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Background: Healthcare professionals in palliative care are found to be confronted with moral challenges on a frequent basis. CURA is a low-threshold instrument for dialogical ethical reflection that was developed to deal with these challenges. A previous study identified the need of healthcare professionals to be trained to introduce CURA in their organization, initiate and facilitate reflections with CURA, and contribute to the implementation of CURA. The aim of this study was to develop and evaluate a training for professionals to become 'CURA-ambassadors'., Methods: The training was developed in a participatory way in two cycles. We trained 72 healthcare professionals. The training was evaluated by means of a questionnaire and six semi-structured interviews., Results: The study resulted in a blended learning training combining training sessions with an e-module and with practicing with organizing and facilitating CURA in daily healthcare practice. The main objectives of the training are to enable CURA-ambassadors to introduce CURA within their organization, initiate and facilitate ethical reflections using CURA, and contribute to the implementation of CURA. Participants were generally positive about the training program and the trainers. Technical difficulties related to the e-module were mentioned as main point of improvement., Discussion: The training program can generate ownership, responsibility, and competency among CURA-ambassadors, which are essential foundations for implementing complex interventions in healthcare practice. The training program received positive evaluations shortly after completing the program. This study adds to our understanding of what is needed for healthcare professionals to use CURA, in order to support them in dealing with moral challenges and to foster their moral resilience. Further research is needed to assess whether participants experience the training as sufficient and effective when using and implementing CURA structurally in their organizations over a longer period of time., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78-87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience., (© 2021. The Author(s).)

This article presents an ethics support instrument for healthcare professionals called CURA. It is designed with a focus on and together with nurses and nurse assistants in palliative care. First, we shortly go into the background and the development study of the instrument. Next, we describe the four steps CURA prescribes for ethical reflection: (1) Concentrate, (2) Unrush, (3) Reflect, and (4) Act. In order to demonstrate how CURA can structure a moral reflection among caregivers, we discuss how a case was discussed with CURA at a psychogeriatric ward of an elderly care home. Furthermore, we go into some considerations regarding the use of the instrument in clinical practice. Finally, we focus on the need for further research on the effectiveness and implementation of CURA.

Background: Existing clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care., Method: We used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA., Results: We distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection., Conclusions: Participatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments., (© 2022. The Author(s).)

WHAT IS KNOWN ON THE SUBJECT?: Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. WHAT ARE THE IMPLICATIONS FOR RESEARCH AND PRACTICE?: Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored., Abstract: Introduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses' experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored., (© 2016 John Wiley & Sons Ltd.)

Background: The need for research methods that are suited to evaluate important issues and phenomena in palliative care has established different qualitative research approaches during the last years. This article describes the use and adaptation of a qualitative research methodology in a palliative care setting., Research Process: The wish for hastened death of terminally ill patients is an important end-of-life issue. Proponents of palliative care have argued that good palliative care would prevent the wish for hastened death. However, this wish is stated by a few patients receiving palliative care, raising a challenging dilemma for patients, relatives and caregivers involved. In order to investigate the motivations of the patients asking for hastened death, we conducted a qualitative study using Grounded theory (GT). This article aims to illustrate the use of a flexible, less burdening qualitative research method and the adaptation of the research process of GT in a palliative care research setting. This is based on experiences and illustrated by examples from the qualitative study on the wish for hastened death in patients receiving palliative care., Conclusions: GT allowed a systematic understanding of patients' experiences and attitudes and careful in-depth exploration of this vulnerable population. Conducting a GT study needs high staff resources, a great catchment area for participant recruitment and realistic inclusion and exclusion criteria to allow for theoretical sampling. The use of GT should be facilitated by an experienced researcher familiar with this method because of high methodological requirements and rather complex analysis procedures.

Quality-of-life (QoL) assessment is crucial for the evaluation of a palliative care outcome. This article investigates the applicability of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) on a German sample of terminally ill cancer patients receiving palliative care in different settings. Patients were randomly selected in 10 palliative homecare services and one palliative care unit in a general hospital and 'evaluated' among the consecutively 'registered' patients. The random sample of patients (n-121) was representative of the general patient population cared for by the palliative care services in Germany. The EORTC QLQ-C30 was administered to the terminally ill cancer patients on their first day in hospital or upon their first contact with the specialized palliative homecare team. The clinical variable assessed was the Karnofsky performance status. The questionnaire was well accepted in the present patient population. In addition, the questionnaire was found to be useful in detecting the effectiveness of palliative treatment over a period of time. This study shows that QoL measures can be used to assess the outcome in palliative care.

We present three cases to illustrate the end-of-life care after withdrawal of mechanical ventilation. In a one-year-old girl with meningococcal septic shock, muscle relaxants were continued when mechanical ventilation was withdrawn. In a 10-day-old girl with perinatal asphyxia a high dose of fentanyl was given before mechanical ventilation was withdrawn. A 6-week-old girl in a vegetative state was fighting for breath after detubation. At the request of the parents to end this condition, vecuronium bromide was given. In these three cases death was probably brought forward by a maximum of 12-24 hours. Three arguments can be presented to justify this: the relief of suffering, the perceptions of the parents and the fact that death was expected within a very short time. The administration of these medicines cannot, however, be considered normal medical practice. Therefore we argue that these cases should be reviewed by the national expert review committee and guidelines should be developed for appropriate palliative care after the withdrawal ofmechanical ventilation.

Aims and Objectives: [corrected] This review of the literature intended to get insight into the international standards of quality of life assessment in palliative care, the conceptual and research literature addressing illness related quality of life and an examination of how nurse researchers define and assess this concept in the context of terminally ill cancer patients. Clearly stated goals for measuring quality of life as well as an understanding of the pragmatic and theoretical explanations for current trends in quality of life measurement are fundamental to this focus., Background: Most clinicians and researchers agree that the primary goal of palliative care is to optimize the quality of life of patients with advanced incurable diseases through control of physical symptoms and attention to the patient's psychological, social and spiritual needs. Palliative care therefore is the achievement of the best quality of life for patients and their families. Consequently, the outcomes of care should be measured in terms of the extent to which this goal is achieved. Quality of life is difficult to define and measure; it is a multidimensional, dynamic and subjective concept. During the past decade, multidisciplinary research measuring the impact of cancer and its treatment on the quality of people's lives escalated rapidly in international literature but not in the German speaking European countries. This international escalation was accompanied by a proliferation of measurement strategies and tools. Nursing shared this interest and began to generate substantive research of the phenomenon. In the oncology and palliative care nursing societies quality of life and numerous closely related areas of symptom management rank among the highest research priorities., Method: This paper examines nursing literature published between 1990 and 2004, retrieved through a computer review of MEDLINE and Cumulative Index of Nursing and Allied Health Literature. The review includes reports that systematically describe or measure the quality of life of people with a terminal cancer in palliative care as a variable of interest. This article also describes conceptual and operational definitions of quality of life and explores the implicit and explicit goals of research., Results: Quality of life is a concept relevant to the discipline of nursing. Nurses, especially oncology and palliative care nurses, actively contributed to the development of the quality of life concept through instrument development and population description., Conclusion: Nurses working in German palliative care settings do change the quality of life of patients they care for, but there are no systematic standards of assessing these outcomes., Relevance to Clinical Practice: There are challenges related to measuring quality of life in patient-focused palliative care and research. Systematic quality of life assessment in all palliative care settings will establish quality assurance and the further development of this very young discipline in Germany.

Responsive evaluation is an emerging vision and rationale for nursing evaluation. In this vision, evaluation is redefined as an engagement with all stakeholders about the value and meaning of their practice as a vehicle for learning, understanding, and improvement. In this article, the authors aim to illustrate the utility of a particular version of responsive evaluation, one that is connected with recent ideas about narrative and dialogue. They concentrate on methodological issues and use a case example to illustrate these issues. The case concerns a responsive evaluation of the quality of palliative care for cancer patients in a Dutch region. Methodological issues include the collection of stories through the use of conversational interviews. Stories can reveal the meaning and ambiguity of everyday situations. If evaluators listen to different stories and facilitate a dialogue about stories, this will enhance mutual understandings and promote respect, inclusiveness, and social equity.

In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic approaches to desires analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has.

Since 1999 reported cases of euthanasia in The Netherlands are examined in five regional review committees. In these committees a lawyer, an ethicist and a medical doctor investigate whether the cases reported are in correspondence with the so-called criteria for careful practice. Issues to be investigated include the patient's suffering, the nature of the patient's request, the consultation by another doctor and the way in which the termination of life has been performed. Since April 2002 the judgment of the committees is final. This paper describes the working of the review committees. It also discusses the relevance of experiences in the committee for issues of social and public debate, such as the role of the consulting doctor, the relation between euthanasia and palliative care, and the place of patient autonomy. [ABSTRACT FROM AUTHOR]