Search

Advance directives for euthanasia in dementia: a reflection from Belgium and the Netherlands Concerning the current law on euthanasia in Belgium, it is often suggested to enable euthanasia in patients suffering from (severe) dementia by means of an advance directive, largely triggered by the authority principle of the person who initially requested it. The current manuscript reflects on this proposed law extension: it mainly wants to stress the complexity of the issue. It is concluded that advance directives for euthanasia in dementia are not easy to implement in an optimized dementia care pathway.

Purpose Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

Background Conversation guides support professionals to conduct ACP-conversations, yet insight in essential components is limited. This systematic review aims to evaluate the content, rationale and empirical evidence on the effect of ACP interventions based on conversation guides. Methods Medline, Embase, PsychINFO and CINAHL were searched from January 1, 1998 to February 23, 2018 to identify peer-reviewed articles describing or evaluating scripted ACP-conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale and empirical evidence was extracted. Results Eighty-two articles reporting on thirty-four unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP-conversations consisting of four phases: preparation, initiation, exploration and action. Exploration of patient’s perspectives on illness, living well, end-of-life (EOL) issues and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP-conversations, yet perceive them as difficult and emotional. Conclusion ACP-conversation guides address a diversity of themes regarding illness, EOL and decision making, with a focus on the exploration of patient’s perspectives and preferences. Evidence on translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

Background Systematic evaluation of health care use and costs is important to identify the impact of advance care planning (ACP) programs. Such evaluations are currently scarce in Europe. Methods Our study was performed in the context of the ACTION trial, a randomized controlled study to evaluate effects of the ACTION Respecting Choices (RC) ACP intervention in patients with advanced cancer in six European countries. We applied a healthcare perspective and identified hospital care use from hospital medical records for 1 year after study inclusion. Unit prices were calculated for all six countries separately. The unit price of the ‘Respecting Choices’ ACP intervention was determined with the micro-costing method, which is based on detailed assessments of all resources used. Results Most intervention patients had one ACP conversation, one third had two. The average length was 90 minutes (standard deviation 45 minutes). Unit costs were comparable between countries for most interventions, with the exception of cancer-specific treatment. Most patients received chemotherapy, with a minority receiving surgery. Preliminary analyses showed similar patterns of health care use in both ACP and control groups: numbers of diagnostic procedures such as scans and biopsies were comparable; mean (range) length of hospital stay was 9 days (0 - 63) and 8 days (0 – 75) in intervention and control patients, respectively. Conclusion Unit costs of health care interventions were remarkably comparable between countries. The ACTION RC ACP intervention, consisting of conversations by patiens, relatives, and facilitators, did not appear to affect hospital care use. Funding EU FP7.

Background Stability of patients’ treatment preferences has important implications for advance care planning, among which its timing. We therefore examined the stability of preferences and its predictors of patients with advanced cancer. Methods In this cohort, 104 patients with metastatic cancer and an oncologist estimated life-expectancy of ≤ six months participated in interviews following clinical visits in which patients’ recent scan results were discussed. Interviews were repeated in three monthly follow-ups. At baseline, patients’ age, education, sex, race, marital status, insurance status, and type of cancer were documented. At each assessment, patients reported their treatment preferences (i.e. trade-offs of life-prolonging versus comfort care), quality of life, and illness understanding. Results At baseline (n=104), 55 (53%) patients preferred life-prolonging care, 49 (47%) preferred comfort care. Patients were followed for one (n=104), two (n=74), or three months (n=44). Between baseline and month I, 84 patients (81%) had stable treatment preferences. During follow-up, preferences of 71 patients (68%) remained stable (equally divided between a consistent preference for life-prolonging and comfort care). Treatment preferences of 33 (32%) patients changed at least once during follow-up. Patients’ preferences at baseline strongly predicted preferences at month I (OR=17.8; CI=6.7–47.3; p Conclusion Two-thirds of patients with advanced cancer had stable preferences regarding life-prolonging versus comfort care. Changes of preferences were often unpredictable. Our findings suggest potential benefits of ongoing communication about preferences, including advance care planning.

Collusion in the healthcare setting occurs when a patient’s loved ones seek healthcare professionals’ cooperation in hiding or moderating the disclosure of a serious illness from the patient with capacity to make their own healthcare decisions. Collusion more commonly occurs in patients who are older, perceived as vulnerable and in need of protection from the harsh truth. When collusion occurs, the patient is excluded from the decision-making process, their autonomy is suspended, and advance care planning is not even an option. Collusion may be justifiable if the doctor exercises therapeutic privilege and withholds diagnostic and/or prognostic information from the patient because of concerns that the patient may be seriously harmed physically or psychologically, if informed. The highest court in Singapore in the recent case of Hii Chi Kok v Lucien London Ooi expanded the concept of therapeutic privilege. The court endorsed the view that therapeutic privilege should not be abused by doctors to prevent patients with mental capacity from deciding for themselves just because the doctors think their choice is not in their best interests. However, it seemed to leave the door open for the possibility of triggering the therapeutic privilege if the patient is impaired in their decision-making capabilities, although still possessing mental capacity, and refuses low-risk beneficial treatment because they misunderstand the rationale treatment for it, even with appropriate assistance. Are there limits to an individual refusing beneficial treatment? Is this compatible with respecting an individual’s right to make an unwise decision? Where should the line be drawn?

Background Advance Care Planning (ACP) enables individuals together with their relatives and health care professionals to discover, discuss and document their values, preferences and goals for care. Objective To evaluate the involvement of pediatricians taking care of children with life-limiting conditions in ACP. Methods All pediatricians from six Dutch pediatric hospitals completed a survey about experiences with ACP in their most recent case of a deceased child. Results Of the 207 participating pediatricians (response 36%), 168 completed the questionnaire (81%), of which 86% described a case. Of these children, 53% died before the age of 5 years. ACP conversations always took place with parents, mostly about diagnosis, life expectancy, goals of care, fears and worries and code status. In 23%, ACP conversations occurred with children (age: range 2.2–17.3 years, median 11.5 years), discussing mostly joy of life, hope, diagnosis and fears and worries. 94% of pediatricians were satisfied with their conversations skills. The occurrence rate of ACP conversations was indicated as insufficient by 49%. Pediatricians stated in 60% that ACP conversations have to result in a documented code status. 37% said ACP conversations intend mainly to provide information to families. Reported barriers to ACP conversations were mostly parent-related, while facilitators concerned continuity of care and a multidisciplinary approach. Conclusion Pediatricians reported to have ACP conversations mainly with parents with a focus on medical issues. Insight in the perspective of the child is limited. Education on the holistic approach of ACP and on involvement of children in ACP is needed.

Background ACP-conversations in pediatrics seem to occur too late and infrequent. Standards to conduct ACP-conversations are lacking. This study describes the development of an evidence-based pediatric ACP-intervention. Methods The Medical Research Council framework for development and evaluation of complex interventions was used to structure the developmental process. The process included a systematic review, expert review, a survey among pediatricians and qualitative research among parents, adolescents and health care professionals (HCPs). Behavioral theories and theories of coping with bereavement and loss underpinned the intervention. Results ACP was seen as an ongoing communicative process, where children and their families work together with HCPs to discover, discuss and document values, preferences and goals of care. The intervention supports ACP by 1) educational materials, 2) an ACP conversation guide and 3) a training for HCPs. Educational materials prepare children and parents by clarifying the concept of ACP and providing preparation prompts to discover their values. The guide provides HCPs structures and wording to address the following identified ACP topics: the identity of the child, living with illness, the future, hope, fears and worries, preferences for daily life and goals of care. The training educates HCPs about the concept of ACP and coping with illness and loss and trains specific communication skills. The intervention includes a documentation format. Conclusion A pediatric ACP-intervention was designed targeted to the following needs: education about the concept of ACP, strategies to conduct ACP conversations and a documentation format. Our ongoing research will evaluate the feasibility of the intervention.

Aim: Narrative medicine has been promoted as an innovative and effective means of stimulating medical students’ professional development by teaching them to approach their patients’ experiences of illness with more understanding and compassion. This systematic literature review aims to answer the following question: what evidence of effect is available in the literature about models for teaching narrative medicine? Methods: We conducted a narrative review of 36 articles and used the Best Evidence in Medical Education (BEME) Global Scale and Kirkpatrick Scale for strength and importance of evidence to categorize reported assessment strategies and to evaluate the effectiveness of their narrative medicine programs. Results: We found evidence that narrative medicine is an effective pedagogic tool with a clear and replicable structure and methodology. We also determined that a positive impact could be measured when pertaining to participation and modification of attitudes, knowledge, and skills. However, unequivocal evidence of the effect of narrative medicine on students’ behavior or ongoing interaction with colleagues and patients is still lacking. Conclusion: While many recent publications describe the goals and virtues of a narrative-based approach, more research is needed to determine whether or not there is an ideological consensus undergirding this approach. In addition, it is still unclear whether the long-term impact of narrative medicine classroom interventions are felt by patients, or whether such interventions positively impact patient care.

Background: Within the EU, regulators are obliged to take ethical issues into consideration during marketing authorization deliberation. The goal of this manuscript is to identify what kinds of ethical issues regulators encounter during marketing authorization application deliberations, and the incidence of these ethical issues. Methods: This study used an EMA-provided Excel file that contains all the GCP non-compliance findings from all inspection reports from 2008–2012. There were 112 medicinal products and a total of 288 clinical trial sites. There were a total of 4014 GCP non-compliance findings. The findings that were ethically relevant were extracted using NVivo 10.0 and categories for the ethically relevant findings (ERFs) were created. Note was taken of the incidence of ERFs for each category and the inspectors’ gradings of these findings were extracted. This study also looked at the mean and the maximum number of ERFs per grading per medicinal product application, as well as the number of medicinal products with at least one ERF and those with at least major ERFs. Results: With multiple coding, there were 1685 ERFs. ERFs were present in almost all of the medicinal products (97.3%). The majority of ERFs were graded as major. At least major ERFs were present in almost all medicinal products with ERFs. The categories with the highest number of ERFs were protocol issues, patient safety, and professionalism issues. In terms of the density of combined critical and major findings, monitoring and oversight, protocol issues, and respect for persons top the list. This study also showed that, on average, there were 7.54 major and 2.95 critical ERFs per medicinal product application, although ERFs can increase to 30 major and 12 critical. Conclusion: Regulators regularly encounter ERFs that at least “might adversely affect the rights, safety or well-being of the subjects”. It remains to be explored how regulators respond to these ethical issues.

In Big Data health research, concerns have risen about privacy and data protection. While the ethical and legal discussion about these issues is ongoing, so is research practice. The aim of this qualitative case study is to gain more insight into how these concerns are currently dealt with in practice. For this multiple-case study, the YOUth cohort, a longitudinal cohort focusing on psychosocial development, and Big Data Psychiatry, a pilot study in Big Data analytics on psychiatric health data, were selected. A broad range of relevant documents were collected and semi-structured interviews with stakeholders were conducted. Data were coded, studied and divided into themes during an iterative analytical process. Three themes emerged: abandoning anonymisation, reconfiguring participant control, and the search for guidance and expertise. Overall, the findings show that it takes considerable effort to take privacy and data protection norms into account in a Big Data health research initiative, especially when individual participant level data need to be linked or enriched. By embracing the complexity of the law in an early phase, setbacks could be prevented, the existing flexibility within the law could be utilised, and systems or organisations could be designed and constructed to take relevant rules into account. Our paper illustrates that a close collaboration of experts with different backgrounds within the initiative may be necessary to be able to successfully navigate this process.

Swart SJ, Van der Heide A, Van Zuylen L, Perez RSGM, Zuurmond WWA, Van der Maas PJ, Van Delden JJM, Rietjens JAC. Palliatieve sedatie: hoe diep? Huisarts Wet 2012;55(10):434-8.

In “Is There an Ethical Obligation to Disclose Controversial Risk?” De Marco and colleagues (2014) discuss the disclosure of disputed evidence of serious risk to future research participants. We ag...

Contains fulltext : 88755.pdf (Publisher’s version ) (Closed access) Despite the recommendation of the Dutch association of nursing home physicians (NVVA) to be immunized against influenza, vaccine uptake among HCWs in nursing homes remains unacceptably low. Therefore we conducted a cluster randomised controlled trial among 33 Dutch nursing homes to assess the effects of a systematically developed multi-faceted intervention program on influenza vaccine uptake among HCWs. The intervention program resulted in a significantly higher, though moderate, influenza vaccine uptake among HCWs in nursing homes. To take full advantage of this measure, either the program should be adjusted and implemented over a longer time period or mandatory influenza vaccination should be considered.

The recent influenza pandemic proved that an influenza pandemic is no longer a future scenario. It may urge health care workers to undergo certain or even large risks. According to the WHO as well as commentators, a strong case can be made for adopting a duty to treat during a disease outbreak. Many current professional codes of ethics, however, fail to provide explicit guidance sufficient to set policy or assure the public in the event of an infectious disease outbreak. This paper aims to assess whether there is a duty to treat in the case of an influenza pandemic. As we conclude that there are valid reasons that support the duty to treat in this specific context, we will subsequently explore its scope and limits.

Introduction: In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15-20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods: Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results: In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion: The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed.

Objective Smoking increases the risk for influenza and pneumococcal disease, but vaccination uptake is lower among smokers than non-smokers. We therefore aimed to determine reasons for not complying with vaccination among smokers and non-smokers. Method In 2005 a self-administered questionnaire was sent to a random sample of Dutch patients ( n = 4,000) assessing medical, social and behavioural determinants. Independent factors associated with not complying with influenza and pneumococcal vaccination among smokers and non-smokers were assessed by multivariate logistic regression analysis. Results In all, 1,725 of 4,000 patients returned the questionnaire (response rate: 43%), 426 (25%) were smokers. Among smokers self-reported flu vaccine uptake was 42% and among non-smokers 52% among both only 0,2% received both vaccines. Most important predictors of not complying in smokers and non-smokers were patient's beliefs not to be susceptible to disease (odds ratio (OR) 4.0, 95% confidence interval (CI): 2.0, 8.0 and OR 2.8, CI: 2.0, 3.9), finding it difficult to go to the GP for vaccination (OR 2.5, CI: 1.3, 4.8 and OR 1.8, CI: 1.3, 2.6) and being against vaccination (OR 2.4 CI: 1.3, 4.4 and OR 1.8, CI: 1.3, 2.6), respectively. Conclusion There are no substantial differences in determinants associated with not complying with influenza and pneumococcal vaccination between smokers and non-smokers but there is a trend towards stronger associations in smokers.

Rothstein and Shoben (2013) claim that the magnitude of consent bias in nonintervention research is probably small. To substantiate this claim, the authors provide numerical scenarios of a hypothet...

In April 2002 a new law regarding euthanasia came into effect in The Netherlands. This law holds that euthanasia remains a criminal offence unless it is (1) performed by a physician who (2) acts according to six specified rules of due care and (3) reports the case to a review committee. The six rules of due care are similar to those of the previous regulation and are largely based on jurisprudence. Completely new, however, is the article concerning a competent patient who has written an advance directive requesting euthanasia under certain circumstances. The law stipulates that a physician may act according to that written request, as long as he or she fulfils all other rules of due care. The author defends the view that these requests are neither feasible nor ethically justifiable, and presents both moral and practical arguments for this, claiming that for consistency reasons one cannot act on the basis of a written statement and fulfil the other rules of due care at the same time. The author also examines a difficult case of a demented, severely depressed woman who had written a living will requesting euthanasia before she became demented.

Respect for autonomy is well known as a core element of normative views on good care. Most often it is interpreted in a liberal way, with a focus on independence and self-determination. In this article we argue that this interpretation is too narrow in the context of care in nursing homes. With the aim of developing an alternative view on respect for autonomy in this setting we described four interpretations and investigated the moral intuitions (i.e. moral judgements) of caregivers regarding these approaches. We found that these caregivers seemed to value different notions relating to respect for autonomy under different circumstances. There was no significant difference in moral judgements between men and women or between doctors and nurses. We conclude that a multidimensional understanding of this principle would best fit this context. We end this article with a description of a modest theory of respect for autonomy in nursing homes.

OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors' decisions at the end of life that might hasten a patient's death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.

In de afgelopen veertig jaar is de emancipatie van de pati¨nt de belangrijkste maatschappelijke functie van de algemene (medische) ethiek geweest. Deze ethiek wierp zich op als voorvechtster van de pati¨nt en streed voor diens rechten. De paternalistische arts moest van zijn sokkel gehaald worden. Op zichzelf zit er zonder twijfel veel goeds in de aandacht voor het principe van respect voor autonomie. Het is dan ook niet de bedoeling te suggereren dat we daaruit voortvloeiende verworvenheden moeten verlaten. Maar we lijken in een positie terecht te zijn gekomen waarin dit het enig moreel referentiepunt is geworden. Waarden als zorg, verantwoordelijkheid en betrokkenheid kunnen moeilijk verdisconteerd worden in een door autonomie gedomineerde moraal.

The growth in the number of possible medical interventions in the past decennia necessitates physicians to consider whether to use them. Contrary to decisions to withhold treatment, little is known about “non-diagnosis decisions” (NDD) although their consequences seem to be more uncertain. Hence, we hypothesized that “determinants” and “reasons” for NDD are different from those that are associated with non-treatment decisions (NTD). We performed a systematic review on research on physicians' decisions to withhold or withdraw diagnostic or therapeutic interventions. A total of 11,773 unique citations published either in Medline, Embase, or the Cochrane databases were screened, of which 45 articles, –including 4 articles describing NDD in elderly patients suspected of cardiovascular diseases, were considered relevant and analysed in detail. “Determinants” and “reasons” for NDD and NTD were extracted, categorized into predefined categories, and compared with each other. Besides several similarities, we found various differences between NDD and NTD. The proportionality of an intervention (ie, the risk or burden of an intervention opposed to that of no intervention) was associated with NTD but not with NDD. Physician and care institution related characteristics, such as age of the physician or the employment of physician extenders, were more frequently associated with NDD than with NTD. Furthermore, the presence of non-resuscitate directives was correlated with NDD but not with NTD. This systematic review shows that there is little information on NDD in the current literature. Yet, there is not enough evidence to conclude whether NDD can be seen as a separate entity distinct from NTD. More research focusing on NDD seems needed.

Background Physicians committed to the care of elderly patients, are challenged with the diagnosis of venous thromboembolism (VTE: deep venous thrombosis and pulmonary embolism) due to a higher incidence, co-morbidities masking signs and symptoms and burdening referrals. Clinical decision rules (CDRs) have been developed and implemented for VTE. Yet, until now, no study has evaluated the existing evidence of the diagnostic accuracy of CDRs for VTE in elderly. Purpose To assess the effect of increasing age on diagnostic accuracy of CDRs for VTE in elderly. Data sources A computerized systematic search was performed in Medline and Embase from 1950 to 2010. After checking reference lists and field experts, all key journals were hand searched. Study selection After review of 1538 eligible citations, nine articles were included and critically appraised on methodological quality by two reviewers using the QUADAS criteria. Data extraction Data on age subgroups, type of CDRs, sensitivity, specificity, safety, efficiency and the prevalence of deep venous thrombosis (DVT) and pulmonary embolism (PE) were extracted. Data synthesis Although sensitivity and safety of the CDRs for VTE in elderly remained high, the specificity and efficiency decreased substantially in older age groups. Limitations A limited number of studies met our inclusion criteria. Possible referral bias due to inclusion of relatively high risk elderly patients. Conclusions This diagnostic review demonstrates an increase of prevalence of PE with age and a strong decrease of specificity and efficiency for CDRs of VTE in older patients. Moreover, due to referral bias the decrease in specificity in the elderly may even be underestimated. Although the safety of CDRs for VTE is high, adapting these rules for elderly is much needed to make them more efficient for aged patients.

Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three ‘standard’ cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician’s intention, (3) type of patient request, (4) patient’s life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician’s labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as ‘euthanasia/ending of life’ were the administration of muscle relaxants (99% of these cases were labelled as ‘euthanasia/ending of life’) or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as ‘euthanasia’ (87%) or ‘ending of life’ (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

Since 2008, (pre)pandemic vaccines against H5N1 influenza have been available and pandemic vaccines against new influenza H1N1 are currently produced In The Netherlands. the vaccination call for seasonal influenza among the recommended groups approximates 70% These statistics raise the question if adults in Western societies are willing to get a (pre)pandemic influenza vaccination, for example, against avian H5N1 or swine-like H1N1 virus A questionnaire was performed to determine the predictors of a negative intention to be immunized against pandemic influenza among adults Demographical. behavioural and organisational determinants were studied Thirty-four and five percent of the respondents were negatively intended to get a pandemic influenza vaccination in a pre-pandemic or pandemic phase, respectively. On the basis of six behavioural determinants negative intention to get a pandemic influenza vaccination can be predicted correctly in almost 80% of the target group These determinants should be targeted in pandemic preparedness plans (C) 2009 Elsevier Ltd All rights reserved.

Contains fulltext : 79833.pdf (Publisher’s version ) (Closed access) Although health care workers (HCWs) have been recommended to be immunized against influenza, vaccine uptake remains low. So far, research on determinants of influenza vaccination among HCWs has been limited by design, population or theoretical framework. Therefore we conducted a questionnaire study in Dutch nursing homes to assess which demographical, behavioural and organisational determinants were associated with influenza vaccine uptake among HCWs. We were able to accurately predict vaccine uptake based on a 13-item prediction model including two demographical, nine behavioural and two organisational determinants developed with data from 1,125 respondents (response rate 60%). To further increase influenza vaccine uptake, implementation programs should target these determinants.

In response to the paper by Keown and Jochemsen in which the latest empirical data concerning euthanasia and other end-of-life decisions in the Netherlands is discussed, this paper discusses three points. The use of euthanasia in cases in which palliative care was a viable alternative may be taken as proof of a slippery slope. However, it could also be interpreted as an indication of a shift towards more autonomy-based end-of-life decisions. The cases of non-voluntary euthanasia are a serious problem in the Netherlands and they are only rarely justifiable. However, they do not prove the existence of a slippery slope. Persuading the physician to bring euthanasia cases to the knowledge of the authorities is a problem of any euthanasia policy. The Dutch notification procedure has recently been changed to reduce the underreporting of cases. However, many questions remain.

Vaccination of health care workers (HCW) in long-term care results in indirect protection of patients who are at high-risk for influenza. The voluntary uptake of influenza vaccination among HCW is generally low. We argue that institutions caring for frail elderly have the responsibility to implement voluntary programmes for vaccination against influenza of HCW. When uptake falls short a mandatory programme may be justified. The main justification stems from the duty of care givers not to harm one's patient when one knows there is a significant risk of harm and the intervention to reduce this chance has a favourable balance of benefit over burdens and risks.

Introduction: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice. Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act. Results: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless (79%) and whether or not the patient’s request was voluntary or well considered (58%). Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians (oncologists, cardiologists, and nursing home physicians) and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld.

Objectives To determine the prevalence and analyze the content of guidelines for the use of do-not-resuscitate (DNR) orders in Dutch hospitals. Design Cross-sectional descriptive study. Measurements and main results A questionnaire was mailed to the directors of patient care at all 143 Dutch hospitals. Directors were asked whether their hospitals had guidelines for the use of DNR orders and to provide copies of the guidelines if they did. The content of the guidelines was analyzed with regard to basic assumptions about nonresuscitation, definitions, persons involved in decision-making, advance directives, starting discussions about nonresuscitation, notation, evaluation, and other aspects. Of the 143 hospital directors surveyed, 95% responded. Sixty percent of the hospitals had guidelines for the use of DNR orders and provided copies. The assumption "always resuscitate, unless" was mentioned in 66% of guidelines. In 93% it was stated that patients should be involved in decision-making about nonfutile resuscitation. In 38% it was stated that in principle, living wills were respected in cases of incompetence. The role of proxies was mainly to discuss decisions (58% of guidelines), not to make them. The most frequently mentioned moment for starting a discussion about nonresuscitation was the onset of clinical deterioration of the patient (41%). Conclusions It is promising that 60% of Dutch hospitals have developed guidelines for the use of DNR orders. However, current guidelines can be improved in many respects.

The use of do not resuscitate (DNR) orders in Dutch hospitals was studied as part of a nationwide study on medical decisions concerning the end of life. DNR decisions are made in 6 per cent of all admissions, and 61 per cent of all in-hospital deaths were preceded by a DNR decision. We found that in only 14 per cent of the cases had the patients been involved in the DNR decision (32 per cent of competent patients). The concept of futility is analysed as these findings are discussed. We conclude that determining the effectiveness of resuscitation is a medical judgement whereas determining the proportionality (burden/benefit ratio) of it requires a discussion between doctor and patient (or his or her surrogates). Since the respondents in the cases without patient involvement gave many reasons for their decision that went beyond determining effectiveness, we conclude that more patient involvement would have been desirable.

Background To foster responsible data sharing in health research, ethical governance complementary to the EU General Data Protection Regulation is necessary. A governance framework for Big Data-driven research platforms will at least need to consider the conditions as specified a priori for individual datasets. We aim to identify and analyze these conditions for the Innovative Medicines Initiative’s (IMI) BigData@Heart platform. Methods We performed a unique descriptive case study into the conditions for data sharing as specified for datasets participating in BigData@Heart. Principle investigators of 56 participating databases were contacted via e-mail with the request to send any kind of documentation that possibly specified the conditions for data sharing. Documents were qualitatively reviewed for conditions pertaining to data sharing and data access. Results Qualitative content analysis of 55 relevant documents revealed overlap on the conditions: (1) only to share health data for scientific research, (2) in anonymized/coded form, (3) after approval from a designated review committee, and while (4) observing all appropriate measures for data security and in compliance with the applicable laws and regulations. Conclusions Despite considerable overlap, prespecified conditions give rise to challenges for data sharing. At the same time, these challenges inform our thinking about the design of an ethical governance framework for data sharing platforms. We urge current data sharing initiatives to concentrate on: (1) the scope of the research questions that may be addressed, (2) how to deal with varying levels of de-identification, (3) determining when and how review committees should come into play, (4) align what policies and regulations mean by “data sharing” and (5) how to deal with datasets that have no system in place for data sharing.