Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.
Background: To effectively care for dying patients, nurses need to possess death self-efficacy—the state of having both a range of skills and capabilities to provide care to dying patients and confidence in one’s ability to do so. A paucity of death self-efficacy may lead to burnout.
Objectives: The aims of this study are to clarify oncology nurses’ death self-efficacy and to explore its relationships with attitudes toward death and burnout.
Methods: A cross-sectional study was performed in 7 cancer hospitals across mainland China between June and July 2019. Oncology nurses completed an online survey consisting of the Death Self-efficacy Scale, Death Attitude Profile–Revised Scale, and Maslach Burnout Inventory.
Results: The 755 oncology nurses completing the survey reported low death self-efficacy and high levels of burnout. Those who had more years of clinical experience, had the highest professional rank, talked death quite often, and have received palliative care trainings, doing no shift work, scored higher on death self-efficacy. Death self-efficacy was positively correlated with positive attitudes toward death and negatively correlated with levels of burnout. The multiple regression analysis showed that death self-efficacy and attitudes toward death were independent, significant predictors of oncology nurses’ burnout.
Conclusions: Chinese oncology nurses are not well prepared to care for dying cancer patients and cope with death-related issues.
Attitude to death and death anxiety in patients with severe psychiatric disorders have been studied rarely so far, although this is an existential perspective for each human being and clinically seems to be changed in patients with depression and schizophrenia. Patients with depression (mean age 46.30 ± 13.39; 12 women, 8 men) and schizophrenia (mean age 38.95 ± 1285; 9 women, 11 men), as well as healthy controls, were included in the study. Death anxiety and attitude to death were assessed using the newly developed and currently validated BOFRETTA scale. Attitude to death was significantly worse in the group of patients with schizophrenia, especially in those with prominent negative symptoms. Concerning death anxiety, patients with schizophrenia and also those with depression exhibited higher mean values compared with healthy controls in the same age range. These results suggest that there are specific similarities and differences concerning attitude to death and death anxiety in patients with psychotic and affective disorders. It can be concluded that existential aspects such as death and meaningful life should also be considered within the treatment of patients with severe mental disorders.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
Much of the scholarly literature sees death as a taboo topic for Chinese. To test this assumption, this study held seven focus groups in the Greater Toronto Area in 2017. It found that the majority of the older Chinese immigrant participants talked about death freely using either the word death or a euphemism. They talked about various issues including medical treatment and end-of-life care, medical assistance in dying, death preparation, and so on. A small number did not talk about death, but it seemed their reluctance was related to anxiety or discomfort or simply reflected a choice of words. The study concludes death as taboo could be a myth, at least for older Chinese immigrants.
The concept of a good death is crucial in palliative care, but its relationship with attitudes toward death and feelings of interconnectedness needs to be further deepened. The first aim of this study was to explore the concept of good death, attitudes toward death, and feelings of interconnectedness among family caregivers (FCs) and health-care providers (HCPs) of terminally ill patients with cancer. The second aim was to analyze associations of good death concept with attitudes toward death and feelings of interconnectedness. Participants were asked to assess the importance of features that characterize a good death. To explore each person's attitude toward death and feelings of interconnectedness, 3 open questions were used. The sample consisted of 49 participants: 24 (48.98%) FCs and 25 (51.02%) HCPs. Nine good death features were considered essential by more than 70% of participants. These referred to the physical (eg, symptoms control), social (eg, loved ones' presence), emotional (eg, sharing emotions), and spiritual (eg, inner peace) dimensions. Importance attributed to components of a good death such as patient's awareness and acceptance of death, meaning, respect for the patient's wishes, and inner peace were found to be associated with lack of avoidance and acceptance toward death and feelings of interconnectedness. Given the importance of FCs and HCPs in providing care and their impact on the patients' dying process, it is necessary to reflect upon how their personal attitudes and previous experiences influence the care of dying patients.
Le développement exponentiel de nouvelles techniques dans le domaine médical s’applique aussi aux patients en fin de vie, opérant un changement dans les mentalités. La fréquence et la manière de mourir des enfants se sont modifiées tout comme la représentation que l’on s’en fait. L’objectif de notre étude était d’évaluer les enjeux et la représentation de la mort du nouveau-né et de l’enfant dans la société française contemporaine ainsi que les déterminants socioculturels pouvant les conditionner.
Background: Our objectives were to test whether during a potentially life-threatening medical emergency, perceived threat (a patient’s sense of life endangerment) in the emergency department (ED) is common and associated with the subsequent development of posttraumatic stress disorder (PTSD) symptoms.
Methods: This study was an ED-based prospective cohort study in an academic hospital. We included adult patients requiring acute intervention in the ED for resuscitation of a potentially life-threatening medical emergency, defined as respiratory or cardiovascular instability. We measured patient-perceived threat in the ED using a validated patient self-assessment measure (score range = 0 to 21, with higher scores indicating greater perceived threat). We performed blinded assessment of PTSD symptoms 30 days after discharge using the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5).
Results: Ninety-nine of 113 (88%) patients completed follow-up, with 98% reporting some degree of perceived threat, median (interquartile range [IQR]) perceived threat score 12 (6 to 17), and 72% reported PTSD symptoms in relation to their ED visit (median [IQR] PC-5 score = 7 [0 to 30]). Patients with respiratory instability had higher median (IQR) perceived threat scores (16 [9 to 18] vs. 9 [6 to 14)] and PCL-5 scores (10 [2 to 40] vs. 3 [0 to 17]) compared to patients without respiratory instability. In a multivariable linear regression model adjusting for potential confounders, greater perceived threat in the ED was independently associated with higher PCL-5 scores (ß = 0.79, 95% confidence interval [CI] = 0.15 to 1.42). Among the individual perceived threat items, the feeling of helplessness during resuscitation had the strongest association with PCL-5 score (ß = 5.24, 95% CI = 2.29 to 8.18).
Conclusions: Perceived threat during potentially life-threatening emergencies is common and independently associated with development of PTSD symptoms. Additional research to test whether reduction of perceived threat in the ED attenuates the development of PTSD symptoms following potentially life-threatening emergencies is warranted.
Delivery of end-of-life care has gained prominence in the UK, driven by a focus upon the importance of patient choice. In practice choice is influenced by several factors, including the guidance and conduct of healthcare professionals, their different understandings of what constitutes 'a good death', and contested ideas of who is best placed to deliver this. We argue that the attempt to elicit and respond to patient choice is shaped in practice by a struggle between distinct 'institutional logics'. Drawing on qualitative data from a two-part study, we examine the tensions between different professional and organisational logics in the delivery of end-of-life care. Three broad clusters of logics are identified: finance, patient choice and professional authority. We find that the logic of finance shapes the meaning and practice of 'choice', intersecting with the logic of professional authority in order to shape choices that are in the 'best interest' of the patient. Different groups might be able to draw upon alternative forms of professionalism, and through these enact different versions of choice. However, this can resemble a struggle for ownership of patients at the end of life, and therefore, reinforce a conventional script of professional authority.
Background: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.
Methods: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.
Results: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.
Conclusion: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.
CONTEXT: Providing hospice and palliative care (HPC) early in the course of care for patients with life-threatening illness is important for improving patient quality of life. However, little literature exists for factors affecting to the intention to use early palliative care (EPC) of general population.
OBJECTIVES: This study aimed to identify the sources of information about HPC, investigate whether they affect intention to use HPC and EPC, and examine the relationship between the components of a good death and the intention to use HPC and EPC.
METHODS: A stratified nationwide cross-sectional survey including 1,500 participants, 20 to 74 years old, was conducted to investigate their intentions to use HPC and EPC, available information sources, and perceived components of a good death.
RESULTS: The main sources of information about HPC were television and radio. Information acquired from health professionals was positively associated with the intention to use EPC. While regarding a good relationship with family as a component of a good death was related to low intention to use EPC, being able to trust medical staff, being involved in decisions about care, and being respected as an individual were associated with high intention to use EPC.
CONCLUSION: Information from healthcare providers and public awareness through education and publicity efforts are necessary to inform the public about the benefits of EPC. Furthermore, it is essential that medical staff cultivate the skills necessary to secure public trust and provide care that respects patients until the end of their lives.
Depuis l’aube de la modernité, la mort est tendanciellement disqualifiée. Mort tabou, mort interdite, déni de la mort, les mots ne manquent pas pour évoquer la mort et son rejet.
Ce livre met en perspective le traitement contemporain de la mort au regard de la psychanalyse, en appui sur divers travaux d'historiens, de philosophes, en lien avec la littérature et à la lumière des expériences personnelles relatives à la mort. L’analyse des pratiques entourant la mort et leur abandon vient questionner la volonté de l’homme de la dépasser par la technique. Une des questions centrales porte sur la façon dont les sujets parviennent à composer avec le rejet de la mort, à inventer une solution somme toute personnelle pour composer avec la perte. Dans une époque marquée par la solitude et l’érosion du vivre ensemble, la mort aujourd’hui nous réduit irrémédiablement à une affaire personnelle.
Background: Little attention has been paid to the ways in which nurses personally experience, understand and assign meaning to providing palliative care.
Aim: A qualitative study of four nurses working with patients in the terminal phase in a hospital in Mexico was conducted to understand their lived professional experiences and relationships with death.
Methods: Four interviews were analysed using the Greimasian actantial-semiotic model. Actants were categorised by narrative role and their actions were analysed. The grammatical features of the narration were also examined.
Findings: Nurses sought a good death for the patient, which they typically achieved, and spiritual peace for themselves, which they often did not. Nurses placed a high value on personal, social and professional recognition for their work. The philosophical themes affecting nursing as a vocation that emerged included life and death, truth and honesty and the role of God and the family. These professional values were often contradictory, and these dilemmas should be addressed in professional training and support.
BACKGROUND: Providing care for dying people and the death of patients are stressing situations faced by nursing students during their clinical practice. Learning about palliative care improves the management of emotions and the ability to cope when caring for patients in end-of-life processes. However, there is little knowledge on the effect of this learning on the students' perceptions of their own death.
OBJECTIVES: To determine the effect of a palliative care course on the thoughts of nursing students about their own death.
DESIGN: A qualitative, descriptive, and comparative study was conducted based on content analysis, administering an open-ended questionnaire on dying and death at the start and end of a palliative care course.
PARTICIPANTS: The study included 85 volunteers studying Palliative Care in the second year of their Nursing Degree at the University of Granada (Spain).
RESULTS: Students described their perceptions in more detail after the course, with more numerous code citations, and their post-course responses evidenced a reduction in anxiety about their own death and an increased recognition of the need to respect the decisions of patients for a dignified death.
CONCLUSIONS: Palliative care learning modifies the perception by nursing students of their own death and their understanding of a dignified death, which may enhance the care they deliver to patients at the end of life.
Previous research has linked death attitudes, palliative care self-efficacy, and attitudes toward care of the dying among nursing students and other nursing samples, but not among hospice nurses. The purpose of this study was to investigate these relationships among hospice nurses (N = 90). More positive attitudes toward care of the dying were associated with lower fear of death and death avoidance as well as higher neutral acceptance and escape acceptance, but not with approach acceptance. More positive attitudes toward care of the dying was associated with perceived capability to answer end-of-life concerns, but not with perceived capability to respond to end-of-life symptoms. Clinical interventions seeking to improve attitudes toward care of the dying among hospice nurses may be most effective by targeting death attitudes and improving self-efficacy in the area of discussing end-of-life concerns with patients.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
BACKGROUND: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages.
METHODS: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go".
RESULTS: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance").
CONCLUSIONS: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.
BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely.
OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents.
METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches.
RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept.
CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.
Introduction: Nurses play an important role in caring for dying patients. However, little is known about the attitude towards death of the registered nurses in China.
Materials and Methods: A knowledge, attitude, and the practice (KAP) survey using standardized questionnaires was conducted at eight teaching hospitals in Jiangsu Province, China. In total, 366 nursing interns were recruited and 357 turned in valid response. Data about the interns' demographic characteristics and their attitudes to death in five domains, including fear of death, death avoidance, natural acceptance, approach acceptance, and escape acceptance, were collected.
Results: Compared to the norms, the nursing interns had statistically significantly higher scores in the domains death avoidance, approach acceptance, and fear of death (14.9 vs. 11.1, 26.2 vs. 24.2, and 20.3 vs. 19.0, respectively); however, statistically significantly lower scores were in the domains natural acceptance and escape acceptance (18.4 vs. 22.0, and 13.6 vs. 15.1, respectively). Religious belief, experience of a deceased relative in family, death education, and family atmosphere of discussing death are positively associated with one or more domains of attitude towards death.
Conclusion: The positive attitude towards death and death education before clinical practice are helpful for nursing interns when they care for dying patients. In general, the scores of attitude towards death are at a moderate level in the surveyed Chinese nursing interns. The death education for nursing students needs to be reinforced in China.
CONTEXT: Death anxiety is common in patients with metastatic cancer, but its relationship to brain metastases and cognitive decline is unknown. Early identification of death anxiety and its determinants allows proactive interventions to be offered to those in need.
OBJECTIVE: To identify psychological, physical and disease-related (including brain metastases, cognitive impairment) factors associated with death anxiety in mNSCLC patients.
METHODS: A cross-sectional pilot study with mNSCLC outpatients completing standardized neuropsychological tests and validated questionnaires measuring death anxiety, cognitive concerns, illness intrusiveness, depression, demoralization, self-esteem, and common cancer symptoms. We constructed a composite for objective cognitive function (mean neuropsychological tests z-scores).
RESULTS: Study measures were completed by 78 patients (50% female, median age: 62 years (range:37-82)). Median time since mNSCLC diagnosis was 11 months (range:0-89); 53% had brain metastases. At least moderate death anxiety was reported by 43% (n=33). Objective cognitive impairment was present in 41% (n=32) and perceived cognitive impairment in 27% (n=21). Death anxiety, objective, and perceived cognitive impairment did not significantly differ between patients with and without brain metastases. In univariate analysis, death anxiety was associated with demoralization, depression, self-esteem, illness intrusiveness, common physical cancer symptoms, and perceived cognitive impairment. In multivariate analysis, demoralization (p<0.001) and illness intrusiveness (p=0.001) were associated with death anxiety.
CONCLUSION: Death anxiety and brain metastases are common in mNSCLC patients, but not necessarily linked. The association of death anxiety with both demoralization and illness intrusiveness highlights the importance of integrated psychological and symptom management. Further research is needed on the psychological impact of brain metastases.