Search

Background: As frontline caregivers, nurses often find themselves at the crossroads of complex ethical decisions that can significantly impact patient outcomes and their own well-being. Identifying the areas of experienced moral dilemmas in the workplace and gaining insight into the prevalence of moral distress can lead to a healthier workplace environment. Objective: This study aims to examine the frequency, intensity and level of moral distress among nurses who work in a hospital, and to identify the variables associated with the level of moral distress. Design: Cross-sectional study. Setting: One university hospital and six general hospitals. Participants: 654 of the 1095 nurses working on inpatient units filled out the questionnaire (response rate 60 %). Methods: The intensity and frequency of moral distress was assessed using the Moral Distress Scale-Revised (MDS-R). We also asked two additional questions about considering leaving their job, and if they could describe a distressing case and how moral distress was discussed. Multivariable regression analysis was conducted to identify the variables associated with the level of moral distress. Results: The overall mean MDS-R score of the 654 included nurses was low at 36.4 (SD 26). Nurses reported to have frequent dilemmas regarding organizational aspects and aspects of end-of-life care. The multivariable analyses showed that higher levels of moral distress were experienced by registered nurses, nurses working on a medical ward, and nurses who had ever left or considered leaving their job, or considering leaving their job at the moment. Conclusions: Although nurses in our study experiences low levels of moral distress, they do experience moral dilemmas related to organizational topics and end of life care. We all need to pay attention to these dilemmas and how to discuss them in order to achieve a resilient nursing profession at a time of major nursing sho

Introduction:In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician’s help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying. Methods and analysis:This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents’ experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software.Ethics and dissemination: The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. R

BACKGROUND: Placebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more complex. Therefore, proxy assessments by relatives can be a good alternative. AIM: To explore the experience of participating in a placebo-controlled trial at the end of life from the perspective of bereaved relatives. DESIGN: Mixed-method study, including questionnaires and interviews. SETTING/PARTICIPANTS: The SILENCE study was a randomized, double-blind, placebo-controlled trial on the efficacy of scopolamine butylbromide to prevent death rattle. The study was performed in six inpatient hospice facilities. Patients were asked to participate at admission in the hospice. Three months after the death of the patient, bereaved relatives were invited to fill in a questionnaire and to participate in an interview. One hundred four questionnaires were completed and 17 relatives were interviewed. RESULTS: Fourteen percent of the relatives participating in the questionnaire study considered the participation of their loved one in research a bit burdensome and 10% considered it a bit stressful. Seventeen percent thought that it was a bit burdensome for the patient. Eighty-three percent considered participation in this type of research (very) valuable. The in-depth interviews showed that patients and relatives jointly decided about participation in this double-blind placebo-controlled medication trial. Relatives generally respected and felt proud about patients' decision to participate. CONCLUSION: The large majority of bereaved relatives experienced the participation of their dying love one in this RCT as acceptable and valuable.

Objective: This prospective study aimed to evaluate the performance of the ‘Surprise Question’ (SQ) ‘Would I be surprised if this patient died in the next 12 months?’ in predicting survival of 12, 6, 3 and 1 month(s), respectively, in hospitalised patients with cancer. Methods: In three hospitals, physicians were asked to answer SQs for 12/6/3/1 month(s) for inpatients with cancer. Sensitivity, specificity, positive and negative predictive values were calculated. Results: A total of 783 patients were included, of whom 51% died in the 12-month period after inclusion. Sensitivity of the SQ predicting death within 12 months was 0.79, specificity was 0.66, the positive predictive value was 0.71 and the negative predictive value was 0.75. When the SQ concerned a shorter survival period, sensitivities and positive predictive values decreased, whereas specificities and negative predictive values increased. In multivariable logistic regression analysis, the SQ was significantly associated with mortality (OR 3.93, 95% CI 2.70–5.71, p < 0.01). Conclusions: The 12-month SQ predicts death in patients with cancer admitted to the hospital reasonably well. Shortening the timeframe decreases sensitivities and increases specificities. The four surprise questions may help to identify patients for whom palliative care is indicated.

Background: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. Aim: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives’ satisfaction with treatment and care. Design: Mixed-methods study, including a survey and focus group study. Setting/participants: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. Results: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients’ and relatives’ lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). Conclusions: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.