The effectiveness of a nurse-led intervention to support family caregivers in end-of-life care

__Aim:__ To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home. __Background:__ Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home. __Design:__ We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. __Methods:__ The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. __Impact:__ Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care. Trial registration: The Netherlands Trial Register (NL7702)

No negative impact of Palliative sedation on relatives' experience of the dying phase and their wellbeing after the patient's death: An observational study

Background: Palliative sedation is the widely-used intervention of administering sedating agents to induce a state of unconsciousness to take away a dying patient's perception of otherwise irrelievable symptoms. However, it remains questionable whether this ethically complex intervention is beneficial for patients and whether the associated lack of communication in the last phase of life has a negative impact on relatives' wellbeing. Methods: An observational questionnaire study was conducted among relatives of a consecutive sample of patients who died a non-sudden death in the Erasmus MC Cancer Institute or in the hospice 'Laurens Cadenza' (both in Rotterdam) between 2010 and 2013. Results: Relatives filled in questionnaires regarding 151 patients who had been sedated and 90 patients who had not been sedated. The median time since all patients had passed away was 21 (IQR 14-32) months. No significant differences were found in relatives' assessments of the quality of end-of-life care, patients' quality of life in the last week before death and their quality of dying, between patients who did and did not receive sedation, or in relatives' satisfaction with their own life, their general health and their mental wellbeing after the patient's death. Conclusions: The use of sedation in these patients appears to have no negative effect on bereaved relatives' evaluation of the patient's dying phase, or on their own wellbeing after the patient's death

Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: Study protocol

Background: Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. Methods and design. A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. Discussion. We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences

Unnatural death: A major but largely preventable cause-of-death among homeless people?

Background: We aimed to assess the contribution of specific causes-of-death to excess mortality of homeless persons and to identify differences in cause-specific mortality rates after vs. before implementing social policy measures. Methods: We conducted a register based 10-year follow-up study of homeless adults in Rotterdam and calculated the proportion of deaths by cause-of-death in this cohort in the period 2001-2010. We estimated causespecific mortality among the homeless compared to the general population with Standardized Mortality Ratios. We calculated Hazard Ratios adjusted for age and sex to compare mortality rates by cause-of-death among the homeless in the period after (2006-2010) vs. before (2001-2005) implementing social policy measures. Results: Our cohort consisted of 2130 homeless persons with a mean age of 40, 3 years. Unnatural death, cardiovascular disease and cancer were the main causes of death. Compared to the general population of Rotterdam, the homeless had an excess risk of death for all causes. The largest mortality differences with Rotterdam citizens were observed for unnatural death (SMR 14.8, CI 11.5-18.7), infectious diseases (SMR 10.0, CI 5.2-17.5) and psychiatric disorders (SMR 7.7, CI 4.0-13.5). Mortality due to intentional injuries (suicide and homicide) differed significantly between the two study periods (HR 0.45, CI 0.20-0.97). Conclusions: Reducing unnatural death should be a target in social policies aimed at improving the health of the homeless. We generated the hypothesis that social policies aimed at housing, work and improved contact with health care could be accompanied by less suicides and homicides within this vulnerable group

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child’s future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents n

Development and validation of search filters to find articles on palliative care in bibliographic databases

Background: Healthcare professionals and researchers in the field of palliative care often have difficulties finding relevant articles in online databases. Standardized search filters may help improve the efficiency and quality of such searches, but prior developed filters showed only moderate performance. Aim: To develop and validate a specific search filter and a sensitive search filter for the field of palliative care. Design: We used a novel, objective method for search filter development. First, we created a gold standard set. This set was split into three groups: term identification, filter development, and filter validation set. After creating the filters in PubMed, we translated the filters into search filters for Ovid MEDLINE, Embase, CINAHL, PsychINFO, and Cochrane Library. We calculated specificity, sensitivity and precision of both filters. Results: The specific filter had a specificity of 97.4%, a sensitivity of 93.7%, and a precision of 45%. The sensitive filter had a sensitivity of 99.6%, a specificity of 92.5%, and a precision of 5%. Conclusion: Our search filters can support literature searches in the field of palliative care. Our specific filter retrieves 93.7% of relevant articles, while 45% of the retrieved articles are relevant. This filter can be used to find answers to questions when time is limited. Our sensitive filter finds 99.6% of all relevant articles and may, for instance, help conducting systematic reviews. Both filters perform better than prior developed search filters in the field of palliative care

Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands

BACKGROUND: Terminal sedation in patients nearing death is an important issue related to end-of-life care. OBJECTIVE: To describe the practice of terminal sedation in the Netherlands. DESIGN: Face-to-face interviews. SETTING: The Netherlands. PARTICIPANTS: Nationwide stratified sample of 482 physicians; 410 responded and 211 of these reported characteristics of their most recent terminal sedation case. MEASUREMENTS: Physician reports of frequency of terminal sedation (defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration), characteristics of the decision-making process, drugs used, the estimated life-shortening effect, and frequency of euthanasia discussions. RESULTS: Of respondents, 52% (95% CI, 48% to 57%) had ever used terminal sedation. Of the 211 most recent cases, physicians used terminal sedation to alleviate severe pain in 51% of patients (CI, 44% to 58%), agitation in 38% (CI, 32% to 45%), and dyspnea in 38% (CI, 32% to 45%). Physicians reported discussing with patients th

Ethnic differences in frailty: A cross-sectional study of pooled data from community-dwelling older persons in the Netherlands

Objective Few European studies examined frailty among older persons from diverse ethnic backgrounds. We aimed to examine the association of ethnic background with frailty. In addition, we explored the association of ethnic background with distinct components that are considered to be relevant for frailty. Design and setting This was a cross-sectional study of pooled data of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS) in the Netherlands. Participants Community-dwelling persons aged 55 years and older with a Dutch, Indonesian, Surinamese, Moroccan or Turkish ethnic background were included (n=23 371). Measurements Frailty was assessed with the validated TOPICS-Frailty Index that consisted of 45 items. The TOPICS-Frailty Index contained six components: morbidities, limitations in activities of daily living (ADL), limitations in instrumental ADL, health-related quality of life, psychosocial health and self-rated health. To examine the associations of ethnic background with frailty and with distinct frailty components, we estimated multilevel random-intercept models adjusted for confounders. Results TOPICS-Frailty Index scores varied from 0.19 (SD=0.12) among persons with a Dutch background to 0.29 (SD=0.15) in persons with a Turkish background. After adjus