Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards

Nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards Background and aim. The aim of the study was to explore the experiences of dying patients and nurses working in three elderly care wards focusing on the management of care for dying patients. The majority of patients who die in hospital are over the age of 65 and evidence suggests that three fifths are over the age of 75. Older patients pose tremendous problems and challenges to nurses and doctors regarding the provision of good terminal care, particularly in relation to developing effective communication. METHOD: An ethnographic research design was chosen. The research sample consisted of 74 patients, 29 nurses and 8 physicians. The principle data collection methods were participant observation and semi-structured interviews. All respondents were interviewed following a period of observation on each of the ward areas. The data obtained from participant observation were then used to structure the interview questions. The purpose of asking questions about meanings associated with observational material was to evaluate the extent to which convergence or divergence of the data was taking place. FINDINGS: The findings demonstrate that the care of older dying patients was defined by a lack of 'emotional engagement' with the patient and the institutionalized nondisclosure of information about death and dying. The study raises issues concerning the lack of effective communication about terminal diagnosis and the strategies used by nurses and doctors for disclosing information about death and dying. The findings suggest that although nurses provide individual care to dying patients, much of this was aimed at meeting patients' physical needs. Nurses reported psychosocial aspects including spiritual and emotional care to be important, although there was little evidence of them being orientated towards this in practice. CONCLUSION: The indicative conclusions from this study suggest that terminal care for some elderly patients remains hampered by a reluctance of nurses and doctors to be more open in their communication about death. It would appear that hospital culture and the mores, beliefs and ideologies that emanate from the biomedical model, significantly shape the experiences of older dying patients.     

Nurses' experiences in giving bad news to patients with spinal cord injuries.

Nurses, as well as patients and their families, have unique communication needs when a patient has suffered a spinal cord injury. This qualitative study used grounded theory methods to describe how nurses working on an acute spinal cord unit manage this sensitive situation. Twenty-two registered nurses participated in focus group interviews designed to elicit their experiences with patients and their needs as healthcare professionals. Five major themes emerged from analysis of the data: being the bearer of bad news, strategies used by the nurses to give bad news, the role of the patients, the role of the families, and meeting the nurses' needs. The findings indicate that nurses are placed in a position of being the bearers of bad news; it is not always possible or even desirable to avoid the situation. To maintain the patients' hope and preserve their own integrity, nurses must develop strategies to address the patients' needs.     

Nurses' and patients' perceptions of expert palliative nursing care

AIM: This paper reports a study of the perceptions of patients and nurses of palliative care and, in particular, the concept of the expert palliative nurse. BACKGROUND: Palliative care is a growing specialty and is practised globally. There is, however, limited information on patients' views about palliative care. While the idea of expertise in nursing is not new, few studies have explored the concept of the expert nurse in palliative care. Some evidence exists on palliative nurses' perceptions of their care, that it is supportive and involves maintaining therapeutic relationships with patients. Facing a terminal illness has been identified as a stressful and fearful experience that affects all aspects of life. It has also been revealed that dying patients may have unmet care needs, mainly in the areas of pain and symptom control, emotional support, and spending time alone. METHODS: A phenomenological study was carried out, using in-depth interviews and thematic content analysis. A convenience sample of 22 Registered Nurses and 22 dying patients was interviewed in 1996-1997. FINDINGS: Dying patients had a desire to maintain independence and remain in control. Palliative care nurses experienced both effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients and attempting to control patients' pain and distressing symptoms. Patients and nurses agreed that the two most important characteristics of an expert palliative nurse were interpersonal skills and qualities such as kindness, warmth, compassion and genuineness. CONCLUSION: Although the study was conducted in the United Kingdom, the findings have relevance for palliative care practice globally in terms of dependence, issues of patient choice, nurses being interpersonally skilled and building therapeutic relationships with patients.     

Critical care nurses' experiences of grief in an adult intensive care unit

Title.  Critical care nurses' experiences of grief in an adult intensive care unit.
Aim.  This paper is a report a study of critical care nurses' experiences of grief and their coping mechanisms when a patient dies.
Background.  The goal of patients entering critical care is survival and recovery. However, despite application of advanced technologies and intensive nursing care, many patients do not survive their critical illness. Nurses experience death in their everyday work, exposing them to the emotional and physical repercussions of grief.
Method.  This study adopted a Heideggerian phenomenological approach, interviewing eight critical care nurses. Data collection occurred in 2007/8. Interviews were transcribed verbatim and themes generated through Colaizzi's framework.
Findings.  Participants reported feelings of grief for patients they had cared for. The death of a patient was reported as being less traumatic if the participant had perceived the death to be a 'good death', incorporating expectedness and good nursing care. They described how a patient's death was more significant if it 'struck a chord', or if they had developed 'meaningful engagement' with the patient and relatives. They denied accessing formal support: however, informal conversations with colleagues were described as a means of coping. Participants exhibited signs of normalizing death and described how they disassociated themselves emotionally from dying patients.
Conclusion.  There are many predisposing factors and circumstantial occurrences that shape both the nature of care of the dying and subsequent grief. Repeated exposure to death and grief may lead to occupational stress, and ultimately burn out. Emotional disengagement from caring for the dying may have an impact on the quality of care for both the dying patient and their family.     

Effective communication in an intensive care setting: nurses' stories

Effective communication has been long considered an important aspect of nurse-patient interactions. However, follow up of people who have been patients in intensive care units (ICUs) indicates that nurses' communication in this setting is at times unsatisfactory. Patients have described how they were left feeling frustrated and alienated by this failure in the communication process and unconscious patients report how they were aware of nurses' attempts at communication with them while unconscious (Lawrence, 1995). Because most of the research to date has focused on patients' perceptions of nurses' communication in an intensive care unit, this study sought to explore what nurses believed constituted effective communication in an intensive care setting. Therefore, a qualitative study was undertaken to explore nurses' perceptions of effective communication with patients in an intensive care setting. The stories of four intensive care nurses were utilized as the means of data collection. The analysed data revealed the following themes: nurses' perceptions, presencing and reassurance. The findings have relevance for nurses in many settings.     

Providing end-of-life care to patients: critical care nurses' perceived obstacles and supportive behaviors.

BACKGROUND: Critical care nurses care for dying patients daily. The process of dying in an intensive care unit is complicated, and research on specific obstacles that impede delivery of end-of-life care and/or supportive behaviors that help in delivery of end-of-life care is limited. OBJECTIVE: To measure critical care nurses' perceptions of the intensity and frequency of occurrence of (1) obstacles to providing end-of-life care and (2) supportive behaviors that help in providing end-of-life care in the intensive care unit. METHODS: An experimental, posttest-only, control-group design was used. A national, geographically dispersed, random sample of members of the American Association of Critical-Care Nurses was surveyed. RESULTS: The response rate was 61.3%, 864 usable responses from 1409 eligible respondents. The highest scoring obstacles were frequent telephone calls from patients' family members for information, patients' families who did not understand the term lifesaving measures, and physicians disagreeing about the direction of a dying patient's care. The highest scoring supportive behaviors were allowing patients' family members adequate time alone with patients after death, providing peaceful and dignified bedside scenes after death, and teaching patients' families how to act around a dying patient. CONCLUSIONS: The biggest obstacles to appropriate end-of-life care in the intensive care unit are behaviors of patients' families that remove nurses from caring for patients, behaviors that prolong patients' suffering or cause patients pain, and physicians' disagreement about the plan of care.     

Nurse-patient relationships in palliative care

AIM: The aim of this paper is to report a study exploring aspects of nurse-patient relationships in the context of palliative care. BACKGROUND: Although there are numerous studies addressing nurse-patient relationships, little research has focused on these in the context of palliative are. Furthermore, no previous study has examined the relationship in the Chinese context. METHODS: Qualitative data were collected from 10 hospice nurses and 10 terminally ill patients by means of open ended unstructured interviews. Respondents were asked to reflect on practices and incidents that would allow an understanding of the meaning of nurse-patient relationships in palliative care. RESULTS: Four major categories emerged from the perspectives of patients and nurses: (1) forming a relationship of trust; (2) being part of the family; (3) refilling with fuel along the journey of living and dying; and (4) enriched experiences. Responses revealed that a relationship of trust is formed, and that nurses are not only regarded as health professionals, but also become part of the family or a good friend. Nurses who develop trusting relationships demonstrate a holistic approach to caring, show their understanding of patients' suffering, are aware of their unvoiced needs, provide comfort without actually being asked, and are reliable, proficient, competent and dedicated in their care. CONCLUSION: Trust, the achievement of the goals of patients and nurses, caring and reciprocity are important elements of nurse-patient relationships in palliative care. Such relationships not only improve patients' physical and emotional state, but also facilitate their adjustment to their illness, ease pain and can ultimately lead to a good death experience. It is nurses' personal qualities and skills, which are embedded in these relationships, that constitute excellence in nursing care. Nurses also derive satisfaction and are enriched through the relationships.     

Providing a "good death": critical care nurses' suggestions for improving end-of-life care.

BACKGROUND: Providing appropriate end-of-life care has become a primary concern of nurses and the public. The highly technological critical care environment may not facilitate such care. OBJECTIVE: To collect suggestions from critical care nurses for improving end-of-life care in intensive care units. METHODS: A geographically dispersed, random sample of 1409 members of the American Association of Critical-Care Nurses was sent a 72-item survey on perceptions of end-of life care. The survey included a request for suggestions on ways to improve end-of life care. RESULTS: Of the 861 critical care nurses who responded to the survey, 485 offered 530 suggestions for improving end-of-life care. Providing a "good death" was the major theme; specific suggestions included ways to help ensure death with dignity and peace. Barriers to providing good deaths included nursing time constraints, staffing patterns, communication challenges, and treatment decisions that were based on physicians' rather than patients' needs. Suggestions for providing a good death included facilitating dying with dignity; not allowing patients to be alone while dying; managing patients' pain and discomfort; knowing, and then following, patients' wishes for end-of-life care; promoting earlier cessation of treatment or not initiating aggressive treatment at all; and communicating effectively as a health-care team. Educational initiatives for professionals and the public were also suggested. CONCLUSIONS: Implementation of specific suggestions provided by experienced critical care nurses might increase the quality of end-of-life care, facilitating a good death for intensive care patients.     

Caring for Dying Patients Who Have Air Hunger

Purpose: To understand nurses' experiences of caring for dying patients who have 'air hunger.' When air hunger occurs in people who are close to death, it often triggers increasing panic and breathlessness. Describing this phenomenon is an initial step toward a more informed and consistent response to air-hungry patients.
Design and Methods: Phenomenological study of 10 hospice, long-term care, oncology, or emergency medicine nurses who cared for air-hungry dying patients. Analysis was based on van Manen's guidelines for interpretive phenomenology. Interviews with two family members who witnessed their dying spouses suffer from air hunger were used to complement the nurses' accounts.
Findings: Themes of (a) the patient's look–panic beckons, (b) surrendering and sharing control, and (c) fine-tuning dying indicated ways nurses responded to relieve a patient's air hunger, including being prepared before air hunger occurs, calming patients and families, medicating patients, improvising care, attending to family members' needs, and drawing a distinction between palliating and killing.
Conclusions: The three themes provide a framework for a new vision of "doing everything" for a dying person who suffers from air hunger. Care encompasses knowing what to do as well as how to stay present during suffering.     

Nursing the dying: essential elements in the care of terminally ill patients

AIM: To verify those aspects of care that nurses view as important when assisting patients beyond therapeutic possibilities and who are not under intensive care. OBJECTIVES: (1) To find out how nurses cope with daily confrontation with the death and suffering of dying patients, (2) To identify whether nurses feel it is important to have communication skills in order to assist the terminally ill patient, (3) To estimate nurses' degree of work satisfaction, and (4) To explore the humane aspects of nursing assistance to the dying. METHOD: Data were collected in January and February of 2002 by means of individual semistructured interviews with 14 nurses from the unit of haematology at a general hospital in the city of Sao Paulo, Brazil. Interviews were recorded, transcribed, and further analysed according to the qualitative method proposed by Bardin (1977). RESULTS: We found that Brazilian nurses caring for dying patients should be receiving psychological and emotional support. Results also highlighted different individual approaches in the endeavour to communicate with terminally ill patients, as well as the avoidance patterns developed by some nurses. The latter appeared to be as a result of personal difficulties in coping with the reality of human suffering and death. Finally, there is a need for better preparation in communication skills for nurses caring for terminally ill patients. CONCLUSION: Although the number of interviewed nurses in our study was small, the results corroborated the findings of other studies on the subject.     

Educating nurses to care for the dying in Hong Kong: a problem-based learning approach

Caring for dying patients is an essential and major aspect of nursing care. However, previous studies have revealed that nurses felt uncomfortable and inadequate in dealing with the dying patients and their families. This study reports the effectiveness of a problem-based learning approach in death education among a group of registered nurses in Hong Kong. Three problems, with three segmented scenarios related to cancer nursing, were used. Students went through the problem-based learning process and documented their learning throughout the course in journals. A total of 72 sets of journals were collected and analyzed. The strategies of within case and cross-case analysis were employed. The within case analysis explored the learning development of students for each problem. The cross-case analysis compared and contrasted findings of the within case analysis. Three themes have been derived from the findings. They were: nurses acknowledging their emotions in facing death and dying, a need for the nurses to be better equipped in communication and counseling, and a holistic and family-centered approach to care. This study provides evidence showing that problem-based learning is an effective strategy to enhance nurses' self-awareness of death and dying issues, and to stimulate nurses to formulate a plan that addresses the physical, psychological, and social aspects of care. Findings also reveal that nurses need to take into account the particular reactions of death and dying in the Chinese culture when planning care.     

Chronic pain and distress among elderly in the community: comparison of patients' experiences with enrolled nurses' assessments

AIM: This study compared elderly patients' reported experiences of pain and distress with enrolled nurses' assessments and related potential differences to patient and enrolled nurse characteristics. BACKGROUND: Many elderly suffer from chronic pain but few studies have focused on this group of patients. METHODS: Data were collected through personal interviews with 38 patients and questionnaires completed by 38 enrolled nurses. FINDINGS: Enrolled nurses underestimated patients' experiences of physical pain, physical discomfort, breathing problems, resignation, and dependency. Pain and distress were overestimated by enrolled nurses who had lower scores on three of the five personality scales used. In contrast, enrolled nurses who had higher scores on these personality scales tended to underestimate the patients' pain and distress. CONCLUSIONS: There is a need to develop staff training programmes in order to optimize the care for elderly patients with chronic pain in the community.     

Privacy in hospital

Privacy during hospitalization can be jeopardized as caring situations are often intimate. The aims of the current study were to explore patients' and nurses' attitudes towards privacy and to study whether nurses' perceptions of patients' privacy needs corresponded with the patients' own reported needs. Two questionnaires were used for the data collection, which included 120 consecutive patients and 42 nurses responsible for the participating patients' individual care. The main findings indicated that patients and nurses agree in the ratings of the major components of privacy in general, but privacy in hospital was estimated more highly by the nurses than by the patients themselves. Being allowed to talk to the physician in private was given the highest preference. Patients in long-term care had higher privacy preferences than those in acute care. An explanatory approach is needed to study the need for privacy in different caring situations and how privacy needs could be recognized and met by nurses.     

Nurses' attitudes towards perinatal bereavement support in Hong Kong: a pilot study

The purpose of this study is to explore nurses' attitudes towards perinatal bereavement care and to identify required support and training needs for nurses on bereavement care in Hong Kong. Data were collected through a structured questionnaire, and 110 nurses were recruited from the obstetrics and gynaecology unit in one of the largest public hospitals in Hong Kong. The majority of nurses held a positive attitude towards bereavement care. A significant difference in nurses' attitudes towards bereavement support was found in terms of demographics, practical experiences and training factors. The results showed that only 25.5% (n = 28) of nurses had bereavement-related training. In contrast, 90.9% of nurses showed a positive response to grief training and 90.0% would share experiences with colleagues and seek support when feeling under stress. The findings also suggest that nurses' attitudes towards bereavement care are positively correlated with bereavement care training needs (r = 0.53) and hospital policy support (r = 0.55). Hong Kong nurses' attitudes towards perinatal care emphasized their need for increased knowledge and experience, improved communication skills, and greater support from team members and the hospital. These findings may be used for Hong Kong health care professionals to improve support of nurses, to ensure delivery of sensitive bereavement care in perinatal settings and to enhance nursing school curricula.     

Measuring intensive care nurses' perspectives on family-centered end-of-life care: evaluation of 3 questionnaires.

BACKGROUND: Attempts to improve end-of-life care increasingly focus on family-centered care, but few validated assessment tools exist. OBJECTIVES: To evaluate 3 new short questionnaires measuring nurses' perspectives on family-centered end-of-life care in the intensive care unit and to show the usefulness of the questionnaires. METHODS: Principal components analysis of data from 141 critical care nurses evaluating care given to families of 218 patients was used to develop domain scores for number of nursing activities with each family, number of barriers experienced, and nurses' satisfaction that the family's needs were met. Random effects models were used to test associations between critical care processes and outcome. RESULTS: Nursing activities fell into 2 domains: general and culture-related communication/support. Barriers consisted of 2 domains: patient/family barriers and system/team barriers. Meeting the needs of patients' families represented a single dimension. In a path model based on domain scores, general activities had significant associations with both nurse communication and meeting families' needs; patient/family barriers, with nurse communication; and nurse and physician communication, with meeting families' needs. In a path model based on total activities and barriers scores, total activities and total barriers had significant associations with nurse communication ratings and meeting families' needs. Patients' and nurses' characteristics were not significant independent predictors of meeting the needs of patients' families. CONCLUSIONS: The 3 questionnaires provide a consistent, valid picture of nurses' perspectives on family-centered critical care and may be useful in evaluating family care processes and outcomes and in targeting areas for improvement.