Search

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. [ABSTRACT FROM AUTHOR]

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

Background: Although the acute hospital setting is not considered to be an ideal place of death, many people are admitted to hospital at the end of life. Aim: To examine what proportion of terminal hospital admissions among their patients family physicians consider to have been avoidable and/or inappropriate; which patient, family physician and admission factors are associated with the perceived inappropriateness or avoidability of terminal hospital admissions; and which interventions could have prevented them, from the perspective of family physicians. Design: Survey among family physicians, linked to medical record data. Setting: Patients who had died non-suddenly in the acute hospital setting of a university hospital in Belgium between January and August 2014. Results: We received 245 completed questionnaires (response rate 70%) and 77% of those hospital deaths (n = 189) were considered to be non-sudden. Almost 14% of all terminal hospital admissions were considered to be potentially inappropriate, almost 14% potentially avoidable and 8% both, according to family physicians. The terminal hospital admission was more likely to be considered potentially inappropriate or potentially avoidable for patients who had died of cancer, when the patient's life expectancy at the time of admission was limited, by family physicians who had had palliative care training at basic, postgraduate or post-academic level, and when the admission was initiated by the patient, partner or other family. Conclusion: Timely communication with the patient about their limited life expectancy and the provision of better support to family caregivers may be important strategies in reducing the number of hospital deaths. [ABSTRACT FROM AUTHOR]

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

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

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

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

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

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

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

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

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

Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. Design: The study is a survey questionnaire study. Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers ( n=236) and end-of-life consultants (SCEN physicians; n=427). Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. Results: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. Conclusions: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity. [ABSTRACT FROM AUTHOR]

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

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

Background. In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients. Methods. We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity. Results. Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death. Conclusions. Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life. [ABSTRACT FROM AUTHOR]

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

The article discusses a study reviewing the literature on palliative care research in long-term care facilities, such as nursing homes (NH), in Europe, using PubMed, Embase and PsychINFO databases. Few studies reporting on patient outcome data using different measurement instruments were published in ten years. Majority showed symptoms, especially pain, the most frequent measured out-come. The authors suggest more multidimensional research, high quality trails and intervention studies.

Background: Many patients are transferred from home to hospital during the final phase of life and the majority die in hospital. The aim of the study is to explore hospital referrals of palliative care patients for whom an out-of-hours general practitioner was called. Methods: A retrospective descriptive chart study was conducted covering a one-year period (1/Nov/2005 to 1/Nov/2006) in all eight out-of-hours GP co-operatives in the Amsterdam region (Netherlands). All symptoms, sociodemographic and medical characteristics were recorded in 529 charts for palliative care patients. Multivariate logistic regression analysis was performed to identify the variables associated with hospital referrals at the end of life. Results: In all, 13% of all palliative care patients for whom an out-of-hours general practitioner was called were referred to hospital. Palliative care patients with cancer (OR 5,1), cardiovascular problems (OR 8,3), digestive problems (OR 2,5) and endocrine, metabolic and nutritional (EMN) problems (OR 2,5) had a significantly higher chance of being referred. Patients receiving professional nursing care (OR 0,2) and patients for whom their own general practitioner had transferred information to the out-of-hours cooperative (OR 0,4) had a significantly lower chance of hospital referral. The most frequent reasons for hospital referral, as noted by the out-of-hours general practitioner, were digestive (30%), EMN (19%) and respiratory (17%) problems. Conclusion: Whilst acknowledging that an out-of-hours hospital referral can be the most desirable option in some situations, this study provides suggestions for avoiding undesirable hospital referrals by out-of-hours general practitioners at the end of life. These include anticipating digestive, EMN, respiratory and cardiovascular symptoms in palliative care patients. [ABSTRACT FROM AUTHOR]

Background: Preserving dignity can be considered as a goal of palliative care. To provide dignity-conserving care, it is relevant to identify the factors that influence a patient's self-perceived dignity. This study aims to develop an instrument to measure factors affecting self-perceived dignity that has good content validity and is appropriate for use in practice. Methods: Data were collected in the Advance Directives Cohort Study. In 2008, the cohort received a questionnaire with 31 items that might influence one's self-perceived dignity. For a subsample of people with poor health (n = 292), we analyzed which items could be removed because of the mean scores for presence of the item and its influence on dignity. Results: The 31 items fell into four domains: evaluation of self in relation to others, functional status, mental state, and care and situational aspects. Mean scores for presence and influence on dignity showed large differences and were not correlated. Six items were scarcely present and did not substantially affect self-perceived dignity. Because three of these were expected to influence dignity in other settings, only three items could be removed and two items could be combined into one. After calculating correlations between conceptually similar items, one extra item could be removed. Conclusion: Reducing the instrument to 26 items and dichotomizing the answer option for presence increases its feasibility for use in practice. The instrument offers an important step to better understanding the phenomenon of self-perceived dignity by gaining information directly from patients. [ABSTRACT FROM AUTHOR]

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