Se realizó esta investigación con el objetivo de describir la evolución histórica del Hospital Provincial Docente de Oncología "María Curie" de Camagüey. Surgió con la constitución de la Liga Contra el Cáncer en Camagüey en 1941 hasta su desaparición en 1960, que logró el propósito inicial de construir un dispensario anticanceroso. Debido a la mala atención médica brindada por los gobiernos republicanos se destacó el gesto desinteresado del pueblo camagüeyano con su aporte económico para la construcción de este dispensario. (...) Con el triunfo revolucionario se logró transformar en hospital, que junto al desarrollo de la Oncología en la provincia, es actualmente un centro de alto nivel científico para la atención al pueblo. La información fue obtenida de personalidades que participaron en su creación, fotos y periódicos de la época, además de documentos existentes en el Archivo Histórico de Camagüey. An investigation was carried out with the objective of describing the historical evolution of the Provincial Teaching Oncology Hospital “María Curie” of Camagüey. It was originated with the constitution of the League against Cancer in Camagüey in 1941 until its disappearance in 1960, achieving the initial purpose of building up an anti-cancerous dispensary. Due to the bad medical attention given by the republican governments, it stood out the generous gesture of the people of Camagüey with its economic contribution for the construction of this dispensary. With the triumph of the revolution it was turned into a hospital, which together with the development of the oncology in the province is currently a high scientific level center for the attention of the people. The information was obtained from personalities that took part in its creation, photos and papers of the period, along with documents of the Historical Archive of Camagüey. (shrink)

The image of “the good nurse” is mainly studied from the perspective of nurses, which often does not match the image held by patients. Therefore, a descriptive study was conducted to examine oncology patients’ perceptions of “the good nurse” and the influence of patient- and context-related variables. A cross-sectional, comparative, descriptive design was used. The sample comprised 557 oncology patients at one of six Flemish hospitals, where they were treated in an oncology day-care unit, oncology (...) class='Hi'>hospital ward, or palliative care unit. Data were collected using the Flemish Care-Q instrument. Factor analysis summarised the most important characteristics of “the good nurse”. We reassessed the reliability and construct validity of the Flemish Care-Q and examined the influence of patient- and context-related variables on patient perceptions. Using factor analysis, we grouped the different items of the Flemish Care-Q according to three characteristics: “the good nurse” (I) has a supportive and communicative attitude towards patient and family, (II) is competent and employs a professional attitude, and (III) demonstrates personal involvement towards patient and family. Median factor scores of Factors I, II, and III, respectively, were 8.00, 9.00, and 8.00 (varying from 1, not important, to 10, very important). In order of importance, Factors II, I, and III were identified as valuable characteristics of “the good nurse”. Gender, care setting, and province were influential variables. As perceived by oncology patients, “the good nurse” has a broad range of qualities, of which competence and professionalism are the most valuable. (shrink)

Research question and aim Clinical Ethics Committees (CECs) aim to support healthcare professionals (HPs) and healthcare organizations to deal with the ethical issues of clinical practice. In 2020, a CEC was established in an Oncology Research Hospital in the North of Italy. This paper describes the development process and the activities performed 20 months from the CEC’s implementation, to increase knowledge about CEC’s implementation strategy. Research design We collected quantitative data related to number and characteristics of CEC activities (...) carried out from October 2020 to June 2022 using the CEC internal database. Data were reported descriptively and compared with data from the literature to provide a complete overview of the CEC’s development and implementation process. Participants and research context The study has been conducted at the local health authority (LHA) of Reggio Emilia. It is a report of the activities provided by the CEC, where no HPs or patients were involved. Ethical Considerations The report is part of a larger study named EVAluating a Clinical Ethics Committee implementation process (EvaCEC), which has been approved by the Local Ethics Committee (AUSLRE Protocollo n° 2022/0026554 of 24/02/2022). EvaCEC is also the first author's PhD project. Findings In total, the CEC performed 7 ethics consultations (EC), published three policies related to particular ethical questions of clinical and organizational practice, provided one educational online course on ethics consultation targeting employed HPs, and promoted a specific dissemination process among the different departments of the LHA. According to our results, the CEC widely fulfilled the standard threefold set of clinical ethics support services tasks (namely, ethics consultation, ethics education, and policy development), but further investigations are needed to evaluate the CEC’s impact on clinical practice. Conclusion Our findings may increase knowledge regarding the composition, role, and tasks of a CEC in an Italian setting, informing future strategies and efforts to regulate these institutions officially. (shrink)

Background: It is stated that the communication and disease experiences of paediatric patients, especially paediatric oncology patients, with healthcare professionals are completely different from those of adults. Objective: The aim of this study was to determine the definitions of a good physician and good nurse provided by elementary school-age oncology patients. Research design: In this qualitative research, data were collected through semi-structured individual interviews. The data were evaluated thorough thematic analysis. Participants and research context: Eighteen children hospitalised due (...) to cancer in paediatric oncology and haematology clinics of a university hospital in Turkey. Ethical considerations: Permission to conduct the study was obtained from the Institution’s Ethics Committee. The objectives of this study were explained to the participants and families, and written consent was obtained from them. Also, participants were assured that necessary measures would be taken to protect their anonymity and confidentiality. Findings: The definitions of children were based on five main themes: interpersonal relationships, virtues, professional responsibility, security and individual characteristics. Conclusion: Children conveyed important messages to health professionals. They emphasised that a good physician and good nurse should communicate well, not only with themselves but also with their family. In addition, children were sensitive about health professionals who played with them and actively participated in the treatment by informing them about the disease. Meeting the expectations of children can be possible by improving the communication skills of physicians and nurses and by adding games and activities to the treatment and care plan. (shrink)

BackgroundThis study aims to quantitatively and qualitatively evaluate the activities of a Bioethics Unit (BU) 5 years since its implementation (2016–2020). The BU is a research unit providing empirical research on ethical issues related to clinical practice, clinical ethics consultation, and ethical education for health care professionals (HPS).MethodsWe performed an explanatory, sequential, mixed-method, observational study, using the subsequent qualitative data to explain the initial quantitative findings. Quantitative data were collected from an internal database and analyzed by descriptive analysis. Qualitative evaluation (...) was performed by semi-structured interviews with 18 HPs who were differently involved in the BU’s activities and analyzed by framework analysis.ResultsQuantitative results showed an extensive increment of the number of BU research projects over the years and the number of work collaborations with other units and wards. Qualitative findings revealed four main themes, concerning: 1. the reasons for contacting the BU and the type of collaboration; 2. the role of the bioethicist; 3. the impact of BU activities on HPs, in terms of developing deeper and more mature thinking; 4. the need to extend ethics support to other settings. Overall, our results showed that performing both empirical bioethics research and more traditional clinical ethics activities at the same unit would produce an impetus to increase collaboration and spread an 'ethical culture' among local HPs.ConclusionsOur findings contribute to a growing body of literature on the models of clinical ethics support services and the role of empirical research in bioethics internationally. They also prepare the ground for the implementation of a multidisciplinary Clinical Ethics Committee (CEC) that aims to support the BU’s ethics consultation service within the local context. (shrink)

BackgroundDiagnosis and treatment of differentiated thyroid carcinomas cause anxiety and depression. Additionally, these patients suffer hormonal alterations that are associated with psychological symptoms. This study aims to evaluate the effectiveness of a psycho-oncological intervention based on counseling to reduce anxiety and depression related to the treatment in patients with DTC.MethodsA non-randomized controlled study, with two groups [experimental group, n = 37, and control group, n = 38] and baseline and posttreatment measures, was designed. Patients in the EG received a psycho-oncological (...) intervention based on counseling in addition to the standard treatment. The independent variable was the assigned group and the dependent one was the evolution of anxiety and depression, which were analyzed separately, and both were evaluated using the Hospital Anxiety and Depression Scale. Other relevant covariables related to the quality of life were also analyzed using Short Form-36 Health Survey and Psychological General Wellbeing Index scales.ResultsThe difference of the posttreatment-baseline variation showed a statistically significant reduction in anxiety and depression in the EG in relation to the CG. The mean of the Psychological General Wellbeing Index scales score increased significantly in the EG and decreased significantly in the CG. All the baseline and the posttreatment scores of the variables evaluated showed a statistically significant improvement in the EG vs. the CG.ConclusionThis study demonstrates significant benefits of psycho-oncological intervention based on counseling in anxiety, depression, QoL, and wellbeing of the patient with differentiated thyroid carcinomas. (shrink)

BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at the psychology department in a general (...) class='Hi'>hospital or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers. (shrink)

One of the difficulties nurses experience in clinical practice in relation to ethical issues in connection with young oncology patients is moral distress. In this descriptive correlational study, the Moral Distress Scale-Paediatric Version (MDS-PV) was translated from the original language and tested on a conventional sample of nurses working in paediatric oncology and haematology wards, in six north paediatric hospitals of Italy. 13.7% of the total respondents claimed that they had changed unit or hospital due to moral (...) distress. The items with the highest mean intensity in the sample were almost all connected with medical and nursing competence and have considerably higher values than frequency. The instrument was found to be reliable. The results confirmed the validity of the MDS-PV (Cronbach’s alpha = 0.959). This study represents the first small-scale attempt to validate MDS-PV for use in paediatric oncology-ematology nurses in Italy. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided (...) guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

Background: Professional nurses provide holistic healthcare to people and deal with patients closely. Furthermore, patients need nurses to do self-care and patients trust them for their treatments. Therefore, trust is extremely important in a professional care relationship and in satisfactory patient outcomes. Objective: The aim of this study was to examine the patients’ views on the trust status toward nurses and the factors important for the development of trust in a nurse–patient relationship. Research design: This research was planned as a (...) descriptive cross-sectional study. Participants and research context: The study was carried out between April and July 2014 at the oncology hospital of a university in Ankara, Turkey. The sample size was calculated by power analysis and was composed of 356 inpatients diagnosed with cancer. For data collection, a questionnaire and the “Trust in Nurses Scale” were used. From the hospital and written informed consent obtained from participating patients: Approval from the University Clinical Research Ethics Committee was obtained. Written approval was obtained from the hospital and consent letter from the patients. Findings: The average score on the scale was 24.5 ± 3.9, meaning that patients had a high level of trust toward nurses in this hospital. The patients who were in the 50–59 age group and men had statistically higher scores compared with other groups. Patients’ answers revealed that themes of “Personal and Professional Characteristics” were important when developing trust, however “Mistreatment, Professional Incapability, and Communication Problem” were important causing mistrust toward the nurses. Conclusion: In this study, the nurses’ professional competencies and interpersonal caring attributes emerged as most important in developing trust. This study paid attention to the values and attitudes that develop patients’ trust toward nurses. Moreover, the findings raise ethical questions about how the patients’ basic rights are to be protected and how their trust level can be heightened. Nurse managers need to assess continuously how trust toward nurses is developed, protected, and maintained in their institutions. (shrink)

Aim: This study was carried out in order to determine ethical decision-making levels of oncology nurses. Ethical Consideration: Research Ethics Committee's approval was obtained prior to the data collection. Permission to use the Turkish version of the Nursing Dilemma Test was received from Birgül Cerit. Written approval was taken from school administrators to conduct the study confirming that there were no invasive procedures planned for human beings during the study period. The study was conducted in accordance with the Helsinki (...) Declaration. Verbal consent was obtained from each of the nurses who agreed to participate after they were informed about the study content. Method: The population of this study conducted in a descriptive way consisted of a total of 96 nurses working at the oncology units and outpatient chemotherapy units of four different hospitals between September 2017 and March 2018. The study sample included 60 nurses who responded to the question form. The data of the study were collected using “Nurses Information Questionnaire” and “Nursing Dilemma Test” developed by Crisham in 1981. Results: Oncology nurses’ mean scores in Principled Thinking (49.00 ± 6.46) and those in Practical Considerations (18.35 ± 4.47) were found to be above the moderate level. It was determined that the oncology nurses participated in the study were familiar with situations similar to the dilemmas included in the Nursing Dilemma Test (15.00 ± 4.20). Conclusion: It was concluded that oncology nurses try to take ethical principles into consideration but are also affected by environmental factors while making decisions concerning ethical dilemmas. The most frequently encountered ethical dilemmas by oncology nurses include the following: deciding not to perform cardiopulmonary resuscitation, telling the truth to the patient, studies being carried out without the patient’s content, and patient’s refusal of treatment. In order to improve oncology nurses’ critical thinking and ethical decision-making skills, it is important to determine ethical dilemmas encountered by oncology nurses, and nurses should be encouraged to be involved in ethical decision-making process through cooperation with the other healthcare personnel. (shrink)

BackgroundClinical trials should be as inclusive as possible to facilitate equitable access to research and better reflect the population towards which any intervention is aimed. Informed by the UK’s National Institute for Health and Care Research (NIHR) Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) guidance, we audited oncology trials conducted by the Clinical Trials and Statistics Unit at The Institute of Cancer Research, London (ICR-CTSU) to identify whether essential documents were overtly excluding any groups and (...) whether sufficient data were collected to assess diversity of trial participants from groups suggested by INCLUDE as under-served by research in the UK.MethodsThirty cancer clinical trials managed by ICR-CTSU and approved between 2011–2021 were audited. The first ethics approved version of each trial’s protocol, patient information sheet, and patient completed questionnaire, together with the first case report forms (CRFs) version were reviewed. A range of items aligned with the INCLUDE under-served groups were assessed, including age, sex and gender, socio-economic and health factors. The scope did not cover trial processes in participating hospitals.ResultsData relating to participants’ age, ethnic group and health status were well collected and no upper age limit was specified in any trials’ eligibility criteria. 23/30 (77%) information sheets used at least one gendered term to address patients. Most CRFs did not specify whether they were collecting sex or gender and only included male or female categories. The median reading age for information sheets was 15–16 years (IQR: 14–15 – 16–17). Socio-economic factors were not routinely collected and not commonly mentioned in trial protocols.ConclusionsNo systemic issues were identified in protocols which would explicitly prevent any under-served group from participating. Areas for improvement include reducing use of gendered words and improving readability of patient information. The challenge of fully assessing adequate inclusion of under-served populations remains, as socio-economic factors are not routinely collected because they fall beyond the data generally required for protocol-specified trial endpoint assessments. This audit has highlighted the need to agree and standardise demographic data collection to permit adequate monitoring of the under-served groups identified by the NIHR. (shrink)

Background: Ethical climate and moral distress have been shown to affect nurses’ ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field. Research aim: To investigate paediatric oncology nurses’ perceptions of ethical climate and moral distress. Research design: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey–Shortened and the Swedish Moral Distress Scale–Revised. Data analysis includes descriptive statistics and non-parametric analyses. Respondents (...) and research context: Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. Ethical considerations: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. Results: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. Discussion: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. Conclusion: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses. (shrink)

Psychosocial distress is highly prevalent in cancer patients, approaching rates around 40% across various cancer sites according to multicenter studies. As such, distress screening procedures have been developed and implemented to identify and respond to cancer patients' psychosocial distress and concerns. However, many cancer patients continue to report unmet psychosocial needs suggesting gaps in connecting patients with psychosocial services. Presently, there is a paucity of research examining sex-based disparities in referral rates to behavioral oncology services, particularly for adolescent and (...) young adult cancer patients. Informed by gender role conflict and empirical literature documenting disparities in cancer care and treatment based on a variety of sociocultural variables, this study aimed to examine the presence of sex disparities in referral rates to behavioral oncology services for AYA cancer patients. Data for this study consisted of 1,700 AYA cancer patients who completed a distress screening at a large cancer center of a teaching hospital in the Midwestern United. Results indicated that patient sex significantly predicted the odds of behavioral oncology referral. This finding indicates that female AYA cancer patients are 2.5 times more likely to be referred to behavioral oncology services compared to male AYA cancer patients after controlling for psychosocial distress and emotional, family, and practical problems. Additionally, we found that emotional problems significantly moderated the odds of referral for males and females, however the odds of referral for males who endorsed emotional problems were lower than males who did not endorse emotional problems. This contrasted with female AYA cancer patients where the endorsement of emotional problems increased the odds of referral to behavioral oncology services. Findings are discussed with particular focus on how to enhance equitable care and reduce sex and other sociocultural-based disparities in AYA psychosocial oncology. (shrink)

Background Providing care to children with cancer is one of the most challenging areas of ethical care for nurses. Few studies have addressed nurses’ perception of the barriers to giving ethical care in oncology departments. Thus, it is essential that the ethical challenges in caregiving as perceived by oncology nurses be investigated. Objective The present study was conducted to investigate the ethical challenges as perceived by nurses in pediatric oncology units in the south of Iran. Research design (...) The present study is a qualitative work of research with a conventional content analysis design. Data were collected via individual semi-structured interviews. The collected data were analyzed using the qualitative content analysis method. Participants and research context The participants were 21 nurses from pediatric oncology units in state hospitals who were selected by purposeful sampling. Sampling continued until the data were saturated. The study lasted from April to October 2022. Findings Three main themes, promoting psychological safety in the children, respect for the dignity of the children, and expansion of support for families, and nine subthemes were extracted from the data. Ethical considerations The study’s protocol was approved by the Research Ethics Committee of the University of Medical Sciences and ethical principles were followed throughout the study. Discussion and conclusion From the nurses’ perspective, the major ethical challenges in providing ethical care in pediatric oncology units were reducing tension toward promoting the patients’ psychological safety, showing respect for the identity and dignity of the children with cancer, and expanding support of the patients’ families. By creating the right cultural and professional context and establishing proper protocols, healthcare policymakers and administrators can take effective steps toward eliminating the barriers to providing ethical care. (shrink)

Background: The nature of children’s cancer comes with lots of ethical issues. Nurses are encouraged to adhere to ethical codes in their practice. Objectives: This study aimed to compare the perspectives of nurses and mothers of children with cancer regarding the adherence of nurses to ethical codes. Research design: In this descriptive-comparative study, a researcher-made questionnaire was used to assess the amount of adherence to Iranian nurses’ code of ethics in perspectives of pediatric oncology nurses and mothers. As a (...) convention, the total scores were categorized as optimal, average, and low adherence. Participants and context: A total of 200 mothers and 60 nurses in pediatric oncology wards of five major hospitals in Tehran, Iran, participated in 2016. Ethical considerations: Organizational approval by the university and informed consent were ensured before conducting the research. The principles of voluntariness, confidentiality, and anonymity were respected during the research process. Findings: Results showed the mean score of the adherence to ethical codes by nurses, as per the nurses is 86.71 (12.57) and as per the mothers is 78.67 (16.09). The highest frequency for “Low adherence” and “Optimal adherence” to code of ethics by nurses were “Respect for individual autonomy and decision-making” (mothers, 72% and nurses, 70%) and “Commitment to confidentiality” (mothers, 64% and nurses, 74%), respectively. This revealed a significant difference between the responses of the nurses and the mothers (p = 0.001). Discussion: The results support the other studies in Iran about the difference between the perspectives of patients and nurses about adherence of nurses to ethical codes. Conclusion: Integration of family-centered and conventional care in addition to more attention to the education of professional ethical principles could be helpful to improve the ethical performance of nurses in oncology pediatric wards. (shrink)

This article presents results from an empirical investigation of the role and importance of ethics in the daily work of Danish oncologyphysicians and Danish molecular biologists. The study is based on 12 semi-structured interviews with three groups of respondents: a group of oncology physicians working in a clinic at a public hospital and two groups of molecular biologists conducting basic research, one group employed at a public university and the other in a private biopharmaceutical company.We found that (...) class='Hi'>oncology physicians consider ethical evaluation as part of their daily work. They discuss how to treat patients in groups and they have interdisciplinary seminars. In contrast, molecular biologists employed at the university do not think that basic research causes significant ethical problems, they do not talk about ethics in their daily work and they do not want to prioritise seminars on ethics. Molecular biologists employed in a private biopharmaceutical company do not think that basic research causes significant ethical problems, but the private company prioritises ethical evaluation. If the company behaves unethical, they will be punished by the consumers and by the investors in the last end. In general, oncology physicians working in the clinic experience a closer relationship between their daily work and ethical problems concerning human beings than molecular biologists conducting basic research. (shrink)

Background: Patients and their caregivers are expected to take joint responsibility for reporting symptoms and seeking medical assistance, for example, by calling oncology emergency telephones or other helplines during a cancer trajectory. Research objective: The aim was to explore the meaning of responsibility as it appeared in patients’ or caregivers’ experiences of calling an oncological emergency telephone. Design, participants and context: Inspired by qualitative description and qualitative content analysis, a secondary analysis of data from interviews with 12 participants calling (...) the oncological emergency telephone at a Danish university hospital was performed. Ethical considerations: The project observes demands for safekeeping data and all regulations concerning research ethics in agreement with the Nordic Nurses Federation and the Danish Health Act. Findings: Two main themes emerged: (1) to act responsibly as a patient or caregiver was to ‘be watchful and alert’, ‘report symptoms the right way’ and ‘do crosschecking’ and (2) to deal with the burden of responsibility was to ‘feel safe when dealing with the burden of responsibility’ and ‘be relieved from the burden of responsibility’. Discussion: Too much responsibility and a potential imbalance between healthcare professionals’ expectations and callers’ knowledge and capacity to act may place additional burdens on the callers, which may be eased by person-centred care. Conclusion: The meaning of responsibility appeared in the participants’ capacity to act, where they observed, assessed and reported symptoms and controlled prescribed treatments as well as shared or handed over the responsibility to the healthcare providers. Thus, the analysis provided essential knowledge for healthcare professionals on how patients and caregivers handle this responsibility when faced with a cancer disease that is treated on an outpatient basis. (shrink)

Duty of candour legislation was introduced in Scotland in 2018. However, literature and experience of duty of candour when applied to infection control incidents/outbreaks is scarce. We describe clinician and parental perspectives with regard to duty of candour and communication during a significant infection control incident in a haemato-oncology ward of a children’s hospital. Based on the learning from this incident, we make recommendations for duty of candour and communication to patients and families during future infection control incidents. (...) These include the need to consider a crisis management approach, the importance of not underestimating psychological harm in incidents of a prolonged duration and embedding the existing legislation pertaining to the rights of the child. (shrink)

BackgroundLittle previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians’ perceptions of palliative care integration for advanced cancer patients in Changsha, China.MethodsWe conducted semi-structured qualitative interviews with physicians (n = 24) specializing in hematology or oncology at a tertiary hospital.ResultsMost physicians viewed palliative care as equivalent to end-of-life care, while a minority considered (...) it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about prognosis and goals of care. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient’s “right to decide” about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in discussions about goals of care.ConclusionsAs palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in discussions about goals of care. (shrink)

A balance needs to be struck between facilitating compassionate access to innovative treatments for those in desperate need, and the duty to protect such vulnerable individuals from the harms of untested/unlicensed treatments. We introduced a principle-based framework to evaluate such requests and describe its application in the context of recently evolved UK, US and European regulatory processes. 24 referrals were received by our quaternary children's hospital Clinical Ethics Committee over the 5-year period. The CEC-rapid response group evaluated individual cases (...) within 48-hours; the main referrers being haematology/oncology, immunology or transplant services. Most requests were for drug/vaccine/pre-trial access or biological/cellular therapies. The majority of individual requests were approved ; neutral or negative opinions were given in 5, including 3 group requests. Recently evolved regulatory processes share common criteria and conditions to our framework including: demonstration of clinical need; sound scientific basis with lack of viable alternative; risks-benefit/best interests evaluation; arrangements for fully informed consent; no compromise of arrangements to test treatment for licensing purposes; consideration of resource implications. There are differences between individual processes and with our framework, with respect to procedures, scope, application format, costs and obligation to make available all outcome data. Our experience has emphasized the need for an independent, principled, consistent, fair and transparent response to the increasing demand for innovative treatment on a compassionate basis. We believe that there is a need for harmonization of the recent proliferation of regulation and legislation in this area. (shrink)

Objectives: To quantify the use of do-not-resuscitate orders in a tertiary-care children’s hospital and to characterise the circumstances in which such orders are written.Design: Retrospective study conducted in a 500-bed children’s hospital in Taiwan.Patients: The course of 101 patients who died between January 2002 and December 2005 was reviewed. The following data were collected: age at death, gender, disease and its status, place of death and survival. There were 59 males and 42 females with a median age of (...) 103 months . 50 children had leukaemias, and 51 had malignancies other than leukaemia. The t test and the χ2 test were applied as appropriate.Results: The study found that 44% of patient deaths occurred in the paediatric oncology ward; 29% of patient deaths occurred in the intensive care unit; and 28% of patients died in their home or at another hospital. Other findings included the following: 46 of 101 patients died after attempted cardiopulmonary resuscitation and 55 died with a DNR order in effect. The mean age at death was 9.8 years in both groups with or without DNR orders.Conclusions: From the study of patient deaths in this tertiary-care children’s hospital, it was concluded that an explicit DNR order is now the rule rather than the exception, with more DNR orders being written for patients who have been ill longer, who have solid tumours, who are not in remission and who are in the ward. (shrink)

Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce. Objective: The aim of this study (...) was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions. Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used. Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually. Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration. Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties. Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required. (shrink)

Oncological treatments are responsible for many of the physical changes associated with cancer. Because of this, cancer patients are at high risk of developing mental health problems. The aim of this study is to propose an innovative Virtual Reality training that uses a somatic technique to create a bridge with the bodily dimension of cancer. After undergoing a psycho-educational procedure, a combination of exposure, out-of-body experience, and body swapping will gradually train the patient to cope with cancer-related difficulties, increasing stress (...) tolerance, and patient empowerment. The most engaging step of this advanced form of Stress Inoculation Training is the body swapping experience, which will guide the patient in embodying a resilient cancer patient who is facing similar difficulties. Through the VR ability to simulate the human brain functioning, and the potential of embodiment to hook to the somatic dimension of illness, we expect that once the concepts endured through the patient’s experience of resilience are triggered, the patient will be more prone to implement functional coping strategies in real life, reaching empowerment and adjusting to the post-treatment difficulties. When the scenarios are built and the training tested, our intervention could be used to support patients with different oncological diseases and who are treated in different cancer hospitals, as well as patients with other non-oncological problems. Future research should focus on using our paradigm for other clinical populations, and supporting cancer patients in coping with different distressing situations. (shrink)

Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were 28 (...) women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients’ and caregivers’ group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusions: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes. (shrink)

This article provides a discussion of the limits of both narrative and culture based on a close textual analysis of the short story, “People Like That Are the Only People Here: Canonical Babbling in Peed Onk,” by Lorrie Moore. In this story, a mother describes her experiences on a pediatric oncology ward when her infant son develops Wilms' tumor. The authors examine how the story satirically portrays the spurious claims of language, story, and culture to protect us from an (...) unjust universe and then exposes their false promises. The various personal, professional, and genre-specific narratives we use to create order and coherence from the terror of serious illness are ultimately ineffective. Similarly, the superficially comforting culture of the hospital ward cares more about creating the illusion of control than it does about the suffering of sick children. Language and culture cannot make sense of human anguish, the article concludes, yet they are all we have to hold back the chaos. Mystery and uncertainty, as part of the human condition, must become part of our stories and part of our culture. (shrink)

This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary and oncology wards of three university (...) hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses. (shrink)

Off-label prescribing is an integral part of contemporary medicine. Many patients benefit when they receive drugs or devices under circumstances not specified on the label approved by the Food and Drug Administration. An off-label use may provide the best available intervention for a patient, as well as the standard of care for a particular health problem. In oncology, pediatrics, geriatrics, obstetrics, and other practice areas, patient care could not proceed without off-label prescribing. When scientific and medical evidence justify off-label (...) uses, physicians promote patients’ interests by prescribing products off label.Off-label prescribing can also harm patients, however. The potential for harm is greatest when an offlabel use lacks a solid evidentiary basis. A 2006 study examining prescribing practices for 169 commonly prescribed drugs found high rates of off-label use with little or no scientific support. Researchers examining off-label use in U.S. children’s hospitals concluded, “[W]e still have incomplete knowledge about the safety and efficacy of many medications commonly used to treat children across a range of drug classes and clinical diagnoses.”. (shrink)

Background: The complexity and variety of ethical issues in nursing is always increasing, and those issues lead to special concerns for nurses because they have critical impacts on nursing practice. Research objectives: The purpose of this study was to gather comprehensive information about ethical issues in nursing practice, comparing the issues in different types of nursing units including general units, oncology units, intensive care units, operating rooms, and outpatient departments. Research design: The study used a descriptive research design. Ethics/human (...) rights issues encountered by nurses in their daily nursing practice were identified by using the Ethical Issues Scale. Participants: The study sample included 993 staff nurses working in a university hospital in South Korea. Ethical considerations: This study was approved by the University Institutional Review Board. Completed questionnaires were returned sealed with signed informed consent. Findings: The most frequently and disturbingly encountered issues across nursing units were “conflicts in the nurse–physician relationship,” “providing care with a possible risk to your health,” and “staffing patterns that limit patient access to nursing care.” The findings of this study showed that nurses from different nursing units experienced differences in the types or frequency of ethical issues. In particular, intensive care units had the greatest means of all the units in all three component scales including end-of-life treatment issues, patient care issues, and human rights issues. Discussion: Nurses experienced various ethical challenges in their daily practice. Of the ethical issues, some were distinctively and frequently experienced by nurses in a specific unit. Conclusion: This study suggested that identifying and understanding specific ethical issues faced by nurses in their own areas may be an effective educational approach to motivate nurses and to facilitate nurses’ reflection on their experiences. (shrink)

Background: How well ethical concerns are handled in healthcare is influenced by the ethical climate of the workplace, which in this study is described as workplace factors that contribute to healthcare professionals’ ability to identify and deal with ethical issues in order to provide the patient with ethically good care. Objectives: The overall aim of the study was to describe perceptions of the paediatric hospital ethical climate among healthcare professionals who treat/care for children with cancer. Research design: Data were (...) collected using the Hospital Ethical Climate Survey developed by Olsson as a separate section in a questionnaire. Descriptive statistics were used to analyse perceptions of the ethical climate. Participants and research context: Physicians, nurses and nurse-aides (n = 89) from three paediatric units participated in this study: haematology/oncology, chronic diseases and neurology. Ethical considerations: The study was approved by the regional ethical review board. Findings: Different perceptions of the ethical climate were rated as positive or negative/neutral. Nurses’ ratings were less positive than physicians on all items. One-third of the participants perceived that they were able to practice ethically good care as they believed it should be practised. Discussion: Differences in professional roles, involving more or less power and influence, might explain why physicians and nurses rated items differently. A positive perception of the possibility to practice ethically good care seems to be related to inter-professional trust and listening to guardians/parents. A negative/neutral perception of the possibility to practice ethically good care appears to be influenced by experiences of ethical conflicts as well as a lack of ethical support, for example, time for reflection and discussion. Conclusion: The two-thirds of participants who had a negative/neutral perception of the possibility to practice ethically good care are at risk of developing moral stress. Clinical ethics support needs to be implemented in care where important values are at stake. (shrink)

BackgroundThe prognosis of patients undergoing lung cancer treatment might be influenced by mental health status. Resilience is one of the important predictors to reflect the mental health status. It has been shown that patients with higher levels of social support, self-care self-efficacy, and positive coping have greater resilience. This study aimed to determine the mediating role of self-efficacy and positive coping in the relationship between social support and psychological resilience in patients with lung cancer.MethodThis is a cross-sectional study that was (...) conducted in in the oncology departments and thoracic surgical wards of four tertiary hospitals in Hunan Province, China, between November 2016 and November 2017. Three hundred and three patients who were undergoing treatment for lung cancer volunteered their participation in the study. Participants completed questionnaires, including the Chinese version of the Perceived Social Support Seale Scale, the Chinese version of Strategies Used by People to Promote Health Scale, and the Chinese version of the Connor-Davidson Resilience Scale.ResultsMediation analysis indicated that self-care self-efficacy and social support partially mediate the effect of social support on resilience. Direct paths from social support to self-efficacy, self-efficacy to positive coping, positive coping to psychological resilience, self-efficacy to psychological resilience, and social support to psychological resilience were significant. The indirect paths from social support to self-efficacy and self-efficacy to psychological resilience were also significant. The chain mediation from social support to self-efficacy, self-efficacy to positive coping, and positive coping to resilience were significant.ConclusionSelf-efficacy and positive coping play an important role in the relationship between social support and resilience in patients receiving cancer treatment. Social support not only directly influenced psychological resilience but also indirectly influenced psychological resilience through self-efficacy and positive coping. (shrink)

Objective Futile treatment, which by definition cannot benefit a patient, is undesirable. This research investigated why doctors believe that treatment that they consider to be futile is sometimes provided at the end of a patient9s life. Design Semistructured in-depth interviews. Setting Three large tertiary public hospitals in Brisbane, Australia. Participants 96 doctors from emergency, intensive care, palliative care, oncology, renal medicine, internal medicine, respiratory medicine, surgery, cardiology, geriatric medicine and medical administration departments. Participants were recruited using purposive maximum variation (...) sampling. Results Doctors attributed the provision of futile treatment to a wide range of inter-related factors. One was the characteristics of treating doctors, including their orientation towards curative treatment, discomfort or inexperience with death and dying, concerns about legal risk and poor communication skills. Second, the attributes of the patient and family, including their requests or demands for further treatment, prognostic uncertainty and lack of information about patient wishes. Third, there were hospital factors including a high degree of specialisation, the availability of routine tests and interventions, and organisational barriers to diverting a patient from a curative to a palliative pathway. Doctors nominated family or patient request and doctors being locked into a curative role as the _main_ reasons for futile care. Conclusions Doctors believe that a range of factors contribute to the provision of futile treatment. A combination of strategies is necessary to reduce futile treatment, including better training for doctors who treat patients at the end of life, educating the community about the limits of medicine and the need to plan for death and dying, and structural reform at the hospital level. (shrink)

ABSTRACT I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments. INTRODUCTION In contrast to the classic model of randomized-control trials, often with a large number of (...) subjects enrolled, precision medicine attempts to optimize therapeutic outcomes by focusing on the individual.[i] A recent publication highlights the strengths and weakness of both traditional evidence-based medicine and precision medicine.[ii] Plus, it outlines a tension in the shift from evidence-based medicine’s inductive reasoning style (the collection of data to postulate general theories) to precision medicine’s abductive reasoning style (the generation of an idea from the limited data available).[iii] The paper’s main example is the application of precision medicine for the treatment of cancer.[iv] I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. As the name suggests, brain-computer interfaces are a significant advancement in neurotechnology that directly connects someone’s brain to external or implanted devices.[v] Among the various kinds of brain-computer interfaces, adaptive deep brain stimulation devices require numerous personalized adjustments to their settings during the implantation and computation stages in order to provide adequate relief to patients with treatment-resistant disorders. What makes these devices unique is how adaptive deep brain stimulation integrates a sensory component to initiate the stimulation. While not commonly at the level of sophistication as self-supervising or generative large language models,[vi] they currently allow for a semi-autonomous form of neuromodulation. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments.[vii] ANALYSIS I. The State of Precision Medicine in Oncology and the Epistemological Shift While a thorough overview of precision medicine for the treatment of cancer is beyond the scope of this article, its practice can be roughly summarized as identifying clinically significant characteristics a patient possesses (e.g., genetic traits) to land on a specialized treatment option that, theoretically, should benefit the patient the most.[viii] However, in such a practice of stratification patients fall into smaller and smaller populations and the quality of evidence that can be applied to anyone outside these decreases in turn.[ix] As inductive logic helps to articulate, the greater the number of patients that respond to a particular therapy the higher the probability of its efficacy. By straying from this logical framework, precision medicine opens the treatment of cancer to more uncertainty about the validity of these approaches to the resulting disease subcategories.[x] Thus, while contemporary medical practices explicitly describe some treatments as “personalized”, they ought not be viewed as inherently better founded than other therapies.[xi] A relevant contemporary case of precision medicine out of Norway focuses on the care of a patient with cancer between the ventricles of the heart and esophagus, which had failed to respond to the standard regimen of therapies over four years.[xii] In a last-ditch effort, the patient elected to pay out-of-pocket for an experimental immunotherapy (nivolumab) at a private hospital. He experienced marked improvements and a reduction in the size of the tumor. Understandably, the patient tried to pursue further rounds of nivolumab at a public hospital. However, the hospital initially declined to pay for it given the “lack of evidence from randomised clinical trials for this drug relating to this [patient’s] condition.”[xiii] In rebuttal to this claim, the patient countered that he was actually similar to a subpopulation of patients who responded in “open‐label, single arm, phase 2 studies on another immune therapy drug” (pembrolizumab).[xiv] Given this interpretation of the prior studies and the patient’s response, further rounds of nivolumab were approved. Had the patient not had improvements in the tumor’s size following a round of nivolumab, then pembrolizumab’s prior empirical evidence in isolation would have been insufficient, inductively speaking, to justify his continued use of nivolumab.[xv] The case demonstrates a shift in reasoning from the traditional induction to abduction. The phenomenon of ‘cancer improvement’ is considered causally linked to nivolumab and its underlying physiological mechanisms.[xvi] However, “the weakness of abductions is that there may always be some other better, unknown explanation for an effect. The patient may for example belong to a special subgroup that spontaneously improves, or the change may be a placebo effect. This does not mean, however, that abductive inferences cannot be strong or reasonable, in the sense that they can make a conclusion probable.”[xvii] To demonstrate the limitations of relying on the abductive standard in isolation, commentators have pointed out that side effects in precision medicine are hard to rule out as being related to the initial intervention itself unless trends from a group of patients are taken into consideration.[xviii] As artificial intelligence (AI) assists the development of precision medicine for oncology, this uncertainty ought to be taken into consideration. The implementation of AI has been crucial to the development of precision medicine by providing a way to combine large patient datasets or a single patient with a large number of unique variables with machine learning to recommend matches based on statistics and probability of success upon which practitioners can base medical recommendations.[xix] The AI is usually not establishing a causal relationship[xx] – it is predicting. So, as AI bleeds into medical devices, like brain-computer interfaces, the same cautions about using abductive reasoning alone should be carried over. II. Responsive Neurostimulation, AI, and Personalized Medicine Like precision medicine in cancer treatment, computer-brain interface technology similarly focuses on the individual patient through personalized settings. In order to properly expose the intersection of AI, precision medicine, abductive reasoning, and implantable neurotechnologies, the descriptions of adaptive deep brain stimulation systems need to deepen.[xxi] As a broad summary of adaptive deep brain stimulation, to provide a patient with the therapeutic stimulation, a neural signal, typically referred to as a local field potential,[xxii] must first be detected and then interpreted by the device. The main adaptive deep brain stimulation device with premarket approval, the NeuroPace Responsive Neurostimulation system, is used to treat epilepsy by detecting and storing “programmer-defined phenomena.”[xxiii] Providers can optimize the detection settings of the device to align with the patient’s unique electrographic seizures as well as personalize the reacting stimulation’s parameters.[xxiv] The provider adjusts the technology based on trial and error. One day machine learning algorithms will be able to regularly aid this process in myriad ways, such as by identifying the specific stimulation settings a patient may respond to ahead of time based on their electrophysiological signatures.[xxv] Either way, with AI or programmers, adaptive neurostimulation technologies are individualized and therefore operate in line with precision medicine rather than standard treatments based on large clinical trials. Contemporary neurostimulation devices are not usually sophisticated enough to be prominent in AI discussions where the topics of neural networks, deep learning, generative models, and self-attention dominate the conversation. However, implantable high-density electrocorticography arrays (a much more sensitive version than adaptive deep brain stimulation systems use) have been used in combination with neural networks to help patients with neurologic deficits from a prior stroke “speak” through a virtual avatar.[xxvi] In some experimental situations, algorithms are optimizing stimulation parameters with increasing levels of independence.[xxvii] An example of neurostimulation that is analogous to the use of nivolumab in Norway surrounds a patient in the United States who was experiencing both treatment-resistant OCD and temporal lobe epilepsy.[xxviii]Given the refractory nature of her epilepsy, implantation of an adaptive deep brain stimulation system was indicated. As a form of experimental therapy, her treatment-resistant OCD was also indicated for the off-label use of an adaptive deep brain stimulation set-up. Another deep brain stimulation lead, other than the one implanted for epilepsy, was placed in the patient’s right nucleus accumbens and ventral pallidum region given the correlation these nuclei had with OCD symptoms in prior research. Following this, the patient underwent “1) ambulatory, patient-initiated magnet-swipe storage of data during moments of obsessive thoughts; (2) lab-based, naturalistic provocation of OCD-related distress (naturalistic provocation task); and (3) lab-based, VR [virtual reality] provocation of OCD-related distress (VR provocation task).”[xxix] Such signals were used to identify when to deliver the therapeutic stimulation in order to counter the OCD symptoms. Thankfully, following the procedure and calibration the patient exhibited marked improvements in their OCD symptoms and recently shared her results publicly.[xxx] In both cases, there is a similar level of abductive justification for the efficacy of the delivered therapy. In the case study in which the patient was treated with adaptive deep brain stimulation, they at least had their neural activity tested in various settings to determine the optimum parameters for treatment to avoid them being based on guesswork. Additionally, the adaptive deep brain stimulation lead was already placed before the calibration trials were conducted, meaning that the patient had already taken on the bulk of the procedural risk before the efficacy could be determined. Such an efficacy test could have been replicated in the first patient’s cancer treatment, had it been biopsied and tested against the remaining immunotherapies in vitro. Yet, in the case of cancer with few options, one previous dose of a drug that appeared to work on the patient may justify further doses. However, as the Norwegian case presents, corroboration with known responses to a similar drug (from a clinical trial) could be helpful to validate the treatment strategy. (It should be noted that both patients were resigned to these last resort options regardless of the efficacy of treatment.) There are some elements of inductive logic seen with adaptive deep brain stimulation research in general. For example, abductively the focus could be that patient X’s stimulation parameters are different from patient Y’s and patient Z’s. In contrast, when grouped as subjects who obtained personalized stimulation, patients X, Y, and Z demonstrate an inductive aspect to this approach’s safety and/or efficacy. The OCD case holds plenty of abductive characteristics in line with precision medicine’s approach to treating cancer and as more individuals try the method, there will be additional data. With the gradual integration of AI into brain-computer interfaces in the name of efficacy, this reliance on abduction will continue, if not grow, over time. Moving forward, if a responsive deep brain stimulation treatment is novel and individualized (like the dose of nivolumab) and there is some other suggestion of efficacy (like clinical similarities to other patients in the literature), then it may justify insurance coverage for the investigative intervention, absent other unrelated reasons to deny it. III. Ethical Implications and Next Steps While AI’s use in oncology and neurology is not yet as prominent as its use in other fields (e.g., radiology), it appears to be on the horizon for both.[xxxi] AI can be found in both the functioning of the neurotechnologies as well as the implementation of precision medicine. The increasing use of AI may serve to further individualize both oncologic and neurological therapies. Given these implications and the handful of publications cited in this article, it is important to have a nuanced evaluation of how these treatments, which heavily rely on abductive justification, ought to be managed. The just use an abductive approach may be difficult as AI infused precision medicine is further pursued. At baseline, such technology relies on a level of advanced technology literacy among the general public and could exclude populations who lack access to basic technological infrastructure or know-how from participation.[xxxii] Even among nations with adequate infrastructure, as more patients seek out implantable neurotechnologies, which require robust healthcare resources, the market will favor patient populations that can afford this complex care.[xxxiii] If patients already have the means to pay for an initial dose/use of a precision medicine product out of pocket, should insurance providers be required to cover subsequent treatments?[xxxiv] That is, if a first dose of a cancer drug or a deep brain stimulator over its initial battery life is successful, patients may feel justified in having the costs of further treatments covered. The Norwegian patient’s experience implies there is a precedent for the idea that some public insurance companies ought to cover successful cancer therapies, however, insurance companies may not all see themselves as obligated to cover neurotechnologies that rely on personalized settings or that are based on precision/abductive research more than on clinical trials. CONCLUSION The fact that the cases outlined above rely on abductive style of reasoning implies that there may not be as strong a justification for coverage by insurance, as they are both experimental and individualized, when compared to the more traditional large clinical trials in which groups have the same or a standardized protocol (settings/doses). If a study is examining the efficacy of a treatment with a large cohort of patients or with different experimental groups/phases, insurance companies may conclude that the resulting symptom improvements are more likely to be coming from the devices themselves. A preference for inductive justification may take priority when ruling in favor of funding someone’s continued use of an implantable neurostimulator. There are further nuances to this discussion surrounding the classifications of these interventions as research versus clinical care that warrant future exploration, since such a distinction is more of a scale[xxxv] than binary and could have significant impacts on the “right-to-try” approach to experimental therapies in the United States.[xxxvi] Namely, given the inherent limitations of conducting large cohort trials for deep brain stimulation interventions on patients with neuropsychiatric disorders, surgically innovative frameworks that blend abductive and inductive methodologies, like with sham stimulation phases, have traditionally been used.[xxxvii] Similarly, for adaptive brain-computer interface systems, if there are no large clinical trials and instead only publications that demonstrate that something similar worked for someone else, then, in addition to the evidence that the first treatment/dose worked for the patient in question, the balance of reasoning would be valid and arguably justify insurance coverage. As precision approaches to neurotechnology become more common, frameworks for evaluating efficacy will be crucial both for insurance coverage and for clinical decision making. ACKNOWLEDGEMENT This article was originally written as an assignment for Dr. Francis Shen’s “Bioethics & AI” course at Harvard’s Center for Bioethics. I would like to thank Dr. Shen for his comments as well as my colleagues in the Lázaro-Muñoz Lab for their feedback. - [i] Jonathan Kimmelman and Ian Tannock, “The Paradox of Precision Medicine,” Nature Reviews. Clinical Oncology 15, no. 6 (June 2018): 341–42, https://doi.org/10.1038/s41571-018-0016-0. [ii] Henrik Vogt and Bjørn Hofmann, “How Precision Medicine Changes Medical Epistemology: A Formative Case from Norway,” Journal of Evaluation in Clinical Practice 28, no. 6 (December 2022): 1205–12, https://doi.org/10.1111/jep.13649. [iii] David Barrett and Ahtisham Younas, “Induction, Deduction and Abduction,” Evidence-Based Nursing 27, no. 1 (January 1, 2024): 6–7, https://doi.org/10.1136/ebnurs-2023-103873. [iv] Vogt and Hofmann, “How Precision Medicine Changes Medical Epistemology,” 1208. [v] Wireko Andrew Awuah et al., “Bridging Minds and Machines: The Recent Advances of Brain-Computer Interfaces in Neurological and Neurosurgical Applications,” World Neurosurgery, May 22, 2024, S1878-8750(24)00867-2, https://doi.org/10.1016/j.wneu.2024.05.104. [vi] Mark Riedl, “A Very Gentle Introduction to Large Language Models without the Hype,” Medium (blog), May 25, 2023, https://mark-riedl.medium.com/a-very-gentle-introduction-to-large-language-models-without-the-hype-5 f67941fa59e. [vii] David E. Burdette and Barbara E. Swartz, “Chapter 4 - Responsive Neurostimulation,” in Neurostimulation for Epilepsy, ed. Vikram R. Rao (Academic Press, 2023), 97–132, https://doi.org/10.1016/B978-0-323-91702-5.00002-5. [viii] Kimmelman and Tannock, 2018. [ix] Kimmelman and Tannock, 2018. [x] Simon Lohse, “Mapping Uncertainty in Precision Medicine: A Systematic Scoping Review,” Journal of Evaluation in Clinical Practice 29, no. 3 (April 2023): 554–64, https://doi.org/10.1111/jep.13789. [xi] Kimmelman and Tannock, “The Paradox of Precision Medicine.” [xii] Vogt and Hofmann, 1206. [xiii] Vogt and Hofmann, 1206. [xiv] Vogt and Hofmann, 1206. [xv] Vogt and Hofmann, 1207. [xvi] Vogt and Hofmann, 1207. [xvii] Vogt and Hofmann, 1207. [xviii] Vogt and Hofmann, 1210. [xix] Mehar Sahu et al., “Chapter Three - Artificial Intelligence and Machine Learning in Precision Medicine: A Paradigm Shift in Big Data Analysis,” in Progress in Molecular Biology and Translational Science, ed. David B. Teplow, vol. 190, 1 vols., Precision Medicine (Academic Press, 2022), 57–100, https://doi.org/10.1016/bs.pmbts.2022.03.002. [xx] Stefan Feuerriegel et al., “Causal Machine Learning for Predicting Treatment Outcomes,” Nature Medicine 30, no. 4 (April 2024): 958–68, https://doi.org/10.1038/s41591-024-02902-1. [xxi] Sunderland Baker et al., “Ethical Considerations in Closed Loop Deep Brain Stimulation,” Deep Brain Stimulation 3 (October 1, 2023): 8–15, https://doi.org/10.1016/j.jdbs.2023.11.001. [xxii] David Haslacher et al., “AI for Brain-Computer Interfaces,” 2024, 7, https://doi.org/10.1016/bs.dnb.2024.02.003. [xxiii] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 103–4; “Premarket Approval (PMA),” https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpma/pma.cfm?id=P100026. [xxiv] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 104. [xxv] Burdette and Swartz, 126. [xxvi] Sean L. Metzger et al., “A High-Performance Neuroprosthesis for Speech Decoding and Avatar Control,” Nature 620, no. 7976 (August 2023): 1037–46, https://doi.org/10.1038/s41586-023-06443-4. [xxvii] Hao Fang and Yuxiao Yang, “Predictive Neuromodulation of Cingulo-Frontal Neural Dynamics in Major Depressive Disorder Using a Brain-Computer Interface System: A Simulation Study,” Frontiers in Computational Neuroscience 17 (March 6, 2023), https://doi.org/10.3389/fncom.2023.1119685; Mahsa Malekmohammadi et al., “Kinematic Adaptive Deep Brain Stimulation for Resting Tremor in Parkinson’s Disease,” Movement Disorders 31, no. 3 (2016): 426–28, https://doi.org/10.1002/mds.26482. [xxviii] Young-Hoon Nho et al., “Responsive Deep Brain Stimulation Guided by Ventral Striatal Electrophysiology of Obsession Durably Ameliorates Compulsion,” Neuron 0, no. 0 (October 20, 2023), https://doi.org/10.1016/j.neuron.2023.09.034. [xxix] Nho et al. [xxx] Nho et al.; Erik Robinson, “Brain Implant at OHSU Successfully Controls Both Seizures and OCD,” OHSU News, accessed March 3, 2024, https://news.ohsu.edu/2023/10/25/brain-implant-at-ohsu-successfully-controls-both-seizures-and-ocd. [xxxi] Awuah et al., “Bridging Minds and Machines”; Haslacher et al., “AI for Brain-Computer Interfaces.” [xxxii] Awuah et al., “Bridging Minds and Machines.” [xxxiii] Sara Green, Barbara Prainsack, and Maya Sabatello, “The Roots of (in)Equity in Precision Medicine: Gaps in the Discourse,” Personalized Medicine 21, no. 1 (January 2024): 5–9, https://doi.org/10.2217/pme-2023-0097. [xxxiv] Green, Prainsack, and Sabatello, 7. [xxxv] Robyn Bluhm and Kirstin Borgerson, “An Epistemic Argument for Research-Practice Integration in Medicine,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 43, no. 4 (July 9, 2018): 469–84, https://doi.org/10.1093/jmp/jhy009. [xxxvi] Vijay Mahant, “‘Right-to-Try’ Experimental Drugs: An Overview,” Journal of Translational Medicine 18 (June 23, 2020): 253, https://doi.org/10.1186/s12967-020-02427-4. [xxxvii] Michael S. Okun et al., “Deep Brain Stimulation in the Internal Capsule and Nucleus Accumbens Region: Responses Observed during Active and Sham Programming,” Journal of Neurology, Neurosurgery & Psychiatry 78, no. 3 (March 1, 2007): 310–14, https://doi.org/10.1136/jnnp.2006.095315. (shrink)

Aim: To assess ethical issues in everyday clinical practice among physicians and nurses of the University Hospital Rijeka, Rijeka, Croatia.Subjects and methods: We surveyed the entire population of internal medicine, oncology and intensive care specialists and associated nurses employed at the University Hospital Rijeka, Rijeka, Croatia . An anonymous questionnaire was used to explore the type and frequency of ethical dilemmas, rank of their difficulty, access to and use of ethics support services, training in ethics and confidence (...) about knowledge in ethics. Physicians ranged in age from 27 to 61 years, and nurses , from 20 to 52.Results: The most frequent ethical dilemmas concerned uncertain or impaired decision-making capacity , limitation of treatment at the end of life and disagreements among family members . The most difficult dilemmas concerned euthanasia and physician-assisted suicide and limitation of treatment at the end of life . Only a minority reported ever using any kind of ethics support services or being very confident about knowledge in ethics .Conclusions: Similar ethical difficulties are present in the clinical practice of both physicians and nurses, with important differences in access and use of ethics support services. A need for systematic ethics educational activities was identified. Inclusion of individual ethics consultants in Croatian healthcare ethics support services is strongly advised. (shrink)

In nursing ethics the role of narratives and dialogue has become more prominent in recent years. The purpose of this article is to illuminate a relational-narrative approach to ethics in the context of palliative nursing. The case study presented concerns a difficult relationship between oncology nurses and a husband whose wife was hospitalized with cancer. The husband’s narrative is an expression of depression, social isolation and the loss of hope. He found no meaning in the process of dying and (...) death. The oncology nurses were not able to recognize his emotional and existential problems. A narrative perspective inspired by relational ethics indicates that participants may develop a relational narrative that seeks good for all involved in a situation. In palliative nursing this entails open communication about the fragility of life and approaching death. In relational narratives, answers to these ethical dilemmas are co-authored, contingent and contextual. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Can They Do This?” Dealing with Moral Distress after Third–Party Termination of the Doctor–Patient RelationshipSusan McCammonNot so long ago, a storm badly damaged the tertiary care hospital in which I practice surgical oncology. In the aftermath of the storm, the institution determined it was no longer able to provide unreimbursed cancer care, and many of my patients were terminated by a form letter from the hospital. (...) The helplessness and outrage that I experienced when I was first handed one of these letters, crumpled from the damp fist of one of my patients, was immense, and frightening in its unfamiliarity: “Can they do this?” I asked repeatedly, ascending a hierarchy of authority, which was increasingly reticent and then elusive. In short, the answer was “yes.”While this decision was made by the administration, its enactment was delegated to the physicians. Thus, not only were the physicians not involved in the decision to terminate their patients, they shouldered the burden of telling their patients that they would no longer be treated. The reason given—storm devastation—was contradicted by the orderly flow of insured patients in and out of unaffected clinics and hospitals.In those months, when the operating rooms were closed, I took to the road and learned about hospice and palliative care medicine on the ground. I drove from city to smaller city to the devastated countryside, locating my patients and providing all the care that I could with only my hands and mind and heart. I struggled with the limitations of the health care system and worked to rebuild a sustainable infrastructure at my own institution, all while trying to come to terms with bioethicist Haavi Morreim’s (1995) caution that “... it is not the physician who owes the resources at all. He cannot owe what others own and control, because moral obligations can only be assigned to those capable of fulfilling them” (p. 87).In considering my experience of moral distress over this period of time, I have reflected on the different connotations of the word, “practice.” I grappled with the philosophical terms “practice,” “praxis,” and “phronesis,” and I questioned their relevance to the word, as used in my professional life. However, in struggling to understand my moral obligations after the storm, when I was learning to do what I could, even when I couldn’t do what I felt like I should, I reconsidered. The elements of immersion, repetition, particularity, and utility that pervade this language of philosophers and artists turned out to be what preserved my ability [End Page 109] to practice medicine in a space holding only patient and practitioner.Many of the patients that I take care of are very poor. Many more are working but uninsured. This is a result of both their risk factors and the demographics and resources in my geographic catchment area. Their access to care was disrupted after a natural disaster and concerted efforts to reestablish it have not succeeded. Since then, I have learned how to tell people that they will die of cancer because they don’t have enough money. This is not a skill I was taught in medical school. I can talk about death, imminent or not, feared or anticipated. I can talk about unresectable tumors, treatments that have more risk than benefit (or no benefit at all), suffering beyond what has yet been experienced or imagined, helplessness, futility and grief. I could be neither surgeon nor oncologist without some facility with these. But I was unprepared for this move from medical to economic “can’t,” the nexus where an institutional “won’t” becomes a personal “can’t.”I should say here that I was not blind to the expense and technological hype of the American medico–industrial complex or our systematic marginalization of public health or the ever–present cries for health care reform. I understood that I was a steward and that I served both the individual and the society and had at my disposal what I was told were limited resources. These values, however, were only just being incorporated into the training of medical professionals; certainly they played no role in my own education. Morreim’s (1995) conclusion... (shrink)

BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled (...) "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.ResultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants.DiscussionChoice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:To Engage or Not to Engage:An Interpreter and a Mother's Need for Connection in the Cardiothoracic UnitRosa C. MorenoFive minutes into my shift, I arrived at my assigned area for the day, the cardiothoracic intensive care unit. Soon after, I received a phone call from the charge nurse that my interpreting services were being requested—words that set the tone for what would be a busy day. I took my (...) notepad, clipped my pen onto my lanyard, and off I went. As I turned the corner of the long hospital corridor, I saw a group of providers standing outside a room, and I knew it was going to be one of those "tough" conversations. I was escorted inside the hospital room. As is customary, I scanned the room and noticed the patient was a female in her teens and her mama of a humble demeanor.Interpreters serve as vital conduits in bridging the linguistic and cultural gaps between individuals who speak different languages. Interpreters convey spoken messages faithfully and impartially, striving to maintain the integrity and tone of the original communication.I interpreted for the cardiologist and for Mama, whose look of worry was evident. Her daughter had gone into cardiac arrest during the night on the oncology unit and was unconscious, initially admitted for recently diagnosed leukemia. Between every piece of information, Mama invoked her faith and, with it, the hope of her daughter pulling through. The patient would get an MRI to find a plausible explanation. We all left the room except Mama. I waited outside in case other providers needed me. Mama walked out to the hallway and asked me to please not leave her side the rest of the day. "Of course," I replied.To patients: Understand that interpreters are bound by professional ethics, including confidentiality and impartiality. Avoid engaging in side-conversations with interpreters, as their primary focus should be on facilitating communication between you and healthcare providers.Mama and I waited outside the MRI room. Wait time was filled with the telling of stories and [End Page E7] anecdotes of Mama and her two daughters. They arrived in the US three years prior, leaving their home and family to escape inevitable violence. They journeyed on foot and ride-hopped through the country of Mexico and then endured the detention center experience. A woman they encountered was kind enough to rent the family of three a room in her home. Mama shared with me anecdotes about the rebellious nature of the patient as a 15-year-old determined to figure out her identity and the quiet and observant nature of the younger sister. I listened to Mama's own story of hope and despair. Sprinkled between every story, Mama invoked her faith and, with it, the hope of her daughter pulling through. I listened, nodded, validated, encouraged, and smiled when Mama smiled.To healthcare providers: Recognize and respect cultural differences that may impact communication and healthcare decision-making. Be open to learning about your patient's cultural background and preferences and adapt your approach accordingly.My shift was ending. I told Mama I would see her tomorrow morning and let her know her daughter was in my prayers.To healthcare providers: While their primary role is to bridge the communication gap between healthcare providers and patients who speak different languages, interpreters also understand the emotional weight that accompanies medical situations.The following morning, I went straight to the patient's room. From afar, I saw Mama outside in the hallway. As I got closer, she spread her arms and hugged me whilst letting me know her daughter had passed away during the night. No tears were showing—only sad and somber eyes. I gave her my most sincere condolences. We stood in the middle of the hospital corridor as she recounted the events of the night. Mama asked me if I could accompany her inside the room, which I did. She asked if I could hold her daughter's hand, and so I held it. She then asked me if I could tell her daughter what a beautiful and wonderful young lady she was. I struggled with this last request, for... (shrink)

Background: In recent years, the interest in ethical climate has increased in the literature. However, there is limited understanding of the phenomenon within the cancer care context as well as between countries. Aim: To evaluate cancer nurses’ perceptions of hospital ethical climate in Greece and Cyprus. Research design: This was a quantitative descriptive–correlational comparative study with cancer nurses. Data were collected with the Greek version of the Hospital Ethical Climate Survey questionnaire in addition to demographic data. Participants and (...) research context: In total, n = 235 cancer nurses working in cancer care settings in Greece and Cyprus were recruited at two national oncology nursing conferences. Ethical considerations: The study conforms to the principles of the World Medical Association Declaration of Helsinki and the relevant ethical approvals were obtained according to national law. Results: The results showed that in terms of the “Managers” dimension, participants working in Greek hospitals (4.30 ± 0.73) had a higher score compared to the Cyprus participants (3.66 ± 0.93) (t = −5.777, p ≤ 0.001). The perceptions of nurses working in oncology units in Greece regarding the ethical climate were more positive compared to Cyprus (M = 3.67 for Greece and M = 3.53 for Cyprus, p ≤ 0.001). Nurses with a higher level of education had a lower average ethical climate score across all dimensions. All dimensions exhibit positive and moderate to high correlations between them (r = 0.414–0.728, p < 0.01). Conclusion: It is imperative to evaluate and improve the hospital ethical climate that prevails in each cancer care department. This highlights the fact that nurses working in seemingly similar cultural and organizational contexts might still have different perceptions of the ethical climate. Despite these differences, it is necessary to create the right conditions to address ethical issues. A positive ethical climate requires good relationships between healthcare professionals and the presence of good teamwork in order to ensure better healthcare provision. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Cracked ArmorJoanne AlfredDisclaimers. Names have been changed to protect the privacy of the patient and the patient's family.After three weeks of night shifts, I had built a routine of driving home in darkness and watching the sunrise. It had become my way to push back against a quiet melancholy, the accumulation of loss over time, by remembering that light gently returning each morning. Heading into my last stretch of (...) ten nights in a row, I was intent to hold to this practice, to anchor myself for the challenge. The one-and-a-half years of residency training had prepared me for these moments, opportunities to grow and persist. The first six days of the stretch passed as I had expected, and the confidence and autonomy I had cultivated carried me through. It always had. I had shouldered our neurosurgery service, solitary night shifts at community hospitals, the NICU. I had pronounced a newborn dead on Good Friday, heartbroken by the juxtaposition of life and death. My experiences allowed tears and doubts, but I had always rebounded, chin up and looking onward for the next thing.I had just received sign out, and needed to check on Nate, a young man I'd known since he was first diagnosed with T-cell acute lymphoblastic leukemia (T-Cell ALL). I remembered our first meeting, a new diagnosis with a white cell count in the thousands requiring PICU admission for plasma exchange, all the way to reassuring him his EKG was normal after an incidental finding of hyperkalemia. He had returned to the hospital with abdominal swelling, and dread filled me as I rounded the corner to his room. Looking down at him and back up at his mother, my own distress reflected in their eyes. We needed help. I quickly found the oncology fellow and attending, and we put our heads together, deciding a blood gas and X-ray would be the next best steps. The results confirmed our suspicions.Nate was transferred to the PICU shortly. I watched his mother console him, remembering how much they both disliked the PICU. It was not a [End Page 85] place of pleasant memories, especially as Nate had been working toward remission therapy rather than returning to the intensive care unit, where he fought through his initial diagnosis. While reassuring him and his mother externally, internally my own dread welled further, because my first night in the PICU loomed two days away. To bolster myself for my seventh night shift, I rounded with the PICU team to learn as much as I could. Nate was on BIPAP now, and the decision inexorably moved to intubation. It was all happening rapidly, and the dread started feeling more like panic. Nate's eyes were squeezed shut, his stomach taut, and his breathing shallow. I truly worried for Nate now. I had hoped the PICU would be a temporary stay, a place where we could make a diagnosis and fill the gap. However, when I joined the private conversation the PICU attending had with Nate's mother and she said, "He may never come off the ventilator. He may never speak again," the finality in her voice had more certainty.The "never" struck my brittle residency armor and it cracked. I was not ready to believe it. I could sense his mother felt the same, so we walked along the silent halls of the hospital while she remembered Nate with me as a teenage boy beyond the hospital, not as his ascites and acidosis. Maybe to make his turn for the worse untrue. But I knew something awful was going to happen.On my eighth night, I entered the PICU with trepidation. All I could think about was Nate. He was now on dialysis, struggling with true hyperkalemia. Turning the corner to the unit, my heart racing, begging please don't let him die. It was hard to sense in the moment, but the cumulative melancholy, the sense that it could be held back, was not holding true. So, I defaulted to my splintering armor of persistence, picking apart his labs, discussing his dialysis with the nephrology fellow. I put my head down... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Ethics in a Time of De-CommunizationRobert Baker (bio)Ethics is often treated as a matter of ethereal principles abstracted from the particulars of time and place. A natural correlate of this approach is the attempt to measure actual codes of ethics in terms of basic principles. Such an exercise can be illuminating, but it can also obscure the circumstances that make a particular codification of morality a meaningful response (...) to specific historic circumstances. This is particularly true of the codes of medical ethics beginning to emerge from the post-Communist societies of Eastern Europe, which are, perhaps, best understood as artifacts of an era, rather than as expressions of abstract principles.The era in question is post-Communist. It is an era informed by a reaction to decades of Communism, which, of course, was more than an economic system or even an ideology; it was a form of life that permeated every aspect of civil society—advertising, art, literature, music. Medicine was not exempt. I recall entering an oncology ward in East Berlin and finding the patients seated around a large table making posters. Wondering whether this was a form of art therapy, I asked the head nurse what the patients were doing. She replied: it is "Party time—the portion of each week every citizen donates to the people and the Party." I looked again at the posters and saw that they honored Karl Marx on the 100th anniversary of his death: "1883-1983, The Struggle Goes On." The Party, the struggle, the people, were everywhere, and they penetrated and informed daily life even for terminal patients on a cancer ward.The interweaving of Communist practices into the warp and woof of daily life has profound implications for the post-Communist era. It means that East Europeans cannot simply rebuild; they must unweave Communist thought patterns—what might be called the ideostructure of Communism—from the fabric of their lives through a deliberate process of deCommunization. What remains after de-Communization depends upon [End Page 363] the historical relationship each country had with Communism. In Russia, removing Communist ideostructure sets the conceptual calendar back to 1918. For the Czechs, the calendar advances to the 1930s, leaving them with thought patterns that are Western, industrial, and democratic. In the rest of Eastern Europe the conceptual clock also tends to turn back to the 1930s, but at that time the conceptual frameworks were nationalist, anti-Western, and frequently fascist, or even Nazi.In Poland the situation is different. World War II opened with the Nazi invasion of the country—which Hitler (later joined by Stalin) subsequently occupied. After the war, the Soviet army controlled the country, which became a captive player in the Soviet sphere of influence (aptly denominated, "the Warsaw Pact"). Poland's pre-Communist thought patterns are nationalist, West-leaning, accepting of parliamentary structures, but also of authoritarian government. They are also Catholic.Catholicism to Poles is not merely a religion, it is a posture of opposition to their German (Nazi, antichristian) and Russian (Orthodox or atheist) occupiers. I toured Polish hospitals several times during the Communist period —always accompanied by one or more "tour guides." (Westerners were not allowed to roam Communist countries unescorted.) Almost all of my guides wore little pins adorned with the face of Lenin (not the hammer and sickle—a symbol of Soviet occupation). Most doctors and nurses, however, adorned themselves with Catholic icons—typically a crucifix. Their conspicuously displayed crosses symbolized less their embrace of Catholicism than their rejection of Communism. Catholicism, in the Polish context, was thus an affirmation of individual and national independence.De-Communizing Polish Medical Ethics: The Abortion ControversyIn Poland, de-Communization was initiated through a series of negotiations between Lech Walensa's Solidarity and the Communist Government. The Polish Code of Medical Ethics is an indirect consequence of these negotiations, which stipulated the dissolution of Communist medical organizations. They were to be replaced by a Polish Medical Chamber—a type of quasi-governmental body, common in Eastern Europe, which combines the functions of a governmental licensing agency with those of a national medical association. Medical chambers also set standards of professional conduct and (unlike... (shrink)

Ethnomethodology research has systematically investigated discursive practices of categorisation, looking at the various ways by which social actors ascribe both themselves and others to identity categories to accomplish various kinds of social actions. Drawing on a data corpus of oncological visits collected in an Italian hospital, involving both native and non-native patients, the present work analyses how participants in these intercultural medical encounters invoke and make relevant social identity categories by the marking of collective pronouns in their talk. Our (...) results showed that whilst institutional identities prevailed, categorial formulations related to cultural or linguistic identities were rarely displayed in interactions with non-native patients. Conversational participants made very little of their linguistical or cultural background and when they did so, their cultural and linguistic identities were deployed for rhetorical and pragmatical aims, such as testing and negotiating common knowledge and epistemic authority. This study shows how even speakers’ minimal lexical choices, such as marked pronouns, impact the negotiation of meanings and activities in life-saving sites such as oncological visits. (shrink)

This cross-sectional survey aimed to investigate nurses’ opinions and practices regarding information and consent in the context of a large Italian teaching hospital and to explore potential influences of gender, age, university education, length of professional experience, and care setting. A questionnaire was administered to 282 nurses from six different care settings (Emergency Room, Emergency Medicine, Surgery, Hematology–Oncology, Geriatrics, and Internal Medicine). Overall, 84% (n = 237) of nurses returned the questionnaire (men: 24%; mean age: 36.2 ± 8 (...) years; university degree: 35%; mean length of professional experience: 12 ± 8.2 years). Most respondents regularly informed patients about medications and nursing procedures and asked for consent prior to invasive procedures, but some provided information to relatives instead of patients. Lack of time or opportunity was the main difficulty in informing patients. The work setting was the foremost factor significantly associated with participants’ opinions and practices. Further investigations are needed to confirm these findings in similar and other care settings. (shrink)

BackgroundAt the start of 2021, oncologists lacked the necessary scientific knowledge to adapt their clinical practices optimally when faced with cancer patients refusing or reluctant to be vaccinated against COVID-19, despite the marked vulnerability of these patients to severe, and even fatal forms of this new viral infectious disease. Oncologists at Foch Hospital were confronted with this phenomenon, which was observed worldwide, in both the general population and the population of cancer patients.MethodsBetween April and November 2021, the Ethics and (...) Oncology Departments of Foch Hospital decided to investigate this subject, through an empirical and interdisciplinary study in bioethics. Our scientific objective was to try to identify and resolve the principal bio-ethical issues, with a view to improving clinical practices in oncology during future major pandemics of this kind, from a highly specific bio-ethical standpoint. We used a mainly qualitative methodological approach based on questionnaires and interviews.ResultsIn April 2021, 29 cancer patients refused or were reluctant to be vaccinated. Seventeen of these patients said that making vaccination mandatory would have helped them to accept vaccination. In October 2021, only 10 cancer patients continued to maintain their refusal. One of the main reasons for the decrease in refusals was probably the introduction of the “pass sanitaire” in July 2021, which rendered vaccination indispensable for many activities. However, even this was not sufficient to convince these 10 cancer patients.ConclusionWe identified a key bio-ethical issue, which we then tried to resolve: vaccination policy. We characterized a major tension between “the recommendation of anti-COVID-19 vaccination” and “free will”, and the duty to “protect each other”. Mandatory vaccination, at least in France, could resolve this tension, with positive effects on quality of life, or survival, in cancer patients initially refusing or reluctant to be vaccinated, but only if collective and individual scales are clearly distinguished. (shrink)

OBJECTIVE: Pilot study to characterize treatment differences between patients treated in clinical trials and those treated in a clinical setting. Previous studies have shown higher survival rates for participants in trials of cancer therapy. This difference is observed even after rates are adjusted for important covariates such as age and stage of disease. DESIGN: Retrospective chart review. SETTING: Oncology outpatient department in a tertiary care hospital. PATIENTS: Ninety women 18 to 70 years of age with early-stage breast cancer (...) who were diagnosed in 1990. Fifty-one of the women were treated through clinical trials and 39 were treated outside of clinical trials. OUTCOME MEASURES: Number of blood tests, telephone calls, clinic visits and imaging procedures as well as intensity of chemotherapy and use of radiation therapy. The age of the patient and the stage of disease were important covariates. RESULTS: After the analysis was controlled for patient age and stage of disease, patients treated through a clinical trial were more likely to receive standard-dose chemotherapy (p = 0.020, 95% confidence interval 1.20 to 200.73) and more frequent blood tests (p < 0.001, 95% confidence interval 1.02 to 1.13) than other patients treated in the clinic. CONCLUSIONS: Our results provide a plausible mechanism for the observed survival advantage for participants in clinical trials in oncology. Further study is called for. If these results are confirmed, they have important implications for informed consent to participate in clinical trials and for clinical practice. (shrink)

Objectives: The aim of this study is to evaluate the views of cancer patients on patient rights in the context of the right to information and autonomy according to articles related to the issue in the “Patient Rights Regulation”. Methods: The research was conducted among cancer patients in the medical oncology department of a research and practice hospital using a random sampling method between June and September 2005. Data were collected during face-to-face interviews using a questionnaire. Results: There (...) was a high rate of positive response to the items that the patients have the right to be informed (86.5%), that the physician should inform the patient on the diagnosis and the treatment (92.3%) and that the physician is obliged to inform the patient (76.9%). Only 43.3% of the patients stated that the patient has the right to refuse the treatment recommended by the physician. The participants mostly agreed that the patient should participate in decisions about the treatment and that patient consent should be given (78.8%). Conclusions: There are extensive efforts in Turkey towards making patient rights a significant supportive component of health services. For patient rights to become a natural part of medical practice it is necessary to give priority to education of both patients and physicians about patient rights and to lay emphasis on an ethical approach in the patient–physician relationship. (shrink)

Background The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. Methods A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients (...) with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. Results Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a “person of trust” would be more appropriate than utilizing AD. Conclusion Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Life in LimboM. ChiuWhen my son was 7 years old, he began complaining of headaches. They were frequent, but never seemed severe. “I have a headache!” was always followed by “Can I watch TV?” I didn’t believe the pain was real until it woke him up in the middle of the night. I knew then that something must be wrong. I approached our pediatrician, who said it sounded like (...) migraines, but we should order an MRI to rule anything out. The appointment was scheduled several months in advance, and I always had the urge to cancel it. I was pretty sure my son just wanted to watch TV. The pediatrician told me I might as well do the MRI. He told me that if we skipped it and something was wrong, I would never be able to live with the regret. We kept the Monday morning appointment, and went to the MRI expecting reassurance that nothing was wrong. Instead, we got a phone call later that day. They needed to see us on immediately, but wouldn’t tell me why. Of course, I knew something was wrong. “Is it a tumor?” I asked. “This isn’t something we can discuss on the phone” was the answer I got. An appointment was scheduled for Wednesday. Two days might be “immediately” to medical professionals, but to a parent who just heard that her child had an abnormal MRI, it was an eternity. I planned my son’s funeral in those two days.Our meeting with the Neurologist began with reviewing the MRI. “See this spot here? It shouldn’t be there”. A tumor. 1 ½ × 1 ½ × 2 ½ cm tumor, in the right thalamus. Small, they said. Looks like a Low Grade Glioma they said. The kind of tumor you want to have, if you have to have a brain tumor. A biopsy was scheduled for two weeks later. The [End Page E2] biopsy confirmed it was a Juvenile Pilocytic Astrocytoma (JPA). The neurosurgeon was confident she could remove all of the tumor. We were at one of the best Children’s Hospitals in the world. We were in good hands.A few days before the surgery, a friend who is a medical doctor suggested we get a second opinion. “It couldn’t hurt, it could help”, my husband said. Fortunately, he just sold a start–up company, and was planning to take a few months off from work before starting his next venture. He had time to research, talk to friends in the medical field and make phone calls.Our second opinion from another leading hospital reviewed the MRI’s with us. The neurosurgeon asked, “Did they say tumor? One?” Yes, they did. “See this here?” he said, pointing to a second spot on the MRI. He said it was possibly a second tumor, or more likely, an extension of the first. It was in inoperable location. Surgery wasn’t an option. Chemo would be our best choice. Why would we cut into our son’s brain to remove part of the tumor when he would need to do chemo anyway? Why not try chemo first?I would like to say that we do not fault our original neuro–oncology team for missing this second abnormality. It is hard to notice an ant in the room when there is an elephant staring at you. People make mistakes, and tumors don’t always look the same. That’s what second opinions are for. That is why doctors should encourage patients to get second opinions.We scheduled the surgery for port implantation, and got busy educating ourselves about chemo regimes. It was going to be a long journey. 18 months of transfusions with a pretty low success rate and a high rate of secondary complications. Unsure if we were doing the right thing, we got a third opinion. I am so grateful that my husband was between jobs and had time to devote to finding the best possible treatment for our son. We were financially stable and had great insurance. What do people do when they don’t have this luxury?By now, several months had passed since our first MRI. Our... (shrink)