BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.
AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.
DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).
SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium.
METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives.
RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out.
CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.
OBJECTIVE: To examine trends in end-of-life communication with people with cancer in general practice.
METHODS: Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009-2010 (ES: 2010-2011) and 2013-2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344).
RESULTS: A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for end-of-life care (from 73% to 90%) in BE, and in GPs' awareness of patients' preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and 28%) and the NL (from 62% and 32% up to 70% and 52%). Communication about options for end-of-life care and psychosocial problems decreased in the NL (from 88% and 91% down to 73%) and ES (from 76% and 77% down to 26% and 39%).
CONCLUSION: Considerable change in GP-patient communication seems possible in a relatively short time span, but communication cannot be assumed to increase over time. Increasing specialisation of care and task differentiation may lead to new roles in communication for healthcare providers in primary and secondary care. Improved information sharing between GPs and other healthcare providers may be necessary to ensure that patients have the chance to discuss important end-of-life topics.
End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices.
Providing quality end-of-life care for older peopleis one of our biggest challenges in this newCOVID-19 era. Advanced age, because of its asso-ciation with a range of physical comorbidities, is associated with greater mortality with COVID-19. Specifically, case fatality rates in the 70+age group range from 8.6% to 13.4% compared with 0.0026–0.3% in those under 45 (Ruan,2020;Zhouet al.,2020). However, vulnerability is not con-ferred by physiological factors alone, but addition-ally by psychosocial factors such as ageism and ethical considerations such as distributive justice (Stirling,2020;Truoget al.,2020). Those who are at high risk for COVID-19 are the same patients we take care of in geriatric psychiatry, geriatrics,nursing home, hospice, and palliative care, that is,older, ill, frail, cognitively impaired, at high risk of delirium with mental and physical comorbidities (van den Brinket al.,2017). An acute COVID infection may be, as Ballentine (2020) suggested,“what collapses the house of cards” for our vulnerable patients.
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.
OBJECTIVES: Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers.
DESIGN: An exploratory qualitative study.
SETTING AND PARTICIPANTS: We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient.
METHODS: We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis.
RESULTS: Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians.
CONCLUSIONS AND IMPLICATIONS: Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
BACKGROUND: COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect his.
AIM: To study the effect of use and timing of PHC on medical resource use and costs in the last 30 }days before death (DBD) for COPD.
METHODS: Retrospective study of all Belgian decedents in 2010-2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios (OR) for medical resources were calculated between using and four PHC timing categories (>360; 360-181; 180-91; 90-31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.
RESULTS: Of the 58 527 decedents with COPD, 644 patients (1.1%) received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the OR for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (IV) (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the OR for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), non-IV (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (p<0.001). Mean total healthcare costs were €1569 lower for using PHC. All PHC timing categories showed a benefit in medical resource use and costs. However, we observed the largest benefit in the category PHC 90-31 DBD.
CONCLUSION: Health policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD. Funding SBO IWT nr. 140009.
CONTEXT: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes towards using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice.
OBJECTIVES: The aim of this study was to find out what influences professional caregivers' and family members' attitudes regarding the use of monitors during CSD.
METHODS: We conducted semi-structured face-to-face interviews with 20 professional caregivers and 15 family members, who cared for a patient or had a family member respectively who took part in a study using monitoring devices. Recruitment took place in an academic hospital, a loco-regional hospital and 2 nursing homes, all located in Belgium. Two researchers independently analysed the data, using grounded theory to inductively develop a model that represents the emerging attitude towards use of monitors during CSD.
RESULTS: Our model shows that the emerging attitudes towards using monitors during CSD is determined by view on CSD, desire for peace of mind, emotional valence attached to using monitors and the realization that the sole use of behavior-based observational measures could be unreliable in a CSD context. We identified several facilitators and barriers to inform future implementation strategies.
CONCLUSION: Most participants had no objections and all participants found the use of monitoring devices during CSD feasible and acceptable. We identified a number of facilitators and barriers and suggested that being aware that care can be improved, good communication, shared decision making and continuing professional education can overcome the identified barriers. We suggest future research would focus on developing implementation strategies and guidelines for introducing objective monitoring devices in diverse palliative care settings.
OBJECTIVES: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.
DESIGN: We conducted a retrospective observational study.
SETTING AND PARTICIPANTS: We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.
MEASURES: We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.
RESULTS: In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.
CONCLUSIONS AND IMPLICATIONS: Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.
Three Belgian doctors have been acquitted of unlawfully poisoning a 38 year old woman almost 10 years ago, in a landmark trial centred on Belgium’s assisted dying law.
During the high profile case the court heard that Tine Nys, who had severe psychiatric problems and had survived earlier suicide attempts, had repeatedly asked to be helped to die under the country’s 2002 legislation.
The law requires the independent opinion of three medical professionals. The two GPs and psychiatrist on trial agreed that Nys met the criterion of unbearable physical and psychological suffering from an incurable illness.
L’auteur Jacques Brotchi retrace, dans un dialogue avec sa petite-nièce, l’évolution de la notion d’euthanasie et ses implications morales en Belgique et ailleurs. Avec clarté et délicatesse, il explique dans quelles circonstances chacun peut bénéficier du droit de choisir sa n de vie et partir dans l’apaisement et la dignité.
Objectives: This study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).
Methods: Using cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.
Results: Latent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.
Conclusions: Older adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.
Three Belgian doctors—two GPs and a psychiatrist—are being accused of unlawfully killing a 38 year old patient by poisoning almost 10 years ago, in the country’s first criminal case involving assisted dying.
The high profile trial is focusing on the conditions in the 2002 legislation that must be fulfilled before a request for assisted dying can be acted on. It is also revealing possible gaps in the law and the many emotions that patients, their families, and medical professionals may feel when involved in such a procedure.
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BACKGROUND: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change.
METHODS: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design.
DISCUSSION: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family.
TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses.
De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Formée en France, je travaille en Belgique depuis 2015. Je suis médecin généraliste, diplômée en soins palliatifs après deux années de formation théorique et de stages. Avant 2015, j'ai travaillé en France en équipe mobile de soins palliatifs intra et extra hospitalière, ainsi qu'en unité de soins palliatifs.
L'auteur cherche à répondre à la souffrance psychique et existentielle de ses patients. Pour se faire, il utilise les théories de Viktor Frankl car ce psychiatre a consacré toute sa carrière à une recherche empirique sur le sens de la vie.
Partant d'un cas particulier, nous esquisserons d'abord la problématique de l'euthanasie, pour exposer ensuite, sur la base des critères légaux, les différents points épineux de cette pratique, non seulement sur la forme, mais aussi sur le fond.
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