Death influence in clinical practice: A course for graduate students

A course for graduate instruction was designed to provide for analysis and study of the social, cultural, and psychological conditions that influence death in modem society. The course was open to any graduate student with an interest in the topic, xoith enrollment limited to 16 participants. The formal objectives emphasize the cognitive focus of the course, but there is an overall goal of facilitating an integration of intellectual and emotional learnings in relation to death and dying. Methods of instruction include weekly seminars, experiential out-of-class assignments, specific written assignments, and readings. Seminar topics include social values and death in human society, cultural variations and death expectations, death and the family, institutional death: its fortns and effects, life versus death: an occupational dilemma, recovery care versus comfort care: nurses' problems, dying as a Personal experience, effect of dying on social interaction, and unresolved problems and major issues. Follow-up evaluation by questionnaire for students enrolled betiveen 1971 and 1979 produced a response rate of 55.8 percent with a generally favorable evaluation. The instructor made deliberate efforts to use the seminar as a situation for encouraging the integration of emotional and cognitive learnings. A variety of instructional strategies are described.     

Adults’ perspectives on cultural,social and professional support on end-of-life preferences

BackgroundDiverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.AimsTo explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.MethodsA semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.FindingsMajor themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.DiscussionThis suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.ConclusionsFindings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.     

How to prepare Chinese-born nurses to care for patients at the end-of-life in Western settings: A discussion paper

BackgroundAs a result of globalisation, many Chinese-born nurses choose to work outside China. They are expected to be competent in providing end-of-life care and dealing with dying and death within the new country, where cultural beliefs, attitudes, and values towards dying and death may differ from their own. It is essential to consider the influence of Chinese culture on nurses’ confidence and preparedness for end-of-life care, especially for dealing with dying and death.PurposeTo discuss Chinese perspectives on dying and death, and death education and training in mainland China, from which we propose recommendations for nurse educators, clinical mentors and researchers in Western settings on how to prepare Chinese-born nurses to care for patients at end-of-life.DiscussionChinese-born nurses likely encounter significant cultural challenges when providing end-of-life care to dying patients in Western settings. Chinese-born nurses’ perspectives, attitudes and values toward dying and death are shaped by Chinese cultural and social beliefs, practices and expectations, which contrast with those of Western settings. Nurse educators, clinical mentors and researchers in Western settings are encouraged to support and guide Chinese-born nurses in building their cross-cultural understanding and world view to an international view of nursing; essential foundations to the provision of end-of-life care, and nurse coping with dying and death in Western settings.ConclusionThe development of death education programs and training to support Chinese-born nurses to attain their cultural competence is a priority in Western countries, to better promote these nurses’ competency in providing high-quality end-of-life care.     

Ethics, technology, and the high cost of dying: a public forum

To increase public awareness of the complexity of the issues surrounding care for the terminally ill, a county medical society and a local hospital council co-sponsored a public forum in October 1985. Panel members discussed the case of a terminally ill cancer patient from the medical, psychologic, economic, legal, and family perspectives. Panel members stressed the importance of helping the dying person to choose the preferred treatment and to achieve an emotionally satisfying death. The audience responded by pointing out the barriers to achieving death with dignity, which include poverty, lack of social support, and difficulty in facing and talking about death. In an evaluation questionnaire, the audience indicated that the emotional aspects and the communication problems involved in care for the terminally ill caused them more concern than the legal and ethical issues.     

Supporting families of patients who die in adult intensive care: A scoping review of interventions

BackgroundFamilies who perceive themselves as prepared for an impending death experience reduced psychological burden during bereavement. Understanding which interventions promote death preparedness in families during end-of-life care in intensive care will inform future intervention development and may help limit the burden of psychological symptoms associated with bereavement.AimTo identify and characterise interventions that help prepare families for the possibility of death in intensive care, incorporating barriers to intervention implementation, outcome variables and instruments used.DesignScoping review using Joanna Briggs methodology, prospectively registered and reported using relevant guidelines.Data sourcesA systematic search of six databases from 2007 to 2023 for randomised controlled trials evaluating interventions that prepared families of intensive care patients for the possibility of death. Citations were screened against the inclusion criteria and extracted by two reviewers independently.ResultsSeven trials met eligibility criteria. Interventions were classified: decision support, psychoeducation, information provision. Psychoeducation involving physician-led family conference, emotional support and written information reduced symptoms of anxiety, depression, prolonged grief, and post-traumatic stress in families during bereavement. Anxiety, depression, and post-traumatic stress were assessed most frequently. Barriers and facilitators to intervention implementation were seldom reported.ConclusionThis review provides a conceptual framework of interventions to prepare families for death in intensive care, while highlighting a gap in rigorously conducted empirical research in this area. Future research should focus on theoretically informed, family-clinician communication, and explore the benefits of integrating existing multidisciplinary palliative care guidelines to deliver family conference within intensive care.Implications for clinical practiceIntensive care clinicians should consider innovative communication strategies to build family-clinician connectedness in remote pandemic conditions. To prepare families for an impending death, mnemonic guided physician-led family conference and printed information could be implemented to prepare families for death, dying and bereavement. Mnemonic guided emotional support during dying and family conference after death may also assist families seeking closure.     

Effects of advance care planning training on advanced practice nurse students’ knowledge,confidence, and perception of end-of-life care: A mixed-method study

AimsThis study aimed to assess how an advance care planning training program affected advanced practice nursing students’ knowledge, confidence and perception of end-of-life care in South Korea.BackgroundEffective communication between healthcare providers, patients and their families is one of the most important components of quality end-of-life care. However, nurses in South Korea may feel uncomfortable helping patients and families with advance care planning because of the cultural taboo against talking about dying.DesignA mixed-method design was used with data obtained from self-administered questionnaires at the onset and end of the advance care planning training program and qualitative data from participant feedback after the program.MethodsData collected from 65 advanced practice nursing students who participated in advance care planning training programs in June-July 2020 and 2021, conducted as part of a graduate clinical practice course, were analyzed. Data were originally collected to examine students’ course outcomes. A training program was provided to advanced practice nursing students to improve their knowledge, confidence and perception in advance care planning conversations with their patients. The program comprised three sessions: online lectures, face-to-face simulations and discussions on advance care planning and ethical issues. Changes in advance care planning knowledge, confidence in supporting patients’ advance directives, perceived nursing roles in end-of-life treatment decisions and perception of a good death were examined before and after the training.ResultsThere were statistically significant increases in participants’ advance care planning knowledge, confidence in supporting patients’ advance directives and perception of the active role of nurses in patients’ end-of-life treatment decisions after the training.ConclusionsThe results indicate the effects of training programs on advanced practice nursing students’ knowledge, confidence and perception of advance care planning communication. They also provide evidence about what contents and methods can be helpful in developing end-of-life care training for advanced practice nursing students.     

Nursing students' perceptions of caring for dying people,after one year in nursing school

AimTo describe Swedish nursing students' perceptions of caring for dying people after the first year of a three year in a nursing programme at three university nursing schools in Sweden.MethodsInterviews (n = 17) were undertaken with nursing students at the end of their first year. A phenomenographic approach was used to design and structure the analysis of the nursing students' perceptions.ResultsThe analysis resulted in five categories: 1) from abstract to reality, 2) from scary to natural, 3) increased knowledge can give bad conscience, 4) time limits versus fear of end-of-life conversations, and 5) meeting with relatives.ConclusionNursing students need to be prepared both theoretically and within practice to encounter death and dying and to care for dying persons. By combining their theoretical knowledge of dying and death with their own encounters of death and dying people in practice, the students can be supported to develop an understanding of dying and death as a natural part of life rather than something frightening.     

Understanding bereaved caregiver evaluations of the quality of dying and death: an application of cognitive interviewing methodology to the quality of dying and death questionnaire

ContextTo increase the interpretability of quality of dying and death measures, research is needed to understand potential sources of response variation.ObjectivesThe aim of this study was to understand how bereaved caregivers assess the quality of dying and death experience with the Quality of Dying and Death questionnaire (QODD) by exploring the cognitive processes that underlie their evaluations.MethodsBereaved caregivers of former metastatic cancer patients were asked to take part in a cognitive interview protocol after formulating the 31 quality ratings that contribute to the total QODD score. Qualitative content analysis was applied to transcribed interviews, with a specific focus on the information retrieved, the judgment strategies used, and any difficulties participants reported.ResultsTwenty-two bereaved caregivers were interviewed with the protocol. Information that formed the basis of quality ratings referred to the perspective of the patient, the caregiver, other family/friends, or a combination of perspectives. Quality rating judgment strategies were generally comparative, and the most common standards of comparison were to “a hoped for or ideal dying experience,” “a state before the dying phase,” “a state of distress/no distress,” or “normalcy/humanness.” All respondents relied on multiple perspectives and standards of comparison when answering the QODD.ConclusionThese results suggest that the quality of dying and death is a complex construct based on multiple perspectives and standards of comparison. These findings have implications for clinical care, which, if it aspires to improve how dying and death are evaluated, must ensure that the family is the unit of care and aid in preparation for the dying and death experience.     

Interprofessional education in palliative care: A pilot project using popular literature

Summary

A need to introduce the concepts of death and dying to the medical and health sciences undergraduate curriculum was identified at the University of Ottawa, Ontario, Canada. As care of the terminally ill is complex and requires the collaborative involvement of a diverse group of health care professionals, an interprofessional educational approach was utilized to address this need. A seminar course was developed using popular literature as the basis for learning, and offered to first and second year medical students, fourth year nursing students and graduate students in spiritual care. The discussion of roles and the provision of care within the context of works of selected literature provided a focus that enabled the students to transcend their disciplinary barriers, and to better understand the perspectives and contributions that other team members bring to patient care. Evaluation findings suggest that meaningful interprofessional education can be introduced effectively to students either prior to or while they are maturing in their professional roles.     

Can addressing death anxiety reduce health care workers' burnout and improve patient care?

Death anxiety may interfere with health care workers' (HCWs) relationships with patients and patients' families and increase HCWs' levels of burnout. This study shows the impact of a six-day course for HCWs that provided training in communication, in offering emotional and spiritual support to patients, and in personal introspection on death anxiety. The HCWs were given questionnaires to evaluate their level of burnout, personal well-being, and death anxiety as well as the quality of their relationships with patients before the course and four months after it. There were 150 study participants, all HCWs involved in caring for dying patients (85 in palliative care units and 65 in other settings). There was a control group of 26 HCWs who cared for the dying in settings other than palliative care units. The results show that the course appeared to lead to a significant reduction in levels of burnout and death anxiety; they also indicated an increase in personal well-being and professional fulfillment, and participants perceived an improvement in the quality of their relationships with patients and patients' families.     

The Return of a Good Book

This study provides an in-depth investigation of the motivations, goals, and impact on 23 university students enrolled in a Psychology of Death and Dying course. Through a grounded theory analysis of precourse perspective and postcourse reflection assignments, several key themes emerged. Participants were motivated to enroll in the course by their self-identified lack of knowledge on the topic and its professional and personal relevance. They identified three main course goals: cognitive comfort, preparation to support others, and personal growth. At the end of the course, participants noted heightened awareness of personal mortality and increased comfort with death-related topics, as well as reduced fear, surprise at the depth of the thanatology field, and enriched context for their experiences with death and dying. The implications of the results for death educators, researchers, and students are discussed.     

Nursing students’ experiences with patient death and palliative and end-of-life care: A systematic review and meta-synthesis

AimTo synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settingsBackgroundNurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings.DesignA qualitative systematic review and meta-synthesisMethodsPubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012–25 Feb 2023. Qualitative studies of any design reporting nursing students’ experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso’s 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline.ResultsThe review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided.ConclusionsWhile caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.     

Emotional universe of intensive care unit nurses from Spain and the United Kingdom: A hermeneutic approach

AimTo acquire an understanding of the emotional universe of intensive care unit nurses, working in Spain and the United Kingdom.MethodologyThe study used a hermeneutic study design and was set in an academic environment. Participants included nurses with clinical experience in intensive care units. Data were collected from seven in-depth interviews, four in Spanish and three in English. The analysis followed Ricoeur’s Theory of Interpretation. The affective taxonomy Universe of Emotions, served to establish starting categories in it.FindingsSix themes were identified: 1) Critical patient care, critical context; 2) Intensive care… for whom?; 3) Nursing a dying patient; 4) In the company of others; 5) But… is it worth it? and 6) Emotional labour is crucial. These all describe different, multifaceted nurses’ affective journeys, through categories such as: So little time-so much to do, Relatives, Young death vs. elderly death, Poorly-valued work and I'm in the profession I want to be.ConclusionThe sociocultural context shared by the Spanish and English nurses working in intensive care units generates a complex emotional universe, with opposing affective experiences, such as those related to fear, anxiety, sadness, anger, shame, love, surprise and happiness.     

Meanings of dying at home for Chinese patients in Taiwan with terminal cancer: a literature review

To maintain dignity, patients with terminal cancer must be able to do things in their own way, to make their own decisions, and to preside over their own dying. Among the tasks considered essential for patients with terminal cancer is deciding where they prefer to die. The actual place of death has been recognized in hospice care as indicating quality of care. Approximately two-thirds of patients with cancer, when asked about the preferred place of death, say they wish to die in their own homes. Patients with terminal cancer dying at home may find physical and emotional comfort there. Home is a place where people may feel safety and a sense of belonging. In dying at home, patients with terminal cancer also may have a greater chance to control their environment, more autonomy and privacy, and a sense of normality. In this article, special cultural meaning of dying at home for the Chinese patient and the family is reviewed. It is essential for health care professionals to understand Chinese cultural beliefs and values related to dying at home in order to provide culturally sensitive care for Chinese dying patients and their families and to enhance their sense of control over the unknown process of dying.     

Negotiating life for the dying: hospice and the strategy of tactical socialization

Hospice is often discussed as a social movement that is attempting to change not only the way particular patients experience dying, but the nature of death and dying for society as a whole. Participant observation research was conducted in the home care components of and a free-standing inpatient facility associated with several northeastern hospice organizations over the course of almost three years. The data are reported using negotiated order theory as a framework for understanding the hospice movement, and tactical socialization is identifide as a majar strategy of hospice workers for accomplishing their goals.     

Concept Analysis of Good Death in the Japanese Community

PURPOSE: To describe the meaning of a good death in the Japanese community. ORGANIZING FRAMEWORK: Rogers's (2000) concept analysis strategy. METHODS: A review of the literature was done in March 2004, with a focus on older adults' experiences of good death in the Japanese community; "good death" was the subject heading or key words; and literature was published in English or Japanese. FINDINGS: Attributes of a good death include sociocultural norms, personal experiences, and continuous process. The person's experience of dying, the social context, the patient's autonomy and control over the dying process, and quality of end-of-life health care are the consequences of the concept. When good death occurs, it leads to family satisfaction, positive bereavement process, and work satisfaction for healthcare professionals. CONCLUSIONS: Integration of findings from the concept analysis and field research results in more accurate understanding of good death. Knowing the individual concept of good death enables nurses to provide culturally competent care to achieve an optimum death experience for both patients and families.     

The role of neonatal nursing in palliative care of the newborn

Nursing dying newborns is an inherent part of working in a neonatal intensive care (NICU). Holistic care involves recognizing the physical, emotional and spiritual needs of the dying infant and the family. The present article aims to explore how nurses can provide the best practices in neonatal palliative care. Palliative care is composed of three components: assistance with end-of-life decision making; pain and comfort management, and bereavement support with cultural competence. These issues have implications for improving nursing practice.     

Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto,Canada

PurposeThe purpose of this study was to describe and examine how meanings of home condition negotiations of care for Chinese immigrants with advanced cancer receiving palliative home care in Toronto, Canada.MethodThis focused ethnographic study drew on the tenets of postcolonial theory to examine the social and material circumstances associated with dying at home for Chinese immigrants. Eleven key informants were recruited, in addition to 4 cases comprised of a Chinese immigrant care recipient, primary family caregiver, and home visiting nurse. Individual, open-ended interviews were conducted with each participant, along with observations of home visits.ResultsPalliative care was not viewed strictly as an intrusion that was thrust upon the home without permission or invitation, but an insertion into the routines of the home that was necessary because care recipients recognized the need for palliative care providers to help navigate the system and negotiate dying at home. Consequently, care recipients and family caregivers also sought to minimize the intrusions of palliative care by preserving everyday routines and engaging with family and friends.ConclusionsAlthough the study was focused on Chinese immigrants, the findings resonate with and speak more broadly to the contextual, systemic, social, and material circumstances associated with dying at home for immigrants with advanced cancer. Nurses providing palliative home care to immigrants may begin to critically examine assumptions of “cultural” beliefs about cancer and end-of-life care and look beyond identifying ethno-specific practices, but come to recognize how nurses are implicated in a culture of palliative care.