Communication about euthanasia in Dutch nursing homes.

In 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.

End-of-life treatment preference discussions between older people and their physician before and during the COVID-19 pandemic: cross sectional and longitudinal analyses from the Longitudinal Aging Study Amsterdam.

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.

How physicians see nurses' role in decision-making about life-prolonging treatments in patients with a short life expectancy: An interview study.

OBJECTIVE: Exploring physicians' views on hospital nurses' role in decision-making about potentially life-prolonging treatments in patients with a short life expectancy. METHODS: A qualitative study using semi-structured interviews with hospital physicians. Data were collected from May to September 2019 and analyzed following principles of thematic analysis. RESULTS: Fifteen physicians working in different hospitals and specialisms participated. Physicians stated that they are responsible for the final decision about potentially life-prolonging treatments. They considered nurses' role in decision-making to be complementary to the roles of both patients and the physicians themselves, especially when there are doubts or complex situations. Physicians varied in how important they found nurses' involvement in the decision-making process: some physicians saw the involvement of nurses as "situation-dependent", while others viewed nurses' involvement as standard practice. Furthermore, physicians mentioned practical obstacles to involving nurses, like the limited time available to both nurses and physicians themselves. CONCLUSION: Physicians recognize a complementary role for nurses in decision-making about potentially life-prolonging treatment, especially in cases with doubts or complex situations. PRACTICE IMPLICATIONS: Physicians and nurses should engage with each other to make nurses' involvement less situation-dependent. This inter-professional collaboration regarding decision-making about life-prolonging treatments should be stimulated, supported and maintained.

Awareness and Actual Knowledge of Palliative Care Among Older People: A Dutch National Survey.

CONTEXT: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care. OBJECTIVES: To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people. METHODS: A cross-sectional study in a representative sample of 1242 Dutch people (≥ 65 years; response 93.2%) on whether they had heard of palliative care and knowledge statements about palliative care. RESULTS: The majority had heard of the term palliative care (90.1%), and 47.1% reported to know (quite) exactly what it means. Most knew palliative care is not only for people with cancer (73.9%) and is not only provided in hospice facilities (60.6%). A minority knew palliative care can be provided alongside life-prolonging treatment (29.8%) and is not only for people who have a few weeks left to live (23.5%). Experience with palliative care through family, friends and/or acquaintances (range ORs: 1.35-3.39 for the four statements), higher education (ORs: 2.09-4.81), being female (ORs: 1.56-1.91), and higher income (OR: 1.93) were positively associated with one or more statements, while increasing age (ORs: 0.52-0.66) was negatively associated. CONCLUSION: Knowledge of palliative care is limited, stressing the need for population-wide interventions, including information meetings. Attention should be paid to timely attention for palliative care needs. This might stimulate ACP and raise public knowledge of (im) possibilities of palliative care.

Advance care planning (ACP) in glioblastoma patients: Evaluation of a disease-specific ACP program and impact on outcomes.

Background: The feasibility of implementing an advance care planning (ACP) program in daily clinical practice for glioblastoma patients is unknown. We aimed to evaluate a previously developed disease-specific ACP program, including the optimal timing of initiation and the impact of the program on several patient-, proxy-, and care-related outcomes. Methods: The content and design of the ACP program were evaluated, and outcomes including health-related quality of life (HRQoL), anxiety and depression, and satisfaction with care were measured every 3 months over 15 months. Results: Eighteen patient-proxy dyads and two proxies participated in the program. The content and design of the ACP program were rated as sufficient. The preference for the optimal timing of initiation of the ACP program varied widely, however, most of the participants preferred initiation shortly after chemoradiation. Over time, aspects of HRQoL remained stable in our patient population. Similarly, the ACP program did not decrease the levels of anxiety and depression in patients, and a large proportion of proxies reported anxiety and/or depression. The needed level of support for proxies was relatively low throughout the disease course, and the level of feelings of caregiver mastery was relatively high. Overall, patients were satisfied with the provided care over time, whereas proxies were less satisfied in some aspects. Conclusions: The content and design of the developed disease-specific ACP program were rated as satisfactory. Whether the program has an actual impact on patient-, proxy-, and care-related outcomes proxies remain to be investigated.

End of life in general practice: trends 2009-2019.

OBJECTIVES: To assess possible trends between 2009 and 2019 in the Netherlands of palliative care indicators: the provision of palliative care or treatment, hospitalisations in the last month before death, use of specialised palliative care services and place of death. METHODS: The study design was a repeated retrospective cross-sectional design with questionnaires filled in by general practitioners within a clustered sample of 67 Sentinel practices. Patients whose death was non-sudden, and thus could have received palliative care, between 1 January 2009 and 31 December 2019 were included in the study, resulting in 3121 patients. RESULTS: Between 2009 and 2019, there is a significant increase in the number of people who receive palliative care or treatment alongside life-prolonging or curative treatment and the number of people who die at home, while the number of hospitalisations in the last month before death and the number of people dying in hospital shows a significant decrease. However, there is no trend in the involvement of specialised palliative care services or people receiving solely palliative care or treatment. CONCLUSION: This study suggests improvements in end-of-life care provided in primary care in the Netherlands. Trends coincided with increased attention to palliative care both in practice and policy. Yet, there is still considerable room for improvement as there is no significant increase in people solely receiving palliative care or treatment and the involvement of specialised palliative care services.

Caregiver's burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers.

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 on 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.

Nurses' perspective on their involvement in decision-making about life-prolonging treatments: A quantitative survey study.

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

Cross-Sectional Research Into People Passing Away Through Self-Ingesting Self-Collected Lethal Medication After Receiving Demedicalized Assistance in Suicide.

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.

Feasibility and effectiveness of tools that support communication and decision making in life-prolonging treatments for patients in hospital: a systematic review.

OBJECTIVE: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings. DESIGN: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies. RESULTS: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients. CONCLUSIONS: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions.

Home care for terminally ill patients: the experiences of family caregivers with and without paid work.

OBJECTIVES: To facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work. METHODS: We used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292). RESULTS: Working family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully. CONCLUSIONS: Working and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.

Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study).

BACKGROUND: The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains. AIM: To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands. METHODOLOGY: A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands. We created a dignity-inspired framework for analysis, and used the models of Chochinov et al. and Van Gennip et al. as sensitising concepts. These focus on illness-related aspects and the individual, relational and societal/organisational level of dignity. RESULTS: Four themes concerning aspects of end-of-life care practices were identified as possibly jeopardising the dignity of patients or relatives: 'Dealing with an unknown illness', 'Being isolated', 'Restricted farewells' and 'Lack of attentiveness and communication'. The analysis showed that 'Meaningful end-of-life moments' and 'Compassionate professional support' contributed to the dignity of patients and their relatives. CONCLUSION: This study illuminates possible aspects of end-of-life care practices that jeopardised or supported dignity. Experienced dignity of bereaved relatives was associated with the unfamiliarity of the virus and issues associated with preventive measures. However, most aspects that had an impact on the dignity experiences of relatives were based in human action and relationships. Relatives experienced that preventive measures could be mitigated by health care professionals to make them less devastating.

Family support on intensive care units during the COVID-19 pandemic: a qualitative evaluation study into experiences of relatives.

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.

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Intentionally ending one's own life in the presence or absence of a medical condition: A nationwide mortality follow-back study.

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.

Information meetings on end-of-life care for older people by the general practitioner to stimulate advance care planning: a pre-post evaluation study.

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.

Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands.

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.

Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life: a cross-sectional study.

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.

Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study).

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.