Ebun Abarshi

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: A systematic review

While effective general practitioner (GP)–patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP–patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP–patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs’ lack of availability, and patients’ and GPs’ ambivalence to discuss ‘bad prognosis’. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators.

Transitions between care settings at the end of life in the Netherlands: results from a nationwide study.

Multiple transitions between care settings in the last phase of life could jeopardize continuity of care and overall end-of-life patient care. Using a mortality follow-back study, we examined the nature and prevalence of transitions between Dutch care settings in the last 3 months of life, and identified potential characteristics associated with them. During the 2-year study period, 690 registered patients died ‘totally expectedly and non-suddenly’. These made 709 transitions in the last 3 months, which involved a hospital two times out of three, and covered 43 distinct care trajectories. The most frequent trajectory was home-to-hospital (48%). Forty-six percent experienced one or more transitions in their last month of life. Male gender, multi-morbidities, and absence of GP awareness of a patient’s wish for place of death were associated with having a transition in the last 30 days of life; age of ≤85 years, having an infection and the absence of a palliative-centred treatment goal were associated with terminal hospitalization for ≥7 days. Although the majority of the ‘totally expected and non-sudden’ deaths occurred at home, transitions to hospitals were relatively frequent. To minimize abrupt or frequent transitions just before death, timely recognition of the palliative phase of dying is important.

End-of-Life Care and Circumstances of Death in Patients Dying As a Result of Cancer in Belgium and the Netherlands: A Retrospective Comparative Study

PURPOSE To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. PATIENTS AND METHODS A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. RESULTS Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). CONCLUSION Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.

Use of palliative care services and general practitioner visits at the end of life in the Netherlands and Belgium.

CONTEXT At the end of life, some personalized and specialized care is required. The way that general practitioner (GP) visits and palliative care services at the end of life are organized in different countries may impact the frequency of care provision. However, nationwide data on the prevalence of these interventions and comparisons among countries are scarce. OBJECTIVES To compare the frequency of GP visits and use of palliative care services at the end of life in two European countries and identify the associated factors. METHODS In 2007, two mortality follow-back studies were conducted simultaneously in The Netherlands and Belgium, using existing Sentinel GP networks and similar standardized procedures. Within the one-year period, all registered patients who died at home or in a care home were selected. RESULTS From the data of 543 registered patients, GP visits were more frequent at the end of life in The Netherlands than in Belgium: the mean number of GP visits in the last week of life was 5.1 vs. 3.2 (home) and 4.4 vs. 2.3 (care home). Conversely, palliative care services in the last three months of life were used more frequently in Belgium than in The Netherlands: 78% vs. 41% (home) and 39% vs. 5% (care homes). The differences between countries remained consistent despite correcting for possible confounders. Having more frequent GP visits at home was associated with cancer-related deaths both in The Netherlands and Belgium. CONCLUSION Independent of the differences in patient populations (at home and care home) between countries, there are more frequent GP visits at the end of life in The Netherlands and greater use of palliative care services in Belgium.

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

BackgroundSedation 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 designA 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.DiscussionWe 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.

International variations in clinical practice guidelines for palliative sedation : a systematic review

Objectives Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument. Methods Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016. Results Of 264 hits, 13 guidelines—Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended ‘pre-emptive discussion of the potential role of sedation in end-of-life care’; 9 recommended ‘nutrition/hydration while performing sedation’ and 8 acknowledged the need to ‘care for the medical team’. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations. Conclusions Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains ‘scope and purpose’ and ‘editorial independence’ ranked highest and lowest, respectively—underscoring the importance of good reportage at the developmental stage.

Euthanasia requests and cancer types in the Netherlands:is there a relationship?

PURPOSE Cancer patients have generally requested for euthanasia and assisted suicide (EAS) more frequently than others. However, different terminal cancers are accompanied by different clinical courses. This study seeks to explore the relationship, if any, between EAS requesters and cancer types, as relates to the provision of end-of-life care in the Netherlands. METHODS Standardized questionnaires were retrospectively sent to all general practitioners (GPs) in 10 of 23 GP-districts in the Netherlands. Of the 3614 respondents (60%), 1442 could describe a most recent EAS request from a cancer patient. RESULTS Compared to all home cancer deaths, lung, pancreas, stomach oesophagus, lip-mouth-throat cancers and melanomas occur more frequently in the group of cancer patients who requested for EAS; while prostate, haemo-lymphatic, urinary tract, bladder and uterus cancer occur relatively less frequently. Vomiting, shortness of breath and anxiousness were symptoms positively associated, and old age was negatively associated with cancers in which patients relatively frequently request for EAS. CONCLUSION There are differences in the extent to which patients with different cancer types request for EAS. Although shortness of breath, vomiting and anxiousness are associated with cancer types in which patients relatively frequently request for EAS, most symptoms are not associated with this. Possibly a common pathway, including more existential concerns, is important in the last stages of life.

Benefits of interventions for respiratory secretion management in adult palliative care patients—a systematic review

BackgroundRespiratory secretions impact negatively on palliative patients. Unfortunately, a gold standard therapy is not yet available. The purpose of this study was to identify which interventions are in use to control respiratory secretions in patients with chronic disease with a poor prognosis and verify their effects on outcomes relevant for palliative care patients.MethodsA systematic review of the literature with narrative summary was conducted. We searched eight electronic databases in April 6th, 2016. Citation-tracking and reference list searches were conducted. We included randomized controlled trials, crossover trials, observational and qualitative studies regarding interventions for respiratory secretion management in adult patients with chronic diseases that met inclusion criteria indicating short prognosis.ResultsSix randomized controlled trials, 11 observational studies, ten crossover trials and one qualitative study were found. Interventions included mechanical insufflation-exsufflation (MIE), expiratory muscle training, manually-assisted cough, tracheotomy, chest physiotherapy, suctioning, air stacking, electrical stimulation of abdominal muscles, nebulized saline, positive expiratory pressure masks, percussive ventilation, high frequency chest wall oscillations. The interventions with most promising benefits to patients in palliative care were manually-assisted cough and mechanical insufflation-exsufflation to promote expectoration and percussive ventilation to improve mucous clearance.ConclusionTherapies, such as manually assisted cough, mechanical insufflation-exsufflation and percussive ventilation, which aim to deal with respiratory secretion, were the most promising treatment for use in palliative care for specific diseases. Nevertheless, the evidence still needs to improve in order to identify which treatment is the best.