BACKGROUND: Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.
METHODS: A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.
RESULTS: Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.
CONCLUSION: Future research should focus on ways to involve people with dementia in decision-making through supported means.
OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
BACKGROUND: Personal experiences with death and dying are common among medical students, but little is known about student attitudes and emotional responses to these experiences. Our objectives were to ascertain matriculating medical students' experiences with death and dying, describe the range of students' emotional responses, and identify reactions, behaviors, and perceived roles related to these and future experiences with death.
METHODS: We provided a writing prompt to newly matriculated medical students asking them to "reflect on experiences you may have had with family or friends near the end of life." Content analysis was performed to identify themes in the responses.
RESULTS: The 104 students in the entering class submitted 90 individual free-text responses (87%). Most (57%) students specifically mentioned at least 1 personal experience with death, with a range of emotional responses including sadness (29%), surprise (14%), and guilt (12%). Distinct themes emerged on content analysis including personal experiences with death, anticipated response to death in future, changes in body or mind of the dying person, thoughts and observations about others, and cognitive or existential responses. Few students wrote about religion or spirituality (8%) or palliative or hospice care (2%).
CONCLUSIONS: An understanding of students' premedical school experiences and emotional reactions to death may help educators frame curricula around end-of-life care. Educators could apply enhanced awareness to help students process their own experiences as they begin caring for patients and to focus on areas that were underrepresented in students' comments, such as religion, spirituality, palliative care, and hospice.
Nurse educators have a unique role to prepare nursing students for all aspects of patient and family care, from birth through death. Knowing that death is inevitable is not the challenge. Preparing nursing students to cope with death and address personal and community myths about death and dying are the challenges. Opportunities for students to examine personal and community associations with death are essential for nursing students preparing to enter the field. Biophysiological processes and treatment protocols are an essential part of each course; however, one course in a Department of Nursing in a small university in the Midwestern United States provides students the opportunity to reflect on death and dying and includes the experience of creating a tangible symbol to “hold on to” as they professionally and thoughtfully work with dying patients and their families, as well as cope with their own experiences of loss and grief in their careers.
Oncology nursing is a rewarding, challenging, and ever-changing specialty. Oncology affords the nurse an opportunity to care for individuals with unique, complex issues during his or her cancer journey. I assumed that, at some point, I would care for a patient who may not have a positive outcome. It became clear to me that I would be there during the dying process and, subsequently, face issues related to the death of a patient. I really thought I knew what I was getting into; however, I now understand that I was not sufficiently prepared.
OBJECTIVES: To determine the accuracy of predictions of dying at different cut-off thresholds and to acknowledge the extent of clinical uncertainty.
DESIGN: Secondary analysis of data from a prospective cohort study.
SETTING: An online prognostic test, accessible by eligible participants across the UK.
PARTICIPANTS: Eligible participants were members of the Association of Palliative Medicine. 99/166 completed the test (60%), resulting in 1980 estimates (99 participants × 20 summaries).
MAIN OUTCOME MEASURES: The probability of death occurring within 72 hours (0% certain survival-100% certain death) for 20 patient summaries. The estimates were analysed using five different thresholds: 50/50%, 40/60%, 30/70%, 20/80% and 10/90%, with percentage values between these extremes being regarded as 'indeterminate'. The positive predictive value (PPV), negative predictive value (NPV) and the number of indeterminate cases were calculated for each cut-off.
RESULTS: Using a <50% versus >50% threshold produced a PPV of 62%, an NPV of 74% and 5% indeterminate cases. When the threshold was changed to =10% vs =90%, the PPV and NPV increased to 75% and 88%, respectively, at the expense of an increase of indeterminate cases up to 62%.
CONCLUSION: When doctors assign a very high (=90%) or very low (=10%) probability of imminent death, their prognostic accuracy is improved; however, this increases the number of ‘indeterminate’ cases. This suggests that clinical predictions may continue to have a role for routine prognostication but that other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.
Background: The quality of the dying experience among older adults should improve with a better understanding of the dying experience and its association with the place of death in Mainland China.
Objective: This study investigated the relationship between the dying experience and place of death among older Chinese adults in the context of an urban-rural bifurcated system.
Design: We used the end-of-life module data from the China Longitudinal Aging Social Survey conducted in 2014 and 2016 with an eligible sample of 352 decedents ages 60 and older. Facial expression and sadness at the end of life were indicators of the dying experience in the present study. We performed multiple regression models to examine the association between the place of death and dying experience after adjusting for an ecological array of factors at the individual, family, and community levels.
Results: The urban–rural differences in the association between facial expression at death and place of death were identified (interaction term: ß = 0.16, p = 0.004). Among the decedents with a rural residence status, dying in a hospital was associated with a more peaceful facial expression at death than dying at home (p < 0.001). Among the decedents with an urban residence status, the place of death was not significantly related to the dying experience.
Conclusion: Although home is perceived as a common place for death, the findings revealed that dying at home was less positive for rural older adults compared with dying in hospital. Bridging the gaps between urban and rural areas is necessary for the reform and construction of health care and long-term care systems in China.
This essay presents an account of the influence of the researcher's body within qualitative death research. It suggests that appropriate reflection on the researcher's subjectivity should consider his or her own bodily performances and experiences. At the beginning I offer some introductory thoughts in this regard, referring to Plessner's distinction between 'being a body' (Körper-haben) and 'having a body' (Leib-sein). Here, I highlight the importance of autoethnographic approaches for the understanding of bodily experiences, such as sensations, perceptions and their aesthetics. To demonstrate the importance of considering the researcher's body within the research process, I then draw on my own autoethnographic material, discussing how I experienced in my body frightening and disturbing feelings while dealing with the dead. This material was collected during a six-month internship from April to September 2016 at a small funeral home in Thuringia, Germany. I explain how I was socialised regarding my bodily behaviour towards the dead years ago and how I acquired the knowledge that touching a corpse is often taboo; describe my bodily reactions when I saw a dead body for the first time during my internship and how these reactions influenced my fieldwork; relate how my senses and perceptions when first touching a corpse led to extreme responses that drew most of my attention to the haptic and sensual dimension, making me unable to notice other information in the field; and show how these bodily experiences crossed borders and influenced my life beyond my field research.
A significant proportion of secondary school pupils in the UK have experienced the death of someone close. Bereavement in childhood can have a significant and long lasting impact. The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them. A total of 31 pupils, 108 parents and 37 staff from a large Scottish secondary school took part and data was collected using online questionnaires. A high proportion of pupils had experience of major loss or bereavement and showed significant awareness of their feelings and responses to these. It appears that young people primarily seek support from family and friends, but the role of peers is less well recognised by parents and teachers. The school was recognised as a source of support mainly by teachers.
Nous ne pourrons vivre littéralement notre mort que lorsque, existant toujours, nous mourrons, c’est-à-dire, en l’instant même de notre mort. Nul ne peut mourir à ma place. Je peux donner ma vie pour quelqu’un, mais je ne peux pas mourir à sa place au sens strict. Notre propre mort nous appartient, en ce sens, et nous avons le droit de ne pas en être privé. Et surtout, elle concerne notre vie entière, jamais un instant isolé, abstrait, qui n’existe pas. Le mourant est un vivant. Au moment ultime, il se découvre tout entier en l’acte de mourir. Mourir est un acte. Il faut pouvoir agir sa mort, la faire sienne, la vivre dans le respect de son for intérieur. Qu’en est-il du sens de « mourir », dans l’expression « mourir dans la dignité » ? On l’entrevoit d’emblée, le vrai sens, le sens concret, d’un point de vue philosophique, est celui de mourir humainement. Il s’agit de pouvoir faire sienne sa mort, la vivre dans le respect de sa dignité proprement humaine de femme ou d’homme libre.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
This study investigates medical trainees' experiences with dying and death, by means of semistructured interviews. Nine medical students and nine residents reported a total of 114 experiences. The great majority of these experiences took place during the final year of medical school. The authors identified the latent characteristics, which illustrate an in-depth understanding of the significance of the described experiences. Three main themes emerged: circumstances of death, personal relationship, and one's own role. The age of the dying person, the extent of suffering, time frame and setting, and the patients' behaviors were factors that influence the perceptions of the experiences. The interviewees reported powerful emotional consternation by the patients' deaths with whom they had developed a close relationship. Failure, helplessness, and guilt were negatively associated perceptions of one's own role. This study illustrates the tension between emotional concern and professional detachment. It highlights the continuing existence of a physician image, in which control represents the key issue.
BACKGROUND: Cancer patients who have reached the terminal stage despite attempts at treatment are likely to experience various problems, particularly as they encounter increasing difficulty in doing what they were able to do easily, and their physical symptoms increase as the disease advances. The purpose of this study is to explore how terminal cancer patients who have not clearly expressed a depressed mood or intense grief manage their feelings associated with anxiety and depression.
METHODS: Eleven terminally ill patients with cancer who were receiving symptom-relieving treatment at home or in palliative care units were interviewed. Interviews were generally conducted weekly, two to five times for each participant. In total, 33 interviews were conducted, and the overall interview time was 2027 min. Data were analyzed via qualitative methods.
RESULTS: The following five themes were extracted regarding the experience of managing feelings associated with anxiety and depression when facing death: "I have to accept that I have developed cancer," "I have to accept the undeniable approach of my own death," "I have to accept my need for assistance," "I have to accept this unsatisfactory circumstance" and "I have to accept this as my destiny and an outcome of my life."
CONCLUSION: The present study revealed key themes related to how patients come to terms with their impending death. Nurses are required to comprehend the patients' complicated mental patterns that are expressed in their daily languages. Furthermore, the findings clarify the necessity for nurses to help patients understand the acceptance of a terminal disease state during a patient's final days.
A previous article in this journal examined some aspects of the enduring influence of Elisabeth Kübler-Ross's "five stages" model through a sampling of recent American textbooks in selected academic disciplines and professional fields. This article offers a parallel sampling of 47 textbooks published in 10 different countries outside the United States. The questions to be answered are as follows: Does the "five stages" model appear without significant change in the textbooks described here? Is the "five stages" model applied in these textbooks to issues involving loss, grief, and bereavement as well as to those involving terminal illness and dying? Is the "five stages" model criticized in some or all of these textbooks? If so, is the criticism sufficient to argue that, while the "five stages" model might be presented as an important historical framework, it should no longer be regarded as a sound theory to guide contemporary education and practice?
Delivering comprehensive end-of-life care to dying patients must involve addressing physical symptoms and psychosocial concerns. Care pathways have been introduced to support health care teams in delivering this care. This retrospective chart review explores the contributions of the Spiritual Care Team in the care of dying patients. They offer a range of interventions which include supportive care, religious and spiritual support. This study was one step towards appreciating the contributions of the Spiritual Care Team.
Fifty years ago, Elisabeth Kübler-Ross' On Death and Dying provided a model of dying as stages of coping with impending loss of one's life. She sought to give dying hospital patients a voice; the result gave a new model for speaking about dying and grieving. This paper examines the model and religious appropriations and crticism of her theme of death as loss.
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 (a 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.
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.
Context: Nurses play an inevitable role in providing compassionate care and support to dying patients and their families. However, it has been a bone of contention that whether the nursing curriculum is sufficiently set to achieve this goal.
Aims: The primary objective of this study is to assess the attitude of nursing students attending a private nursing school in Central Travancore region toward the care of dying using the Frommelt Attitude Toward Care of the Dying Scale Form-B (FATCOD-B).
Methodology: FATCOD-B was introduced among 146 participants and an arbitrary cutoff of 65% of the total score were chosen with those scoring more than that were assumed to have a positive attitude. A principal component analysis was done to identify the key constructs and mean score of the items within these identified constructs were calculated.
Results: The positive attitude toward dying was shown by 39% of participants. Most of the students' responses were averaging toward the option uncertain. A statistically significant increase in mean score by 3.15 (P = 0.02) was noticed among those who completed palliative care postings. The keys constructs identified included perception toward the end-of-life care, emotional engagement with the dying, and perceptions with respect to professional engagement with subgroup analysis showing an average mean score (standard deviation) of 4.36 (0.144), 2.25 (0.874), and 3.39 (0.85), respectively.
Conclusion: The revision of the current curriculum incorporating more palliative care postings with specific attention toward handling emotional engagement with the dying may help in developing a positive attitude.
Education and recognition of death anxiety are important for respiratory therapists. A vital component of respiratory therapy is managing mechanical ventilation and dealing with death and dying. For most institutions, respiratory therapy is a vital component of the rapid response team, code team, and trauma team. Removal of mechanical ventilation is a duty primarily bestowed upon the respiratory therapist. Exposure to death, on a frequent basis, can take an emotional toll and lead to burnout, stress, and increased turnover. Managers and leaders in the hospital must make efforts to provide counseling and education to support respiratory therapists and their ongoing exposure to death and dying. This paper examines coping mechanisms for physicians and paramedics, resulting in tools that can be used to provide support to the respiratory therapist.