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Objectives: We explored characteristics of people with an accumulation of health problems related to old age requesting euthanasia or physician-assisted suicide (EAS) and identified characteristics associated with granting EAS requests.Methods: We conducted a cross-sectional questionnaire study among Dutch physicians on characteristics of these people requesting EAS (n = 123). Associations between characteristics and granting a request were assessed using logistic regression analyses.Results: People requesting EAS were predominantly >80 years old (82.4%), female (70.0%), widow/widower (71.7%), (partially) care-dependent (76.7%), and had a life expectancy >12 months (68.6%). The most prevalent health problems were osteoarthritis (70.4%) and impaired vision and hearing (53.0% and 40.9%). The most cited reasons to request EAS were physical deterioration (68.6%) and dependence (61.2%). 44.7% of requests were granted. Granting a request was positively associated with care dependence, disability/immobility, impaired vision, osteoporosis, loss of control, suffering without prospect of improvement and a treatment relationship with the physician >12 months.Conclusion: Enhanced understanding of people with an accumulation of health problems related to old age requesting EAS can contribute to the ongoing debate on the permissibility of EAS in people without life-threatening conditions.

Abstract Background COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples’ desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic. Methods Data of two ancillary data collections of the Longitudinal Aging Study Amsterdam were used: the LASA 75 PLUS study and the LASA COVID-19 study. The latter provided cross sectional data (during COVID-19; n = 428) and longitudinal data came from participants in both studies (before and during COVID-19; n = 219). Results Most older adults had thought about ACP topics during COVID-19 (76,4%), and a minority had also discussed ACP topics with a physician (20.3%). Thinking about ACP topics increased during COVID-19 compared to before COVID-19 in a sample with measurements on both timeframes (82,5% vs 68,0%). Not thinking about ACP topics decreased in the first months of the COVID-pandemic compared to before COVID-19 for all ACP topics together (68.0% vs 82.2%) and each topic separately (hospital 42.0% vs 63.9%; nursing home 36.5% vs 53.3%; treatment options 47.0% vs 62.1%; resuscitation 53.0% vs 70.7%). Conclusions Older people do think about ACP topics, which is an important first step in ACP, and this has increased during COVID-19. However, discussing ACP topics with a physician is still not that common. General practitioners could therefore take the initiative in broaching the subject of ACP. This can for instance be done by organizing information meetings.

Abstract Background Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time. Methods Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups. Results It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view o n the trajectory in hindsight proved to be important overarching themes. Conclusions Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.

Abstract Background During the first peak of the COVID-19 pandemic in the Netherlands, relatives of patients with COVID-19 admitted to Intensive Care Units (ICUs) were severely restricted in visiting their relatives and in communicating with treating physicians. Family communication is a core element of critical care, however, this pandemic forced medical ICU staff to arrange alternative family support for instance by Family Support Teams (FSTs), consisting of non-ICU affiliated staff who telephonically contacted relatives. This study aims to examine relatives’ experiences with FSTs on two ICUs of a Dutch university medical centre, and to evaluate its working strategies. . Methods In a semi-structured interview study, relatives of patients with COVID-19 admitted to ICU’s, who had been supported by the FSTs, were sampled purposively. Twenty-one interviews were conducted telephonically by three researchers. All interviews were topic list guided and audio-recorded. Data was analysed thematically. Results All participants indicated they went through a rough time. Almost all evaluated the FSTs positively. Four major themes were identified. First, three important pillars of the FSTs were providing relatives with transparency about the patients’ situation, providing attention to relatives’ well-being, and providing predictability and certainty by calling on a daily basis in a period characterised by insecurity. Second, relatives appeared to fulfil their information needs by calls of the FSTs, but also by calling the attending ICU nurse. Information provided by the FSTs was associated with details and reliability, information provided by nurses was associated with the patient’s daily care. Third, being a primary family contact was generally experienced as both valuable and as an emotional burden. Last, participants missed proper aftercare. Family support often stopped directly after the patient died or had left the ICU. Relatives expressed a need for extended support after that moment since they had strong emotions after discharge or death of the patient. Conclusions Family support in times of the extreme COVID-19 situation is important, as relatives are restricted in communication and have a strong need for information and support. Relatives feel encouraged by structure, frequency, support and understanding by FSTs. However, remote family support should be tailored to the needs of relatives. A fixed contact person on de ICU and video calling might be good extra options for family support, also in future post COVID-19 care, but cannot replace physical visits.

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

Abstract 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 Background Literature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. Aim (1) Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; (2) explore which factors within domains of vulnerability (physical, cognitive, social and psychological) are associated with a current wish to die; (3) assess how many middle-aged and older adults with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems. Methods Data of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study (1563 Dutch middle-aged and older adults aged between 57 and 99 years), obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems. Results N = 62 participants (4.0%) had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear. Conclusion A small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish to die is multi-faceted. There is still a need for more knowledge, such as insight in to what extent suffering stemming from the medical classifiable disease contributes to the development of the wish to die.

Abstract Background Lung cancer has a high impact on both patients and relatives due to the high disease burden and short life expectancy. Previous studies looked into treatment goals patients have before starting a systemic treatment. However, studies on relatives’ perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one. Methods We conducted a structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals, between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment as part of usual care (chemotherapy, immunotherapy or targeted therapy with tyrosine kinase inhibitors (TKIs) and who completed a questionnaire on their treatment goals before the start of treatment and when treatment was finished. We asked the relatives about the achievement of patients’ treatment goals and relatives’ satisfaction with the choice to start treatment. This study is part of a larger study in which 266 patients with metastatic lung cancer participated who started a systemic treatment and reported their treatment goals before start of the treatment and the achievement of these goals after the treatment. Results Relatives reported the goals ‘quality of life’, ‘decrease tumour size’ and ‘life prolongation’ as achieved in 21, 37 and 41% respectively. The majority of the relatives (78%) were satisfied with the choice to start a treatment and even when none of the goals were achieved, 70% of the relatives were satisfied. About 50% of relatives who were satisfied with the patients’ choice mentioned negative aspects of the treatment choice, such as the treatment did not work, there were side effects or it would not have been the relatives’ choice. Whereas, 80% of relatives who were not satisfied mentioned negative aspects of the treatment choice. The most mentioned positive aspects were that they tried everything and that it was the patient’s choice. Conclusion The majority of relatives reported patients’ treatment goals as not achieved. However, relatives were predominantly satisfied about the treatment choice. Satisfaction does not provide a full picture of the experience with the treatment decision considering that the majority of relatives mentioned (also) negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about the chance of success and the possible side effects of the treatment.

Abstract 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 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 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 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 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 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.

Abstract 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 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.

In the Netherlands, people who wish to intentionally end their own life can request for physician assistance in dying (PAD). Having a classifiable medical condition is a prerequisite to receive PAD. Some people, either in the presence or absence of a medical condition, choose to end life without assistance from a physician. This study estimates the frequency of people who intentionally ended their own life, and describes their demographic and medical characteristics through a nationwide mortality follow-back study based on questionnaires from certifying physicians of a stratified sample of death certificates of people drawn from the central death registry of Statistics Netherlands (n = 7277). In 1.85% of all deaths in 2015 people intentionally ended their own life; of which 0.50% by voluntarily stopping eating and drinking, 0.20% by self-ingesting self-collected medication, and 1.15% using other methods. Estimating the frequency of suicide is influenced by definitions and the information sources. The great majority of people who ended life by voluntarily stopping eating and drinking were over 80 years old and suffered from an accumulation of health problems related to old age, somatic problems, and/or dementia. People who ended their own life through other methods were mostly under 65 years old and primarily suffered from psychiatric, psychosocial and existential problems. Few people who intentionally ended their own life requested PAD, especially those who suffered from solely psychiatric diseases and those without a medical condition. PAD in the Netherlands is embedded in the medical domain as it is currently understood by Dutch law. This raises the question how to address the desire to die from people whose wish to intentionally end their own life is not rooted in a medical condition and therefore fall outside this medical framework of assistance in dying.

Abstract 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 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 (

Abstract Background End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff’s lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication. Methods Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy. Results Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization’s definition of palliative care: 76% answered 4–5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p 36, female, with formal palliative care training, and knowledge of the palliative care definition. Conclusion Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities.

Abstract Background Generals practitioners (GPs) and district nurses (DNs) play a leading role in providing palliative care at home. Many services and facilities are available to support them in providing this complex care. This study aimed to examine the extent to which GPs and DNs involve these services, what their experiences are, and how involvement of these services and facilities can be improved. Methods Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 108 GPs and 258 DNs, followed by three homogenous online focus groups with 8 GPs and 19 DNs, analyzed through open coding. Results Most GPs reported that they sometimes or often involved palliative home care teams (99%), hospices (94%), and palliative care consultation services (93%). Most DNs reported sometimes or often involving volunteers (90%), hospices (88%), and spiritual caregivers (80%). The least involved services and facilities were psychologists and psychiatrists (51% and 50%) and social welfare (44% and 57%). Main reason for not involving services and facilities was ‘not needing’ them. If they had used them, most GPs and DNs (68–93%) reported solely positive experiences. Hardly anyone (0–3%) reported solely negative experiences with any of the services and the facilities. GPs and DNs suggested improvements in three areas: (1) establishment of local centers giving information on available services and facilities, (2) presentation of services and facilities in local multidisciplinary meetings, and (3) support organizations to proactively offer their facilities and services. Conclusion Psychological, social, and spiritual services are involved less often, suggesting that the classic care model, which focuses strongly on somatic issues, is still well entrenched. More familiarity with services that can provide additional care in these areas, regarding their availability and their added value, could improve the quality of life for patients and relatives at the end of life.

Abstract 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.