Concept of unbearable suffering in context of ungranted requests for euthanasia: qualitative interviews with patients and physicians

Objective To obtain in-depth information about the views of patients and physicians on suffering in patients who requested euthanasia in whom the request was not granted or granted but not performed

Agreement of nursing home staff with palliative care principles : a pace cross-sectional study among nurses and care assistants in five european countries

Contains fulltext : 215538.pdf (publisher's version ) (Open Access)CONTEXT: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care. OBJECTIVES: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates. METHODS: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement). RESULTS: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09-0.43, P = 0.003), nurses (0.59; 95% CI: 0.43-0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08-0.34, P = 0.002). CONCLUSIONS: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed

Consensus on treatment for residents in long-term care facilities : perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries

Background: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives.Methods: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus.Results: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland).Conclusions: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus

Chemotherapy and Tyrosine Kinase Inhibitors in the last month of life in patients with metastatic lung cancer: A patient file study in the Netherlands

Objective: Chemotherapy in the last month of life for patients with metastatic lung cancer is often considered as aggressive end-of-life care. Targeted therapy with Tyrosine Kinase Inhibitors (TKIs) is a relatively new treatment of which not much is known yet about use in the last month of life. We examined what percentage of patients received chemotherapy or TKIs in the last month of life in the Netherlands. Methods: Patient files were drawn from 10 hospitals across the Netherlands. Patients had to meet the following eligibility criteria: metastatic lung cancer; died between June 1, 2013 and July 31, 2015. Results: From the included 1,322 patients, 39% received no treatment for metastatic lung cancer, 52% received chemotherapy and 9% received TKIs. A total of 232 patients (18%) received treatment in the last month of life (11% chemotherapy, 7% TKIs). From the patients who received chemotherapy, 145 (21%) received this in the last month of life and 79 (11%) started this treatment in the last month of life. TKIs were given and started more often in the last month of life: from the patients who received TKIs, 87 (72%) received this treatment in the last month of life and 15 (12%) started

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia

Older patients' attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients

<p>Abstract</p> <p>Background</p> <p>Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients’ communication with physicians. This study examines older patients’ attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries.</p> <p>Methods</p> <p>A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach.</p> <p>Results</p> <p>Themes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians’ availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment.</p> <p>Conclusions</p> <p>A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the ‘informed’ and the ‘shared’ patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients’ experiences.</p

Personality factors in exercise addiction: a pilot study exploring the role of narcissism, extraversion, and agreeableness

Despite the increased evidence and acceptance of exercise being classed as a behavioral addiction, there is limited research examining personality characteristics within exercise addicts. The purpose of this study was to examine three personality traits (narcissism, extraversion, and agreeableness) and to examine their role in exercise addiction. The sample comprised 114 voluntary participants (74 females and 40 males) who completed the (i) Exercise Addiction Inventory, (ii) Narcissistic Personality Inventory, and (iii) Ten-Item Personality Inventory, as well as demographic questions and questions concerning their engagement and intensity levels of exercise. Results indicated a low incidence of individuals who were classed as at risk of exercise addiction (7%), but a high incidence of symptomatic individuals (75%). Results suggested that extraversion and narcissism may be underlying factors in exercise addiction with no effect for agreeableness. Exercise engagement and intensity were also related to exercise addiction. Further research examining the relationship between personality types and exercise addiction may be useful in identifying individuals at risk for developing exercise addiction

The use of opioids at the end of life: knowledge level of pharmacists and cooperation with physicians

Contains fulltext : 96464.pdf (publisher's version ) (Open Access)PURPOSE: What is the level of knowledge of pharmacists concerning pain management and the use of opioids at the end of life, and how do they cooperate with physicians? METHODS: A written questionnaire was sent to a sample of community and hospital pharmacists in the Netherlands. The questionnaire was completed by 182 pharmacists (response rate 45%). RESULTS: Pharmacists were aware of the most basic knowledge about opioids. Among the respondents, 29% erroneously thought that life-threatening respiratory depression was a danger with pain control, and 38% erroneously believed that opioids were the preferred drug for palliative sedation. One in three responding pharmacists did not think his/her theoretical knowledge was sufficient to provide advice on pain control. Most pharmacists had working agreements with physicians on euthanasia (81%), but fewer had working agreements on palliative sedation (46%) or opioid therapy (25%). Based on the experience of most of responding pharmacists (93%), physicians were open to unsolicited advice on opioid prescriptions. The majority of community pharmacists (94%) checked opioid prescriptions most often only after dispensing, while it was not a common practice among the majority of hospital pharmacists (68%) to check prescriptions at all. CONCLUSIONS: Although the basic knowledge of most pharmacists was adequate, based on the responses to the questionnaire, there seems to be a lack of knowledge in several areas, which may hamper pharmacists in improving the quality of care when giving advice to physicians and preventing or correcting mistakes if necessary. If education is improved, a more active role of the pharmacist may improve the quality of end-of-life pharmacotherapy

In Vitro Fermentation of NUTRIOSE® FB06, a wheat dextrin soluble fibre, in a continuous culture human colonic model system

Wheat dextrin soluble fibre may have metabolic and health benefits, potentially acting via mechanisms governed by the selective modulation of the human gut microbiota. Our aim was to examine the impact of wheat dextrin on the composition and metabolic activity of the gut microbiota. We used a validated in vitro three-stage continuous culture human colonic model (gut model) system comprised of vessels simulating anatomical regions of the human colon. To mimic human ingestion, 7 g of wheat dextrin (NUTRIOSE® FB06) was administered to three gut models, twice daily at 10.00 and 15.00, for a total of 18 days. Samples were collected and analysed for microbial composition and organic acid concentrations by 16S rRNA-based fluorescence in situ hybridisation and gas chromatography approaches, respectively. Wheat dextrin mediated a significant increase in total bacteria in vessels simulating the transverse and distal colon, and a significant increase in key butyrate-producing bacteria Clostridium cluster XIVa and Roseburia genus in all vessels of the gut model. The production of principal short-chain fatty acids, acetate, propionate and butyrate, which have been purported to have protective, trophic and metabolic host benefits, were increased. Specifically, wheat dextrin fermentation had a significant butyrogenic effect in all vessels of the gut model and significantly increased production of acetate (vessels 2 and 3) and propionate (vessel 3), simulating the transverse and distal regions of the human colon, respectively. In conclusion, wheat dextrin NUTRIOSE® FB06 is selectively fermented in vitro by Clostridium cluster XIVa and Roseburia genus and beneficially alters the metabolic profile of the human gut microbiota