En 2009, au Portugal, la fondation Calouste Gulbenkian met en place un programme de soins palliatifs à domicile sur le plateau mirandais, dans la région rurale de Tras-os-Montes. Ce projet a inspiré à la journaliste ce livre en deux parties : une réflexion à la fois intime et universelle, aux accents poétiques et philosophiques, sur la fin de vie, suivie des portraits d'individus mourants.
The study examined the influence of training on first-year nursing department students’ attitudes on death and caring for dying patients. Utilizing the experimental model, the study sample consisted of 81 first-year students attending the nursing department of a university. Death Attitude Profile-Revised and Frommelt Attitude toward Care of the Dying Scale were used for data collection. Data analysis included means, standard deviation, and t test for related samples. Student attitudes toward death were measured as 146.43 (16.741) and 152.75 (15.132) for pre- and posttraining, respectively. Student attitudes toward caring for dying patients were established to be 103.02 (7.655) during pretraining period and 111.02 (10.359) at posttraining period. The difference between pre- and posttests for mean attitudes toward death and caring for the dying patient was statistically significant. Study results determined that training was effective in forming positive student attitudes toward death and caring for dying patients.
St Christopher’s Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher’s Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher’s Hospice. Taking Habermas’ concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.
I explore the complexities of moral experience during the phase of life after a terminal diagnosis by examining the experiences of one woman living as a hospice patient in St. Croix, US Virgin Islands. Introducing the notion of “existential ambivalence,” I show that this can be a period of deep uncertainty, in which what matters to individuals can shift and fluctuate through time, not necessarily lining up with collective ideals of “the good death.” I focus on a promise this woman made that continued to pull her toward a version of living well while she was also pulled toward dying.
Building on work on post-Fordist affect, we argue that the group-based and person-centered forms of production in mining and milling, respectively, produce contingent conceptualizations of culture, identity, and personhood and, in turn, of dying and death. The “communal solidarism” characteristic of post-mining milieu engenders senses of dying and death entailing a communal merging of erstwhile individual selfhoods. In post-milling milieu dying and death are conceptualized as individuated, but subject to social evaluation. The evaluative criterion in this regard is ability to “perform” dying and death in ways that reflect the valorized essence of local culture, identity, and personhood, “resilient autonomy.”
In this introduction to the special issue, Life’s End: Ethnographic Perspectives, we review the field of anthropological studies of death and dying. We make the argument that, largely because of its sub-disciplining into the larger field of the anthropology of religion, ritual and symbolism, the focus of anthropological research on death has been predominantly on post- rather than pre-death events, on death’s beginnings rather than life’s ends. Additionally, we argue that an anthropological aversion to the study of dying may also lie in the intimacy of the discipline’s principal method, ethnography. Contrastingly, we argue that this very methodological intimacy can be a source of insight, and we offer this as a rationale for the special issue as a whole, which comprises eight ethnographic studies of dying and social relations at life’s end from across Africa, Australia, Europe, and North America. Each of these studies is then summarized, and a rationale for their presentation around the themes of “structures of dying,” “care for the dying,” “hope in dying,” and “ending life” is presented.
In recent years, the common and mundane dying has begun to take place in the public space of the Internet. Among the blogs about food, fashion, travel, and other joyful aspects of life, blogs about severe disease and dying have appeared. The aim of this article is to describe some characteristic features of a sample of cancer blogs and to discuss them in the light of Zygmunt Bauman’s theory of the rationalization of death in modernity and theories about networked media, especially the theories about “affective labor” and “ambient intimacy” by McCosker, Darcy, and Pfister. It will then be argued that an affective communication is performed in and through these cancer blogs, where not only language but also the deficiencies of language—and what is called shared ineffability—might be valuable and meaningful (although not unproblematic) as part of a late modern approach to death, and in the practicing of the art of dying.
This study aims to elicit the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward dying, death, and the afterlife; to identify whether differences are observable between middle-aged and elderly participants and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the belief in an omnipotent and omniscient God and in an afterlife strongly marks the attitudes of first- and second-generation Muslims in Belgium toward life and death.
Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.
In this Australian, constructivist grounded theory study, we undertook in-depth interviews with 11 dying people and 8 caregivers to examine their perspectives on role relations at end-of-life. We found that situations of role alignment between dying people and their family and friends support positive relational and practical outcomes, whereas role mismatch can cause considerable distress. Factors contributing to role mismatch at end-of-life were: dying people and their caregivers’ efforts to shield each other from emotional harm; fear of social exclusion; and unwanted focus on the dying identity. Our findings highlight a need for flexibility and adaptability in end-of-life role relations.
BACKGROUND: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life.
AIM: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research.
DESIGN: An adapted meta-narrative review approach.
DATA SOURCES: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument.
RESULTS: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals.
CONCLUSION: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative.
Introduction: Older patients with hip fracture have a 20% to 30% mortality rate in the year after surgery. Nonoperative care has higher 1-year mortality rates and is generally only pursued in those with an extraordinarily high surgical risk. As the population ages, more patients with hip fracture may fall into this category. The orthopedic surgeon is typically the main consultant responsible for deciding between surgery and conservative management, and the reasoning behind one decision over the other is often poorly understood. We undertook a review to determine decision-making tools for surgery in high-risk patients with hip fracture.
Materials and Methods: A review was conducted using PubMed to determine articles published using the terms palliative care, conservative care, nonoperative, hip fracture, orthopedic procedures, fracture fixation, and surgery. Our search resulted in 13 articles to review. These were further screened to determine tools for use in surgical decision-making.
Results: Several potential decision-making tools were found in our search. The potential tools to identify patients who would benefit from nonoperative treatment included the Palliative Performance Scale for severe dementia, the Lawton Instrumental Activities of Daily Living and Katz Activities of Daily Living scales for prefracture immobility, a combination of clinical signs and laboratory tests to determine risk of imminent death, and the Charlson Comorbidity Score for additional serious comorbidities. No tools have been prospectively tested in a clinical setting.
Discussion: Evaluation of each patient using a variety of decision making tools should help the orthopedic surgeon determine which patients would be better suited to non-operative management. After determining the benefit of non-operative care, they must effectively allow the fracture to heal while ameliorating pain. Palliative care physicians can fulfill this role by providing support and symptom relief.
Conclusions: Surgical decision-making for hip fracture repair in the elderly patients is not straight forward. Several tools may be helpful to the surgeon in determining who may be better suited for nonoperative care or a palliative care referral. Prospective data do not exist in these decision-making tools.
The traditional living donor was very healthy. However, as the supply-demand gap continues to expand, transplant programs have become more accepting of less healthy donors. This paper focuses on the other extreme, asking whether and when individuals who have life-limiting conditions (LLC) should be considered for living organ donation. We discuss ethical issues raised by 1) donation by individuals with progressive severe debilitating disease for whom there is no ameliorative therapy; and 2) donation by individuals who are imminently dying or would die by the donation process itself.
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies.
METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy.
FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills.
CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.
AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.
METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.
RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.
CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.
The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (alpha of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.