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This study describes the characteristics of—and the counseling received by—counselees who passed away through self-ingesting self-collected lethal medication after receiving demedicalised assistance in suicide. We analyzed registration forms filled in by counselors working with Foundation De Einder about 273 counselees who passed away from 2011 to 2015. The majority of these counselees had a serious disease and physical or psychiatric suffering. Half of them had requested physician assistance in dying. This shows that patients with a denied request for physician assistance in dying can persist in their wish to end life. This also shows that not all people with an underlying medical disease request for physician assistance in dying. Physicians and psychiatrist are often uninvolved in these self-chosen deaths while they could have a valuable role in the process concerning assessing competency, diagnosing diseases, and offering (or referring for) treatment. [ABSTRACT FROM AUTHOR]

Background: To increase knowledge about options people have concerning end-of-life-care issues, General Practitioners (GPs) can organise meetings to inform their older patients. We evaluated these meetings, using the following research questions: How did the attendees experience the information meeting? Was there a rise in Advance Care Planning (ACP) behaviour after the information meeting? Was there a change in trust people have that physicians will provide good care at the end of life and that they will follow their end-of-life wishes after the information meetings? Methods: Four GPs invited all patients of 75 years and older registered in their GP practices to the meeting via a written letter. Four meetings of 2 h took place in 2016. Meetings started with a presentation on end-of-life topics and ACP by the GP followed by time for questions. A pre-post evaluation study was done using written questionnaires distributed and filled in at the start of the meeting (T0) at the end of the meeting (T1) and 6 months after the meeting (T2). Results: In total 225 older people attended a meeting of which 154 (68%) filled in the questionnaire at T0 and 145 (64%) filled in the questionnaire at T1. After six months, 90 of the 121 people who approved of being sent another questionnaire at T2, returned it (40%). The average age of the respondents was 80 years (T0). The meetings were evaluated positively by the attendees (T1). ACP issues (appointing a proxy, resuscitation, hospitalisation, euthanasia, treatment preferences under certain circumstances, preferred place of care and nursing home admittance) were discussed with a physician, a relative or both more often in the 6 months after having attended the meeting (T2), compared to before (T0). Compared to before the meeting (T0), trust in the GP providing good end-of-life care and following end-of-life wishes was higher immediately after the meeting (T1), but not after 6 months (T2). Conclusion: Information meetings on end-of-life care by GPs have a positive influence on the occurrence of ACP, both with the physician and others. Although, this method especially reaches the older people that are already interested in the subject, this seems a relatively easy way to stimulate ACP. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home (n = 163), hospital (n = 249), nursing home (n = 192), hospice (n = 89) or elsewhere (n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component. [ABSTRACT FROM AUTHOR]

Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.Practice Implications: The value of on-going communication about preferences between patients and caregivers is confirmed by our findings concerning differences in stability between treatments and the association between stability of preferences and life-events or quality of life. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support. [ABSTRACT FROM AUTHOR]

Background: PaTz (palliative care at home) is a method to improve palliative care in the primary care setting in the Netherlands. PaTz has three basic principles: (1) local GPs and DNs meet at least six times per year to identify and discuss their patients with a life-threatening illness; (2) these meetings are supervised by a specialist palliative care professional; (3) groups use a palliative care register on which all identified patients are listed. Since the start in 2010, the number of PaTz-groups in the Netherlands has been growing consistently. Although the theory of all PaTz-groups is the same, the practical functioning of PaTz-groups may vary substantially, which may complicate further implementation of PaTz as well as interpretation of effect studies. This study aims to describe the variation in practice of PaTz-groups in the Netherlands. Method: In this prospective observational study, ten PaTz-groups logged and described the activities in their meetings as well as the registered and discussed patients and topics of discussions in registration forms for a 1 year follow-up period. In addition, non-participatory observations were performed in all participating groups. Meeting and patient characteristics were analysed using descriptive statistics. Conventional content analysis was performed in the analysis of topic discussions. Results: While the basic principles of PaTz are found in almost every PaTz-group, there is considerable variation in the practice and content of the meetings of different PaTz-groups. Most groups spend little time on other topics than their patients, although the number of patients discussed in a single meeting varies considerably, as well as the time spent on an individual patient. Most registered patients were diagnosed with cancer and patient discussions mainly concerned current affairs and rarely concerned future issues. Conclusion: The basic principles are the cornerstone of any PaTz-group. At the same time, the observed variation between PaTz-groups indicates that tailoring a PaTz-group to the needs of its participants is important and may enhance its sustainability. The flexibility of PaTz-groups may also provide opportunity to modify the content and tools used, and improve identification of palliative patients and advance care planning. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, euthanasia or physician-assisted suicide (EAS) is allowed if due care criteria are met. One criterion is consultation of a second independent physician, often SCEN physicians. The public debate about EAS focuses on patients with psychiatric disorders, dementia, and tired of living, as complex cases. What complexities SCEN physicians perceive during consultation is unknown. This study aims to assess the frequency of EAS consultations that are perceived difficult by SCEN physicians, to explore what complexities are perceived by SCEN physicians during consultation, and to assess what characteristics are associated with difficult consultations. Methods: Data from 2015 to 2017 from an annual cross-sectional survey among SCEN physicians was used. In 2015, the survey focused on the most difficult consultation that year and in 2016/2017 on the most recent consultation. Frequencies of coded answers to an open-ended question were done to explore what complexities SCEN physicians perceived during their most difficult consultation. Univariable and multivariable logistic regression analyses were used to assess what characteristics were associated with difficult consultations. Results: 21.6% of cases consulted by SCEN physicians is perceived difficult. Complexities that SCEN physicians perceive were mainly in contact with patients (79.7%) and in the assessment of due care criteria (41.0%). Characteristics that were associated with a higher likelihood of a consultation being difficult are the attending physician being less certain to perform the EAS, patients staying in the hospital, main diagnosis heart failure/CVA, and accumulation of age-related health problems/psychiatry/dementia, and the presence of a psychiatric disorder, or psychosocial or existential problems besides the main diagnosis. Characteristics that were associated with a lower likelihood of a consultation being difficult are high patient's age and physical suffering as reason to request EAS. Conclusion: Complexities perceived by SCEN physicians in EAS consultations are not limited to the 'complex' cases present in the current public debate about EAS, e.g. patients with psychiatric disorders, dementia, and tired of living. Attention for these complexities in intervision could indicate if there is a need among SCEN physicians to enhance knowledge and skills in training and to receive specific support in intervision on these complexities. [ABSTRACT FROM AUTHOR]

Background: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide. Methods: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide. Results: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was ≥80 years, had a life-expectancy of ≥6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide. Conclusions: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria. [ABSTRACT FROM AUTHOR]

Context: Metastatic lung cancer is an incurable disease that results in a high burden of symptoms, a poor quality of life, and an expected prognosis of less than one year after diagnosis. Treatment shortly before death may result in potential burdensome and inappropriate hospital admissions and hospital deaths. Dying at home is, at a population level, considered a quality for good end-of-life care.Objectives: We examined what percentage of patients with metastatic lung cancer died inside the hospital and if hospital death, or other characteristics of the patient, oncologist or health care, were associated with treatment in the last month of life.Methods: This retrospective cohort study evaluated the medical records of 1322 patients with metastatic lung cancer who received care at one of 10 hospitals across The Netherlands and died between 1/6/2013 and 31/7/2015. Demographic and clinical characteristics were obtained from the medical records.Results: In total, 18% of the patients died during a hospital admission. This percentage was higher for patients who received chemotherapy (42%) or targeted therapy with tyrosine kinase inhibitors (25%) in the last month of life. Patients younger than 60 years of age, patients who received chemotherapy in the last month of life, and patients in whom tyrosine kinase inhibitors were started in the last month of life were more likely to die inside the hospital.Conclusion: In The Netherlands, fewer than one in five patients with metastatic lung cancer died in the hospital and in-hospital death was associated with the relatively late use of chemotherapy or targeted therapy. Careful selection of patients for disease-modifying therapy might enhance the opportunity for patients to die at their preferred place. [ABSTRACT FROM AUTHOR]

Background: Stating preferences about care beforehand using advance care planning and advance directives has become increasingly common in current medicine. There is still lack of clarity what happens over the course of time in relation to these preferences. We wanted to determine whether the preferences about end-of-life care of a person owning an advance directive stay stable after the experience of a life-event; how often advance directives are altered and discussed with family members and physicians over time. Design: A longitudinal cohort study with a population consisting of people owning the most common advance directives in the Netherlands, with a follow-up of 6-years from 2005 until 2011. Respondents were recruited using two associations that provided the advance directives, Right to Die-NL (n = 4463) and the Dutch Patient Organisation (n = 1263). Each 1.5 year a questionnaire was sent. We analyzed the relationship between variables using generalized estimated equations. Results: 96.9–98.1% of the respondents who had experienced a life-event had stable preferences. 89.9–93.7% of Right-to-Die-NL-members who had experienced a life-event didn’t make any alterations in their advance directives. During the 6-year course of our study, a minority of both groups didn’t discuss their advance directive with anyone (8.7–16.4%), while a majority didn’t discuss it with physicians (ranging 58.1–95.1%). Factors related to health, such as deterioration in experienced health, increased the odds to discuss advance directives. Conclusion: Our results largely dispute criticism concerning usability of advance directives due to lack of stability of preferences. Whereas a change in health status and the experience of other life-events were not related to instability in preferences, they did increase the odds of communication about advance directives. Because our results show that the possession of an advance directive does not necessarily result in frequent discussions between patients and caregivers, a more structured approach like advance care planning might be a solution. [ABSTRACT FROM AUTHOR]

Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. Methods: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. Results: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. Conclusions: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers. [ABSTRACT FROM AUTHOR]

Objectives To determine whether older people with advance directive for euthanasia ( ADEs) are stable in their advance desire for euthanasia in the last years of life, how frequently older people with an ADE eventually request euthanasia, and what factors determine this. Design Mortality follow-back study nested in a cohort study. Setting The Netherlands. Participants Proxies of deceased members of a cohort representative of Dutch older people (n = 168) and a cohort of people with advance directives (n = 154). Measurements Data from cohort members (possession of ADE) combined with after-death proxy information on cohort members' last 3 months of life. Multiple logistic regression analysis was performed on determinants of a euthanasia request in individuals with an ADE. Results Response rate was 65%. One hundred forty-two cohort members had an ADE at baseline. Three months before death, 87% remained stable in their desire for euthanasia; 47% eventually requested euthanasia (vs 6% without an ADE), and 16% died after euthanasia. People with an ADE were more likely to request euthanasia if they worried about loss of dignity. Conclusion The majority of older adults who complete an ADE will have a stable preference over time, but an advance desire for euthanasia does not necessarily result in a euthanasia request. Writing an ADE may reflect a person's need for reassurance that they can request euthanasia in the future. [ABSTRACT FROM AUTHOR]

Objective: This article examines how dementia affects personal dignity in individuals with mild to moderate dementia from their perspective. Method: In this qualitative cross-sectional study, in-depth interviews were carried out with 14 individuals, aged 50-94, with mild to moderate dementia who lived at home. Verbatim transcripts were analyzed making use of the principles of thematic analysis. Results: Although mild to moderate dementia resulted in a diminished sense of personal dignity, in general participants still felt reasonably dignified. The decline in personal dignity was generally caused by cognitive impairments resulting in diminished autonomy and changes to the individual's former identity. However, the intensity with which the decline in personal dignity was experienced depended to a large degree on the social context of the individual, with a marked difference between the private sphere of the home and the external, social environment. The study gives recommendations how others can help to sustain personal dignity in people with mild to moderate dementia. Conclusion: Given the considerable impact the social environment has on the personal dignity of people with mild to moderate dementia, it is important in caregiving not to confine attention to health-related or even any individual aspects alone, but also to take interpersonal aspects into consideration. [ABSTRACT FROM AUTHOR]

Background Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients’ sense of dignity during the progression of illness. Aim This longitudinal qualitative study investigates patients’ experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses). Method Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis. Results Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances. Conclusion While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignity. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Although many patients prefer to stay and die at home at the end of life, many are hospitalised. Little is known about how to avoid hospitalisations for patients living at home. Aim: To describe how hospitalisation at the end of life can be avoided, from the perspective of the GPs, nurses and family carers. Method: A qualitative design with face-to-face interviews was used. Taking 30 cases of patients who died non-suddenly, 26 GPs, 15 nurses and 18 family carers were interviewed in depth. Of the 30 patients, 20 were hospitalised and 10 were not hospitalised in the last three months of life. Results: Five key themes that could help avoid hospitalisation at the end of life emerged from the interviews. The key themes were: 1) marking the approach of death, and shifting the mindset; 2) being able to provide acute treatment and care at home; 3) anticipatory discussions and interventions to deal with expected severe problems; 4) guiding and monitoring the patient and family in a holistic way through the illness trajectory; 5) continuity of treatment and care at home. If these five key themes are adopted in an interrelated way, this could help avoid hospitalisations, according to GPs, nurses and family carers. Conclusions: The five key themes described in this study can be seen as strategies that could help in avoiding hospitalisation at the end of life. It is recommended that for all patients residing at home, GPs and community nurses work together as a team from the moment that it is marked that death is approaching up to the end of life. [ABSTRACT FROM AUTHOR]

The article discusses a study which aims to examine how to avoid hospitalizations in the last three months of life based on the insights of general practitioners in the Netherlands. The study conducted in-depth interviews among general practitioners after conducting a cross-sectional nationwide questionnaire study. Results show that 46% of the avoidable hospitalizations can be prevented by proactive patient communication while 28% by additional care at home.

The article presents a study aimed to describe and evaluate the end-of-life care for Dutch patients who died from cancer, organ failure and old age or dementia by general practitioners. The study was conducted through a cross-sectional and a retrospective within a sentinel network of general practitioners. The results of the study reveal the need to integrate palliative care accompanied by optimal disease management.

Abstract: 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 &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

Background: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients’ hospitalisation. This study aimed to explore family carers’ burden in the final three months of the patient’s life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation. Methods: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted. Results: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised. Conclusions: The different overall assessment of family carers’ burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers’ personal needs. [ABSTRACT FROM AUTHOR]

Background Patients who are cared for in long-term care facilities are vulnerable to lose personal dignity. An instrument measuring factors that influence dignity can be used to better target dignityconserving care to an individual patient, but no such instrument is yet available for the longterm care setting. The aim of this study was to create the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) and to assess its validity and intra-observer agreement. Methods Thirteen items specific for the LTC setting were added to the earlier developed, more general MIDAM. The MIDAM-LTC consisted of 39 symptoms or experiences for which presence as well as influence on dignity were asked, and a single item score for overall personal dignity. Questionnaires containing the MIDAM-LTC were administered face-to-face at two moments (with a 1-week interval) to 95 nursing home residents residing on general medical wards of six nursing homes in the Netherlands. Constructs related to dignity (WHO Well-Being Five Index, quality of life and physical health status) were also measured. Ten residents answered the questions while thinking aloud. Content validity, construct validity and intra-observer agreement were examined. Results Nine of the 39 items barely exerted influence on dignity. Eight of them could be omitted from the MIDAM-LTC, because the thinking aloud method revealed sensible explanations for their small influence on dignity. Residents reported that they missed no important items. Hypotheses to support construct validity, about the strength of correlations between on the one hand personal dignity and on the other hand well-being, quality of life or physical health status, were confirmed. On average, 83% of the scores given for each item's influence on dignity were practically consistent over 1 week, and more than 80% of the residents gave consistent scores for the single item score for overall dignity. Conclusion The MIDAM-LTC has good content validity, construct validity and intra-observer agreement. By omitting 8 items from the instrument, a good balance between comprehensiveness and feasibility is realised. The MIDAM-LTC allows researchers to examine the concept of dignity more closely in the LTC setting, and can assist caregivers in providing dignityconserving care. [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: Maintaining dignity is an important element of end-of-life care and also of the care given in nursing homes. Factors influencing personal dignity have been studied from both nursing home residents' and staff's perspective. Little is however known about the way nursing home staff perceive and promote the personal dignity of individual residents in daily practice, or about staff's experiences with preserving dignity within the nursing home. The aim of this study is to gain more insight in this. Methods: A qualitative descriptive interview study was designed, in which in-depth interviews were performed with 13 physicians and 15 nurses. They expressed their views on the personal dignity of 30 recently admitted nursing home residents on the general medical wards of four nursing homes in The Netherlands. Interviews were transcribed and analyzed following the principles of thematic analysis. Results: According to both physicians and nurses, physical impairment and being dependent on others threatened the residents' dignity. Whether or not this led to a violation of an individual resident's dignity, depended - in staff's opinion - on the resident's ability to show resilience and to keep his/her individuality. Staff mentioned treating residents with respect and taking care of their privacy as most important elements of dignity-conserving care and strived to treat the residents as they would like to be treated themselves. They could often mention aspects that were important for a particular resident's dignity. But, when asked what they could contribute to a particular resident's dignity, they often mentioned general aspects of dignity-conserving care, which could apply to most nursing home residents. By attempting to give dignity-conserving care, physicians and nurses often experienced conflicting values in daily care and barriers caused by the lack of resources. Conclusions: Tailoring dignity-conserving care to an individual nursing home resident appears hard to bring about in daily practice. Both attention to solve contextual barriers within the nursing home as well as more awareness of staff members for their own values, which they take as a reference point in treating residents, is needed to promote personal dignity in the nursing home setting. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

Background: While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity. Objective: To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients' dignity, and that is applicable to a wide patient population. Design: Qualitative interview study. Participants: 34 patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives. Method: In-depth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes. Results: We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients' dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others. Conclusions: The merits of the model are two-folded. First, it offers an organizing framework for further research into patients' dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted. [ABSTRACT FROM AUTHOR]

The article discusses the changes over a decade in the end-of-life care given to older adults during the last 3 months of life. The data was collected from the Longitudinal Aging Study Amsterdam in 2000 and concluded that older people had a reduced functional ability during the last 3 months of life in 2010 as compared to that in 2000. The study results indicate that older people who received formal or institutional care were less likely to die in hospital compared to those who stayed at home.

Abstract: Context: More people are surviving into old age, and chronic diseases tend to become more common with age. Ill health and disability can lead to concerns about loss of personal dignity. Objectives: To investigate whether health status affects the perceptions of factors influencing personal dignity at the end of life, and the relationship between those perceptions and sociodemographic characteristics. Methods: A subsample (n =2282) of a large advance directives cohort study was used. Three different health status groups (good, moderate, and poor) were defined based on the Euroqol-5D and a question on whether they had an illness. For each health status group, we calculated the percentage of respondents who indicated the extent to which the items of the Patient Dignity Inventory would influence their dignity as (very) large. Logistic regression analyses were used to investigate the associations between the perceptions of factors influencing personal dignity and sociodemographics. Results: The percentage of respondents who indicated the factors as having a (very) large influence on dignity at the end of life were not significantly different for the three health status groups, except for three physical items on symptoms, roles, and routines. Those items were significantly more influential on dignity for people with a poor health status. Gender, old age, having a partner, and having a belief or religion that is important to one''s life were associated with an understanding of factors influential to dignity. Conclusion: Health status seems only to affect the perceptions of physical factors maintaining dignity at the end of life. This might suggest that the understanding of dignity will not substantially change as health status changes and may support starting advance care planning early. [Copyright &y& Elsevier]

Abstract: 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 &y& Elsevier]

Background: Many patients are transferred from home to hospital during the final phase of life and the majority die in hospital. The aim of the study is to explore hospital referrals of palliative care patients for whom an out-of-hours general practitioner was called. Methods: A retrospective descriptive chart study was conducted covering a one-year period (1/Nov/2005 to 1/Nov/2006) in all eight out-of-hours GP co-operatives in the Amsterdam region (Netherlands). All symptoms, sociodemographic and medical characteristics were recorded in 529 charts for palliative care patients. Multivariate logistic regression analysis was performed to identify the variables associated with hospital referrals at the end of life. Results: In all, 13% of all palliative care patients for whom an out-of-hours general practitioner was called were referred to hospital. Palliative care patients with cancer (OR 5,1), cardiovascular problems (OR 8,3), digestive problems (OR 2,5) and endocrine, metabolic and nutritional (EMN) problems (OR 2,5) had a significantly higher chance of being referred. Patients receiving professional nursing care (OR 0,2) and patients for whom their own general practitioner had transferred information to the out-of-hours cooperative (OR 0,4) had a significantly lower chance of hospital referral. The most frequent reasons for hospital referral, as noted by the out-of-hours general practitioner, were digestive (30%), EMN (19%) and respiratory (17%) problems. Conclusion: Whilst acknowledging that an out-of-hours hospital referral can be the most desirable option in some situations, this study provides suggestions for avoiding undesirable hospital referrals by out-of-hours general practitioners at the end of life. These include anticipating digestive, EMN, respiratory and cardiovascular symptoms in palliative care patients. [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: Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands.Methods: Data were collected within the framework of an advance directives cohort study. This cohort study is aiming to get a better insight into how decisions are made at the end of life with regard to advance directives in the Netherlands. One half of the cohort (n = 2404) received an open-ended question concerning factors relevant to dignity. Content labels were assigned to issues mentioned in the responses to the open-ended question. The other half of the cohort (n = 2537) received a written questionnaire including the PDI. The relevance and comprehensiveness of the PDI items were assessed with the COSMIN checklist ('COnsensus-based Standards for the selection of health status Measurement INstruments').Results: The majority of the PDI items were found to be relevant for the construct to be measured, the study population, and the purpose of the study but the items were not completely comprehensive. The responses to the open-ended question indicated that communication and care-related aspects were also important for dignity.Conclusions: This study demonstrated that the PDI items were relevant for people with an advance directive in the Netherlands. The comprehensiveness of the items can be improved by including items concerning communication and care. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

Objectives: The aims of this study were to investigate: (1) opinions of medical students regarding quantity and content of education on end-of-life care in the curriculum, (2) medical students' knowledge of different aspects of the euthanasia act, and (3) factors associated with positive opinions about the quantity and content of education on end-of-life care in the curriculum. Methods: A total of 204 medical students received a questionnaire; 176 completed it (response rate, 86%). Results: Approximately half of the students (55%) considered the quantity of end-of-life care education in the curriculum moderate; 35% rated it as good. Half of the students rated the content of end-of-life care education as moderate (50%); 47% rated it as good. Fourteen percent of the students gave correct answers to 6 or 7 of the 8 questions about the euthanasia act. Students who took the elective course “Terminal and Palliative Care,” students who had experience with a patient requesting euthanasia and physician-assisted suicide in their personal lives, and students with more knowledge of the euthanasia act were more positive about the quantity of end-of-life care education. Students who completed fewer clerkships and totally agreed with the statement, “Everyone has the right to decide about their own life and death” were more positive about the content on end-of-life care education. Conclusions: The data of this study suggest that more attention can and should be paid to education on end-of-life care in the medical curriculum, so students are well prepared to provide adequate end-of-life care. [ABSTRACT FROM AUTHOR]

Dementia patients frequently die after a pneumonia or prolonged intake problems. Maintaining comfort is a goal of palliative care in end-stage dementia. To compare discomfort in dementia patients dying after a pneumonia with patients dying after intake problems, and to assess associations with treatment, we combined 2 Dutch prospective studies. We selected 559 pneumonia patients and 166 patients with intake problems who had no pneumonia. Discomfort was observed with the Discomfort Scale - Dementia of Alzheimer Type (DS-DAT). Linear regression was performed with the dependent DS-DAT levels shortly before death in 314 patients who died within 2 weeks. Compared with discomfort in patients with intake problems, unadjusted and adjusted discomfort in patients with pneumonia was higher both at t 0 and before death. In adjusted analyses, antibiotic treatment (mostly oral) was associated with less discomfort before death (beta -1.1, CI -2.2 - -0.03), while invasive rehydration (received by only 8 patients) was associated with more discomfort (beta 3.5, CI 0.6 - 6.3). Death from pneumonia may cause great suffering in dementia patients. If confirmed in a study with different case mix and treatments, antibiotics may be used to decrease discomfort even when death is imminent. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to legal euthanasia under specific circumstances in the Netherlands, known as advance euthanasia directives (AEDs).

Background While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated. Methods In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale–Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations. Results Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians’ observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep. Conclusions Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort. [ABSTRACT FROM AUTHOR]

Objectives: To determine the role and influence of participants in the decision making to start or forgo artificial nutrition and hydration (ANH) in demented nursing home patients.Methods: Participant observation by two researchers in two Dutch nursing homes.Results: The most common participants in the ANH decision making are the nursing home physician (NHP), family, and (most frequently attending) nurses. Both the process and outcome depend on the specific orientation of participants to the decision-making process, to starting or forgoing ANH and interactions between participants. The NHP has the greatest influence. Most NHPs try to achieve consensus among all participants, and emotions and feelings of the family play an important role in this respect.Discussion: The NHP seems to be the most obvious person to lead the ANH decision. It is important that participants are aware of the influence of emotions so that they can determine to what extent it is acceptable that personal feelings influence the final decision. [Copyright &y& Elsevier]

Provides information on a study that examined the frequency and circumstances of forgoing artificial administration of food and fluids in nursing homes. Methodology of the study; Results and discussion on the study.

Background: Spiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this. Method: Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding. Results: Spiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding.. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers' services. Also, structural funding for spiritual caregivers in the primary care setting should be organized. Conclusion: Spiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers' services. [ABSTRACT FROM AUTHOR]

Background: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes. Methods: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses. Results: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found. Conclusions: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers. [ABSTRACT FROM AUTHOR]

AbstractIn this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one’s own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents. [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]

Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001–2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Recently, euthanasia and assisted suicide (EAS) in patients with psychiatric disorders, dementia, or an accumulation of health problems has taken a prominent place in the public debate. However, limited is known about this practice. The purpose of this study was threefold: to estimate the frequency of requesting and receiving EAS among people with (also) a psychiatric disorder, dementia, or an accumulation of health problems; to explore reasons for physicians to grant or refuse a request; and to describe differences in characteristics, including the presence of psychiatric disorders, dementia, and accumulation of health problems, between patients who did and did not request EAS and between patients whose request was or was not granted.Methods: A nationwide cross-sectional survey study was performed. A stratified sample of death certificates of patients who died between 1 August and 1 December 2015 was drawn from the central death registry of Statistics Netherlands. Questionnaires were sent to the certifying physician (n = 9351, response 78%). Only deceased patients aged ≥ 17 years and who died a non-sudden death were included in the analyses (n = 5361).Results: The frequency of euthanasia requests among deceased people who died non-suddenly and with (also) a psychiatric disorder (11.4%), dementia (2.1%), or an accumulation of health problems (8.0%) varied. Factors positively associated with requesting euthanasia were age (< 80 years), ethnicity (Dutch/Western), cause of death (cancer), attending physician (general practitioner), and involvement of a pain specialist or psychiatrist. Cause of death (neurological disorders, another cause) and attending physician (general practitioner) were also positively associated with receiving euthanasia. Psychiatric disorders, dementia, and/or an accumulation of health problems were negatively associated with both requesting and receiving euthanasia.Conclusions: EAS in deceased patients with psychiatric disorders, dementia, and/or an accumulation of health problems is relatively rare. Partly, this can be explained by the belief that the due care criteria cannot be met. Another explanation is that patients with these conditions are less likely to request EAS. [ABSTRACT FROM AUTHOR]