We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic identity was described as important reasons (...) behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of se... (shrink)

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey administered (...) to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation (...) of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position. (shrink)

There is growing interest in clinical ethics. However, we still have sparse knowledge about what is actually going on in the everyday practice of clinical ethics consultations. This paper introduces a descriptive evaluation tool to present, discuss and compare how clinical ethics case consultations are actually carried out. The tool does not aim to define ‘best practice’. Rather, it facilitates concrete comparisons and evaluative discussions of the role, function, procedures and ideals inherent in clinical ethics case consultation practices. The tool (...) was developed during meetings of the European Clinical Ethics Network. Based on written reports and participation in the network meetings, the development and the content of the tool and the results of its application in presenting and discussing 10 case consultations are summarized. The tool facilitated understanding of the details of clinical ethics case consultations across individuals and institutions with various experiences and cultures, and comparison between various practices. (shrink)

Background Non-adherence to medication is associated with increased risk of relapse in patients with bipolar disorder. Objectives To validate patient-evaluated adherence to medication measured via smartphones against validated adherence questionnaire; and investigate characteristics for adherence to medication measured via smartphones. Methods Patients with BD evaluated adherence to medication daily for 6–9 months via smartphones. The Medication Adherence Rating Scale and the Rogers’ Empowerment questionnaires were filled out. The 17-item Hamilton Depression Rating Scale, the Young Mania Rating Scale and the Functional (...) Assessment Short Test were clinically rated. Data were collected multiple times per patient. The present study represents exploratory pooled reanalyses of data collected as part of two randomised controlled trials. Findings During the study 90.50% of the days were evaluated as ‘medication taken’, 6.91% as ‘medication taken with changes’ and 2.59% as ‘medication not taken’. Adherence to medication measured via smartphones was valid compared with the MARS. Younger age and longer illness duration were significant predictors for non-adherence to medication. Decreased affective symptoms measured with smartphone-based patient-reported mood and clinical ratings as well as decreased empowerment were associated with non-adherence. Conclusions Smartphone-based monitoring of adherence to medication was valid compared with validated adherence questionnaire. Younger age and longer illness duration were predictors for non-adherence. Increased empowerment was associated with adherence. Clinical implications Using smartphones for empowerment of adherence using patient-reported measures may be helpful in everyday clinical settings. Trial registration number NCT01446406 and NCT02221336. (shrink)

This paper discusses the character of medical ethics and suggests that there are significant gaps that warrant greater attention. It describes ways in which the content and form of medical ethics may exclude or marginalise perspectives and contributions, thereby reducing its influence and its potential impact on, and value to, patients, students, carers and society. To consider what it is ‘to do good medical ethics’ suggests an active approach that seeks out, and learns from, contributions beyond the traditional boundaries of (...) scholarship. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article (...) explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (shrink)

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve patients in making their own healthcare decisions. Second, just ethical deliberation (...) requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. (shrink)

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article (...) aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions. (shrink)

Although clinical ethics consultation has existed for more than 40 years in the USA and Europe, it was not available in Bulgaria until recently. In introducing clinical ethics consultation into our country, the Modular, Ethical, Treatment, Allocation of resources, Process methodology has been preferred because of its potential to be used in resource-poor settings and its strong educational function. This paper presents the results of a METAP evaluation in a hospital palliative care ward in the town of Vratsa. The evaluation (...) was based on Beauchamp and Childress’ four principles of biomedical ethics and involves implementation of specific instruments for clinical ethics decision-making. Research tasks emphasised analyses of ethics meetings in the ward. Data were processed by SPSS v.24 using descriptive statistical analysis. Altogether, 32 ethics meetings of an average duration 20.63 min were conducted on cases involving critically ill patients. Most of the participants expressed satisfaction with the ethics process. The principlist approach supported resolution of conflicts between autonomous patients and their relatives, clarified definitions of “medical benefit” and “social good,” and enabled assessments of the risk of unequal treatment. Even as the specific research tasks were achieved, further participant follow-up is necessary to identify any improvement in healthcare personnel’s ethical competence. METAP worked well in end-of-life care settings. Participants experienced several benefits, including improved team communication, better understanding of patient preferences, and confidence in the correctness of decisions. Despite the significant educational potential of METAP, the need for additional and ongoing ethics training of health professionals should not be underestimated. (shrink)