Patient Autonomy Research Articles

Design Framework of Expert System Program in Otolaryngology Disease Diagnosis use Extreme Programming (XP)Method(Case Study in THB Bekasi Hospital)

The prevalence of Ear, Nose, and Throat (ENT) diseases presents diagnostic challenges, especially in resource-limited settings. At THB Bekasi Hospital, constrained specialist availability and long consultation queues highlight the need for an accessible diagnostic solution. This study aims to develop an expert system for diagnosing ENT diseases using the Extreme Programming (XP) methodology, incorporating the forward chaining technique for inference. The research includes assessment, knowledge acquisition through expert consultations, system design, and rigorous testing. The system was developed as a mobile application using Android Studio, enabling users to input symptoms and receive real-time diagnostic insights. The knowledge base integrates data from medical experts, synthesizing 11 diseases and 35 symptoms into a robust decision-making framework. The diagnostic process applies predefined rules to ensure accuracy in identifying conditions such as sinusitis, laryngitis, and otitis. Evaluation results demonstrate a 100% match accuracy during testing with 15 test cases, confirming the system’s reliability. The application offers users rapid diagnostic assistance, promoting timely treatment for ENT issues, although it does not substitute medical professionals. By leveraging ubiquitous smartphone access, this system addresses gaps in healthcare accessibility and enhances patient autonomy. This research contributes a scalable framework for deploying expert systems in other medical domains. Future improvements include integrating geolocation services for nearby specialist referrals and adopting backward chaining for more complex diagnoses, thereby broadening its applicability and utility

Advancing Patient-Centered Care: A Nationwide Analysis of Hospital Efficiency and Morbidity Using Innovative Propensity Score Techniques.

Introduction The patient-centered care model emphasizes patient autonomy in recovery, acknowledging each individual's unique journey. Despite challenges in the healthcare system, this model has gained traction nationwide. Advances in healthcare technology have highlighted obstacles to independent decision-making. This study addresses these issues by emphasizing the need for consistent access to health information, which is crucial for empowering patients. We aim to proactively identify information gaps and propose new insights for better data precision and synchronization protocols. Our analysis of nationwide hospital length of stay (LOS) data demonstrates data-driven interventions tailored to patients' needs, aiming to improve the hospital experience and reduce care fragmentation. Methods We examined the complex nature of hospital LOS and various variables across nationwide healthcare settings using CMS data from 2011 to 2021. To enhance our national findings, we incorporated a local perspective by analyzing LOS data from Arrowhead Regional Medical Center (ARMC) and its associated diagnosis-related groups (DRGs). We employed a propensity score to adjust for variables and proactively drive realistic predictions of hospital outcomes. This methodological approach emphasizes the importance of using tools that can be scaled from localized settings to a broader national context. Furthermore, our study highlights the critical need for continuous quality assessment of hospital LOS. This includes measuring LOS and developing innovative tools capable of predicting, analyzing, intervening, and prompting actions based on insights gained from data analysis. The study aims to achieve several core objectives by integrating these components: enhancing patient empowerment through improved communication, refining LOS assessment through innovative techniques, and developing predictive tools to inform clinical practice and policy. Ultimately, this research contributes to a more patient-centered approach to managing inpatient care, improving patient outcomes and satisfaction. Results Our study aspires to transform three pivotal domains that can enhance patient autonomy, optimize hospital recovery, and elevate the overall experience. First, the cost of care reveals that prolonged hospital stays and escalating expenses are often linked to more severe health consequences. Second, our analysis uncovers the intricate relationship between hospital outcomes, such as mortality and readmissions, showing that shorter hospital stays can diminish patients' risk of complications. However, we must tread carefully, as this approach may lead to premature discharges. Lastly, providers can gain more precise insights into these interconnected outcomes by leveraging data tools such as propensity scores. We advocate for the dissolution of care fragmentation through robust health information exchange (HIE), and the adoption of innovative strategies such as blockchain and advanced machine learning (ML) techniques that rise to contemporary medicine and adapt to the growing patient needs.

Selective termination: a life-saving procedure for complicated monochorionic gestations

Abstract Monochorionic twin pregnancies are a subset of twin pregnancies that face potential complications related to a shared circulation between the fetuses. These complications are related to anastomotic placental vessels connecting the cardiovascular systems of the two fetuses, which can result in significant sequela if one twin experiences intrauterine death. The sudden cardiovascular collapse in this scenario leads to a massive blood shift away from the healthy co-twin, significantly jeopardizing its life and long-term neurodevelopmental outcome. Such conditions include selective fetal growth restriction with abnormal Doppler findings, twin-twin transfusion with impending death in one twin and discordant fetal anomalies, for which fetal interventions are ineffective in improving outcomes or preventing the imminent death of the abnormal twin. Obstetricians have a professional obligation to respect the autonomy of pregnant patients and to maximize beneficence-based obligations to both pregnant and fetal patients. The goal of a selective termination is to maximize the health and life of the surviving fetal patient. It is recommended that policymakers consider including selective termination as an exemption to abortion ban laws.

Exploring Ethical Challenges in Emergency Medical Services: A Qualitative Study

Background: Emergency medical technicians (EMTs) face complex ethical dilemmas in their frontline role, involving resource constraints, time pressure, patient autonomy, and competing obligations. This qualitative study explored the experiences of EMTs, their decision-making processes, and the potential areas for enhancing ethical practices in emergency medicine, aiming to inform targeted policies and training programs that support EMTs and improve care quality. Methods: A total of 17 EMTs from Qom province participated in this study and in-depth interviews were conducted to gather rich and detailed insights into their experiences. The interviews were transcribed and analyzed using Graneheim and Lundman’s conventional content analysis to identify common themes and patterns related to ethical challenges. Results: The findings identified five main categories of ethical challenges faced by EMTs including ethical dilemmas, professional conduct, communication and consent, ethical training and support, and organizational challenges. Within these categories, specific subcategories emerged, including decision-making challenges, conflict of interest, resource allocation, end-of-life care, dual relationships, emotional boundaries, privacy and confidentiality, breaking bad news, language barriers, and informed consent. Each subcategory shed light on the unique ethical challenges faced by EMTs. Conclusion: This study highlighted the complex ethical landscape in which EMTs operate and provided valuable insights into the challenges they face. The findings underscored the need for comprehensive ethical training, support mechanisms, improved communication strategies, and an organizational culture that promotes ethical conduct. It is essential to address these challenges to enhance the ethical practices and decision-making skills of EMTs, ultimately leading to improved patient care and outcomes.

Towards Equitable Healthcare: Redesigning Informed Consent Regulations

Informed consent is a fundamental element of ethical and legal healthcare practices, serving as a cornerstone for patient autonomy and equitable care. In Indonesia, informed consent is regulated under frameworks such as Law No. 17 of 2023 on Health, Government Regulation No. 28 of 2024, and Ministerial Regulation No. 290 of 2008. While these regulations establish foundational guidelines, they are limited in addressing contemporary challenges, particularly in the communication of medical information tailored to diverse patient needs. This article examines the gaps in the current regulatory framework, particularly regarding the inadequacies in ensuring patient understanding and participation in medical decision-making. The analysis highlights key shortcomings, including the lack of detailed technical provisions for adapting information delivery to various patient conditions, such as those with disabilities, language barriers, or limited literacy. It argues that these gaps undermine the principles of equity and justice, potentially resulting in consent that does not reflect informed patient choice. To address these challenges, the article proposes regulatory reconstructions emphasizing justice, transparency, and inclusivity. Suggested reforms include the mandatory use of digital documentation, enhanced communication technologies, and support systems such as translators or visual aids for vulnerable populations. By integrating these reforms into the legal framework, the healthcare system can foster a more inclusive informed consent process, enhancing patient trust, autonomy, and equity in medical decision-making. These changes are crucial for bridging the gap between ethical theory and practical application in Indonesia’s evolving healthcare landscape.

The conflict between oral health and patient autonomy in dentistry: a scoping review

BackgroundRespect for patient autonomy, the principle that patients are capable to make informed decisions about medical interventions, is fundamental in present-day medicine. However, if a patient’s request is medically not indicated, the practitioner faces an ethical dilemma represented by the conflict of the principles of patient autonomy, beneficence, and maleficence. Adjacent to topics such as medical assistance in dying and healthy limb amputation, this ethical dilemma also manifests in the care of the maxillofacial region (the oral cavity and its surroundings), an area crucial to esthetic appearance, but also to everyday functions including mastication, speech, and facial expression, all of which are related to well-being. Our aim was to explore the manifestations and resolutions of the conflict between oral health and patient autonomy in relevant literature in order to contribute to the discourse of ethical challenges concerning patient autonomy, beneficence, and nonmaleficence.MethodsWe screened all journal articles discussing the researched ethical dilemma obtained from three databases. Two researchers developed a hierarchical coding scheme, where the parent and grandparent codes were designated deductively as: Case (situations involving the researched ethical dilemma), Judgement (decisions made in the ethical dilemma), and Principle (ideas, rules, propositions explaining the judgements); child codes were developed inductively. After coding the sources, we utilized thematic analysis to construct code constellations.ResultsMost themes identified in our sources advocated for the practitioner to choose the alternative that benefits the patient from a medical perspective, although no theme excluded the consideration of patient autonomy. Instances where respect for patient autonomy was encouraged concerned oral preventive care or when the requested intervention was expected to have an insignificant impact on oral health.ConclusionsEthical conflicts concerning patient autonomy, beneficence, and nonmaleficence have a marked presence in oral care. These conflicts arise through the issue of body modification, evident in cosmetic dentistry and requests for tooth extraction. Our sources generally support the argumentation for beneficence, despite the rise of cosmetic procedures in dentistry.

Adequacy of informed consent in clinical research: A descriptive cross-sectional study

The principle of patient autonomy in the participation and incorporation of their health data in research projects is a legal and deontological obligation that must be fulfilled. The aim of this study was to know the degree of compliance and adequacy of informed consent in clinical research projects in a university hospital. Through this cross-sectional study, the adequacy of the way patient data are obtained in the research projects presented to the Research Committee of a university hospital was analyzed. The adequacy of the way patient data were obtained in the research projects, dealing with informed consent and causes of exemption, was described with their frequencies distributions. It was assessed by means of the adjusted odds ratio through a backstep logistic regression model, including the predictable significant variables previously analyzed in the univariant analysis. A total of 565 protocols were included. The most frequent type of studies assessed were observational retrospectives (49.6%) and end-of-year projects (28.1%). The most frequent way of obtaining the patient data were by means of soliciting exemption of informed consent (48.3%). Obtaining the patient data process was considered appropriated in 51.1% of the projects. Projects with higher adequacy were those solicited by students (OR=4.2; CI95%=2.0-8.8) and residents OR=3.0; CI95%=1.2-2.4). The majority of the projects assessed was retrospective observational studies in which exemption of informed consent was solicited. Projects with higher adequacy were solicited by students and residents.

Scaffolding informed consent

The principle of respecting patient autonomy underpins the concept and practice of informed consent. Yet current approaches to consent often ignore the ways in which the exercise of autonomy is...

Experts' perspectives on human gene editing in Switzerland.

Despite many specialized studies on the views of the public or stakeholders who face inherited conditions that may be treatable by HGE, limited studies have focused on experts' views towards Human Gene Editing (HGE). Therefore, in this study we conducted exploratory interviews with 14 experts (scientists, clinicians, social scientists, lawyers) in Switzerland to assess their views towards HGE and how they expect the Swiss public to view HGE. We found general acceptance of Somatic Gene Editing (SGE), but opinions towards Germline Gene Editing (GGE) were more divided. Participants emphasized patient autonomy and informed decision-making in pursuing gene editing treatments, and described a need for regulation, as with any other new therapy. Only a few participants (mostly lawyers and ethicists) described the regulations that currently prohibit GGE in Switzerland. Some expressed concern that restrictive regulations would lead to healthcare outsourcing and medical tourism to other nearby countries, as it has in the past with other restricted technologies. The analysis explored the unique Swiss context that is shaped by cultural diversity, conservative attitudes towards new medical technologies, and a democratic system that engages the public in policy and law making. Given that our findings identify areas of difference from that published in other countries, we emphasize the value in conducting similar research across different countries in order to achieve a global sense of attitudes towards HGE, so that regulations can be tailored to the diverse needs of citizens around the world.

Revisiting medical oaths: how student-driven ethical codes reflect changing values

BackgroundMedical oaths and ethical codes play a crucial role in guiding physicians through their professional responsibilities. This study extends prior research on ethical codes created by students at the Medical...

The Anticipated Organ Donation Approach Increases the Number of Organ Donors.

Deficiency of organs for transplantation is a significant public health issue. French learned societies accept intensive care unit admission for patients with catastrophic neurological prognosis to optimize organs prior to probable brain death. We evaluated the implementation of a specific ethical care procedure for these patients. A descriptive before-after study was conducted, comparing the 2009-2012 period to the 2013-2016 period, during which this procedure was applied. The number of patients increased from 145 to 186 (+28.3%) and the number of harvested organs increased from 323 to 485 (+50.1%). The anticipated organ donation approach was initiated 135 times. Of the 117 meetings with families, 83 (71%) consented to organ donation. Fifty-three (64%) patients were brain dead, and 49 (92%) of these patients had 194 organs harvested. The anticipated approach increased the number of donors and organs suitable for grafts. The application of a specific protocol for managing untreatable catastrophic neurological patients improved communication between hospital staff and families and respected patient autonomy by offering options for either organ donation or palliative care.

A Study of Orthopedic Patient Leaflets and Readability of AI-Generated Text in Foot and Ankle Surgery (SOLE-AI).

Introduction The internet age has broadened the horizons of modern medicine, and the ever-increasing scope of artificial intelligence (AI) has made information about healthcare, common pathologies, and available treatment options much more accessible to the wider population. Patient autonomy relies on clear, accurate, and user-friendly information to give informed consent to an intervention. Our paper aims to outline the quality, readability, and accuracy of readily available information produced by AI relating to common foot and ankle procedures. Materials and methods A retrospective qualitative analysis of procedure-specific information relating to three common foot and ankle orthopedic procedures: ankle arthroscopy, ankle arthrodesis/fusion, and a gastrocnemius lengthening procedure was undertaken. Patient information leaflets (PILs) created by The British Orthopaedic Foot and Ankle Society (BOFAS) were compared to ChatGPT responses for readability, quality, and accuracy of information. Four language tools were used to assess readability: the Flesch-Kincaid reading ease (FKRE) score, the Flesch-Kincaid grade level (FKGL), the Gunning fog score (GFS), and the simple measure of gobbledygook (SMOG) index. Quality and accuracy were determined by using the DISCERN tool by five independent assessors. Results PILs produced by AI had significantly lower FKRE scores when compared to BOFAS -40.4 (SD: ±7.69) compared to 91.9 (SD: ±2.24) (p ≤ 0.0001), indicating poor readability of AI-generated text. DISCERN scoring highlighted a statistically significant improvement in accuracy and quality of human-generated information across two PILs with a mean score of 55.06 compared to 46.8. FKGL scoring indicated that the required grade of students to understand AI responses was consistently higher than compared to information leaflets at 11.7 versus 1.1 (p ≤ 0.0001). The number of years spent in education required to understand the ChatGPT-produced PILs was significantly higher in both GFS (14.46 vs. 2.0 years) (p < 0.0001) and SMOG (11.0 vs. 3.06 years) (p < 0.0001). Conclusion Despite significant advances in the implementation of AI in surgery, AI-generated PILs for common foot and ankle surgical procedures currently lack sufficient quality, depth, and readability - this risks leaving patients misinformed regarding upcoming procedures. We conclude that information from trusted professional bodies should be used to complement a clinical consultation, as there currently lacks sufficient evidence to support the routine implementation of AI-generated information into the consent process.

Ethical Considerations in the Use of Music within Operating Theatres: Patient Autonomy Versus Therapeutic Potential

Ethical Considerations in the Use of Music within Operating Theatres: Patient Autonomy Versus Therapeutic Potential

Patient Voices: Lived Experiences of Decision-Making Process in Long-Term Antipsychotic Medication Treatment.

This research explores patients' perspectives on the decision-making process for long-term antipsychotic treatment. Twenty individuals on non-compulsory antipsychotic medications were interviewed, and their responses were analyzed using grounded theory. The analysis revealed three interconnected themes that suggest a cyclical process potentially eroding patient autonomy: According to participants' accounts, they often received limited information about dependence, withdrawal symptoms, or expected treatment duration before starting medication. Subsequently, many reported developing desires to stop or reduce their antipsychotic treatment. Participants then described experiencing dismissal of their reported side effects or treatment ineffectiveness, lack of alternatives, and opposition to reduction attempts from their psychiatrists. These experiences formed a cycle where initial information gaps contributed to later challenges when attempting treatment modifications. The findings emphasize the value of comprehensive information delivery, serious consideration of patients' reported experiences, and treatment processes that enhance patients' sense of autonomy in their psychiatric care.

Patient Preferences for Code Status Discussions: A Randomized Trial of Information- vs. Patient Values-Centered Frameworks.

Helping patients make decisions about their preferences for cardiopulmonary resuscitation (i.e., code status) is an important way to respect patient autonomy in the hospital. There is a gap in understanding which framework of discussion patients prefer for this decision-making. To determine which of two frameworks to code status discussions-information-centered or patient values-centered-make patients feel more heard and understood about their preferences regarding cardiopulmonary resuscitation (CPR). Prospective, randomized study comparing two different frameworks to CPR discussion. We enrolled adult patients with one or more serious illnesses who were recently discharged from an urban, tertiary care, academic medical center in Boston, MA. Subjects were randomized to receive either the information-centered framework, in which their likelihood of recovery following CPR was shared, or the patient values-centered framework, in which their personal values were elicited and used to make a recommendation. Subject-reported heard and understood rating with regard to their preferences for CPR. Of the 46 subjects enrolled, 25 (54.3%) were male, 42 (91.3%) were White, and 3(6.5%) were Black. Mean age was 66.4 ± 11.8years. Subjects reported feeling more "heard and understood" about their preferences for CPR with the patient values-centered framework compared with after the information-centered framework (p = 0.033). When asked, 89% of subjects "definitely" or "probably" wanted to hear their doctor's personalized recommendation about CPR (p < 0.001). Patients, in line with palliative care experts, largely support a patient values-centered framework to CPR, including a recommendation made by the clinician based on the patient's expressed values.

Advances in Shared Decision Making in Brazil: The role of patient autonomy in curriculum reform, health system and clinical care.

Clinical practice in Brazil has rapidly transformed. Doctor-patient relationships are the focus of these transformations, either within health policies or in the context of medical training. The Brazilian Curriculum Guidelines have emphasized the doctor-patient relationship as part of medical skills and competences, based on patient-centered care. In this article, we present the political advances in patient-centered care. In addition, we address an overview of the Brazilian status quo of decision support tools. Finally, we share experiences in curriculum reform for the advances of communication skills and the interfaces with narrative medicine and the arts in curricular medical training as a means to advance towards the practice of shared decision making.

From Pills to Practices: Interpretative Phenomenological Analysis of Medication Experience and Self-Management in Schizophrenia.

Schizophrenia, a mental disorder characterized by delayed onset, high relapse rates, and significant disability, ranks among the top 20 contributors to the global burden of disease and poses a substantial public health challenge. Effective self-management is crucial for the recovery of individuals with schizophrenia, with medication experience playing a vital role. However, the underlying mechanisms and logical relationships remain elusive, hindering the development of effective self-management and enhancement strategies from the perspective of medication experience. This research aimed to illuminate these aspects by conducting semi-structured interviews to delve into the impacts of medication experience on self-management behaviors among individuals with schizophrenia. The goal was to elucidate the role of medication in self-management and to identify potential barriers and facilitators via patient narratives. We employed interpretive phenomenological analysis to examine interview transcripts from 12 participants diagnosed with schizophrenia. This analysis yielded three superordinate themes: "Medicine isn't just medicine," "Experience is a catalyst for action," and "Action shaped by experience." We discuss these themes in the context of existing literature and theoretical frameworks and propose specific recommendations, such as motivational interviewing for clinicians, tailored psycho-educational programs, and supportive systems respecting patient autonomy. This study offers a contextual understanding of the medication experience for individuals with schizophrenia, enhancing our knowledge of self-management behaviors and how they can be promoted in this population.

The right to be sick

Over the past century, the “right to health” has been recognized by medical organizations and governments across the globe. This essay calls for recognition of a parallel “right to be sick” intended to reframe physician attitudes toward patient autonomy and the right to refuse care. Rather than seeking to discourage allopathic medicine or to question laws requiring involuntary treatment when indicated by the collective welfare, the goal is to have the medical and public health communities reconceptualize their attitudes toward individuals who reject unsought guidance and care.

Motivation in Rare Disease Self-Care: A Phenomenological Study of Pediatric Patients With Spinal Muscular Atrophy and Their Caregivers.

Spinal muscular atrophy can cause progressive physical disability and difficulties with self-care. Self-care motivation can enhance patient persistence in self-care behavior and maintain health. This study was designed to explore and describe motivations for self-care among school-aged children and adolescents with spinal muscular atrophy and the perspectives of their primary caregivers. Husserl's phenomenological research method was adopted, and data were collected using in-depth, face-to-face, open-ended interviews with patients and their primary caregivers aged 8-18 years with spinal muscular atrophy. A total of eight patient-caregiver dyads were recruited via purposeful sampling from a hospital clinic and through the Muscular Dystrophy Association of Taiwan. The interviews were conducted in the participants' homes and transcribed verbatim. Data were then thematically analyzed using the Giorgi analysis method. Six themes were identified from the patients' perspective: (a) adapting to dietary restrictions, (b) proactive measures for physical safety, c3) pursuing social connection and peer support, (d) navigating emotional well-being, (e) seeking independence, and (f) achieving success motivation. From the caregivers' perspective, the motivations for patient self-care were identified as follows: (a) ensuring safe and enjoyable eating for patients, (b) facilitating patient autonomy in health risk management, (c) facilitating patient engagement with peers, (d) balancing support with encouraging independence, (e) assessing and balancing independence and safety in patient caregiving, and (f) admiring patients' resilience and self-care innovation. This study highlights the vital roles of caregivers in adapting to the dynamic self-care motivations of children and adolescents and of healthcare professionals in facilitating communication and care strategies. Personalized approaches are essential for enhancing autonomy and well-being in pediatric patients.

THE ROLE OF SOCIAL WORK IN PALLIATIVE CARE: HISTORICAL DEVELOPMENT AND CHALLENGES

The article explores the challenges and opportunities in social work within palliative care, emphasizing its role in addressing the complex needs of patients with life-threatening illnesses and their families. The primary aim is to analyze the emotional, ethical, organizational, and cultural dimensions of social work in this field and identify strategies for improving care delivery. The findings highlight significant challenges, such as the emotional burden on social workers, resource limitations, and ethical dilemmas related to balancing patient autonomy with cultural and religious differences. Nevertheless, the conclusions demonstrate the pivotal role of social workers in providing psychosocial support, coordinating care within multidisciplinary teams, and advocating for culturally sensitive practices. The conclusions emphasize the need for targeted interventions to enhance the effectiveness of social work in palliative care. These include specialized training, increased resource allocation, and the development of comprehensive policies and standards. The recommendations focus on deeper integration of social work into multidisciplinary teams, promoting cultural competence, and ensuring the sustainability of professionals through improved support systems. These measures are essential for delivering compassionate, patient-centered care that meets the diverse needs of patients and families during the end-of-life journey.