Search

Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic impacted cancer diagnosis and treatment. However, little is known about end-of-life cancer care during the pandemic. Aim: To investigate potentially inappropriate end-of-life hospital care for cancer patients before and during the COVID-19 pandemic. Design: Retrospective population-based cohort study using data from the Netherlands Cancer Registry and the Dutch National Hospital Care Registration. Potentially inappropriate care in the last month of life (chemotherapy administration, >1 emergency room contact, >1 hospitalization, hospitalization >14 days, intensive care unit admission or hospital death) was compared between four COVID-19 periods and corresponding periods in 2018/2019. Participants: A total of 112,919 cancer patients (⩾18 years) who died between January 2018 and May 2021 were included. Results: Fewer patients received potentially inappropriate end-of-life care during the COVID-19 pandemic compared to previous years, especially during the first COVID-19 peak (22.4% vs 26.0%). Regression analysis showed lower odds of potentially inappropriate end-of-life care during all COVID-19 periods (between OR 0.81; 95% CI 0.74–0.88 and OR 0.92; 95% CI 0.87–0.97) after adjustment for age, sex and cancer type. For the individual indicators, fewer patients experienced multiple or long hospitalizations, intensive care unit admission or hospital death during the pandemic. Conclusions: Cancer patients received less potentially inappropriate end-of-life care during the COVID-19 pandemic. Because several factors may have contributed, it is unclear whether this reflects better quality care. However, these findings raise important questions about what pandemic-induced changes in care practices can help provide appropriate end-of-life care for future patients in the context of increasing patient numbers and limited resources. [ABSTRACT FROM AUTHOR]

Most people with an incurable disease prefer to stay and die at home, cared for by their general practitioner (GP). This paper aims at describing the prevalence of symptoms in patients receiving palliative care at home. Within the framework of a nation wide survey of general practice in the Netherlands, GPs received a questionnaire for all patients who died within the 1-year survey period to determine whether patients received palliative care (n=2194). The response rate was 73% (n=1608), and 38% of these patients received palliative care until death. Information regarding encounters during the last 3 months of life was derived from the records kept by the GPs. Digestive symptoms (59%) and pain (56%) were the most prevalent. The total number of symptoms per patient was higher in cancer patients (11.99) than in non-cancer patients (7.62). Not reported in previous studies were musculoskeletal symptoms (20%) and chronic ulcer (18%). Concluding, this showed that Dutch GPs encounter a diversity and wide range of symptoms in palliative care. To face these complex challenges in patients receiving palliative care at home, GPs have to be trained as well as supported by specialized palliative care consultants. [ABSTRACT FROM AUTHOR]

Palliative care in the Netherlands is growing and the climate for further development is favourable. Although there is a great deal of consensus on the current debates within palliative care, important disagreements persist. These disagreements relate to the history of palliative care within the country, the scope of palliative care, its values, the appropriate institutional context, and the moral acceptability of euthanasia in palliative care. In this paper, the consensus and the disagreements are described and discussed. It is concluded that many disagreements emerge from so-called external goals of palliative care. It is recommended that the debate should refocus on the internal goal of palliative care, which is the quality of life of the patient and his or her loved ones. [ABSTRACT FROM AUTHOR]

Background: COPD causes high morbidity and mortality, emphasizing the need for palliative care. Aim: To assess the effectiveness of palliative care in patients with COPD. Design: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. Setting: Eight hospital regions in the Netherlands. Participants: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. Results: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: −5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03–0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46–1.03). Conclusions: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Background: Muslims are the largest religious minority in Europe. When confronted with life-threatening illness, they turn to their local imams for religious guidance. Aim: To gain knowledge about how imams shape their roles in decision-making in palliative care. Design: Direct Content Analysis through a typology of imam roles. To explore motives, this was complemented by Narrative Analysis. Setting/Participants: Ten Turkish imams working in the Netherlands, with experience in guiding congregants in palliative care. Results: The roles of Jurist, Exegete, Missionary, Advisor and Ritual Guide were identified. Three narratives emerged: Hope can work miracles, Responsibility needs to be shared, and Mask your grief. Participants urged patients not to consent to withholding or terminating treatment but to search for a cure, since this might be rewarded with miraculous healing. When giving consent seemed unavoidable, the fear of being held responsible by God for wrongful death was often managed by requesting fatwa from committees of religious experts. Relatives were urged to hide their grief from dying patients so they would not lose hope in God. Conclusion: Imams urge patients' relatives to show faith in God by seeking maximum treatment. This attitude is motivated by the fear that all Muslims involved will be held accountable by God for questioning His omnipotence to heal. Therefore, doctors may be urged to offer treatment that contradicts medical standards for good palliative care. To bridge this gap, tailor-made palliative care should be developed in collaboration with imams. Future research might include imams of other Muslim organizations. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. Aim: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. Design: An open observational online survey was developed and disseminated via social media and public fora (March–July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. Participants: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. Results: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home (n = 68), in a hospital (n = 114), nursing home (n = 176) or hospice (n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nursing homes. Emotional support for relatives was most often evaluated as sufficient at home (67.7%) and least often in nursing homes (40.3%). Sufficient emotional support for relatives was associated with a higher likelihood to rate the place of death as appropriate. Bereaved relatives of patients who died at a place other than home and whose care was restricted due to COVID-19 were less likely to evaluate the place of death as appropriate. Conclusion: End-of-life care during the COVID-19 pandemic was evaluated least favourably in nursing homes. The quality of emotional support for relatives and whether care was restricted or not were important for assessing the place of death as appropriate. [ABSTRACT FROM AUTHOR]

Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home (n = 163), hospital (n = 249), nursing home (n = 192), hospice (n = 89) or elsewhere (n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question (" Would I be surprised if this patient were to die within the next 12 months?") is widely used to identify palliative patients, though with low predictive value. To improve timely identification of palliative care needs, we propose an additional Surprise Question (" Would I be surprised if this patient is still alive after 12 months?") if the original Surprise Question is answered with "no." The combination of the two questions is called the Double Surprise Question. Aim: To examine the prognostic accuracy of the Double Surprise Question in outpatients with cancer. Design: A prospective study. Participants: Twelve medical oncologists completed the Double Surprise Question for 379 patients. Results: In group 1 (original Surprise Question "yes": surprised if dead) 92.1% (176/191) of the patients were still alive after 1 year, in group 2a (original and additional Surprise Question "no": not surprised if dead and not surprised if alive) 60.0% (63/105), and in group 2b (original Surprise Question "no," additional Surprise Question "yes": surprised if alive) 26.5% (22/83) (p < 0.0001). The positive predictive value increased by using the Double Surprise Question; 74% (61/83) vs 55% (103/188). Anticipatory palliative care provision and Advance Care Planning items were most often documented in group 2b. Conclusions: The Double Surprise Question is a promising tool to more accurately identify outpatients with cancer at risk of dying within 1 year, and therefore, those in need of palliative care. Studies should reveal whether the implementation of the Double Surprise Question leads to more timely palliative care. [ABSTRACT FROM AUTHOR]

Background: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. Aim: To gain insight into (1) what patients – and their relatives – with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. Design: Qualitative thematic analysis of semi-structured interviews. Participants: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. Results: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. Conclusions: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care. [ABSTRACT FROM AUTHOR]

Background: Homeless people experience multiple health problems and early mortality. In the Netherlands, they can get shelter-based end-of-life care, but shelters are predominantly focused on temporary accommodation and recovery. Aim: To examine the characteristics of homeless people who reside at the end-of-life in shelter-based nursing care settings and the challenges in the end-of-life care provided to them. Design: A retrospective record study using both quantitative and qualitative analysis methods. Setting/participants: Two Dutch shelter-based nursing care settings. We included 61 homeless patients who died between 2009 and 2016. Results: Most patients had somatic (98%), psychiatric (84%) and addiction problems (90%). For 75% of the patients, the end of life was recognised and documented; this occurred 0–1253 days before death. For 26%, a palliative care team was consulted in the year before death. In the three months before death, 45% had at least three transitions, mainly to hospitals. Sixty-five percent of the patients died in the shelter, 27% in a hospital and 3% in a hospice. A quarter of all patients were known to have died alone. Documented care difficulties concerned continuity of care, social and environmental safety, patient–professional communication and medical-pharmacological alleviation of suffering. Conclusions: End-of-life care for homeless persons residing in shelter-based nursing care settings is characterised and challenged by comorbidities, uncertain prognoses, complicated social circumstances and many transitions to other settings. Multilevel end-of-life care improvements, including increased interdisciplinary collaboration, are needed to reduce transitions and suffering of this vulnerable population at the end of life. [ABSTRACT FROM AUTHOR]

Background: Psychological distress is highly prevalent among patients with metastatic colorectal cancer. Aims: To perform an economic evaluation of a combined screening and treatment program targeting psychological distress in patients with metastatic colorectal cancer in comparison with usual care. Design: Societal costs were collected alongside a cluster randomized controlled trial for 48 weeks. A total of 349 participants were included. Setting: Participants were recruited from oncology departments at 16 participating hospitals in the Netherlands. Methods: Outcome measures were the Hospital Anxiety and Depression Scale and quality-adjusted life-years. Missing data were imputed using multiple imputation. Uncertainty was estimated using bootstrapping. Cost-effectiveness planes and cost-effectiveness acceptability curves were estimated to show uncertainty surrounding the cost-effectiveness estimates. Sensitivity analyses were performed to check robustness of results. Results: Between treatment arms, no significant differences were found in Hospital Anxiety and Depression Scale score (mean difference: –0.058; 95% confidence interval: –0.13 to 0.011), quality-adjusted life-years (mean difference: 0.042; 95% confidence interval: –0.015 to 0.099), and societal costs (mean difference: –1152; 95% confidence interval: –5058 to 2214). Cost-effectiveness acceptability curves showed that the probability of cost-effectiveness was 0.64 and 0.74 at willingness-to-pay values of €0 and €10,000 per point improvement on the Hospital Anxiety and Depression Scale, respectively. The probability that the intervention was cost-effective compared to usual care for quality-adjusted life-years was 0.64 and 0.79 at willingness-to-pay values of €0 and €20,000 per quality-adjusted life-year, respectively. Conclusion: The intervention is dominant over usual care, primarily due to lower costs in the intervention group. However, there were no statistically significant differences in clinical effects and the uptake of the intervention was quite low. Therefore, widespread implementation cannot be recommended. [ABSTRACT FROM AUTHOR]

Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death. Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents' death. Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis. Results: Nurses' response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed. Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders. [ABSTRACT FROM AUTHOR]

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development. [ABSTRACT FROM AUTHOR]

Background: Nursing homes are among the most common places of death in many countries. Aim: To determine the quality of dying and end-of-life care of nursing home residents in six European countries. Design: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales – Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality. Setting/participants: Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident’s care. Results: Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales – Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14–42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11–55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales – Comfort Assessment while Dying score was associated with country (p = 0.027), older age (p = 0.012), length of stay ⩾1 year (p = 0.034), higher functional status (p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country (p < 0.001), older age (p < 0.001), length of stay ⩾1 year (p < 0.001), higher functional status (p = 0.002), absence of dementia (p = 0.001), death in nursing home (p = 0.033). Conclusion: The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England. [ABSTRACT FROM AUTHOR]

Background: The use of chemotherapy in the last 14 days of life should be as low as possible. Aim: To study the factors related to the use of chemotherapy in the last 14 days of life and the factors related to concurrent antineoplastic treatment and specialized palliative care. Design: This was a population-based cohort study. The data were collected from the Danish Register of Causes of Death, the Danish National Patient Register, and the Danish Palliative Care Database. Analyses were descriptive and multivariate logistic regression. Setting/participants: Cancer decedents between 2010 and 2013 in the Capital Region of Denmark. Results: During the study period, 17,246 individuals died of cancer and 33% received specialized palliative care. In the last 14 days of life, 4.2% received chemotherapy. Younger patients and patients with hematological cancers were more likely to receive chemotherapy in the last 14 days of life. Receiving specialized palliative care was associated with a lower risk of receiving chemotherapy in the last 14 days of life--odds ratio 0.15 for hospices and 0.53 for palliative hospital units. A total of 8% of the population received concurrent antineoplastic treatment and specialized palliative care. Female gender, younger age, and breast and prostate cancer were significantly associated with this concurrent model. Conclusion: Overall, the incidence of antineoplastic treatment in the last 14 days of life was low compared to other studies. Patients in specialized palliative care had a reduced risk of receiving chemotherapy at the end of life. [ABSTRACT FROM AUTHOR]

Background: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups. Aim: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure. Design: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013-2014), and Italy (2013-2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling. Setting/participants: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease (n = 2360). Results: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators). Conclusion: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context. [ABSTRACT FROM AUTHOR]

Background: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff. Aim: This study assesses the palliative care knowledge of staff in NHs in Europe. Design: Cross-sectional study using structured survey. Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge. Results: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care. Conclusions: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps. [ABSTRACT FROM AUTHOR]

Background: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Aim: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Design: Qualitative case studies using interviews. Setting/participants: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. Results: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. Conclusion: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care. [ABSTRACT FROM AUTHOR]

Background: The four main diagnostic groups for palliative care provision are cancer, chronic obstructive pulmonary disease, heart failure and dementia. But comparisons of costs and care in the last year of life are mainly directed at cancer versus non-cancer or within cancer patients. Aim: Our aim is to compare the care and expenditures in their last year of life for Dutch patients with cancer, chronic obstructive pulmonary disease, heart failure or dementia. Design: Data from insurance company Achmea (2009-2010) were linked to information on long-term care at home or in an institution, the National Hospital Registration and Causes of Death-Registry from Statistics Netherlands. For patients who died of cancer (n = 8658), chronic obstructive pulmonary disease (n = 1637), heart failure (n = 1505) or dementia (n = 3586), frequencies and means were calculated, Lorenz curves were drawn up and logistic regression was used to compare patients with high versus low expenditures. Results: For decedents with cancer and chronic obstructive pulmonary disease, the highest costs were for hospital admissions. For decedents with heart failure, the highest costs were for the care home (last 360 days) and hospital admissions (last 30 days). For decedents with dementia, the highest costs were for the nursing home. Conclusion: Patients with dementia had the highest expenditures due to nursing home care. The number of dementia patients will double by the year 2030, resulting in even higher economic burdens than presently. Policy regarding patients with chronic conditions should be informed by research on expenditures within the context of preferences and needs of patients and carers. [ABSTRACT FROM AUTHOR]

Background: Decisions about palliative systemic treatment are key elements of palliative and end-of-life care. Such decisions must often be made in complex, clinical situations. Aim: To explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors’ notes about decisions on palliative systemic treatment. Design: Medical record review (2009–2012) of 147 cancer patients containing 276 notes about palliative systemic treatment. We described the proportion of notes/medical records containing pre-specified items relevant to palliative systemic treatment. We selected patients using the nationwide Netherlands Cancer Registry. Setting: Hospital based. Results: About 75% of all notes reported doctors’ considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients’ wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient’s age (3%). Comorbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients’ performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively. Conclusion: Medical records provide insight into the decision-making process about palliative systemic treatment. The content and detail of doctors’ notes, however, widely varies especially concerning their palliative systemic treatment considerations. Registries that aim to measure the quality of (end-of-life) care must be aware of this outcome. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient’s final stage of life. [ABSTRACT FROM AUTHOR]

Background: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. Aims: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Design: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. Setting/participants: A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ≥18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Results: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Conclusion: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development. [ABSTRACT FROM AUTHOR]

Background: Palliative care is rooted in the care for incurably ill cancer patients. Yet today there is a recognised need for palliative care for patients with non-cancer conditions. However, the often unpredictable illness trajectories and the difficulty in predicting the imminence of death in people with non-cancer conditions may hamper the provision of high-quality palliative care. Aim: To compare the quality of palliative care provided to patients with cancer, patients with organ failure and frail patients and their relatives. Design: An existing dataset was analysed, consisting of data collected through the Consumer Quality Index Palliative Care questionnaire for bereaved relatives. Setting/participants: Data were analysed of 456 relatives of deceased patients with cancer, patients with organ failure and frail patients from various care settings in the Netherlands. Results: Relatives (e.g. partners or children) of deceased patients with organ failure (n = 61) were more likely to have negative experiences regarding the expertise of healthcare professionals compared with relatives of patients with cancer (n = 215). Relatives of frail patients (n = 180) gave a relatively low rating of the general quality of the care in the last week of the patient’s life, both as regards the care provided to patients (p = 0.015) and as regards the support to relatives (p = 0.009). Conclusion: Compared with the bereaved relatives of patients with cancer, bereaved relatives of patients with organ failure or frailty were more likely to negatively assess the palliative care provided to both the patient and themselves. Improving professionals’ expertise in palliative care for people with non-cancer conditions is recommended. [ABSTRACT FROM AUTHOR]

Background: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research. Aim: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands. Design: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers. Setting/participants: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice. Results: Two dimensions of care relationships were found: (1) ‘Ascertain, record and honour wishes’ of the ill person. Adequately dealing with care wishes, ‘last wishes’ and funeral wishes was of central importance: ‘it’s about their life’. We found an emphasis on control that seemed to reflect the participants’ experience that respecting autonomy does not always happen. (2) ‘Being there’: Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences. Conclusion: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care. [ABSTRACT FROM AUTHOR]

Background: A majority of patients prefer to die at home. Specialist palliative care aims to improve quality of life. Hospice assist at home is a Dutch model of general/specialised palliative care within primary care, collaboratively built by general practitioners and a hospice. Aim: The aims of this study are to explore whether hospice assist at home service enables patients at hometo express end-of-life preferences and die in their preferred location. In addition, this study provides insight into symptomburden, stability and early referral. Design: A retrospective cross-sectional evaluation study was performed (December 2014–March 2015), using hospice assist at home patient records and documentation. Primary outcome includes congruence between preferred and actual place of death. Secondary outcomes include symptom burden, (in)stability and early identification. Setting/participants: Between June 2012 and December 2014, 130 hospice assist at home patients, living at home with a life expectancy <1 year, were enrolled. Hospice assist at home, a collaboration between general practitioners, district nurses, trained volunteers and a hospice team, facilitates (1) general practitioner–initiated consultation by Nurse Consultant Hospice, (2) fortnightly interdisciplinary consultations and (3) 24/7 hospice backup for patients, caregivers and professionals. Results: A total of 130 patients (62 (48%) men; mean age, 72 years) were enrolled, of whom 107/130 (82%) died and 5 dropped out. Preferred place of death was known for 101/107 (94%) patients of whom 91% patients died at their preferred place of death. Conclusion: Hospice assist at home service supports patients to die in their preferred place of death. Shared responsibility of proactive care in primary care collaboration enabled patients to express preferences. Hospice care should focus on local teamwork, to contribute to shared responsibilities in providing optimal palliative care. [ABSTRACT FROM AUTHOR]

Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. Aim: This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. Design: This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. Setting/participants: A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24–85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Results: Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Conclusion: Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues. [ABSTRACT FROM AUTHOR]

Background: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. Aim: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives. Design: A controlled before-and-after study (June 2009–July 2012). Halfway, in each of seven intervention wards, two nurse champions were appointed; 11 wards served as control wards. The quality of life during the last 3 days of life, quality of dying and multiple dimensions of quality of dying were compared before and after the introduction of nurse champions. Setting: In a university hospital, each death at non-intensive care units was followed up by an invitation to relatives (10–13 weeks later) to answer a questionnaire. Results: For the two periods, data were collected on 86 and 84 patients in intervention wards and on 108 and 118 patients in control wards (overall response: 52%). In the intervention wards, no differences were found in the quality of life during the last 3 days of life and the quality of dying scores: in both periods, median score for the quality of life during the last 3 days of life was 3.0 and for the quality of dying 7.0. No differences were found in multiple quality of dying dimensions. In control wards, the median quality of dying score was 7.0 pre-intervention and 6.0 post-intervention (p = 0.04). Other scores were comparable with those in intervention wards. Conclusion: Performing a complex intervention study in palliative care proved to be feasible. This study showed no differences in the experiences of bereaved relatives after introduction of nurse champions. The complexity of palliative care in the hospital might require more intensive and longer training of nurse champions. [ABSTRACT FROM AUTHOR]

Background: Many patients show deterioration in functioning and increased care needs in the last year of life. End-of-life care needs and health care utilization might differ between groups of acutely hospitalized older patients. Aim: To investigate differences in geriatric conditions, advance care planning, and health care utilization in patients with cancer, organ failure, or frailty, who died within 1 year after acute hospitalization. Design: Prospective cohort study conducted between 2002 and 2008, with 1-year follow-up. Setting: University teaching hospital in the Netherlands. Participants: Aged ⩾65 years, acutely hospitalized for ⩾48 h, and died within 1 year after hospitalization. At admission, all patients received a systematic comprehensive geriatric assessment. Hospital records were searched for advance care planning information and health care utilization. Differences between patient groups were calculated. Results: In total, 306 patients died within 1 year after acute admission (35%) and were included; 151 with cancer, 98 with end-stage organ failure, and 57 frail older persons. At hospital admission, 72% of the frail group had delirium and/or severe pre-existing cognitive impairment. The frail and organ failure group had many pre-existing disabilities. Three months post-discharge, 75% of the frail and organ failure group had died, 45% of these patients had an advance care plan in their hospital records. Conclusion: Patients with frailty and organ failure had highest rates of geriatric conditions at hospital admission and often had missing information on advance care planning in the hospital records. There is a need to better identify end-of-life needs for these groups. [ABSTRACT FROM AUTHOR]

The article presents information on the comfort goal of care and end-of-life outcomes in dementia. Topics discussed include palliative care, family satisfaction with end-of-life care and quality of dying, and nursing homes (NHs). Also being discussed are long-term-care, advanced care planning (ACP), and generalized estimating equations (GEE).

The article cites a study which examines reported practice of Great Britain, Belgian and Dutch physicians and nurses. The study data was collected using qualitative case studies through interviews. British respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation.

The article presents a population-based study that examined the relationship between the general end-of-life goals of Dutch older people and their specific life-sustaining treatment preferences. The study found that 13.5% of the patients preferred a longer life, irrespective of health problems, and 86.5% of them wanted a shorter life. It indicated that in the cancer scenario, the relationship between a desire for a treatment and a preference for a longer life ranged from 50% to 76%.

The article presents a study which examines the effectiveness of the Availability, Current issues and Anticipation (ACA) training programme for general practitioners on patient-reported outcomes. The participants in the controlled trial were the general practitioners (GPs) who attended a two-year Palliative Care Training Course in the Netherlands. The study shows no significant difference over time between the intervention and control groups.

The article discusses a study which aims to examine how to avoid hospitalizations in the last three months of life based on the insights of general practitioners in the Netherlands. The study conducted in-depth interviews among general practitioners after conducting a cross-sectional nationwide questionnaire study. Results show that 46% of the avoidable hospitalizations can be prevented by proactive patient communication while 28% by additional care at home.

The article presents a study aimed to describe and evaluate the end-of-life care for Dutch patients who died from cancer, organ failure and old age or dementia by general practitioners. The study was conducted through a cross-sectional and a retrospective within a sentinel network of general practitioners. The results of the study reveal the need to integrate palliative care accompanied by optimal disease management.

The article presents a study that describes whether residents with dementia in Dutch long-term care facilities die peacefully and assesses which characteristics of the resident, the palliative care provided and the facilities are associated with dying peacefully. The study included 233 residents with dementia. It also suggests that residents were more likely to die peacefully if they had an optimistic attitude.

The article discusses a study to evaluate the decision-making process in cases where patients request euthanasia and understand the different themes relevant to help in the decision-making process. Participants included 32 cases, 31 relatives and 28 treating physicians from the Netherlands. The findings revealed that several factors like sharing information, relationship building and negotiation, legal requirements, and aftercare helped influence the decision of a request for euthanasia.

Introduction: In order to facilitate GPs in their work and increase the possibilities for patients to remain at home, it is important to identify the obstacles which hinder the delivery of primary palliative care. From previous research we learned about some of the problems experienced by GPs. In this survey we aimed to identify the prevalence of such problems in providing palliative care and its determinants. Methods: The prevalence of obstacles and its determinants were identified by a questionnaire to 320 GPs in three regions of the Netherlands. Obstacles were grouped as follows: communication, organisation & co-ordination of care, knowledge & expertise, integrated care, time for relatives. The potential determinants were GP characteristics and expertise development activities. Results: The response rate was 62.3%. GPs experienced considerable obstacles in all aspects of palliative care. The most prevalent were: problems with bureaucratic procedures (83.9%), the time necessary to arrange home care technology (61.1%) and the difficulties accompanied with the wish or necessity to obtain extra care (56.3%). In general, more years of GP experience and the participation in (multidisciplinary) case discussions were associated with less perceived obstacles. Discussion: Based on the results of our survey policymakers and practitioners can plan and set priorities in handling the obstacles. There is a high necessity of firstly overcoming the barriers within organisation and coordination of care. Furthermore, our study can help in choosing the (additional) expertise needed in the future and in the realisation of the preferred expertise advancement activities. [ABSTRACT FROM AUTHOR]

Over the past 30 years, euthanasia has been under continuous debate in the Netherlands. This contribution aims to provide a moral assessment of this debate. It is argued that euthanasia should be understood within a historical context, as a protest against medical power and as a way to bring about good death. Within the euthanasia debate, two paradoxes are identified which make the issue inherently complex and hard to regulate. The first paradox results from the dialectical relation between individual autonomy and relief of suffering as the major justifications of euthanasia. Although euthanasia represents an ultimate effort to give the individual patient control over his dying, the result of the debate is an increase of medical power. The second paradox is that although euthanasia emerged from a commitment to good death, it is resulting in a reduced range of options to bring about good death. [ABSTRACT FROM AUTHOR]