced wheezing, RAD, and the first asthma episode in older infants. Identifying caregivers' gaps in knowledge will help establish a cohesive approach to personalized treatment of respiratory diseases in children and their diagnosis.

Second opinion machine learning for fast-track pathway assignment in hip and knee replacement surgery: the use of patient-reported outcome measures.

BACKGROUND: The frequency of hip and knee arthroplasty surgeries has been rising steadily in recent decades. This trend is attributed to an aging population, leading to increased demands on healthcare systems. Fast Track (FT) surgical protocols, perioperative procedures designed to expedite patient recovery and early mobilization, have demonstrated efficacy in reducing hospital stays, convalescence periods, and associated costs. However, the criteria for selecting patients for FT procedures have not fully capitalized on the available patient data, including patient-reported outcome measures (PROMs). METHODS: Our study focused on developing machine learning (ML) models to support decision making in assigning patients to FT procedures, utilizing data from patients' self-reported health status. These models are specifically designed to predict the potential health status improvement in patients initially selected for FT. Our approach focused on techniques inspired by the concept of controllable AI. This includes eXplainable AI (XAI), which aims to make the model's recommendations comprehensible to clinicians, and cautious prediction, a method used to alert clinicians about potential control losses, thereby enhancing the models' trustworthiness and reliability. RESULTS: Our models were trained and tested using a dataset comprising 899 records from individual patients admitted to the FT program at IRCCS Ospedale Galeazzi-Sant'Ambrogio. After training and selecting hyper-parameters, the models were assessed using a separate internal test set. The interpretable models demonstrated performance on par or even better than the most effective 'black-box' model (Random Forest). These models achieved sensitivity, specificity, and positive predictive value (PPV) exceeding 70%, with an area under the curve (AUC) greater than 80%. The cautious prediction models exhibited enhanced performance while maintaining satisfactory coverage (over 50%). Further, when externally validated on a separate cohort from the same hospital-comprising patients from a subsequent time period-the models showed no pragmatically notable decline in performance. CONCLUSIONS: Our results demonstrate the effectiveness of utilizing PROMs as basis to develop ML models for planning assignments to FT procedures. Notably, the application of controllable AI techniques, particularly those based on XAI and cautious prediction, emerges as a promising approach. These techniques provide reliable and interpretable support, essential for informed decision-making in clinical processes.

The role of the radiologist in the prostate cancer multidisciplinary conference.

The broad range of disease aggressiveness together with imperfect screening, diagnostic, and treatment options in prostate cancer (PCa) makes medical decision-making complex. The primary goal of a multidisciplinary conference is to improve patient outcomes by combining evidence-based data and expert opinion to discuss optimal management, including for those patients with challenging presentations. The primary purpose of the genitourinary imaging specialist in the prostate cancer multidisciplinary conference is to use imaging findings to reduce uncertainty by answering clinical questions. In this review, we discuss the role and the opportunities for an imaging specialist to add value in the care of men with prostate cancer discussed at multidisciplinary conferences.

Cognitive biases in pediatric cardiac care.

Medical practitioners are entrusted with the pivotal task of making optimal decisions in healthcare delivery. Despite rigorous training, our confidence in reasoning can fail when faced with pressures, uncertainties, urgencies, difficulties, and occasional errors. Day-to-day decisions rely on swift, intuitive cognitive processes known as heuristic or type 1 decision-making, which, while efficient in most scenarios, harbor inherent vulnerabilities leading to systematic errors. Cognitive biases receive limited explicit discussion during our training as junior doctors in the domain of paediatric cardiology. As pediatric cardiologists, we frequently confront emergencies necessitating rapid decision-making, while contending with the pressures of stress, fatigue, an earnest interest in "doing the right thing" and the impact of parental involvement. This article aims to describe cognitive biases in pediatric cardiology, highlighting their influence on therapeutic interventions for congenital heart disease. Whether future pediatric cardiologists or experienced professionals, understanding and actively combating cognitive biases are essential components of our ongoing medical education. Furthermore, it is our responsibility to thoroughly examine our own practices in our unwavering commitment to providing high-quality care.

Attitudes toward and preparedness for lung transplantation among individuals with cystic fibrosis in the era of highly effective modulators.

BACKGROUND: Outcomes for individuals with cystic fibrosis (CF) have improved due to highly effective modulator therapy (HEMT). However, lung transplant (LTx) remains an important treatment for people with advanced lung disease. This study assessed attitudes and knowledge about LTx in the HEMT era. METHODS: All patients from the University of Washington CF clinic were surveyed March 25-May 30, 2020. Questions addressed self-rated LTx preparedness and knowledge, as well as barriers and facilitators to discussing LTx. Demographic and clinical data were extracted from the electronic health record. RESULTS: There were 159/224 (71%) responses. Respondents had a median forced expiratory volume in one second (FEV1) of 70%, and 142 (89%) were on modulatory therapy. One hundred thirteen (71%) respondents felt that it was moderately or very important to be prepared to make decisions about LTx, though only 56 (35%) felt moderately or very prepared. Only 83 (30%) and 47 (52%) participants correctly answered questions about life expectancy and improved quality of life after LTx, respectively. Respondents with Medicaid insurance less frequently answered questions correctly. The most common barriers to discussing LTx were fear of being a burden on loved ones for 58 respondents (36%) and cost of LTx for 46 (29%). Most participants (94%) trusted their CF doctor, and 75% of participants selected trust as a facilitator for LTx discussions. CONCLUSIONS: Many individuals with CF, especially those with lower socioeconomic status, lacked knowledge and did not feel very prepared for decisions about LTx. Earlier education and discussions about LTx represent an area for improvement in CF care.

It's a spiral staircase, not just two steps: An iterative approach to assessing patient capacity for medical decision-making.

The assessment of medical decision-making capacity as part of the process of clinical informed consent has been considered a bioethical housekeeping matter for decades. Yet in practice, the reality bears little resemblance to what is described in the medical literature and professed in medical education. Most literature on informed consent refers to medical decision-making capacity as a precondition to the consent process. That is, a clinician must first determine if a patient has capacity, and only then may the clinician engage with the patient for the rest of informed consent. The problem with this two-step approach is that it makes no sense in actual practice. We see the assessment of medical decision-making capacity within the process of informed consent as a spiral staircase, not just two steps, requiring clinicians to keep circling up and around, making progress, until they get to where they need to be: 1. Clinicians start with a general presumption of capacity for most adults, sometimes having a provisional appraisal of capacity based on prior patient contact. 2. Then, they begin performing informed consent for the current situation and intervention options. 3. Next, they must reassess capacity during this process. 4. After that, they continue with informed consent. 5. If capacity is not yet clear, they repeat 1-4.

Cost-benefit considerations of the biased diagnostician.

OBJECTIVES: In the cognitive process of establishing a diagnosis, the performance of a diagnostician can be characterized in terms of sensitivity and specificity. The aims of the present study are to analyze in quantitative terms how cognitive bias affects the performance of a diagnostician, and how a diagnostician's biased decision making is further influenced by personal cost-benefit considerations. METHODS: The test matrices of two sequential diagnostic tests are manipulated according to the rules of linear algebra, using multiplication of the second with the first test matrix to calculate their joint test characteristics. The decision tree and receiver operating characteristic (ROC) of a biased and unbiased diagnostician are used to calculate which combination of test characteristics maximizes the expected utility value. RESULTS: Biased diagnosticians cannot establish a diagnosis beyond their own limited or distorted level of understanding. An unbiased and a biased diagnostician alike adjust their choice of test characteristics according to their different cost-benefit estimation of the various test outcomes. From the perspective of an unbiased diagnostician, the choices made by a biased diagnostician appear to invert reality. However, the same appearance of inverted reality is perceived by the biased diagnostician, judging the choices made by the unbiased diagnostician. CONCLUSIONS: As a general principle, human testers cannot test beyond their own level of understanding. They only see what they know. As they base their judgment on preconceived notions about the utilities associated with different test outcomes, human testers also tend to only know what they want to know.

Risk-Adapted Breast Screening for Women at Low Predicted Risk of Breast Cancer: An Online Discrete Choice Experiment.

BACKGROUND: A risk-stratified breast screening program could offer low-risk women less screening than is currently offered by the National Health Service. The acceptability of this approach may be enhanced if it corresponds to UK women's screening preferences and values. OBJECTIVES: To elicit and quantify preferences for low-risk screening options. METHODS: Women aged 40 to 70 y with no history of breast cancer took part in an online discrete choice experiment. We generated 32 hypothetical low-risk screening programs defined by 5 attributes (start age, end age, screening interval, risk of dying from breast cancer, and risk of overdiagnosis), the levels of which were systematically varied between the programs. Respondents were presented with 8 choice sets and asked to choose between 2 screening alternatives or no screening. Preference data were analyzed using conditional logit regression models. The relative importance of attributes and the mean predicted probability of choosing each program were estimated. RESULTS: Participants (N = 502) preferred all screening programs over no screening. An older starting age of screening, younger end age of screening, longer intervals between screening, and increased risk of dying had a negative impact on support for screening programs (P < 0.01). Although the risk of overdiagnosis was of low relative importance, a decreased risk of this harm had a small positive impact on screening choices. The mean predicted probabilities that risk-adapted screening programs would be supported relative to current guidelines were low (range, 0.18 to 0.52). CONCLUSIONS: A deintensified screening pathway for women at low risk of breast cancer, especially one that recommends a later screening start age, would run counter to women's breast screening preferences. Further research is needed to enhance the acceptability of offering less screening to those at low risk of breast cancer. HIGHLIGHTS: Risk-based breast screening may involve the deintensification of screening for women at low risk of breast cancer.Low-risk screening pathways run counter to women's screening preferences and values.Longer screening intervals may be preferable to a later start age.Work is needed to enhance the acceptability of a low-risk screening pathway.

Is Suffering a Useless Concept?

"Suffering" is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which "suffering" is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

Rethinking Human-AI Collaboration in Complex Medical Decision Making: A Case Study in Sepsis Diagnosis.

Today's AI systems for medical decision support often succeed on benchmark datasets in research papers but fail in real-world deployment. This work focuses on the decision making of sepsis, an acute life-threatening systematic infection that requires an early diagnosis with high uncertainty from the clinician. Our aim is to explore the design requirements for AI systems that can support clinical experts in making better decisions for the early diagnosis of sepsis. The study begins with a formative study investigating why clinical experts abandon an existing AI-powered Sepsis predictive module in their electrical health record (EHR) system. We argue that a human-centered AI system needs to support human experts in the intermediate stages of a medical decision-making process (e.g., generating hypotheses or gathering data), instead of focusing only on the final decision. Therefore, we build SepsisLab based on a state-of-the-art AI algorithm and extend it to predict the future projection of sepsis development, visualize the prediction uncertainty, and propose actionable suggestions (i.e., which additional laboratory tests can be collected) to reduce such uncertainty. Through heuristic evaluation with six clinicians using our prototype system, we demonstrate that SepsisLab enables a promising human-AI collaboration paradigm for the future of AI-assisted sepsis diagnosis and other high-stakes medical decision making.

A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. CONCLUSIONS: While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.