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.

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

BACKGROUND: Respiratory 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. METHODS: A 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. RESULTS: Six 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. CONCLUSION: Therapies, 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.

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.

The complexity of nurses' attitudes and practice of sedation at the end of life: a systematic literature review.

CONTEXT: Sedation is administered to some palliative care patients at the end of their life. Nurses play an important role in this practice. OBJECTIVES: To systematically review the evidence on nurses' attitudes and practice of end-of-life sedation. METHODS: We searched eight electronic databases, four key palliative care journals, and reference lists for empirical studies published in English, between 1990 and 2012, on nurses and their attitudes toward and practice of sedation until a patient's death. A total of 10 studies met the inclusion criteria. RESULTS: Data were generated from 7515 nurses in four main settings (specialized palliative care unit, home, nursing home, and acute hospital) from seven countries (Belgium, Canada, Japan, The Netherlands, Norway, U.K., and U.S.). On average, the quality of the evidence was good; hence, we analyzed all selected studies. Based on the findings from a previous review, we categorized the emerging themes into: 1) important factors leading to the patient receiving palliative sedation (PS), 2) nurses' attitudes toward PS, and 3) nurses' experience of PS at the end of a patient's life. In general, nurses had a positive but cautious attitude toward the practice of PS. Most saw it as a last resort treatment for relieving suffering and refractory symptoms, and its practice was often influenced by their level of education, expertise, and the roles they played per setting. CONCLUSION: Most nurses administered sedation until death only within the given circumstances because of the anticipatory benefits in controlling refractory symptoms and suffering. Some of them experienced burdens during PS delivery; these could be supported by operational guidelines and task-related training.

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.

Recognising patients who will die in the near future: a nationwide study via the Dutch Sentinel Network of GPs.

BACKGROUND: Recognising patients who will die in the near future is important for adequate planning and provision of end-of-life care. GPs can play a key role in this. AIM: To explore the following questions: How long before death do GPs recognise patients likely to die in the near future? Which patient, illness, and care-related characteristics are related to such recognition? How does recognising death in the near future, before the last week of life, relate to care in during this period? DESIGN AND SETTING: One-year follow-back study via a surveillance GP network in the Netherlands. METHOD: Registration of demographic and care-related characteristics. RESULTS: Of 252 non-sudden deaths, 70% occurred in the home or care home and 30% in hospital. GP recognition of death in the near future was absent in 30%, and occurred prior to the last month in 15%, within the last month in 19%, and in the last week in 34%. Logistic regression analyses showed cancer and low functional status were positively associated with death in the near future; cancer and discussing palliative care options were positively associated with recognising death in the near future before the last week of life. Recognising death in the near future before patients' last week of life was associated with fewer hospital deaths, more GP-patient contacts in the last week, more deaths in a preferred place, and more-frequent GP-patient discussions about specific topics in the last 7 days of life. CONCLUSION: Recognising death in the near future precedes several aspects of end-of-life care. The proportion in whom death in the near future is never recognised is large, suggesting GPs could be assisted in this process through training and implementation of care protocols that promote timely recognition of the dying phase.

Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners.

CONTEXT: Advance care planning (ACP) is an important part of patient-centered palliative care. There have been few nationwide studies of ACP, especially in Europe. OBJECTIVES: To investigate the prevalence and characteristics of ACP in two European countries and identify the associated factors. METHODS: A mortality follow-back study was undertaken in 2007 via representative nationwide Sentinel Networks of general practitioners (GPs) in Belgium and The Netherlands using similar standardized procedures. All GPs reported on each non-suddenly deceased patient in their practice. Our main outcome measure was whether or not ACP, that is, an agreement for medical treatment and/or medical decisions in the last phase of life in the case of the patient losing competence, was present. RESULTS: Among 1072 non-sudden deaths, ACP was done with 34% of patients and most often related to the forgoing of potential life-prolonging treatments in general (24%). In 8% of cases, ACP was made in consultation with the patient and in writing. In 23% of cases, care was planned with the patient's family only. Multivariate analysis revealed that ACP was more often made with patients if they were capable of decision making during the last three days of life (odds ratio [OR] 3.86; 95% confidence interval [CI] 2.4-6.1), received treatment aimed at palliation in the last week (OR 2.57; 95% CI 1.6-4.2), had contact with a GP in the last week (OR 2.71; 95% CI 1.7-4.1), died of cancer (OR 1.46; 95% CI 1.1-2.0), or died at home (OR 2.16; 95% CI 1.5-3.0). CONCLUSION: In these countries, ACP is done with approximately one-third of the studied terminally ill patient population. Most agreements are made only verbally, and care also is often planned with family only. ACP relates strongly both to patient factors and to health care measures performed at the very end of life.

Discussing end-of-life issues in the last months of life: a nationwide study among general practitioners.

BACKGROUND: Communication is a necessary tool for ensuring the provision of quality patient-centered care for patients who have life-threatening illnesses, and discussing all relevant end-of-life issues should not be limited to cancer patients. OBJECTIVE: To examine the incidence and timing of general practitioners (GPs) discussing end-of-life issues with patients whose deaths were expected, and to identify the factors associated with them discussing these issues. METHODS: Between January and December 2008, GPs participating in a nationally representative sentinel surveillance network of GPs were asked to register, using standardised forms, the extent of discussing 10 end-of-life issues with patients. RESULTS: We examined 252 patients who died nonsuddenly, 38% of whom died of cancer, and 86% of whose treatment goal was palliative care. Our findings show that GPs often waited until very close to death before they discussed end-of-life issues with patients, and discussed spiritual and social issues less than physical symptoms, diagnoses, and psychological problems. In 74% of cases, the GPs were informed of their patients' preferred place of death; and 8 out of 10 patients with known preferences for place of death, died there. Being diagnosed with cancer was associated with a higher frequency of discussing all 10 end-of-life issues than diagnosis with other (noncancer) conditions, but this is a state of mind we did not explore in this study. CONCLUSION: Promotion of timely discussion of all relevant end-of-life issues, in patients with cancer and noncancer diagnoses, is advisable based on systematic needs assessment.

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.

The oldest old and GP end-of-life care in the Dutch community: a nationwide study.

BACKGROUND: Provision of adequate care for the oldest old is increasingly crucial, given the current ageing trends. This study explores differences in end-of-life care of the oldest (≥85 years) versus the younger (65-84 years) old; testing the hypothesis that age could be an independent correlate of receiving specialised palliative care services (SPCS), having palliative-centred treatment and dying in a preferred place. METHODS: general practitioners (GPs) participating in the nation-wide representative network in the Netherlands were asked to fill in patient, illness and care characteristics of all registered patients ≥65 years, who died non-suddenly in their practices between 2005 and 2008, using standardised forms. Associations with the palliative care variables were tested using multiple logistic regression. RESULTS: nine hundred and ninety patients were registered. Among the oldest old, there were more women than men, more patients with heart failure than cancer, less hospital and home deaths and more residential care home deaths compared with the younger old. Of the oldest old, fewer received SPCS and more preferred to die in a residential care home than the younger old. Age was independently associated with palliative care provided: compared with the younger group, the oldest old received SPCS less often (OR = 0.7) and were treated with a palliative-centred goal more often (OR = 2.4); but age was not related to dying in a preferred place, i.e. independent of other characteristics. CONCLUSION: this study shows age to be independently associated with receiving SPCS in the Dutch community. Although the GPs do recognise the 'palliative phase' in the oldest old, involvement of specialist teams is somewhat less.

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 < or = 85 years, having an infection and the absence of a palliative-centred treatment goal were associated with terminal hospitalization for > or = 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.

General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands.

To improve the quality of end-of-life care, general practitioner (GP) awareness of where their patients prefer to die is important. To examine GP awareness of patients' preferred place of death (POD), associated patient- and care-related characteristics, and the congruence between preferred and actual POD in The Netherlands, a mortality follow-back study was conducted between January 2005 and December 2006. Standardized registration forms were used to collect data on all nonsudden deaths (n=637) by means of the Dutch Sentinel Network, a nationally representative network of general practices. Forty-six percent of patients had GPs who were not aware of their preferred POD. Of those whose GPs were aware, 88% had preferred to die in a private or care home, 10% in a hospice or palliative care unit, and 2% in a hospital. GPs were informed by the patients themselves in 84% of cases. Having financial status "above average," a life-prolongation or palliative care goal, and using specialist palliative care services were associated with higher GP-awareness odds. Four-fifth of patients with known preferred POD died there. There is a potential for improving GP awareness of patients' preferred POD. Such awareness is enhanced when palliation is an active part of end-of-life care. The hospital is the POD least preferred by dying patients.

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.