Perspectives of patients, close relatives, nurses, and physicians on end-of-life medication management.

ABSTRACTObjective:Our aim was to gain insight into the perspectives of patients, close relatives, nurses, and physicians on medication management for patients with a life expectancy of less than 3 months. METHOD: We conducted an empirical multicenter study with a qualitative approach, including in-depth interviews with patients, relatives, nurses, specialists, and general practitioners (GPs). We used the constant comparative method and ATLAS.ti (v. 7.1) software for our analysis. RESULTS: Saturation occurred after 18 patient cases (76 interviews). Some 5 themes covering 18 categories were identified: (1) priorities in end-of-life care, such as symptom management and maintaining hope; (2) appropriate medication use, with attention to unnecessary medication and deprescription barriers; (3) roles in decision making, including physicians in the lead, relatives' advocacy, and pharmacists as suppliers; (4) organization and communication (e.g., transparency of tasks and end-of-life conversations); and (5) prerequisites about professional competence, accessibility and quality of medical records, and financial awareness. Patients, relatives, nurses, specialists, and GPs varied in their opinions about these themes. SIGNIFICANCE OF RESULTS: This study adds to our in-depth understanding of the complex practice of end-of-life medication management. It provides knowledge about the diversity of the perspectives of patients, close relatives, nurses, and physicians regarding beliefs, attitudes, knowledge, skills, behavior, work setting, the health system, and cultural factors related to the matter. Our results might help to draw an interdisciplinary end-of-life medication management guide aimed at stimulating a multidisciplinary and patient-centered pharmacotherapeutic care approach.

Rationing in the intensive care unit in case of full bed occupancy: a survey among intensive care unit physicians.

BACKGROUND: Internationally, there is no consensus on how to best deal with admission requests in cases of full ICU bed occupancy. Knowledge about the degree of dissension and insight into the reasons for this dissension is lacking. Information about the opinion of ICU physicians can be used to improve decision-making regarding allocation of ICU resources. The aim of this study was to: Assess which factors play a role in the decision-making process regarding the admission of ICU patients; Assess the adherence to a Dutch guideline pertaining to rationing of ICU resources; Investigate factors influencing the adherence to this guideline. METHODS: In March 2013, an online questionnaire was sent to all ICU physician members (n = 761, in 90 hospitals) of the Dutch Society for Intensive Care. RESULTS: 166 physicians (21.8 %) working in 64 different Dutch hospitals (71.1 %) completed the questionnaire. Factors associated with a patient's physical condition and quality of life were generally considered most important in admission decisions. Scenario-based adherence to the Dutch guideline "Admission request in case of full ICU bed occupancy" was found to be low (adherence rate 50.0 %). There were two main reasons for this poor compliance: unfamiliarity with the guideline and disagreement with the fundamental approach underlying the guideline. CONCLUSIONS: Dutch ICU physicians disagree about how to deal with admission requests in cases of full ICU bed occupancy. The results of this study contribute to the discussion about the fundamental principles regarding admission of ICU patients in case of full bed occupancy.

Ethical problems in intensive care unit admission and discharge decisions: a qualitative study among physicians and nurses in the Netherlands.

BACKGROUND: There have been few empirical studies into what non-medical factors influence physicians and nurses when deciding about admission and discharge of ICU patients. Information about the attitudes of healthcare professionals about this process can be used to improve decision-making about resource allocation in intensive care. To provide insight into ethical problems that influence the ICU admission and discharge process, we aimed to identify and explore ethical dilemmas healthcare professionals are faced with. METHODS: This was an explorative, descriptive study using qualitative methods (individual and focus group interviews). We conducted 19 individual interviews and 4 focus group interviews with nurses and physicians working in the ICU or the general ward of 10 Dutch hospitals. RESULTS: The ethical problems in the context of ICU admission and discharge can be divided into problems concerning full bed occupancy and problems related to treatment decisions. The gap between the high level of care the ICU can provide and the lower care level in the general ward sometimes leads to mutual misunderstandings. Our results indicate that when professionals of different wards feel there is a collective responsibility and effort to solve a problem, this helps to prevent or alleviate moral distress. ICU patients' wishes are often unknown, causing healthcare professionals to err on the side of more treatment. Additionally, the highly technological nature of intensive care appears to encourage over-treatment. CONCLUSIONS: It is important for ICUs and general wards to communicate and cooperate well, since there is a mutual dependency for optimal patient flow between the different departments. Interventions that improve the understanding and cooperation between these wards may help mitigate ethical problems. The nature of the ICU environment makes it important for healthcare professionals to be aware of the risk of over-treatment, reflect on why they do what they do, and be mindful of a possible negative impact of over-treatment on their patients. Early discussion of a patient's wishes with regard to treatment options is important in preventing over-treatment.

Regenerative urology clinical trials: an ethical assessment of road blocks and solutions.

Tissue engineering--part of regenerative medicine--is a promising technology that could potentially offer elegant solutions to urogenital defects, but so far, it has fallen short of its potential. Within experimental studies for bladder and urethra reconstructions, two clinical applications have been described, but extension of these techniques to the broader urological patient population has not happened so far. In this article, we aim to identify the ethical road blocks in the clinical evaluation of tissue-engineered products under the European Medicines Agency and Food and Drug Administration regulations for pediatric urological conditions and, ultimately, to recommend strategies to overcome them. The use of human tissue-engineered products (HTEPs) to treat children with congenital urogenital defects poses challenges in the clinical testing phase, connected to three features of the application of this treatment in this patient group: (1) those associated with the product, namely, the multifaceted complexity of the HTEP; (2) those connected to the procedure, namely, the lack of a randomized controlled trial (RCT)-tested gold standard to compare the new treatment to and difficulties surrounding standardization of the treatment protocol; and (3) the patient's young age and associated problems concerning possible long-term effects and the informed consent process. Due to these problems, a conventional RCT is not the methodology of choice to evaluate this treatment in this patient group. The unpredictability of HTEPs necessitates stringent and long-term surveillance and registry to ensure the safety of patients treated with these products.

Ethical issues regarding the donation and source of cells for tissue engineering: a European focus group study.

This article is part of the EuroSTEC project, which aims at developing tissue engineering-based treatments for structural disorders present at birth. EuroSTEC is positioned at the intersection of three areas with their own ethical issues: (1) regenerative medicine, (2) research with pregnant women and fetuses, and (3) research with neonates. Because of the link between these three areas in this project, one can expect to be confronted with new ethical challenges. To be able to respond adequately and timely to current and possible future ethical issues, a prospective and anticipatory ethical analysis is essential. To obtain a first impression of the ethical issues that might arise during the different phases of the project, a Delphi method was used. On the basis of the results of two previous rounds of questionnaires, two topics were selected for discussion in focus groups: ethical issues associated with (1) source of cells and (2) donation. The results could be divided into three clusters: Tissue, Donor, and Scientist. Where the former two clusters roughly coincide with the results of the previous rounds, the third subject was entirely new but discussed by both groups: the role of the scientist in the tissue engineering process.

Ethical aspects of soft tissue engineering for congenital birth defects in children--what do experts in the field say?

This article is part of the EuroSTEC project, which aims at developing tissue engineering-based treatments for structural disorders present at birth. EuroSTEC is positioned at the intersection of three areas with their own ethical issues: (1) regenerative medicine, (2) research with pregnant women and fetuses, and (3) research with neonates. Because of the overlap of these three areas in this project, we can expect to be confronted with new ethical challenges. To be able to respond adequately and timely to current and possible future ethical issues, a prospective and anticipatory ethical analysis is essential. To obtain a first survey of ethical issues that might arise during the different phases of the project, the Delphi method was used. The professionals directly involved in the EuroSTEC project were questioned about their views on possible ethical issues. The first round yielded 27 ethical issues, which the respondents were asked to prioritize in the second round. For the fundamental research phase, issues deemed most important were privacy and informed consent of the tissue donor. For the animal experimentation phase, three issues were mentioned (in order of decreasing priority): the suffering of animals, the use of animals as means to an end, and the limited adequacy of the animal models. Issues that were deemed most important during the clinical (trial) phase pertained to the problem of weighing risks and benefits for the fetus/child and the pregnant woman.