Dental tourism is patients travelling across international borders with the intention of receiving dental care. It is a growing phenomenon that raises many ethical issues, particularly regarding the dentist–patient relationship. We discuss various issues related to this phenomenon, including patient autonomy over practitioner choice, patient safety, continuity of care, informed consent and doctor–patient communication, among other factors. In particular, patients partaking in medical tourism should be informed of its potential problems and the importance of proper (...) planning and post-treatment care to guarantee high-quality treatment outcomes. (shrink)

Background Decision making when patients ask a dentist for fee reduction is a real ethical dilemma at dental settings. The aim of this study was to evaluate how dental students and tutors think about their position for, or against fee reduction at dental offices. Method It was a questionnaire-based survey, which examined the ethical attitudes of students and tutors of an Iranian Dental School. The questionnaire included a vignette about an ethical dilemma at a dental office. Different ethical approaches, (...) i.e. duty-based, virtue-oriented and consequentialist arguments, for or against fee reduction at dental office were suggested. Respondents were asked to rank those ethical options. Data was entered and analyzed in SPSS 16.0. Result 121 dental students and thirty-six faculty members participated in this study. It revealed that a majority of dental students and tutors are in favor of charging patients less, when facing an imagined request at dental office, using either virtue-oriented or consequentialist argument for fee reduction. The difference between rankings of four options was statistically significant, while no statistically significant difference exists neither between male and female respondents, nor students and tutors. Conclusion This case study provides a basis for fruitful discussions in ethics courses for dental students. Our study suggests that financial issues should be considered as a part of ethical training within the dental student's curriculum. (shrink)

Ethics and professionalism -- Ethical theory and philosophy -- Ethical principles and values -- Social responsibility -- Codes of ethics -- Ethical decision making in dental hygiene and dentistry -- Society and the State Dental Practice Act -- Dental hygienist/patient relationship -- Dental hygienist/dentist-employer relationship -- Risk management -- Case studies, activities, and testlets -- Appendix A : American Dental Association Principles of Ethics and Code of Professional Conduct.

After COVID-19 first began to spread in the United States, dentists developed new guidelines that limited whom they could treat under these emergency conditions. Patients who faced greater limits to accessing treatment included children. Using a case of a child who was not able to access treatment, I discuss how careproviders might best seek to maintain their emotional bonding with patients and their loved ones, even if they must turn them down for an intervention.I also address whether and when to (...) give patients and their loved ones warning that access to treatment could be limited, using illness caused by COVID-19 as an example of how careproviders may better anticipate patients’ needs at all times.Finally, I discuss careproviders’ needs. I suggest that medical professionals’ culture should make it as easy as possible for them to acknowledge their feelings of vulnerability, so that they may better determine, in times of disaster, whether they should treat or triage patients. Careproviders who triage may choose to share with patients and loved ones that they also feel pain when they deny patients an intervention. (shrink)

In Italy, consent for health treatment, aside from being an ethical and deontological obligation, constitutes an essential requirement for any medical treatment according to articles 13 and 32 of the National Constitution and also in accordance with the Council of Europe's ‘Convention on Human Rights and Biomedicine’. An essential requirement for the validity of consent is that clear, exhaustive and adequate information be provided to the patient himself: the practice of informed consent is a communicative relationship in which the (...) patient can express doubts, perplexities and clarification requests to the dentist. Furthermore, dental treatment has specific peculiarities: the relationship between dentistry and aesthetics, the concomitant presence of pathologies requiring different treatments, the elongated care process and the establishment of a trustworthy relationship and familiarity with the patient represent important aspects in the configuration of the dentist-patient relationship and in the process of acquiring informed consent. The dentist must offer correct information on diagnosis, prognosis, the therapeutic perspective and the likely consequences of therapy, alternative therapy and refusal of therapy, as well as eventual commitments for the period after treatment. Particular consideration must be given to minors and patients of unsound mind: the dentist's approach to these patients needs to be clear and appropriate to the person's age and understanding ability, even if the decisional power for sanitary treatment may be in the hands of a third person. (shrink)

This thoughtful reflection on a valuable questionnaire survey of patients' attitudes regarding being told that their dentist had been infected with hepatitis B is of very direct relevance to HIV, as the authors show.1 The measured tone and analytical approach are a welcome change from the stridency that has characterised some of the debate elsewhere. I am very conscious that more time and effort has gone into drafting and redrafting, amending, revising and refining policy in this area than in (...) any other area of HIV control, with the probable exception of blood transfusion. Yet this is the setting that has the lowest risk among all established routes. Why has it been so hard to establish a satisfactory policy and practice to deal with this situation?Many factors, of course, apply. However, much seems to stem from a prevailing view, fostered by recent political administrations, that health care can be delivered in a risk-free way. This has also been linked with a “blame culture”, where adverse outcomes are seen as someone's fault, and where the professions are regarded with distrust. It has been fuelled by levels of concern about risk for HIV that have stemmed more from media “stories” about risk than careful risk assessment.Hence Blatchford et al comment that public anxiety about HIV relative to hepatitis B was a factor in assessing how the incident was handled, implying that HIV was of greater concern - even though the risk of transmission is some two orders of magnitude less. Interestingly, they also comment that, because the risk of death with HIV is higher than for hepatitis B, this balances the overall risk. I am not sure of the validity of this argument, …. (shrink)

The risk of transmission of HIV or hepatitis B from infectious health care workers to patients is low. However, inadvertent exposure causes great concern amongst patients of an infected health care worker.The patients of a Scottish dentist diagnosed hepatitis B e antigen positive were informed by letter of their exposure. A sample of patients was sent a postal questionnaire. Most respondents reported feeling anxious on receiving the letter but almost all thought patients should always be informed following treatment by (...) an infectious health care worker, although the risk was very small.We discuss clinical and ethical factors relating to informing patients following exposure to an infectious health care worker. We suggest that a balance should be struck between patients' wishes to know of risks to which they have been exposed, however small, and the professional view that when risks are negligible, patients need not be informed. (shrink)

Pediatric dentists rely on access to hospital operating rooms for safe, effective, and humane delivery of dental care. The children who benefit most from dental treatment in a hospital operating room are those who are very young, have dental anxieties or phobias, are precommunicative or noncommunicative, need extensive or invasive dental treatments, or have special healthcare needs. Diminishing access to hospital operating rooms for pediatric dental treatment has become an escalating problem in contemporary times. Financial barriers, hospital costs, reimbursement rates, (...) health insurance policies and deductibles, out-of-network hospitals, socioeconomic factors, and the COVID-19 pandemic are prominent contributing factors. This problem in access to care has resulted in long waiting times for hospital operating rooms, deferral of medically necessary dental care, and pain and infection among this vulnerable patient population. Pediatric dentists have responded to the problem by utilizing alternative methods of care delivery, such as in-office deep sedation or in-office general anesthesia, and by implementing aggressive medical management of dental caries. However, the youngest of pediatric patients and children with special healthcare needs still remain at a disadvantage in receiving definitive dental treatment. This article aims to highlight the ethical challenges faced by pediatric dentists in contemporary practice in the face of limitations in hospital operating room access through four case scenarios. (shrink)

In many clinical cases a dentist may feel certain when for example diagnosing, deciding on treatment, or assessing the prognosis - in other cases many dentists may feel a degree of doubt or uncertainty. This paper aims to explore the philosophical concept of uncertainty and its different dimensions, using the condition "persistent apical periodontitis associated with a previously root filled tooth" as an example. Acknowledging that uncertainty exists in any clinical situation can be perceived as uncomfortable, as some might (...) regard it as a weakness. While some types of uncertainty met in dental practice can be addressed and reduced, there are other types which are inevitable and must be accepted. To make sound decisions, it is pertinent that the dentist reflects on and values the consequences of uncertainty. In this paper, a conceptual model is presented by which the dentist can identify the type of uncertainty in a clinical case, making it possible to decide on a strategy on how to manage the uncertainty and its possible consequences, with the aim to support the dentist's care for their patients. The understanding that uncertainty exists and the ability to acknowledge and be comfortable with it when making decisions should be addressed throughout our professional career, and thus ought to be developed during undergraduate education. Some suggestions on how teachers could target this are given in the paper. (shrink)

The mortality rate of patients affected with oral squamous cell carcinoma has been stable in recent decades due to several factors, especially diagnostic delay, which is often associated with a late stage diagnosis and poor prognosis. The aims of this paper were to: analyze diagnostic delay in OSCC and to discuss the various psychological factors of patients with OSCC, with particular attention to the patient’s fear of receiving news regarding their health; and the professional dynamics related to the decision-making (...) processes in cases of suspected OSCC. A preliminary review of literature focusing on OSCC diagnostic delay was performed. Seven articles were included with the diagnostic delay ranging from 45 days to approximately 6 months. Patients’ fears and, to a lesser degree, the concerns of dentists, were found to be still poorly investigated. On the basis of the authors’ professional experience, the development of oral lesions of unknown origin may generate different behaviors in the decision-making processes by patients and clinicians, and fear may play a key role in the distinct steps of this process. It is crucial to increase awareness and inform patients about the onset of OSCC, and contemporaneously encourage experimental studies on patients’ fear and professional behaviors with respect to communication regarding OSCC. (shrink)

Los avances científicos y su aplicación técnica en el ámbito de la odontología, ha motivado la reflexión bioética de la práctica en esta disciplina planteando las siguientes interrogantes: ¿cómo entender el papel del odontólogo?, ¿cómo se configura el universo bioético del odontólogo?, ¿cómo se posibilita el consentimiento válidamente informado? Para explorar la respuesta a estos cuestionamientos, se tiene como punto de partida la relación odontólogo-paciente, y se transita por aspectos de la bioética del odontólogo y las características del consentimiento informado (...) en la práctica odontológica. La conclusión destaca la importancia de hacer del consentimiento informado el medio por el cual se recupera la dignidad de la persona mediante una relación ética y dialógica en tanto proceso mediante el cual se reconoce la alteridad del paciente durante la relación odontólogo- paciente además de coadyuvar a la educación en salud del paciente promoviendo su responsabilidad frente a la autonomía y sus derechos. Scientific advances and their technical application in the field of Dentistry, have led to a bioethical reflection about practice in this discipline by asking questions like: how to understand the dentist´s role, how to set the dentist´s bioethical universe?, how is the valid informed consent made possible? To answer these questions, the patient-dentist relationship is taken as a starting point, and goes through the dentist´s bioethical aspects and informed consent characteristics in dental practice. The conclusion highlights the importance of the informed consent as a way to recover a person´s dignity by which the otherness of the patient is recognized as well as to contribute to the patient´s health education promoting responsibility towards autonomy and rights. (shrink)

Introduction: Early recognition of prediabetes may prevent progression to diabetes, yet not all adults are aware of their prediabetes risk. To reach all adults unaware of their risk, additional risk assessment strategies are warranted. Objectives: The objective of this study was to evaluate the potential scope of benefit from prediabetes risk assessment in the dental care setting and to identify characteristics of dental patients likely to unknowingly have prediabetes or diabetes. Methods: Data from 10,472 adults in the National Health and (...) Nutrition Examination Survey from 2013 to 2014 and 2015 to 2016 were analyzed for associations among prediabetes/diabetes risk factors, health care use, and hemoglobin A1C levels according to chi-square tests and multivariate logistic regression. Results: A total of 7.73% of US adults had seen a dentist but not a medical provider in the past 12 mo. The composition of this subpopulation was significantly different from that who saw a medical provider, in ways that might affect their diabetes risk. In addition, 31.27% of this subpopulation would be identified as being at high risk for prediabetes according to the CDC Prediabetes Screening Test, and 15.83% had hemoglobin A1C levels indicative of undiagnosed prediabetes or diabetes. Screening in a dental setting would have the highest odds of identifying someone unaware of his or her diabetes risk among those who were non-White, obese, or ≥45 y old. Conclusion: Extrapolation from this analysis indicates that screening for prediabetes at dental visits has the potential to alert an estimated 22.36 million adults of their risk for prediabetes or diabetes. Incorporating prediabetes or diabetes risk assessment into routine dental visits may enable 1) those with prediabetes to take action to decrease their risk of developing diabetes and 2) those with diabetes to engage in treatment to decrease their risk of diabetes-related complications. Knowledge Transfer Statement: Screening for prediabetes and diabetes during dental visits has the potential to raise patients’ awareness of diabetes risk and prevent prediabetes from progressing to diabetes. For some patients, the dental visit may be the only point of contact with the health care system, which heightens the importance of including diabetes risk assessment for patient well-being. (shrink)

Currently, any dentist in the UK who is HIV-seropositive must stop treating patients. This is despite the fact that hepatitis B-infected dentists with a low viral load can continue to practise, and the fact that HIV is 100 times less infectious than hepatitis B. Dentists are obliged to treat HIV-positive patients, but are obliged not to treat any patients if they themselves are HIV-positive. Furthermore, prospective dental students are now screened for hepatitis B and C and HIV, and are (...) not allowed to enrol on Bachelor of Dental Surgery degrees if they are infectious carriers of these diseases. -/- This paper will argue that: (i) the current restriction on HIV-positive dentists is unethical, and unfair; (ii) dentists are more likely to contract HIV from patients than vice versa, and this is not reflected by the current system; (iii) the screening of dental students for HIV is also unethical; (iv) the fact that dentists can continue to practise despite hepatitis B infection, but infected prospective students are denied matriculation, is unethical; and (v) that the current Department of Health protocols, as well as being intrinsically unfair, have further unethical effects, such as the waste of valuable resources on ‘lookback’ exercises and the even more damaging loss of present and future dentists. Regulation in this area seems to have been driven by institutional fear of public fear of infection, rather than any scientific evidence or ethical reasoning. (shrink)

This study examines the relationship between gender, class, and race through a case study of the Ontario, Canada dental profession in the first two decades of the twentieth century. During this time period dentists endeavored to solidify their claims to professional status by defining their relations with patients, the public, and with dental assistants. Dentists drew on gender, class, and racial-ethnic relations and ideology in defining these relations and fostering their professional identity. Dentists' use of these relations enabled them to (...) define and defend their claims to professional authority in the area of dental health. (shrink)

Doctors and dentists have traditionally used antibiotic prophylaxis in certain patient groups in order to prevent infective endocarditis (IE). New guidelines, however, suggest that the risk to patients from using antibiotics is higher than the risk from IE. This paper analyses the relative risks of prescribing and not prescribing antibiotic prophylaxis against the background of Pascal’s Wager, the infamous assertion that it is better to believe in God regardless of evidence, because of the prospective benefits should He exist. Many (...) doctors seem to believe the parallel proposition that it is better to prescribe antibiotics, regardless of evidence, because of the prospective benefit conferred upon the patient. This has been called the “no lose philosophy” in medicine: better safe than sorry, even if the evidence inconveniently suggests that following this mantra is potentially more likely to result in sorry than safe. It transpires that, just as Pascal’s Wager fails to convince because of a lack of evidence to support it and the costs incurred by trying to believe, so the “belts and braces” approach of prescribing antibiotic prophylaxis is unjustifiable given the actual evidence of potential risk and benefit to the patient. Ultimately, there is no no-lose if your clinical decisions, like Pascal’s Wager, are based on faith rather than evidence. (shrink)

Background The field of bioethics examines the moral and ethical dilemmas that arise in the biological sciences, healthcare, and medical practices. There has been a rise in medical negligence cases, complaints against healthcare workers, and public dissatisfaction with healthcare professionals, according to reports from the Indian Medical Council and other healthcare associations. We intend to assess the level of knowledge, attitude, and practice of bioethics among the registered healthcare professionals (HCPs) of Maharashtra, India. Methods A State-level online survey was conducted (...) among the registered HCPs (n = 2143) casing all five regions of the Maharashtra state using a pre-tested self-administered questionnaire. The responses were expressed as mean, and proportions with their standard deviation and 95% CI respectively. Binary logistic regression and a multivariate logistic model were used to determine factors associated with knowledge, attitude, and practice of bioethics. Results Of the 2143 registered HCPs in Maharashtra included in this study, most of them (65.2%) had adequate knowledge of bioethics. Adequate knowledge was associated with lower age, profession (nurses and dentists), employment in the private sector, HCPS at Marathwada and Pune, and higher educational attainment. About 3 in 5 HCPs (59.4%) had a favorable attitude towards the ethical practice of bioethics, and was associated with profession, place of work, region of practice, and work experience. The distribution of unethical bioethics practices among 10 items was proportionally high, and only 34.4% reported good/fair practice. The common unethical practices in the state were allowing patients to be examined by interns, and not informing them about professional misconduct to the regulatory bodies. Conclusion Most HCPs had adequate knowledge of bioethics, which is encouraging and would favor the laying foundation for forming a good bioethics framework. Only 3/5 HCPs demonstrated a favorable attitude, and the observed unethical practice is alarmingly common. A serious consideration to evaluate the compliance level of bioethics practice periodically and measures to educate, sensitize, and train bioethics among HCPs in Maharashtra is warranted. (shrink)

Despite the heavy emphasis on consent in the ethical code of the General Dental Council (GDC), it is often overlooked that communication difficulties between patient and dentist can cause problems in maintaining genuine consent during interventions. Inconsistencies in the GDC's Standards for dental professionals and Principles of patient consent guidelines are examined in this article, and it is concluded that more emphasis must be placed on continuous consent as an ongoing process essential to maintaining patients' dignity in (...) dentistry. (shrink)

This article examines whether cosmetic interventions by dentists and plastic surgeons are medically indicated and, hence, qualify as medical interventions proper. Cosmetic interventions (and the business strategies used to market them) are often frowned upon by dentists and physicians. However, if those interventions do not qualify as medical interventions proper, they should not be evaluated using medical-ethical norms. On the other hand, if they are to be considered medical practice proper, the medical-ethical principles of nonmaleficence, beneficence, justice and others hold (...) true for cosmetic interventions as much as they do for other medical and dental interventions. It is concluded that most cosmetic interventions do not qualify as medical interventions proper because they do not restore or maintain the patient's health (defined as the patient's integrity) by any objective standards. Rather, cosmetic interventions are intended to enhance a person's physical appearance; more specifically, they intend to fulfill the client's subjective perception of an enhanced appearance. (shrink)

Purpose: The purposes of this study were to investigate the relationship between dental anxiety amongst pregnant women and their dental attendance patterns, considering various sociodemographic factors, at health centers in the Kingdom of Saudi Arabia. Materials and Methods: Participants in this cross-sectional descriptive study were 386 pregnant women seeking care at Saudi Ministry of Health centers. A validated version of the Modified Dental Anxiety Scale (MDAS) was used to measure dental anxiety. Questionnaires including background data and dental anxiety were used (...) and clinical data were collected. The association between oral health literacy and dental anxiety was evaluated with Spearman’s correlation coefficient. A multiple linear regression model with dental anxiety (MDAS score) as the dependent variable was developed to investigate further the relationship dental anxiety amongst pregnant women and their dental attendance patterns. Results: The prevalence of dental anxiety was very anxious (3.595). According to a multiple binary logistic regression model, previous experiences with dentists, household income, educational level, number of times and months of pregnancy, and the perception that oral care should be avoided during pregnancy were independently associated with dental anxiety. Conclusions: Dental anxiety in pregnant women is linked to social and psychological factors, in addition to oral health. Specifically, prior experiences with dentists, attitudes toward dental care, and general fear appear to have the strongest influence on dental anxiety. The prevalence of dental anxiety was high among this sample of pregnant women. The study shows that dental care providers need to pay attention to providing a supportive dental care situation, where patients should not experience pain. There is a need to understand the psychological factors associated with dental care procedures. (shrink)

--Do patients have the right to know their physician's HIV status?-Can a dentist refuse treatment to an HIV-positive patient?-How do educators determine whether to allow an HIV-positive child to attend school, and if they do, should the parents of other children be informed?-Should a counselor break confidentiality by disclosing to a wife that her husband is infected with HIV?This collection of original essays carefully examines the difficult moral choices the AIDS pandemic has presented for many professionals-physicians, nurses, dentists, (...) teachers and school administrators, business managers, psychotherapists, lawyers, clergy, journalists, and politicians. In the workplace, problems posed by HIV and AIDS have led to a reexamination of traditional codes of ethics. Providing systematic and reasoned discussions, the authors explore the moral, legal, and ethical issues involved in the reconsideration of policies, standards of conduct, and the practicality of balancing personal and professional ethics. Author note: Elliot D. Cohen is Professor of Philosophy at Indian River Community College and Editor-in-Chief of the International Journal of Applied Philosophy.Michael Davis is Senior Research Associate at the Center for the Study of Ethics in Professions, Illinois Institute of Technology. (shrink)

Some of the human relations of doctor and patient, by D.L. Edsall.--The care of patients. Its psychological aspects, by C.F. Martin.--The medical education of Jones, by Smith, by W.S. Thayer.--The significance of illness, by A.F. Riggs.--Some psychological observations by the surgeon, by F. G. Balch.--Human nature and its reaction to suffering, by L.K. Lunt.--The care of the aged, by A. Worcester.--The care of the dying, by A. Worcester.--Attention to personality in sex hygiene, by A. Worcester.

Philosophers and physicians alike tend to discuss the physician-patient relationship in terms of physician privilege and patient autonomy, stressing the duty of the physician to respect the autonomy and the variously elaborated rights of the patient. The authors of this article argue that such emphasis on rights was initially productive, in a first generation of debate on medical ethical issues, but that it is now time for a second generation effort that will stress the importance of the (...) unique experiential aspects of the physician-patient relationship — mutual trust, suffering and healing. We attempt here to initiate this second-generation discussion, presenting the first generation's philosophical background, criticizing it from the perspective of clinical experience, and seeking a synthesis in the relational qualities of patient and physician interacting in a medical context. (shrink)

Background: The importance of trust between patients and healthcare personnel is emphasised in nurses’ and physicians’ ethical codes. Trust is crucial for an effective healthcare personnel–patient relationship and thus for treatment and treatment outcomes. Cultural and linguistic differences may make building a trusting and positive relationship with ethnic minority patients particularly challenging. Although there is a great deal of research on cultural competence, there is a conspicuous lack of focus on the concepts of trust and distrust concerning ethnic minority (...) patients, particularly in relation to the concept of ‘othering’. Aim: To study which factors help build trust or create distrust in encounters between healthcare professionals and hospitalised ethnic minority patients, as well as study the dynamic complexities inherent within the process of ‘othering’. Research design: Qualitative design, in-depth interviews and hermeneutic analysis. Participants and research context: The interviewees were 10 immigrant patients (six women and four men – eight Asians, two Africans – ages 32–85 years) recruited from a south-eastern Norwegian hospital. Ethical considerations: Study approval was obtained from the hospital’s Privacy Ombudsman for Research and the hospital’s leadership. Participation was voluntary and participants signed an informed consent form. Conclusion: Distrust and othering may be caused by differences in belief systems, values, perceptions, expectations, and style of expression and behaviour. Othering is a reciprocal phenomenon in minority ethnic patient–healthcare personnel encounters, and it influences trust building negatively. Besides demonstrating general professional skill and competence, healthcare personnel require cultural competence to create trust. (shrink)

Background: For patients admitted to hospital both pastoral care and privacy or confidentiality are important. Rules related to each have come into conflict recently in the US. Federal laws and other rules protect confidentiality in ways that countermand hospitals’ methods for facilitating access to pastoral care. This leads to conflicts and poses an unusual type of dilemma—one of conflicting values and rights. As interests are elements necessary for establishing rights, it is important to explore patients’ interests in privacy compared with (...) their desire for attention from a cleric.Aim: To assess the willingness of patients to have their names and rooms included on a list by religion, having that information given to clergy without their consent, their sense of privacy violation if that were done and their views about patients’ privacy rights.Methods and participants: 179 patients, aged 18–92 years, admitted to hospital in an acute care setting, were interviewed and asked about their preferences for confidentiality and pastoral support.Results: Most patients did not want to be listed by religion; 58% did not think hospitals should give lists to clergy without their consent and 84% welcomed a visit by their own clergy even if triggered from a hospital list.Conclusions: Values related to confidentiality or privacy and pastoral care were found to be inconsistent and more complicated than expected. Balancing the right to privacy and the value of religious support continue to present a challenge for hospitals. Patients’ preferences support the importance of providing balance in a way that protects rights while offering comprehensive services. (shrink)

Background: With increased attention to patient privacy and autonomy, privacy protection and information provision for patients are becoming increasingly important. Objectives: The aim of this study was to identify and analyse nurses’ and patients’ perceptions of the importance and performance of protecting patients’ privacy and providing them with relevant information. Research design: This study is a descriptive cross-sectional investigation. Participants and research context: Participants were 168 patients hospitalised in medical and surgical wards and 176 nurses who cared for them. (...) Ethical consideration: This study was approved by the Chung-Ang University Bioethics Committee, and informed written consent was collected from all participants. Findings: Nurses’ recognition of the importance of protecting patients’ privacy and providing adequate information was higher compared to their actual performance, and the nurses’ level of performance was higher in comparison with the patients’ recognition of its importance. Discussion: Although a holistic approach to patient privacy protection and information provision is needed, the medical field has not embraced this model of care. Conclusions: These findings provide empirical data to create an ethical environment for the future, as considerable attention has been devoted to patients’ rights and medical institutions’ liability for providing explanations to patients. (shrink)

Background: The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary. Research objective: This study aimed to offer a comprehensive and clear definition of patient advocacy. Research design: A total of 46 articles and 2 books published between (...) 1850 and 2016 and related to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach. Ethical considerations: This study was approved by the Research Ethics Committee of Tarbiat Modares University. Findings: The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources). Discussion and conclusion: The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After (...) the Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

Advanced AI systems are rapidly making their way into medical research and practice, and, arguably, it is only a matter of time before they will surpass human practitioners in terms of accuracy, reliability, and knowledge. If this is true, practitioners will have a prima facie epistemic and professional obligation to align their medical verdicts with those of advanced AI systems. However, in light of their complexity, these AI systems will often function as black boxes: the details of their contents, calculations, (...) and procedures cannot be meaningfully understood by human practitioners. When AI systems reach this level of complexity, we can also speak of black-box medicine. In this paper, we want to argue that black-box medicine conflicts with core ideals of patient-centered medicine. In particular, we claim, black-box medicine is not conducive for supporting informed decision-making based on shared information, shared deliberation, and shared mind between practitioner and patient. (shrink)

Despite growing consumerism and skepticism about authority in the culture as a whole, most patients continue to be pliant. If there is a serious threat to physician autonomy, it is more likely to come from third‐party payers and new forms of medical practice, particularly the rise of for‐profit hospital chains, than from patients. Though physicians are restless, they will learn to adapt to the new conditions of practice.

In this article we report relevant data that shed light on the topic of hope and patients’ expectations in the use of DBS, for standard, approved, and established indications, based on a broader qualitative study on the ethical and social challenges that healthcare providers face in the field of DBS.

In recent years, the rights of patients have assumed a more pivotal role in international discussion. Stricter laws on the protection of patients place greater priority on the perspective and the status of patients. The purpose of this study is to emphasize ethical aspects in communication, the role of patient advocates as contacts for the concerns and suggestions of patients, and how many problems of ethics disappear when communication is highlighted. We reviewed 680 documented cases of consultation in a (...) 10-year period of patient advocates’ activity at a big German university hospital with 1,300 beds. On the basis of this extensive material, the article will focus on the intersection of the advocate’s work with the problems of patients in hospitals. Deficits in the level of communication between health care professionals and patients were frequently uncovered. Patients primarily complain about the lack of dialogue and empathy. Middle-aged patients consulted the patients’ advocate disproportionately more often. Measured against this baseline, the group of 65 and older complained less frequently. Besides complaints the advocate was asked in more than one-third of all cases for information about medical matters, hospital regulations or administrative problems. Patients obviously see the advocate as a well-connected and ideally unbiased contact person for uncertainties concerning their malady or a potential stay in hospital. Those seeking help often set hope in the information given by the voluntary patient representative. It should be highly recommended for every German hospital to establish the position of a patient advocate. Furthermore, patients can profit from regular exchange between the advocate and the Ethics Committee, also, to help ensure that their rights are taken into account and implemented in an ethically desirable context. (shrink)

In Western societies, participation is promoted as fundamental right of citizens and a prerequisite for better health and quality of life. Over the last 10 years, individual parti-cipation in treat...

The argument that a permanent vegetative state equates to death because it marks the death of the person is not a new one, but I wonder whether Ravelingien et al1 need to regard those in a PVS as dead to make a case for animal to human transplantation trials taking place in such people. It is not an argument likely to convince anyone who refuses to accept that only human persons have inherent value, dignity or a right to life, and (...) the arguments on both sides have been well rehearsed, with no sign of reconciliation. My own view is that people in a PVS are still alive, albeit with a poor quality of life. I see no objection in principle to the proposal that competent people can decide, in advance, to participate in research when they become incompetent. At the present time, it is generally accepted that an advance refusal of consent should be respected. Some controversy exists on whether someone can insist on treatment in advance, but in Ravelingien et al’s1 paper, what is being proposed is not that people can insist on becoming research participants, but rather that they can signal a willingness to become such a participant in the future. Indeed, this principle can be extended to competent people such as those with early …. (shrink)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even (...) if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

BackgroundBioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die."DiscussionAdvances in biotechnology have allowed medical devices to be used as destination therapy that are designed for the permanent support of cardiac function and/or respiration after irreversible loss of these spontaneous vital functions. For permanent support of cardiac function, single ventricle or biventricular mechanical assist devices and total artificial hearts are implanted in the body. Mechanical ventilators extrinsic to the body are used for permanent (...) support of respiration. Clinical studies have shown that destination therapy with ventricular assist devices improves patient survival compared to medical management, but at the cost of a substantial alteration in end-of-life trajectories. The moral and legal assessment of the appropriateness and permissibility of complying with a patient's request to electively discontinue destination therapy in a life-terminating act in non-futile situations has generated controversy. Some argue that complying with this request is ethically justified because patients have the right to request withdrawal of unwanted treatment and be allowed to die of preexisting disease. Other commentators reject the argument that acceding to an elective request for death by discontinuing destination therapy is 'allowing a patient to die' because of serious flaws in interpreting the intention, causation, and moral responsibility of the ensuing death.SummaryDestination therapy with cardiac and/or ventilatory medical devices replaces native physiological functions and successfully treats a preexisting disease. We posit that discontinuing cardiac and/or ventilatory support at the request of a patient or surrogate can be viewed as allowing the patient to die if--and only if--concurrent lethal pathophysiological conditions are present that are unrelated to those functions already supported by medical devices in destination therapy. In all other cases, compliance with a patient's request constitutes physician-assisted death because of the pathophysiology induced by the turning off of these medical devices, as well as the intention, causation, and moral responsibility of the ensuing death. The distinction between allowing the patient to die and physician-assisted death is pivotal to the moral and legal status of elective requests for death by discontinuing destination cardiac and/or ventilatory medical devices in patients who are not imminently dying. This distinction also represents essential information that must be disclosed to patients and surrogates in advance of consent to this type of therapy. (shrink)

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing (...) this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

How patients and nurses experience the acute care psychiatric environment The concept of the therapeutic milieu was developed when patients’ hospitalizations were long, medications were few, and one‐to‐one nurse–patient interactions were the norm. However, it is not clear how the notion of ‘therapeutic milieu’ is experienced in American acute psychiatric environments today. This phenomenological study explored the experience of patients and nurses in an acute care psychiatric unit in the USA, by asking them, ‘What stands out to you about (...) this psychiatric hospital environment?’ Three figural themes emerged, contextualized by time, which was a source of stress to both groups: for patients there was boredom, and for nurses, pressure and chaos. Although they shared some themes, nurses and patients experienced them differently. For instance, nurses felt caged‐in by the Plexiglas‐enclosed nursing station, and patients felt caged‐in by the locked doors of the unit. The findings from this US study do not support the existence of the therapeutic milieu as described in the literature. Furthermore, although the nurse–patient relationship was yearned for by nurses, it was nearly absent from patients’ descriptions. The caring experienced by patients was mainly derived from interactions with other patients. (shrink)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare (...) professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)