End of life in an Icelandic nursing home: an ethnographic study

Aim: To examine care of the dying elderly in a nursing home in Iceland. Methods: An ethnographic study design was adopted. The study sample comprised all of the nursing home residents, their relatives, and all of the staff working in the nursing home, but with a particular focus on the 11 registered nurses (RNs) on the site. Data was collected through participant observation, semi-structured group interviews with the RNs, and an examination of the nursing home's official records. Underlying themes were discovered using interpretative phenomenology. Findings: Two main themes emerged: that palliative care is the most important element of care in the home, and that RNs are the pillars of caring for the dying elderly in the nursing home. Conclusions: The findings suggest that RNs' professional knowledge can greatly contribute to the care of dying elderly residents in nursing homes. There seem to be many parallels between the condition and wellbeing of very frail nursing home residents and patients in specialized palliative care units for the elderly. Public awareness of palliative care of the elderly in Icelandic nursing homes should be encouraged.     

Being a nurse in nursing home for patients on the edge of life

Nurses in nursing homes care for patients with complex health problems that need to be followed up by medical treatment. Most patients benefit from the treatment, but for some the treatment seems only to lengthen their death process. Sometimes questions are raised as to whether life-sustaining treatment should be withheld/withdrawn. Decisions related to such questions are difficult to make as some patients are 'on the edge of life', which is understood as a transition between living and dying with an unpredictable outcome, whether the illness will lead to recovery or dying. The aim of this study was to acquire a deeper understanding of what it is to be a nurse in a nursing home for patients on the edge of life. The research design was qualitative, based on hermeneutic phenomenology. Fourteen nurses at two nursing homes were interviewed twice. The result shows that when facing a patient on the edge of life, the nurses were challenged as professionals and as human beings. Two main themes were identified, which included two sub-themes each. The first main theme: 'striving to do right and good for everyone' included the sub-themes 'feeling certain, but accompanied by uncertainty' and 'being caught between too much responsibility and too little formal power'. The second main theme: 'being a vulnerable helper – the prize and the price', contained the sub-themes 'needing emotional protection in professional commitment' and 'feeling undervalued in spite of professional pride'. The essence was: 'being a lonely and enduring struggler between opposite poles'. The findings revealed paradoxes in nurses' work which might threaten nurses' professional identity and put heavy demands on their professional performance. There is a need for formal involvement in end-of-life decisions from nurses, further education and support to nurses related to patients on the edge of life.     

A phenomenological study of early nursing experiences in Hong Kong

The experience of primary professional socialization is crucial for neophytes to learn to become a nurse. These early nursing encounters may also have long-term effects on professional development of individual nurses. However, research into the early experiences of nurses has been poorly documented. This study endeavours to reveal the early lived nursing experience amongst a group of nurses in Hong Kong. This study adopts a phenomenological approach which involves the thematic analysis of the critical incidents provided by 77 subjects. Findings revealed that incidents associated with death and dying, and clinical learning embracing interpersonal relations and professional development, were the most memorable events. Nurses were in general not equipped adequately to communicate with the dying and the grieving relatives. The subjects disclosed that positive clinical encounters confirmed their value of nursing work and motivated them to stay in the profession. Conversely, the negative experiences made them seriously consider leaving nursing. A number of implications for nursing education have been drawn from the research findings.     

Family and staff perceptions of the role of families in nursing homes

Family and staff perceptions of the role of families in nursing homes Admission to a nursing home is generally regarded as the termination of family care and the commencement of institutional care. Research suggests that following placement families are often expected to relinquish their dependent older relative to the bureaucracy of the institution. The aim of this study was to investigate family and nursing home staff perceptions of the role of families caring for residents in nursing homes. A convenience sample of 44 family carers and 78 nursing home staff completed questionnaires, and interviews were conducted with 10 family carers and 10 nursing home staff. The results suggest that family carers perceived themselves to have a greater role in caring for relatives than that perceived by the nursing home staff. Either families overestimated their involvement, or staff underestimated family involvement in caring for residents in nursing homes. Families were mostly satisfied with their role and with the care provided in nursing homes. They perceived nurses as providers of technical care and they perceived themselves as having an important role in providing social and emotional care. Families trusted the clinical judgement of the staff but the staff were reluctant to trust family carers, especially in situations where care involved an element of risk. Family roles were limited by members' own ability to care and the dependency of the resident, while professional responsibility and accountability discouraged nurses from sharing some caring roles. The results indicate that families in this study were more willing to help in nursing home care and were perhaps under-valued as a resource within the nursing home setting.     

Nursing advocacy in an Australian multidisciplinary context: findings on medico-centrism

As a follow-up to a recent study which highlighted the existence of medical dominance in multi-disciplinary team (MDT) meetings, this paper presents research findings from an Australian study which shows that medico-centrism is a key cause of tension within MDTs. The findings are from a 1-year qualitative study in a regional hospital that explored the ethical decision-making of health professionals within an acute care medical unit. This exploration was conducted through an iterative, phenomenological, qualitative research methodology that consisted of open-ended interviews with a multi-disciplinary representation of health professionals and a sample of consumers for whom they care. The paper situates the notion of nursing advocacy within the context of medico-centrism and examines how the nursing profession interfaces with other disciplines. The findings indicate that the professional framework of nursing includes the language of advocacy, whilst the framework of doctors centres around the medical decision-making process. All professional groups made reference to the MDT as the modus operandi for patient-centred care. All participants noted that time and familiarity with patients and their families is essential for patient-centred care and this could be achieved through MDT collaboration. However, doctors who have scant time to spend with patients saw it as their responsibility to direct the decisions of the MDT and viewed the MDT as adding confusion to the decision-making process. Nurses reported that the limited amount of time spent by doctors in patient consultation translated into the need for advocacy. Professional and clinical confidence and experience are noted as necessary to successfully engage in the process of advocacy. The findings of this article indicate that the adoption of an advocacy role by nurses represents an important means through which MDT operation can be enhanced, medico-centrism limited and patient-centred care improved.     

Visiting a nursing home: Relatives' experiences of encounters with nurses

The purpose of this study was to explore and interpret the meaning of relatives' experiences of encounters with nurses when visiting residents in nursing homes. Thirteen relatives of residents in three nursing homes in Sweden were interviewed. The interviews were tape-recorded and transcribed verbatim. The method used was hermeneutical text analysis. Four themes emerged in the analysis and interpretation of the whole text: 'being paid attention to', 'being ignored', 'being involved' and 'being safe and secure'. A further interpretation of the findings shows a deeper understanding of the meaning of relatives. This meaning was revealed as being invited into an encounter with nurses and gave a sense of community but the opposite was being ignored and left outside. This study gives a deeper understanding of the meaning of encounters between relatives and nurses in nursing homes; it also illuminates how these encounters also can affect the care of the residents. This new understanding can hopefully offer support for nurses during their encounters with relatives and optimise the ability to provide a positive outcome for residents in nursing homes.     

Death in the nursing home: resident, family, and staff perspectives

The actual experience of dying in the United States is far different from the expressed desires of most Americans. Although most Americans express a preference for dying at home, 73% of Americans die in medical institutions, with 23% dying in nursing homes (Teno, 2004). In this article, the author examines end-of-life care in the nursing home. A literature review identified more than 100 published articles relevant to end-of-life care in nursing homes. Of these, the author evaluated empirical research studies from the perspectives of residents, family members, and nursing home staff with findings specific to seriously ill nursing home residents. By identifying problematic issues and contributing factors, nurses can modify their practice to improve end-of-life care and substantially reduce suffering for nursing home residents and their families.     

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.     

District nurse involvement in providing palliative care to older people in residential care homes

Although less than 15% of older people in care homes die of a terminal disease such as cancer, many more die following a period of slow deterioration. In the UK, residents of care homes receive their nursing care from primary healthcare providers. This article reports on a study that describes how district nurses and care home managers define their responsibilities when caring for residents who are dying. The findings presented are from a detailed survey of 89 district nurse team leaders and 96 care home managers. District nurses were the most frequent health professionals visiting care homes, but less than half reported involvement in palliative care. The differing priorities and perceptions of participants regarding what constituted nursing and personal care influenced older people's access to palliative care services. Furthermore, the organization of care and the stability of the care home workforce affected participants' ability to establish ongoing supportive working relationships. It is argued that unless there is an organizational review of current practice, older people will continue to have unequal access to generalist and specialist palliative care.     

Psychosocial aspects of terminal care. A preliminary study of nurses' attitudes and behaviour in a general hospital

American research has shown that dying patients in general hospitals are unpopular with health care personnel who withdraw from them socially while maintaining adequate physical care. Some of the reasons for this may be doctors' control of patient care and their own fears of death or perception of patient death as failure. Most doctors would not permit patients to know of a poor prognosis and this often leads to 'closed awareness' in which both nurse and patient are aware of the eventual outcome, but the nurse is forbidden to discuss this and so cannot encourage 'dangerous' conversation in the patient. This study was designed to replicate some of the American findings and confirmed that nurses are ill-prepared to deal with death, withdraw socially from terminal patients and have no authority to discuss dying. The findings are discussed in terms of nurse education and implications for professional autonomy and responsibility.     

'Relatives are a resource,but...': registered nurses' views and experiences of relatives of residents in nursing homes

Registered Nurses (RNs) working in nursing homes in Sweden have obligations towards the residents' relatives, besides the care of residents. Relatives' involvement and satisfaction with the care partly depend on their contacts and communication with the staff. This study aimed to explore and describe RNs' views and experiences of relatives of residents who live in nursing homes. Open interviews were conducted with 19 RNs at three nursing homes. The verbatim-transcribed interviews were subjected to qualitative content analysis. Relatives were seen as a resource (with some restrictions) and nice, although demanding. The RNs saw relatives as part of their work--a part that could be time-consuming and had low priority. Interviewees noticed a difference between young and old relatives, and between female and male relatives. A large proportion of accounts could be related to issues about communication and interpersonal relationships with relatives. Building a trusting relationship with relatives may result in them being involved in residents' care and thus giving the nurses time rather than consuming time.     

Palliativmedizin – auch im hohen Alter?

Red Cross Clinic is the largest geriatric center in Norway (240 beds). Major parts of the center are: long time geriatric ward (215 beds), rehabilitation and acute ward (25 beds), day clinic (45 patients) and a teaching and research unit. A palliative care unit (10 beds) will be opened in spring 2000. In mai 1998 a national project: Palliative care for the elderly was opened at our center. The projects main goal is to develop and support proper palliative care to all severe ill and dying patients in Norway. In a prospective study we examined 179 consecutive deaths between 1998 and 1999. Average age was 84.5. Major symptom problems were pain, dyspnoea, death-rattle and anxiety. In the last 24 hours 83% of the patients received opioids, 67% of the cases morphine (mean daily dosage 31.8 mg). 37% of the patients received scopolamine (mean daily dosage 0.8 mg), 12% benzodiazepines and 3% of the patients haloperidol. 152 (85%) of the deaths were expected, 27 (15%) unexpected. In 137 patients (77%) open, honest, frank communication with patient or their nearest kin regarding the imminent death was possible. In our experience it is a myth that the relatives want doctors to practise "maximal therapy". All old patients in geriatric clinics and nursing homes need palliative care. We have found no international textbooks of geriatrics with chapters on palliative care or textbooks on palliative care with chapters on the elderly. They need doctors and nurses who are properly trained and educated in palliative care. In most countries in Europe this training and education is not provided.     

Palliative care in a coronary care unit: a qualitative study of physicians' and nurses' perceptions

Background. Earlier research has shown that physicians and nurses are motivated to provide good palliative care, but several factors prevail that prevent the best care for dying patients. To provide good palliative care it is vital that the relationship between nurses and physicians is one based on trust, respect and sound communication. However, in settings such as a coronary care unit, disagreement sometimes occurs between different professional groups regarding care of dying patients. Aim and objectives. The aim of this study was to describe and understand physicians’ and nurses’ perceptions on their working relationship with one another and on palliative care in a coronary care unit setting. Design. Using a convenience sample, professional caregivers were interviewed at their work in a coronary care unit in Sweden. Methods. Data collection and analysis were done concurrently using a qualitative approach. Results. From the interviews, a specific pattern of concepts was identified. The concepts were associated with a dignified death, prerequisites for providing good palliative care and obstacles that prevented such care. Conclusions. Caregivers who work in a coronary care unit are highly motivated to provide the best possible care and to ensure a dignified death for their patients. Nevertheless, they sometimes fail in their intentions because of several obstacles that prevent good quality care from being fully realized. Relevance to clinical practice. To improve practice, more attention should be paid to increasing dying patients’ well‐being and participation in care, improving strategic decision‐making processes, offering support to patients and their relatives, and improving communication and interaction among caregivers working in a coronary care unit. Caregivers will be able to support patients and relatives better if there are good working relations in the work team and through better communication among the various professional caregivers.     

Emotional involvement with the dying in a coronary care unit

The conflict between professional distance and emotional involvement has been identified as a central problem for nurses in their care of dying patients. While some nurses may attempt to maintain their professional distance, individualised methods of patient care encourage the development of emotional involvement between nurses and their patients. Where such nursing methods are used it is essential that appropriate ways exist of handling the problems which such involvement may cause nurses. In the coronary care unit studied, the organisation of nursing work facilitated close and continuing contact between nurses and their patients, thereby increasing the chance that emotional involvement would develop. The death of a patient was not viewed by the nurses as a 'failure', but there were sometimes difficulties for them arising from their involvement with the patient. This paper describes the handling of death and dying in the unit, and some of the issues surrounding emotional involvement and communication with dying patients.     

Decision-making for acutely ill nursing home residents: nurses in the middle

Title.  Decision-making for acutely ill nursing home residents: nurses in the middle.
Aim.  This paper is a report of a study to generate a model of nursing behaviours and social processes inherent in decision-making for acutely ill nursing home residents.
Background.  Most research concerning clinical decision-making in nursing homes focuses on the perspectives of doctors. Much less is known about the perspectives and actions of nurses with regard to decision-making, despite the centrality of their roles in nursing homes.
Method.  Grounded theory was used. Data were collected in 2004 in four nursing homes in the United States of America using in-depth, semi-structured interviews, 74 hours of non-participant observation and informal conversational interviews with key nursing staff involved in decision-making.
Findings.  Nurses strive to create a plan of care acceptable to family members and doctors, consistent with wishes of residents and most comfortable for residents. A unifying theme of satisfying all sides emerged as representative of the negotiation strategies used by nurses to address these competing points of view. Four phases in this negotiation occurred: weighing the significance ; notifying the family ; feeling it out ; and playing the middleman . The outcome was either a decision for life-prolongation or for palliative care.
Conclusion.  Decisions for nursing home residents are complex and involve weighing and balancing the interests and preferences of many concerned participants, including residents, families and doctors. This process requires skill in clinical judgment, communication and collaboration.     

Perception of discomfort by relatives and nurses in unresponsive terminally ill patients with cancer: a prospective study

Perception of discomfort in dying patients is a risk factor for distress and bereavement among relatives. This study determined the perception of discomfort, the frequency of observed behaviors, and their association among relatives and among nurses who care for unresponsive dying patients. Sixty unresponsive dying patients' relatives and their nurses were asked to evaluate patient discomfort levels, the frequencies of six observed behaviors, and the suspected reasons for the patient discomfort. The mean levels of perceived discomfort were similar, but the association was poor between the relatives and the nurses. Relatives reported significantly more observed behaviors and associated more pain as a reason for patient discomfort than did nurses. The findings suggest that relatives are intensely attuned to their loved ones' conditions and reactions, and nurses' responses are fairly similar. Further research is warranted, however, to distinguish between the distress that the relatives perceive and the actual suffering of patients.     

New dimensions of death

Many researchers throughout nursing history have been quoted as suggesting the relative inadequacy of care and the ill-preparedness of nurses to perform their ‘final role’ care of the terminally ill. Intensive care nurses must inevitably face performing this “final role” sometimes, often after much effort to maintain life. Control of physical symptoms can go far in caring for the dying patient but psychological needs rank high and must be dealt with. Nurses however use subtle avoidance and conversation controlling tactics whilst taking care of the dying patient's physical needs (Nicholls, 1984). This problem is related to the lack of instruction in the necessary skills of terminal care that is given to nurses.It is regrettable that nurses generally feel ill-equipped by their training to deal with the dying patient, yet Freihofer and Felton (1976) showed that a nurse's presence is particularly valued and that its importance is rated very close to physical needs by dying patients and their relatives.     

The Medicare hospice benefit's influence on dying in nursing homes

For dying nursing home residents, the prevalence of symptoms and care utilization prior to death has yet to be empirically described for a population-based sample. Yet, related work has suggested that the quality of care for dying nursing home residents is less optimal. The provision of Medicare hospice care in nursing homes offers a means for improving terminal care in nursing homes. However, other than controversial findings emanating from the U.S. Office of Inspector General's (OIG's) hospice studies, there is a dearth of evaluative research on the comparative costs and the benefits of Medicare hospice care in nursing homes. In this article, we discuss current knowledge concerning the dying experience of nursing home residents and of the influence of the Medicare hospice benefit in nursing homes. In doing so, we critique the OIG's study of hospice care in nursing homes and we raise concerns regarding access to the Medicare hospice benefit in nursing homes. We conclude by delineating the research needed to more fully understand the dying experience of nursing home residents and the influence of Medicare hospice care provision on this experience.     

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.