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Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare. Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses. Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%). Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g. visit restrictions) and health care providers' characteristics. Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics and Generalized Estimating Equation. Results: Of the respondents (n = 302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Especially in the first wave end-of-life care in all aspects was limited according to a substantial part of health care providers (between 29.7 and 57.7%). Psychosocial and spiritual care were more limited than medical and nursing care during all time periods. Care being limited according to health care providers was associated with visit restrictions, shortness of personal protective equipment or restrictions in caring for the deceased and decreased over time. Conclusion: The COVID-19 pandemic impacted different aspects of end-of-life care throughout the pandemic's first 18 months. Over the course of the pandemic health care providers seemed to have invented ways to adjust their work in order to minimize the effect of limiting measures. More involvement of health care providers in decision-making may improve the prioritization of measures to deal with crisis situations in care. These reflections highlight priorities during crises and the role healthcare providers could play in maintaining good end-of-life care. This remains relevant in new health crises, where care may differ from what is considered good quality of care. [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

Background: Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails. Methods: In a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The questionnaire included two statements on relatives' involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians' views on involving relatives in EAS decision-making. Interviews were thematically analysed. Results: The majority of physicians want to know relatives' opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives' opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives' objections and providing appropriate information. Reasons for not taking relatives' opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision. Conclusions: Although physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives' opinions are not decisive. [ABSTRACT FROM AUTHOR]

Background: In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives' involvement probably changed. We aim to investigate relatives' involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard. Methods: A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (n = 329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (n = 24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data. Results: Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97.1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient's advocate. Discussing a patient's quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role. Conclusions: As treatment alignment with a patient's values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient's quality of life, followed by tailoring the process to relatives' preferences as much as possible. Healthcare professionals should be aware of relatives' heterogeneous and possibly changing preferences regarding the decision-making process. [ABSTRACT FROM AUTHOR]

It has been suggested that grief after losing a significant other person during the COVID-19 pandemic is more severe than before the pandemic. However, little is known about the factors associated with COVID-19-related grief. This study aims to examine whether grief among relatives of people who died during the first COVID-19 wave was associated with factors such as (in)sufficient opportunity to be with the dying person, relatives' appreciation of how the person died, and "unfinished business" between the bereaved and the deceased. The study involved 200 Dutch relatives who had lost a person during the pandemic. Grief was measured with the Hogan Despair subscale. Data were analyzed using correlations and multivariable regression analysis. Our findings revealed that two-thirds of bereaved relatives reported that they had not had sufficient opportunity to be with the dying person in the final days. However, this experience was not significantly correlated with despair. A negative appreciation of the dying process and remaining unfulfilled wishes as part of "unfinished business" between the dying person and their relative were associated with higher levels of despair, particularly among partners. It is crucial to ensure that relatives can experience good end-of-life care for their dying loved one and be enabled to resolve family issues, to mitigate the impact of the pandemic. [ABSTRACT FROM AUTHOR]

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say farewell, and of social support. We identified five ways in which the three COVID-19 related loss experiences interacted: overshadowed grief, cumulative grief, triggered grief, derailed grief, and conciliatory grief. This study demonstrated that pre-COVID-19 diagnoses and understandings of grief are not sufficient to picture grief during and after the COVID-19 pandemic. These grief experiences are more complex and deserve further exploration.