Health care organization is entering a new age. Focus is increasingly shifting from individual health care institutions to interorganizational collaboration and health care networks. Much hope is set on such networks which have been argued to improve economic efficiency and quality of care. However, this does not automatically mean they are always ethically justified. A relevant question that remains is what ethical obligations or duties one can ascribe to these networks especially because networks involve many risks. Due to their often (...) amorphous and complex structure, collective responsibility and accountability may increase while individual responsibility goes down. We argue that a business ethics approach to ethical obligations for health care networks, is problematic and we propose to opt for a patient perspective. Using the classic four principles of biomedical ethics it is possible to identify specific ethical duties. Based on the principle of justice, health care networks have an ethical duty to provide just and fair access for all patients and to be transparent to patients about how access is regulated. The principle of nonmaleficence implies an obligation to guarantee patient safety, whereas the principle of beneficence implies an obligation for health care networks to guarantee continuity of care in all its dimensions. Finally, the principle of autonomy is translated into a specific obligation to promote and respect patient choice. Networks that fail to meet any of these conditions are suspect and cannot be justified ethically. Faced with daunting challenges, the health care system is changing rapidly. Currently many hopes ride on integrated care and broad health care networks. Such networks are the topic of empirical debate, but more attention should be given to the ethical aspects. Health care networks raise new and pressing ethical issues and we are in need of a framework for assessing how and when such networks are justified. (shrink)

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated (...) risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership. (shrink)

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express (...) themselves verbally. Another problem is that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that uses these items. Few patients felt that obtaining individual consent for each research study was necessary. Most patients expressed the view that researchers should be obligated to inform them (...) about the research use of their items and be subject to self-directed rules. The research community should try to obtain “societal consent regarding an opt-out system” from the public. A salient value-sharing-based governance structure is necessary for obtaining public trust. (shrink)

This paper advocates for the inclusion of patient perspectives in the diagnosis and treatment of eating disorders (EDs) for ethical, epistemological, and pragmatic reasons. We build upon the ideas of a recent editorial published in this journal. Using EDs as their example, the authors argue against dominant DSM-oriented approaches in favor of an increased focus on understanding patients’ subjective experiences. We argue that their analysis stops too soon for the development of practical—and actionable—insights into how to effect the integration (...) of first-person and third-person accounts of EDs. Methods Contextual analysis was used to make the case for patient perspectives. (shrink)

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

Introduction Substitute decision making on behalf of incapable patients is based on the ethical principle of ‘respect for autonomy’. This study was conducted to assess patients' wishes and preferences in terms of a substitute decision maker and determinants of such preferences. Methods The authors conducted a cross-sectional study and selected samples randomly from patients presenting at Farabi Eye Hospital clinics who were 18 years of age or older. Questionnaires were completed through interviews. Results 200 patients between the ages of 18 (...) and 83 years were interviewed. About 52% (N=105) were men and 73% (N=77) were married. Among married patients, the spouse was chosen as the substitute decision maker in only 51% of cases. Single men preferred their father first in 36% (N=9) of cases, while single girls chose their father in 5.6% (N=1) of cases and their most prevalent choice was other unmentioned people (33.3%, N=6). Most patients (93.5%) wished to be asked about their substitute decision maker when hospitalised. Conclusion The results of this study show that the people we usually consult for decisions concerning patient treatment are significantly different from the patients' preferred substitute decision makers. The authors suggest patients be allowed to choose their substitute decision maker while conscious. (shrink)

COVID-19 Pandemic might be considered as a catalyst for transformation in healthcare experience via the use of video consultation as a method for telemedicine. The aim of our qualitative study is to understand the patient perception of video consultations in telemedicine, which has been used by a single pulmonologist in only one university hospital in Turkey since the first three months of the pandemic. Research findings are essential when it comes to a more effective and widespread future use of (...) telemedicine, as it focuses on patient experience about a medical technology that is newly introduced. Totally 30 patients were randomly chosen and interviewed who get healthcare support via telemedicine. A semi-structured questionnaire was used to learn the experiences and opinions of the interviewees. The expressions of the patients highlight some advantages of using telemedicine such as being free from risk of contagion caused by exposure in the hospital, being able to save time and money while reaching to the physician online whenever needed, and success in technical details even though they were experiencing it for the first time. A very few of the patients are feeling discomfort to be in front of the screen. Almost all patients are applicants to suggest to other individuals the system they used, in conditions to be appropriate, and continuity after the pandemic period. Since the pandemic has propagated from one patient, the worldwide implementation of telemedicine might be catalyzed by following in the footsteps of the sporadic examples of decisiveness nourished from patient experiences. (shrink)

Background The allocation of scarce deceased donor kidneys is a complex process. Transplant providers are increasingly relying on constructs such as frailty and cognitive function to guide kidney transplant (KT) candidate selection. Patient views of the ethical issues surrounding the use of such constructs are unclear. We sought to assess KT candidates’ attitudes and beliefs about the use of frailty and cognitive function to guide waitlist selection.Methods KT candidates were randomly recruited from an ongoing single-center cohort study of frailty (...) and cognitive function. Semi-structured interviews were conducted, and thematic analysis was performed. Inductively derived themes were mapped onto bioethics principles.Results Twenty interviews were conducted (65% contact rate, 100% participation rate) (60% male; 70% White). With respect to the use of frailty and cognitive function in waitlisting decisions, four themes emerged in which participants: (1) valued maximizing a scarce resource (utility); (2) prioritized equal access to all patients (equity); (3) appreciated a proportional approach to the use of equity and utility (precautionary utility); and (4) sought to weigh utility- and equity-based concerns regarding social support. While some participants believed frailty and cognitive function were useful constructs to maximize utility, others believed their use would jeopardize equity. Patients were uncomfortable with using single factors such as frailty or cognitive impairment to deny someone access to transplantation; participants instead encouraged using the constructs to identify opportunities for intervention to improve frailty and cognitive function prior to KT.Conclusions KT candidates’ values mirrored the current allocation strategy, seeking to balance equity and utility in a just manner, albeit with conflicting viewpoints on the appropriate use of frailty and cognitive impairment in waitlisting decisions. (shrink)

Background Equal access to healthcare is a core principle in Norway’s public healthcare system. The COVID-19 pandemic challenged healthcare systems in the early phase – in particular, related to testing and hospital capacity. There is little knowledge on how older people experienced being infected with an unfamiliar and severe disease, and how they experienced the need for healthcare early in the pandemic Aim To explore the experiences of older people infected by COVID-19 and their need for testing and hospitalisation. Research (...) design An explorative and descriptive approach, with qualitative interviews conducted in October 2020. Participants and research context Seventeen participants above 60 years of age hospitalised due to COVID-19 during spring 2020 were recruited 6 months after discharge. Ethical considerations Ethical approval was granted by the Regional Committee for Medical and Health Research Ethics in South-Eastern Norway (155425). Findings The main finding was that the informants experienced vulnerability and arbitrariness. This finding was supported by three sub-themes: experiences with a severe and unfamiliar disease, the strict criteria and the importance of someone advocating needs. Discussion Participants described varying access to healthcare. Those who did not meet the national criteria to be tested or hospitalised struggled against the system. Findings reveal arbitrary access to healthcare, in contrast to Norway’s ethical principle of fair and just access to health services. Moreover, to access and receive necessary healthcare, informants were dependent on their next-of-kin’s advocacy. Conclusion Even when dealing with an unfamiliar disease, health professionals’ assessments of symptoms must be performed with an ethical obligation to applicate competent appraisal and the exercise of discernment; this is in line with care ethics and ethical standards for nurses. These perspectives are a significant part of caring and the intension of doing good. (shrink)

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future (...) scenario-based interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

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

BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a (...) convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed. Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained. (shrink)

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

Public health aims to provide universal safety and progressive opportunities to populations to realise their highest level of health through prevention of disease, its progression or transmission. Screening asymptomatic individuals to detect early unapparent conditions is an important public health intervention strategy. It may be designed to be compulsory or voluntary depending on the epidemiological characteristics of the disease. Integrated screening, including for both syphilis and cancer of the cervix, is a core component of the national reproductive health program in (...) Kenya. Screening for syphilis is compulsory while it is voluntary for cervical cancer. Participants’ perspectives of either form of screening approach provide the necessary contextual information that clarifies mundane community concerns. (shrink)

Background: Mental health professionals working in correctional contexts engage a double role to care and control. This dual loyalty conflict has repeatedly been criticized to impede the development of a high-quality alliance. As therapeutic alliance is a robust predictor of outcome measures of psychotherapy, it is essential to investigate the effects of this ethical dilemma. Methods: This qualitative interview study investigates patients’ perceptions of their therapists’ dual role conflict in court-mandated treatment settings. We interviewed 41 older incarcerated persons using a (...) semi-structured interview guide, the interviews were subsequently analyzed following thematic analysis. Results: We first present the patients’ perceptions of their treating psychotherapist’s dual loyalty conflict, which was linked to their overall treatment experience. In a second step, we outline the study participants’ reasons for this judgment, which were most commonly linked to feelings of trust or betrayal. More specifically, they named certain therapist characteristics and activities that enabled them to develop a trustful therapeutic alliance, which we grouped into four topics: respecting the patient’s pace and perceived coercion; patient health needs to be first priority; clarity in roles and responsibilities; and the art of communication – between transparency and unchecked information sharing. Discussion: Developing a high quality alliance in mandatory offender treatment is central due to its relationship with recovery and desistance. Our findings show that some therapists’ characteristics and activities attenuate the negative impact of their double role on the development and maintenance of the alliance. To increase the effectiveness of court-mandated treatments, we need to support clinicians in dealing with their dual role to allow the formation of a high quality therapeutic alliance. Our qualitative interview study contributed to this much-needed empirical research on therapist’ characteristics promoting a trustful relationship in correctional settings. (shrink)

Aim: Understanding the effects of psychotherapy is a crucial concern for both research and clinical practice, especially when outcome tends to be negative. Yet, while outcome is predominantly evaluated by means of quantitative pre-post outcome questionnaires, it remains unclear what this actually means for patients in their daily lives. To explore this meaning, it is imperative to combine treatment evaluation with quantitative and qualitative outcome measures. This study investigates the phenomenon of non-improvement in psychotherapy, by complementing quantitative pre-post outcome scores (...) that indicate no reliable change in depression symptoms with a qualitative inquiry of patients’ perspectives. Methods: The study took place in the context of a Randomized Controlled Trial evaluating time-limited psychodynamic and cognitive behavioural therapy for major depression. A mixed methods study was conducted including patients’ pre-post outcome scores on the BDI-II-NL and post treatment Client Change Interviews. Nineteen patients whose data showed no reliable change in depression symptoms were selected. A grounded theory analysis was conducted on the transcripts of patients’ interviews. Findings: From the patients’ perspective, non-improvement can be understood as being stuck between knowing versus doing, resulting in a stalemate. Positive changes (mental stability, personal strength and insight) were stimulated by therapy offering moments of self-reflection and guidance, the benevolent therapist approach and the context as important motivations. Remaining issues (ambition to change but inability to do so) were attributed to the therapy hitting its limits, patients’ resistance and impossibility and the context as a source of distress. “No change” in outcome scores therefore seems to involve a “partial change” when considering the patients’ perspectives. Conclusion: The study shows the value of integrating qualitative first-person analyses into standard quantitative outcome evaluation and particularly for understanding the phenomenon of non-improvement. It argues for more multi-method and multi-perspective research to gain a better understanding of (negative) outcome and treatment effects. Implications for both research and practice are discussed. (shrink)

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help (...) make treatment decisions for decisionally-incapacitated patients. -/- Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n=26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. -/- Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. -/- Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it. (shrink)

Depression has been widely studied by researchers from different fields, but its causes, and mechanism of action are still not clear. A difficulty emerges from the shifting from objective diagnosis or analysis to exploration of subjective feelings and experiences that influence the individuals' expression, communication and coping in facing depression. The integration of the experiential dimension of the first-person in studies on depression–and related methodological recommendations–are needed to improve the validity and generalizability of research findings. It will allow the development (...) of timely and effective actions of care. Starting from providing a summary of the literature on theoretical assumptions and considerations for the study of the mind, with particular attention to the experiential dimension of patients with depression, this contribution is aimed to provide practical suggestions for the design of research able to incorporate first- and third-person accounts. It is also aimed to review qualified phenomenological methods for the acquisition and interpretation of experiential data in patients with depression. Recognizing the first-person perspective in the study of depression is a major step toward a better understanding and treatment of this disorder. Theoretical constructs and technique suggestions that result from this review offer a valid starting point for the inclusion of the experiential dimension to common third-person research in the study of the mind. (shrink)

In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards, as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the (...) Swedish Rheumatism Association and to all ERB board members in Sweden. Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention, whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda. (shrink)

The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was (...) distributed to 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions. (shrink)

This study examined cancer patients’ perceived emotional and informational support from a variety of interpersonal and media sources. We recruited patients from cancer patient association websites and online cancer forums and asked them to report to what extent they received support from interpersonal and media sources. Patients rated professional sources and personal sources as nearly equal sources of emotional support; however, professional sources were rated as significantly greater sources of informational support. Although family and oncologists were the most mentioned (...) interpersonal sources of support, they were also the most mentioned disappointing sources. Of the media sources, online interaction sources were rated as nearly equivalent sources of emotional support as interpersonal sources. That patients perceived emotional support, not only informational support, from various media sources is promising since interpersonal sources can be disappointing to some patients. (shrink)

BackgroundPublic health guidelines have recommended that elective medical procedures, including deep brain stimulation surgery for Parkinson’s disease, should not be scheduled during the coronavirus pandemic to prevent further virus spread and overload on health care systems. However, delaying DBS surgery for PD may not be in the best interest of individual patients and is not called for in regions where virus spread is under control and inpatient facilities are not overloaded.MethodsWe administered a newly developed phone questionnaire to 20 consecutive patients (...) with PD who received DBS surgery in Ruijin Hospital in Shanghai during the COVID-19 pandemic. The questionnaire was designed to gather the patients’ experiences and perceptions on the impact of COVID-19 on their everyday activities and access to medical care.ResultsMost of the patients felt confident about the preventive measures taken by the government and hospitals, and they have changed their daily living activities accordingly. Moreover, a large majority of patients felt confident obtaining access to regular and COVID-19-related health care services if needed. Routine clinical referral, sense of security in the hospital during the outbreak, and poor control of PD symptoms were the three main reasons given by patients for seeking DBS surgery during the COVID-19 pandemic.ConclusionThe COVID-19 pandemic has considerably impacted medical care and patients’ lives but elective procedures, such as DBS surgery for PD, do not need to be rescheduled when the health care system is not overloaded and adequate public health regulations are in place. (shrink)

Patients have the right to refuse their treatment; however, this refusal should be informed. We evaluated the quality of the informed refusal process in Iranian hospitals from patients' viewpoints. To this end, we developed a questionnaire that covered four key aspects of the informed refusal process including; information disclosure, voluntariness, comprehension, and provider-patient relationship. A total of 284 patients who refused their treatment from 12 teaching hospitals in the Isfahan Province, Iran, were recruited and surveyed to produce a convenience (...) sample. Patients' perceptions about the informed refusal process were scored and the mean scores of the four components were calculated. The findings showed that the practice of information disclosure was perceived to be moderate, however, comprehension, voluntariness and provider–patient relationship were perceived to be relatively good. We found that patients, who refused their care before any treatment had commenced, reported a lower quality of information disclosure and voluntariness. Patients informed by nurses and those who had not had a previous related admission, reported lower scores for comprehension and relationship. In conclusion, the process of obtaining informed refusal was relatively satisfactory except for levels of information disclosure. To improve current practices, Iranian patients need to be better informed about; different treatment options, consequences of treatment refusal, costs of not continuing treatment and follow-ups after refusal. Developing more informative refusal forms is needed. (shrink)

ZusammenfassungDas Paradigma einer „personalisierten Medizin“ in der klinischen Forschung und Praxis wirft verschiedene Fragen nach Notwendigkeit, Erwartung, Chancen und Risiken auf. In einer laufenden empirisch-ethischen Studie untersuchen wir klinische Forscher- und Patientenperspektiven hinsichtlich des zukünftigen Einsatzes „personalisierter Medizin“ beim Rektumkarzinom. Ziel der Studie ist es, mittels Interviews mit Ärzten/forschern und Patienten und teilnehmender Beobachtung bei Arzt-Patient-Gesprächen ethisch relevante Aspekte der Erforschung und Behandlung im Kontext „personalisierter Medizin“ zu explorieren. Die Analyse von Unterschieden und Gemeinsamkeiten zwischen den Gruppierungen dient der (...) Detektion von Konfliktfeldern in der klinischen Praxis. Es zeigt sich, dass Patienten und Ärzte unterschiedliche Annahmen von „personalisierter Medizin“ haben. Dies könnte zu Konflikten in der klinischen Praxis führen, die so früh wie möglich geklärt werden sollten. (shrink)

Objective To find whether Western guidelines on breaking bad news in a nonemergency department are appropriate for an emergency department of a non-Western country; according to patients’ preferences. Method We designed a 19 items questionnaire of Likert-type scale and interviewed 156 patients in the emergency department of a referral hospital in Iran. Results The patients’ preferences in 9 out of 19 statements were similar to the guidelines. “Using the maternal language” received the strongest agreement. The strongest disagreement was on “encouraging (...) the patients to talk after receiving bad news.” The summative scores of subsection indicated strong agreement for cultural issues, followed by communication skills, breaking bad news session, and privacy. Conclusion The patients’ preferences were not completely consistent with the guidelines. We could not determine if it was a situational or cultural issue. However, it is reasonable to design a new guideline for breaking bad news, considering these factors. (shrink)

IntroductionInformed consent is a body of shared decision-making process and voluntary authorization of patients to receive medical or surgical intervention. There are limited studies conducted so far to examine the practice of informed consent in Ethiopia. This study aimed to assess the practice of informed consent process for surgery and Anesthesia.MethodA cross-sectional study was conducted from March to May 2019. The data were collected using interviewer-administered structured questionnaire and analyzed in SPSS version 23.ResultsA total of 139 patients were interviewed in (...) this study. Most 42(30.2%) of patients were in the age group of 29–38 years. Nearly half 68 (48.9%) of the patients were informed the benefits of the surgical procedure and 78(56.1%) of the patients were informed on the type of anesthesia to be administered while 65 (46.8%) were not informed on any complication related to the anesthesia. About 66 (47.5%) of patients were informed on alternatives to the surgery. Of these patients, 39(59%) were not informed of any benefits and possible risks associated with the alternative modes of treatment. About half (54%) of the patients were reported as they were understood the information provided during the pre-operative informed consent process.ConclusionThis research revealed that patients were inadequately informed on the complications of proposed procedure, alternative forms of treatment, risks and benefits of the proposed procedure. Therefore, healthcare providers should provide adequate information regarding the proposed procedure and make sure whether patients understood the risks and benefits before the consent. (shrink)

In the past 50 years, ethical concerns concerning human experimentation have arisen with the advancement of new medical research and technology. While the benefits of human experimentation are well known in the fields of biology, psychology, sociology, and medicine, the conditions of human subject research have been persistently controversial. This book discusses ethical perspectives, emerging developments and global challenged of patient rights. Topics include effective medical informed consent; rights to health and dental care; the ethics of HIV screening targeted (...) to the seriously mentally ill; and problems in ethics for medical publication. (shrink)

This study investigated subjective experiences of nine men who had been psychiatrically hospitalized upon being assessed as "dangerous-to-others-due-to-a-mental-illness." Using a phenomenological interviewing approach, researchers helped subjects construct narratives of their pre-hospitalization experiences. The research illuminated aspects of life-contexts that were shared among all or nearly all subjects: feeling ostracized and alone; struggling with longstanding and pervasive feelings of inadequacy; experiencing a sense or a fear of having little or no control or options in life; and feeling emotionally depressed, misunderstood, and (...) uncared for. Situations immediately preceding hospitalization were characterized by subjects experiencing threats to their sense of self-esteem that were of heightened intensity. In five cases, subjects reported anxiety related to self-fragmentation or becoming "nothing." Perceived threats to self-worth and self-structure were accompanied by anger and aggressive acts or impulses. In all cases, aggressive impulses and threats, and violence appeared to be in the service of self-validation and self-empowerment. In cases of violent behavior, an apparent function of the subjects' behaviors was toward self-consolidation. Based on findings, the researchers discuss implications consistent with humanistic psychology and existential psychotherapy principles and practices. (shrink)

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

Recent media articles have stirred controversy over anecdotal reports of medical students practising educational pelvic examinations on women under anaesthesia without explicit consent. The understandable public outrage that followed merits a substantive response from the medical community. As medical students, we offer a unique perspective on consent for trainee involvement informed by the transitional stage we occupy between patient and physician. We start by contextualising the role of educational pelvic examinations under anaesthesia (EUAs) within general clinical skill development (...) in medical education. Then we analyse two main barriers to achieving explicit consent for educational pelvic EUAs: ambiguity within professional guidelines on how to operationalize ‘explicit consent’ and divergent patient and physician perspectives on harm which prevent physicians from understanding what a reasonable patient would want to know before a procedure. To overcome these barriers, we advocate for more research on patient perspectives to empower the reasonable patient standard. Next, we call for minimum disclosure standards informed by this research and created in conjunction with students, physicians and patients to improve the informed consent process and relieve medical student moral injury caused by performing ‘unconsented’ educational pelvic exams. (shrink)