The current empirical research and normative arguments on physician-assisted dying (PAD) in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data-in this case narratives-relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician-bioethicist has to navigate different disciplinary fields and (moral) epistemological paradigms, especially since the 'empirical turn' in bioethics.
BACKGROUND: Palliative care can improve outcomes for patients with advanced chronic heart failure and their families, but timely recognition of palliative care needs remains challenging.
AIM: The aim of this study was to identify characteristics of a tool to assess palliative care needs in chronic heart failure that are needed for successful implementation, according to patients, their family and healthcare professionals in The Netherlands.
METHODS: Explorative qualitative study, part of the project 'Identification of patients with HeARt failure with PC needs' (I-HARP), focus groups and individual interviews were held with healthcare professionals, patients with chronic heart failure, and family members. Data were analysed using the Consolidated Framework for Implementation Research.
RESULTS: A total of 13 patients, 10 family members and 26 healthcare professionals participated. Direct-content analysis revealed desired tool characteristics for successful implementation in four constructs: relative advantage, adaptability, complexity, and design quality and packaging. Healthcare professionals indicated that a tool should increase awareness, understanding and knowledge concerning palliative care needs. A tool needs to: be adaptable to different disease stages, facilitate early identification of palliative care needs and ease open conversations about palliative care. The complexity of chronic heart failure should be considered in a personalized approach.
CONCLUSIONS: The current study revealed the characteristics of a tool for timely identification of palliative care needs in chronic heart failure needed for successful implementation. The next steps will be to define the content of the tool, followed by development of a preliminary version and iterative testing of this version by the different stakeholders.
Background: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict.
Methods: In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured.
Discussion: This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods.
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.
The Dutch Supreme Court this week ruled that a doctor may act on a previously written euthanasia request and end the life of a patient who, because of advanced dementia, can no longer express their wishes.
Doctors must, however, still adhere to criteria of care for euthanasia practice if they are to avoid prosecution. These, enshrined in the 2002 law, include that the patient is suffering “hopelessly and unbearably” and that the request is “voluntary and well considered,” meaning that the patient must be competent when the request was made.
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In a recent Dutch euthanasia case, a woman underwent euthanasia on the basis of an advance directive, having first been sedated without her knowledge and then restrained by members of her family while the euthanasia was administered. This article considers some implications of the criminal court’s acquittal of the doctor who performed the euthanasia. Supporters of advance euthanasia directives have welcomed the judgement as providing a clarification of the law, especially with regard to the admissibility of contextual evidence in interpreting advance euthanasia directives, but suggested that the law regarding advance euthanasia directives should be further relaxed to remove the requirement of current suffering and that an unfortunate consequence of the prosecution is that it is likely to deter doctors from performing euthanasia even in more straightforward cases. This article argues that the court’s endorsement of the use of contextual evidence is problematic, that the case for prioritising prior decisions over current interests has not been advanced by the discussion surrounding this case and that worries about the alleged deterrent effect are not well founded.
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: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses.
Methods: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test.
Results: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics.
Conclusion: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.
Purpose: Most people are familiar with the expression ‘laughter is the best medicine’. By enhancing cognitive flexibility and strengthening relationships, laughter can be considered a holistic care-approach. Yet, in medical oncology, especially the palliative phase, using humour can be considered inappropriate or taboo. We aimed to explore the acceptability and functions of humour and laughter in patients with prolonged incurable cancer.
Methods: This study was performed in a Dutch Comprehensive Cancer Centre. We included four short conversations with patients, eighteen in-depth patient-interviews and eleven observational fieldnotes in which humour was a major topic of the conversation. We further administered an online questionnaire to thirty-three oncology clinicians about their experiences with humour. Qualitative data were thematically analysed. We specifically distinguished between humour and laughter.
Results: Nearly all specialists reported using humour (97%), and all reported sometimes laughing during consultations; 83% experienced a positive effect of laughter. These results were in line with patients’ experiences: Patients noted that humour always stayed alive despite medical difficulties. Apart from this human aspect, patients also used humour to broach difficult topics and downplay challenges. Patients and specialists acknowledged that using humour is sometimes inappropriate, partly because they did not always share the same humour. Laughter, in contrast, was regarded as ‘lighter’ than humour, and could, accordingly, more easily be implemented. Specialists cautioned against patients using laughter to avoid broaching difficult topics.
Conclusion: Many conversations were full of laughter. Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making.
Objective: In breast cancer patients, treatment at the end of life accounts for a major share of medical spending. However, little is known about the variability of cost trajectories between patients. This study aims to identify underlying latent groups of advanced breast cancer patients with similar cost trajectories over the last year before death.
Methods: data from deceased advanced breast cancer patients, diagnosed between 2010 and 2017, were retrieved from the Southeast Netherlands Advanced Breast Cancer (SONABRE) Registry. Costs of hospital care over the last twelve months before death were analyzed, and the variability of longitudinal patterns between patients were explored using group-based trajectory modeling. Descriptive statistics and multinomial logistic regression were applied to investigate differences between the identified latent groups.
Results: We included 558 patients. Over the last twelve months before death, mean hospital costs were €2,255 (SD = €492) per month. Costs increased over the last five months and reached a maximum of €3,614 in the last month of life, driven by hospital admissions, while spending for medication declined over the last three months of life. Based on patients’ individual cost trajectories, we identified six latent groups with distinct longitudinal patterns, of which only two showed a marked increase in costs over the last twelve months before death. Latent groups were constituted of heterogeneous patients, and clinical characteristics explained membership only to a limited extent.
Conclusions: The average costs of advanced breast cancer patients increased towards the end of life. However, we uncovered several latent groups of patients with divergent cost trajectories, which did not reflect the overall increasing trend. The mechanisms underlying the variability in cost trajectories warrants further research.
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.
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.
OBJECTIVE: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use.
DESIGN: Cross-sectional claims data study.
SETTING: The Netherlands.
PARTICIPANTS: Patients deceased in 2013-2015 with lung cancer (N = 25 553).
MAIN OUTCOME MEASURES: We calculated regional medical practice variation scores, adjusted for age, gender and socioeconomic status, for radiotherapy, chemotherapy, CT-scans, emergency room contacts and hospital admission days during the last 6 months of life; Spearman Rank correlation coefficients measured the association between the adjusted regional medical practice variation scores for hospital admissions and ER contacts and GP and long-term care utilization.
RESULTS: The utilization of hospital services in high-using regions is 2.3-3.6 times higher than in low-using regions. The variation was highest in 2015 and lowest in 2013. For all 3 years, hospital care was not significantly correlated with out-of-hospital care at a regional level.
CONCLUSIONS: Hospital care utilization during the last 6 months of life of patients with lung cancer shows regional medical practice variation over the course of multiple years and seems to increase. Higher healthcare utilization in hospitals does not seem to be associated with less intensive GP and long-term care. In-depth research is needed to explore the causes of the variation and its relation to quality of care provided at the level of daily practice.
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: Expert consultation supports general practitioners (GPs) in delivering adequate palliative homecare. Insight into consultation practices from a GP's perspective is needed in order to shape consultation services to their wishes and needs.
AIM: To explore palliative care consultation practices from a GP's perspective.
DESIGN AND SETTING: Cross-sectional web-based survey among all GPs (n=235) in the region of Nijmegen, the Netherlands.
METHODS: Our questionnaire contained questions about the delivery of palliative care by GPs, their consultation practices and satisfaction with current services. Questions consisted mainly of 5-point Likert scales. We transformed these scales into numerical values to calculate mean scores. Linear mixed models for repeated measurements were used to study differences in scores.
RESULTS: GPs most often consulted informal caregivers (mean score 3.6) or fellow GPs (mean score 3.3). Physical problems were discussed the most (mean score 3.5), while social and existential issues were discussed least (mean score 1.9 for both). In their choice of a particular consultation service, GPs considered the quality of the provided advice to be the most important factor. GPs were satisfied with current consultation services, with fellow GPs receiving the highest satisfaction scores (mean score 4.6). Finally, when recalling their last palliative patient, most GPs started requesting consultation during this patient's last month of life.
CONCLUSIONS: Next to informal caregivers, GPs preferably seek advice from fellow GPs. Physical issues receive much attention during consultations; however, other vital aspects of palliative care seem to remain relatively neglected, such as social and existential issues and a proactive care approach.
Background: The Dutch guidelines for esophageal and gastro-esophageal junction (GEJ) cancer recommend discussion of patients by a multidisciplinary tumor board (MDT). Despite this recommendation, one previous study in the Netherlands suggested that therapeutic guidance was missing for palliative care of patients with esophageal cancer. The aim of the current study was therefore to assess the impact of an MDT discussion on initial palliative treatment and outcome of patients with esophageal or GEJ cancer.
Material and methods: The population-based Netherlands Cancer Registry was used to identify patients treated for esophageal or GEJ cancer with palliative intent between 2010 and 2017 in 7 hospitals. We compared patients discussed by the MDT with patients not discussed by the MDT in a multivariate analysis. Primary outcome was type of initial palliative treatment. Secondary outcome was overall survival.
Results: A total of 389/948 (41%) patients with esophageal or GEJ cancer were discussed by the MDT before initial palliative treatment. MDT discussion compared to non-MDT discussion was associated with more patients treated with palliative intent external beam radiotherapy (38% vs. 21%, OR 2.7 [95% CI 1.8–3.9]) and systemic therapy (30% vs. 23%, OR 1.6 [95% CI 1.0–2.5]), and fewer patients treated with stent placement (4% vs. 12%, OR 0.3 [95% CI 0.1–0.6]) and best supportive care alone (12% vs. 33%, OR 0.2 [95% CI 0.1–0.3]). MDT discussion was also associated with improved survival (169 days vs. 107 days, HR 1.3 [95% CI 1.1–1.6]).
Conclusion: Our study shows that MDT discussion of patients with esophageal or GEJ cancer resulted in more patients treated with initial palliative radiotherapy and chemotherapy compared with patients not discussed by the MDT. Moreover, MDT discussion may have a positive effect on survival, highlighting the importance of MDT meetings at all stages of treatment.
Hope is an important topic in spiritual care in palliative care but the experiences of chaplains with hope have hardly been explored. The objective of this study was to explore Dutch chaplains' experiences with hope in palliative care. Semi-structured interviews were conducted, which were thematically analyzed. The 10 chaplains had a variety of ordinations: Muslim, Protestant, Roman Catholic, Humanistic, or otherwise. Participants spoke about changes in patients' hope, often implying despair and surrender, in which patients' self-reflection was pivotal. Participants felt witnesses of hope, not by offering hope, but by acknowledging patients' hope and despair while being with their patients. They criticized other professionals who, not bearing witness to these experiences, tried to offer hope to patients. We conclude that chaplains may become witnesses of hope in times of despair, which includes the (ideological) critical function of spiritual care.
PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes.
DESIGN: A cross-sectional, descriptive survey design was used.
METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis.
FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority.
CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones.
CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.