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Aims: In hospital settings, decisions about potentially life-prolonging treatments are often made in a dialogue between a patient and their physician, with a focus on active treatment. Nurses can have a valuable contribution in this process, but it seems they are not always involved. Our aim was to explore how hospital nurses perceive their current role and preferred role in shared decision-making about potentially life-prolonging treatment in patients in the last phase of life., Design: Cross-sectional quantitative study conducted in the Netherlands in April and May 2019., Methods: An online survey, using a questionnaire consisting of 12 statements on nurses' opinion about supporting patients in decisions about potentially life-prolonging treatments, and 13 statements on nurses' actual involvement in these decisions., Results: In total 179 hospital nurses from multiple institutions who care for adult patients in the last phase of life responded. Nurses agreed that they should have a role in shared decision-making about potentially life-prolonging treatments, indicating greatest agreement with 'It is my task to speak up for my patient' and 'It is important that my role in supporting patients is clear'. However, nurses also said that in practice they were often not involved in shared decision-making, with least involvement in 'active participation in communication about treatment decisions' and 'supporting a patient with the decision'., Conclusion: There is a discrepancy between nurses' preferred role in decision-making about potentially life-prolonging treatment and their actual role. More effort is needed to increase nurses' involvement., Impact: Nurses' contribution to decision-making is increasingly considered to be valuable by the nurses themselves, physicians and patients, though involvement is still not common. Future research should focus on strategies, such as training programs, that empower nurses to take an active role in decision-making., (© 2022 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background: Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients., Methods: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed., Results: Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient's suffering is unbearable and without prospect and whether the request is well-considered., Conclusion: The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria.

Background: The medical-ethical dilemmas related to euthanasia and physician-assisted suicide (EAS) in psychiatric patients are highly relevant in an international context. EAS in psychiatric patients appears to become more frequent in the Netherlands. However, little is known about the experiences of psychiatrists with this practice. This study aims to estimate the incidence of EAS (requests) in psychiatric practice in The Netherlands and to describe the characteristics of psychiatric patients requesting EAS, the decision-making process and outcomes of these requests., Methods: In the context of the third evaluation of the Dutch Euthanasia Act, a cross-sectional study was performed between May and September 2016. A questionnaire was sent to a random sample of 500 Dutch psychiatrists. Of the 425 eligible psychiatrists 49% responded. Frequencies of EAS and EAS requests were estimated. Detailed information was asked about the most recent case in which psychiatrists granted and/or refused an EAS request, if any., Results: The total number of psychiatric patients explicitly requesting for EAS was estimated to be between 1100 and 1150 for all psychiatrists in a one year period from 2015 to 2016. An estimated 60 to 70 patients received EAS in this period. Nine psychiatrists described a case in which they granted an EAS request from a psychiatric patient. Five of these nine patients had a mood disorder. Three patients had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'suffering without prospect of improvement'. Sixty-six psychiatrists described a case in which they refused an EAS request. 59% of these patients had a personality disorder and 19% had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'desperate situations in several areas of life'. Most requests were refused because the due care criteria were not met., Conclusions: Although the incidence of EAS in psychiatric patients increased over the past two decades, this practice remains relatively rare. This is probably due to the complexity of assessing the due care criteria in case of psychiatric suffering. Training and support may enable psychiatrists to address this sensitive issue in their work better.

Background: In the Netherlands, people can receive (limited) demedicalised assistance in suicide (DAS)-an option less well known than physician-assisted dying (PAD)., Aim: This study explores which trajectories people take to seek DAS, through open-coding and inductive analysis of in-depth interviews with 17 people who receive(d) DAS from counsellors facilitated by foundation De Einder., Results: People sought DAS as a result of current suffering or as a result of anticipating possible prospective suffering. People with current suffering were unable or assumed they would be unable to obtain PAD. For people anticipating possible prospective suffering, we distinguished two trajectories. In one trajectory, people preferred PAD but were not reassured of help by the physician in due time and sought DAS as a backup plan. In the other trajectory, people expressed a preference for DAS mainly as a result of emphasising self-determination, independence, taking their own responsibility and preparing suicide carefully. In all trajectories, dissatisfaction with physician-patient communication-for instance about (a denied request for) PAD or fearing to discuss this-influenced the decision to seek DAS., Conclusions: While PAD is the preferred option of people in two trajectories, obtaining PAD is uncertain and not always possible. Dissatisfaction with physician-patient communication can result in the physician not being involved in DAS, being unable to diagnose diseases and offer treatment nor offer reassurance that people seem to seek. We plea for more mutual understanding, respect and empathy for the limitations and possibilities of the position of the physician and the patient in discussing assistance in dying., Competing Interests: Competing interests: MH received an imbursement of expenses in 2015 (amount €150) for analysing the data for the annual report 2014 of Foundation De Einder., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Background: Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care., Objective: To examine whether and how the steps of SDM can be recognized in decision making about second- and third-line chemotherapy., Methods: Fourteen advanced cancer patients were followed over time using face-to-face in-depth interviews and observations of the patients' out-clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding., Results: Patients were satisfied with the decision-making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy., Conclusion: To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened., (© 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.)

Background: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment., Methods: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently., Results: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want., Conclusion: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients., (©AlphaMed Press.)

Background: We studied preferences on continuing or forgoing different types of treatments at the end of life in two groups: the general public and people with an advance directive (AD). Furthermore, we studied factors associated with these preferences and whether people's preferences concurred with the content of their AD., Methods: A representative sample of the Dutch population (n=1402) and a cohort of people who own an AD, consisting of members of Right to Die-NL (NVVE, n=5661) and the Christian-orientated Nederlandse Patiënten Vereniging (NPV, n=1059), answered written questionnaires in 2005 or 2007. We used two hypothetical scenarios, about cancer and dementia, and asked questions about continuing or forgoing four medical treatments., Results: A majority of the Dutch public (62-87%) and NVVE members (88-99%) wanted to forgo the different treatments in both scenarios, while members of the NPV generally wanted to continue treatment (46-73%). In all three groups, in both scenarios, a substantial group (13-38%) had different preferences for the different treatments. People were more explicit in their preferences in case of dementia than in case of cancer. Being female, over 55 years of age, having had a higher education and having no (significant) religion increased the odds to refuse treatment. ADs that gave the direction to refuse treatment generally concurred with the preference of their owners (85-98% wanting to refuse treatments)., Discussion: The fact that people with and without ADs have different preferences concerning different treatments and diseases stresses the importance of communication surrounding decision making at the end of life., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Purpose: Patients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life., Methods: 28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed., Results: All patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important., Conclusion: Patients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.

Objective: What are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?, Methods: Written questionnaires were sent to a cohort of people owning different types of ADs (n=5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n=29)., Results: About half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14-16%). Most respondents communicated about having an AD with close-ones (63-88%) and with their GP (65-79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift., Conclusion: ADs can give directions to caregivers about what people want at the end of life., Practice Implications: ADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Background: Patients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients' preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence., Methods: A systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples., Results: Mean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients., Conclusion: This review suggests that a similar approach to all patients is not likely to meet patients' wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients' participation wishes on a regular basis during their illness trajectory.

Background: Educational attainment has been shown to influence access to and quality of health care. However, the influence of educational attainment on decision-making at the end of life with possible or certain life-shortening effect (ELDs ie intensified pain and symptom alleviation, non-treatment decisions, euthanasia/physician-assisted suicide, and life-ending acts without explicit request) is scarcely studied. This paper examines differences between educational groups pertaining to prevalence of ELDs, the decision-making process and end-of-life treatment characteristics., Method: We performed a retrospective survey among physicians certifying a large representative sample of Belgian deaths in 2007. Differences between educational groups were adjusted for relevant confounders (age, sex, cause of death and marital status)., Results: Intensified pain and symptom alleviation and non-treatment decisions are more likely to occur in higher educated than in lower educated patients. These decisions were less likely to be discussed with either patient or family, or with colleague physicians, in lower educated patients. A positive association between education and prevalence of euthanasia/assisted suicide (acts as well as requests) disappeared when adjusting for cause of death. No differences between educational groups were found in the treatment goal in the last week, but higher educated patients were more likely to receive opioids in the last day of life., Conclusion: There are some important differences and possible inequities between educational groups in end-of-life decision-making in Belgium. Future research should investigate whether the found differences reflect differences in knowledge of and adherence to patient preferences, and indicate a discrepancy in quality of the end of life.

Objective: Obtaining in-depth information from both patient and physician perspectives about what happens after a request for euthanasia or physician-assisted suicide (EAS) is refused., Methods: In-depth interviews with nine patients whose EAS request was refused and seven physicians of these patients, and with three relatives of patients who had died after a request was refused and four physicians of these patients. Interviews were conducted at least 6 months after the refusal., Results: A wish to die remained in all patients after refusal, although it sometimes diminished. In most cases patient and physician stopped discussing this wish, and none of the physicians had discussed plans for the future with the patient or evaluated the patient's situation after their refusal. Physicians were aware of patients' continued wish to die., Conclusions: Patients who are refused EAS may subsequently be silent about a wish to die without abandoning it. Open communication about wishes to die is important, even outside the context of EAS, because if people feel unable to talk about them, their quality of life may be further diminished., Practice Implications: Follow up appointments after refusal could give patients the opportunity to discuss their feelings and physicians to support them., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Purpose: Because of cancer's high symptom burden and specific disease course, patients with cancer are more likely than other patients to face end-of-life decisions that have possible or certain life-shortening effects (ELDs). This study examines the incidence of ELDs in patients with cancer compared with patients without cancer and the trends in ELD incidence from 1998-2007., Patients and Methods: A nationwide death certificate study in Flanders, Belgium, was conducted in 2007, analogous to one completed in 1998. Physicians who had signed selected death certificates (n = 6,927) were sent a questionnaire., Results: The response rate was 58.4%. Nonsudden deaths were studied. Intensified symptom alleviation occurred more in patients with cancer than in those without (53.8% v 31.7%; P < .001) as did euthanasia (6.8% v 0.9%; P < .001). There was no difference between groups in nontreatment decisions and life-ending acts without patient's explicit request. Patients with cancer were less involved in the end-of-life decision-making process than patients without cancer (69.7% v 83.5%; P = .001). From 1998 to 2007, ELD incidence has increased in patients with cancer (+6.7%) and even more in patients without cancer (+14.9%) because of an increase in intensified symptom alleviation. In patients with cancer, euthanasia rates increased strongly and life-ending acts without the patient's explicit request decreased., Conclusion: The higher ELD incidence in patients with cancer compared with those without is probably related to differences in disease trajectories and access to end-of-life care. During the period from 1998 to 2007, when euthanasia was legalized and palliative care intensified, overall ELDs increased, including those as a result of symptom alleviation and euthanasia, with a decrease in life-ending acts without explicit request.

Background: During the disease course of high-grade glioma (HGG) patients, the goal of therapy eventually shifts from primarily life-prolongation to primarily sustaining the quality of life as good as possible. End-of-life care is aimed at prolongation of life with good quality, but inevitably also may require medical decisions for prevention and relief of suffering with a potential life shortening effect. Few data are available on this end-of-life decision (ELD) making process in HGG patients, with decreased consciousness, confusion or cognitive deficits preventing them to participate. In this study the ELD-making process in HGG patients is described., Methods: Physicians and relatives of a cohort of 155 deceased HGG patients were identified to fill in a questionnaire regarding the end-of-life conditions (patients' ELD preferences, patients' competence) and ELD-making (forgoing treatment and the administration of drugs with a potential life-shortening effect) for their patient or relative. Data were analysed with descriptive statistics., Findings: Of 101 patients, physicians completed surveys including questions about ELDs (62% response rate). More than half of the patients relatively early became incompetent to make decisions due to delirium, cognitive deficits and/or decreasing consciousness. In 40% of patients the physician did not discuss ELD preferences with his/her patient. At least one ELD was made in 72% of patients, most often this comprised the withdrawal of dexamethasone. Palliative sedation was performed in 30% of patients and physician assisted death in 7%., Interpretation: ELDs are common practises amongst HGG patients, although their preferences towards ELDs are frequently unknown to the physician. Because the majority of patients become incompetent towards death, participation in ELD-making is only possible with advanced care planning. Hence, timely discussion of ELD preferences is encouraged., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: To describe awareness, use and supportiveness for physicians of three practice guidelines on medical end-of-life decisions, and to identify factors associated with increased awareness of these guidelines., Methods: Questionnaires were sent to 793 physicians from 12 hospitals in 2005 (response 52%)., Results: Most physicians were aware of the existence of the practice guidelines for euthanasia (75%) and do-not-resuscitate decisions (63%), and 35% were aware of the existence of the guidelines for palliative sedation. Physicians who had read the guidelines and had been in a situation in which they had to consider a euthanasia request, 88% had used the guidelines for euthanasia; corresponding figures are 92% for do-not-resuscitate and 100% for palliative sedation. When used, almost all physicians felt the guideline had been supportive. More positive attitudes towards guidelines and involvement in guideline development were associated with increased awareness of the presence of guidelines., Conclusion: It appears that practice guidelines on medical end-of-life decisions are useful for physicians: when they are aware of the presence of such guidelines in their institution, they gain support when using them., Practice Implications: Health care institutions should be encouraged to disseminate guidelines among caregivers, and also involve them in the development of the guidelines., (Copyright 2009 Elsevier Ireland Ltd. All rights reserved.)

Background: ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life., Methods/design: The study has mixed methods: it's longitudinal, consisting of a quantitative cohort-study which provides a framework for predominantly qualitative sub-studies. The members of the cohort are persons owning an AD, recruited through two Dutch associations who provide the most common standard ADs in the Netherlands, the NVVE (Right to Die-NL), of which 5561 members participate, and the NPV (Dutch Patient Organisation), of which 1263 members participate. Both groups were compared to a sample of the Dutch general public. NVVE-respondents are more often single, higher educated and non-religious, while amongst NPV-respondents there are more Protestants compared to the Dutch public. They are sent a questionnaire every 1,5 year with a follow-up of at least 7,5 years. The response rate after the second round was 88% respectively 90% for the NVVE and NPV. Participants were asked if we were allowed to approach close-ones after their possible death in the future. In this way we can get insight in the actual use of ADs at the end of life, also by comparing our data to that from the Longitudinal Aging Study Amsterdam, whose respondents generally do not have an AD., Discussion: The cohort is representative for people with an AD as is required to study the main research questions. The longitudinal nature of the study as well as the use of qualitative methods makes it has a broad scope, focusing on the whole course of decision-making involving ADs. It is possible to compare the end of life between patients with and without an AD with the use of data from another cohort.

Objective: In the Netherlands the law states that physicians are allowed to grant a request for euthanasia or physician-assisted suicide (EAS) if specific criteria for due care are met. This study investigated which sources physicians use to determine whether three of these criteria (unbearable and hopeless suffering, and no realistic alternatives for treatment) are met., Methods: The data were collected for the project Support and Consultation on Euthanasia in the Netherlands. General practitioners (GPs) received a written questionnaire concerning the most recent request for EAS that they had received. Of the 3614 (60%) GPs who returned the questionnaire, 1681 described the most recent request for EAS., Results: The study shows that physicians used different types of sources, and more than one source, to determine whether the criteria were met. More sources were used when the criteria were met or when a request resulted in EAS. The determination of every criterion required a different approach, but for all criteria discussions with colleagues were important., Conclusions: Using less sources when a criterion is not met could possibly lead to less extensive consideration of the criteria, and therefore to assessing too easily that the request does not meet the criteria for due care.

Objective: For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties., Methods: Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia., Results: In general, physicians, nurses and relatives agree on many aspects of end-of-life decision-making for nursing home patients with dementia. However, on some issues the outcomes of the decision-making may differ. Relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death., Conclusion: Although physicians, nurses and relatives are all guided by the best interest of the patient, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions., Practice Implications: Physicians should discuss end-of-life decisions more openly. Physicians should be aware of the influences on attitudes and incorporate them into communication about end-of-life decisions.

Objective: The purpose of this study is to investigate the characteristics of patients for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of the ANH decision-making process. We conducted an observational study with the use of written questionnaires. For 178 nursing home patients with dementia, the treating nursing home physician (NHP), a family member, and a nurse filled out a questionnaire directly after the decision was made to forgo ANH., Results: We found that most patients had severe dementia and two thirds had an acute illness. Advance care planning had taken place in 68% of the cases. In two thirds of the cases, the primary aim in forgoing ANH was to avoid unnecessary prolongation of life; and nurses seemed to have less influence on the decision-making process than NHPs and family members. Almost all respondents evaluated the decision-making process as "good" or "adequate." Dissatisfaction was felt when the decision had to be made under the pressure of time constraint., Conclusions: On the basis of these results, we recommend that discussions that include NHPs, family members, and nurses concerning decisions about possible future situations be held on a regular basis. This will form the basis for the difficult ANH decision and will probably reduce the pressure of time constraint.

Background Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. Methods A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. Results A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient's "best interests" and wishes are guaranteed. Several methods are available that may help to enhance patients' consent capacity. Conclusions Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients' consent capacity, and alternative procedures, including surrogate consent. [ABSTRACT FROM AUTHOR]

BACKGROUND/OBJECTIVES To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia. DESIGN A cross‐sectional survey. SETTING The Netherlands. PARTICIPANTS Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]). MEASUREMENTS The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia. RESULTS: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable. CONCLUSION: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner. J Am Geriatr Soc 68:2319–2328, 2020. [ABSTRACT FROM AUTHOR]

Background: It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation.Methods: A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted.Results: All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information.Conclusion: This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step. [ABSTRACT FROM AUTHOR]

Aim To gain insight in the way nursing home residents experience personal dignity and the factors that preserve or undermine it. Background Nursing home residents are exposed to diverse factors which may be associated with the loss of personal dignity. To help them maintain their dignity, it is important to investigate this concept from the residents' perspective. Design A qualitative descriptive study. Methods In-depth interviews were conducted between May 2010-June 2011 with 30 recently admitted residents of the general medical wards of four nursing homes in The Netherlands. Results Illness-related conditions were the starting point of a process which could affect personal dignity, by threatening aspects of one's individual self and social world. Living in a nursing home was not a reason in itself to feel less self-worth, but rather seen as a consequence of functional incapacity. Nevertheless, many residents felt discarded by society and not taken seriously, simply because of their age or illness. Waiting for help, being dictated to by nurses and not receiving enough attention could undermine personal dignity, whereas aspects of good professional care (e.g. being treated with respect), a supportive social network and adequate coping capacities could protect it. Conclusions Contrary to the general view in society that living in a nursing home always undermines one's dignity, good professional care and a supportive social network can preserve dignity as well. To support residents in their challenge of maintaining dignity, nursing home staff, relatives and society should pay more attention to the way they treat them. [ABSTRACT FROM AUTHOR]

Objectives To compare actual treatments with preferences for starting or forgoing treatment of older adults at the end of life. Design Mortality follow-back study of relatives of deceased older adults. Preferences and actual treatment were studied for each of four treatments: starting or forgoing resuscitation (do not resuscitate), artificial nutrition and hydration ( ANH), antibiotics, and artificial respiration. Setting Older adults in the Netherlands. Participants Proxies of deceased members (in 2006-2009) of two cohorts representative of the older Dutch population (n = 168) and of people with an advance directive (n = 184). Measurements Relationship between preferred and actual treatment. Results In most individuals who preferred receiving treatment, this preference was followed (n = 2/2, resuscitation; 23/26, ANH; 33/38, antibiotics; 23/24, AR). In approximately half of the individuals who preferred that a treatment be forgone, the preference was followed (n = 6/13, resuscitation; 11/18, ANH; 3/5, antibiotics), except for artificial respiration (n = 1/8). The majority of people for whom no preference was known received treatment (n = 5/9, resuscitation; 19/33, ANH; 15/20, antibiotics; 8/13, artificial respiration). People with a known preference for receiving a specific treatment had a seven times higher chance of preference being followed than people with a known preference for forgoing that treatment. People with a known preference for forgoing a treatment had a six times higher chance of treatment being forgone than people having no known preference. Conclusion Although concordance between preferred and actual treatment is high in older adults who prefer treatment and lower in people who prefer no treatment, making preferences for forgoing treatment known is useful because it increases the chance of treatments being forgone in those who wish so. [ABSTRACT FROM AUTHOR]

Background: Limited decision-making capacity (DMC) of older people affects their abilities to communicate about their preferences regarding end-of-life care. In an advance directive (AD) people can write down preferences for (non)treatment or appoint a proxy as a representative in (non)treatment choices in case of limited DMC. The aim is to study limited DMC during the end of life and compare the background, (satisfaction with) care and communication characteristics of people with and without limited DMC. Furthermore, the aim is to describe patient proxies' opinions about experiences with the use of (appointed proxy) ADs. Methods: Using a questionnaire, data were collected from proxies of participants of a representative sample of the Longitudinal Aging Study Amsterdam (n=168) and a purposive sample of the Advance Directive cohort study (n=184). Differences between groups (with and without limited DMC, and/or with and without AD) were tested with chi-square tests, using a level of significance of p < 0.05. Results: At a month before death 27% of people had limited DMC; this increased to 67% of people having limited DMC in the last week of life. The care received was in accordance with the patient's preferences for the majority of older people, although less often for people who had limited DMC for more than a week. The majority of the proxies were satisfied with the communication between physician and the patient and them, regardless of DMC of the patient. Of people with an AD, a small majority of relatives indicated that the AD had been of additional value. Finally, no differences were found in the role of the relative and the satisfaction with this role between people with and without a proxy AD. Conclusions: Although relatives have positive experiences with ADs, our study does not provide strong evidence that (proxy) ADs are very influential in the last phase of life. They can best be seen as a tool for advance care planning. [ABSTRACT FROM AUTHOR]

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

Background and aims: In many patients with dementia, the oral intake of fluids and nutrients becomes insufficient and a decision has to be made whether to start artificial nutrition or hydration (ANH). This study examines the incidence of ANH in nursing-home patients with dementia in the Netherlands, the methods of administration used, patient characteristics, and the characteristics of the ANH decision-making process. Methods: In June 2001, a postal questionnaire was sent to all nursing-home physicians (NHPs) (n=1054) in the Netherlands. The response rate was 77%. Results: Of the NHPs, 39% had started ANH during the l-year study period, mostly by hypodermodysis. As calculated from the total number of patients in the Netherlands, the incidence density for ANH in demented nursing-home patients was 3.4 per 100 patient-years. The most important considerations in taking this decision were the patient's physical condition, the expected result of rehydration, and the (presumed) wishes of the patient. Decisions to start hydration resembled decisions to start nutrition, but more frequently concerned incompetent patients with an intercurrent infectious disease. Conclusions: Compared with the USA literature, ANN is practised less in the Netherlands. This practice conforms to the prevailing treatment policy endorsed by the Dutch Association of Nursing-Home Physicians. In starting nutrition and/or hydration, an agreement about the (limited) duration of ANH is generally made, and the NHPs generally involve relatives and nurses in the decision-making process. Almost always, all parties involved agreed with decisions taken. [ABSTRACT FROM AUTHOR]

Context: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE).Objectives: First, to describe the prevalence of ACP with health care providers or written directives ("formal engagement in ACP") and ACP with loved-ones ("informal engagement in ACP") among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP.Methods: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015-2016. Participants (n = 1585) were aged ≥ 57 years.Results: Median age was 69.4 years (IQR: 64.1-76.7), and median SRLE 25.9 years (17.7-36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93-1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93-0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP.Conclusion: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP. [ABSTRACT FROM AUTHOR]

Abstract: Context: There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant. Objectives: To investigate 1) whether and how palliative treatment alternatives come up during or preceding euthanasia consultations and 2) how the availability of possible palliative treatment alternatives are assessed by the independent consultant. Methods: We interviewed 14 euthanasia consultants and 12 physicians who had requested a euthanasia consultation. We transcribed and analyzed the interviews and held consensus meetings about the interpretation. Results: Treating physicians generally discuss the whole range of treatment options with the patient before the euthanasia consultation. Consultants actively start thinking about and proposing palliative treatment alternatives after consultations, when they have concluded that the criteria for careful practice have not been met. During the consultation, they take into account various aspects while assessing the criterion concerning the availability of reasonable alternatives, and they clearly distinguish between euthanasia and continuous deep sedation. Most consultants said that it was necessary to verify which forms of palliative care had previously been discussed. Advice concerning palliative care seemed to be related to the timing of the consultation (“early” or “late”). Euthanasia consultants were sometimes unsure whether or not to advise about palliative care, considering it not their task or inappropriate in view of the previous discussions. Conclusion: Two different roles of a euthanasia consultant were identified: a limited one, restricted to the evaluation of the criteria for careful practice, and a broad one, extended to actively providing advice about palliative care. Further medical and ethical debate is needed to determine consultants’ most appropriate role. [Copyright &y& Elsevier]