Do Not Resuscitate orders and older patients: findings from an ethnographic study of hospital wards for older people

BACKGROUND AND AIM: This paper reports on the findings from an ethnographic study involving three wards in two hospitals in the Northwest of England and focuses on the controversial issue of Do Not Resuscitate (DNR) orders. The study aimed to explore the way in which terminal care was provided to older patients and examined the way in which DNR orders were a socially constructed part of the practices of both nurses and doctors. METHOD: An ethnographic approach was adopted that used participant observation and semi-structured interviews with nurses and doctors. A purposive sample of 28 qualified nurses and five medical staff were interviewed. The decision-making process of DNR orders became the focus of the interview questions. FINDINGS: The findings reveal that DNR decision-making was largely socially constructed from the interactions of hospital staff. Patients were not asked their preference and were excluded from any decision-making about Cardiopulmonary Resuscitation (CPR) or DNR orders. Two major findings emerge. First, DNR orders and the non-use of CPR could be seen as a form of medical beneficence, resulting from the often described paternalistic attitudes of hospital doctors. Second, there was a clear indication that DNR orders and the non-use of CPR for certain patients was based on improving the quality of patients' lives. CONCLUSION: The study raises issues about the quality of care received by frail older patients whom the nurses felt would not survive a futile medical procedure. The conclusion considers the need for hospitals to formulate and implement CPR policies, particularly in the prevailing climate in which patients are encouraged to become active participants in their own health care.     

Truth telling and the dying patient: a conspiracy of silence?

This article reports on the findings of an ethnographic study of the terminal care of older dying patients in hospital. The study focused on the information given to 22 patients diagnosed with a life-threatening illness. Using data from participant observation and ethnographic interviews, the research examined the strategies used to control information about terminal diagnosis. Several ethical implications were raised, such as truth telling and collusion. The article examines the implications of implementing ward disclosure norms based on closed awareness. It also considers the issues associated with developing a truth-telling culture.     

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.     

Attitudes of elderly Korean patients toward death and dying: an application of Q-methodology

The aim of this study was to identify the attitudes of elderly Korean patients toward death and dying using Q-methodology to aid in the development of basic strategies for nursing care of elderly Koreans. Thirty participants at a university hospital sorted 40 selected Q-statements on a nine-point scale. Data analysis identified three types of attitudes toward death and dying in elderly patients in Korea: religion-dependent, science-adherent, and sardonic. Religion-dependent elders are highly dependent upon religion as evidenced by their reply that they would like to rely on God and a minister the most. Science-adherent elders have great affection for life and believe in modern medical advancements. The sardonic elders regard death as the dispensation of nature so there is no need to be afraid of death and dying. This study will contribute to the understanding that nurses and other health professionals have of the perceptions of elderly Koreans about death and dying. Also, the findings may provide the basis for the development of more appropriate strategies to improve death and dying education programs of health professionals.     

Nurse-doctor interactions during critical care ward rounds

This paper describes the participation of critical care nurses in ward rounds, and explores the power relations associated with the ways in which nurses interact with doctors during this oral forum of communication. The study comprised a critical ethnographic study of six registered nurses working in a critical care unit. Data collection methods involved professional journalling, participant observation, and individual and focus group interviews with the six participating nurses. Findings demonstrated that doctors used nurses to supplement information and provide extra detail about patient assessment during ward rounds. Nurses experienced enormous barriers to participating in decision-making activities during ward round discussions. By challenging the different points of view that doctors and nurses might hold about the ward round process, the opportunity exists for enhanced participation by nurses.     

Communication with dying patients--perception of intensive care units nurses in Brazil

Aims and objectives. This study aimed to assess whether nurses working in intensive care units view the establishment of communication with patients beyond therapeutic possibilities as an effective palliative therapeutic resource, and which aspects of this communication they valued most. Method. Data were collected in November 2002, by semi‐structured interviews with 10 nurses of both clinical and surgical intensive care unit at a school hospital in Sao Paulo city, Brazil. Interviews were recorded and transcribed to be further analysed according to the qualitative methodology of content analysis. Results. Four categories of thematic order raised from the collected statements, which clarify (i) the value of communication with terminal patients; (ii) the obstacles found during this process; (iii) the need to identify the individual demands of each patient, (iv) be able to use communication as a tool in the palliative care of the dying patient. Conclusion. In conclusion, we found that the nurses working at the intensive care unit do consider communication with dying patients an effective therapeutic resource, in spite of their own difficulties in communicating with dying patients, viewing themselves as ill prepared to the task, and often, distancing themselves from the dying patients because of their inability to deal with their own feelings, which were brought forth by the confrontation with the imminence of death. Relevance to clinical practice. Although the number of interviewed nurses in our study was small, the results corroborated the findings of other studies and revealed an educational aspect in nursing training that deserves serious consideration.     

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.     

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.     

The experience of dying for Chinese nursing home residents: cultural considerations

Given the increase of cultural diversity of the elderly population in the United States, there is a need for increased sensitivity of culturally diverse residents. Research on the care of terminally ill Chinese elderly individuals in nursing homes is limited. As part of a larger study on end-of-life care in nursing homes, data were obtained on 34 Chinese residents. Data were obtained through participant observation, event analysis, and in-depth interviews with residents and their families, nursing staff, and physicians. The process of providing care was observed from the time residents were identified as terminally ill until their death. The most significant factors influencing the care Chinese residents received were communication barriers, dislike of Western food, and differing cultural beliefs and customs. These findings offer valuable information in helping to develop and implement interventions to improve the terminal care of Chinese elderly individuals in nursing homes.     

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.     

Attitudes of Danish doctors and nurses to palliative and terminal care

BACKGROUND: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services. DESIGN: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously. PARTICIPANTS: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. OUTCOME MEASURES: The responses from the groups were compared by chi2 statistics (where ordinal variables with chi2 for trend). Data were analysed using SPSS 10.0. RESULTS: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. CONCLUSION: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark.     

Strategies for discussing death with child cancer sufferers

Since a curriculum concerning life and death was established and palliative care began to be promoted, people have gradually awakened to the needs of dying patients. Because of the nature of oriental culture, however, ultimate decisions concerning someone with a terminal disease have traditionally been made by family, so dying patients, especially children with cancer, have usually not been told of their true condition. The purpose of this article was to gain an understanding of the necessity of talking about death with child cancer patients and how to communicate with these children. The results show that helping the family to talk about death and decision making concerning treatment can help them to adapt to the grieving period when the children pass away. The tactics that nurses can use for communication with dying children include: to acknowledge the decision maker in the family, adopt the concept of death appropriate to a person of the child's age, discuss the prognosis for the development of the disease, and opt to use the medium of communication. The findings of this article may serve as a source of reference for nurses caring for dying children, and cause greater attention to be paid to these issues.     

Imagining the alternatives to life prolonging treatments: elders' beliefs about the dying experience

Deciding for or against a life-prolonging treatment represents a choice between prolonged life and death. When the death alternative is not described, individuals must supply their own assumptions. How do people imagine the experience of dying? We asked 40 elderly people open-ended questions about dying without 4 common life-prolonging treatments, eliciting beliefs about pain, length of time, loneliness, and palliative care. Beliefs were diverse, loneliness was commonly assumed, and palliation was rarely mentioned spontaneously. Results underscore needs for improved understanding of the dying process and palliative care and for fuller communication between patients and healthcare providers.     

Student nurses' attitudes towards death and dying in south-east Iran

In this study, the attitudes of student nurses from Kerman and Bam in Iran towards death and caring for dying patients were compared. Two types of questionnaire were used: the DAP-R (Death Attitude Profile Revised) and FATCOD (Frommelt Attitude Towards Caring for Dying patients). The Bam student nurses, who had more experience of death due to the Bam earthquake in December 2003, were found to be less afraid of death and also less likely to give care to people at the end of life compared to their counterparts in Kerman. In both groups, those who were educated about death and dying had more positive attitudes towards caring for people who are dying than non-educated participants. The study suggests that adding palliative care education, accompanied by a reflective narrative approach, to the nursing curriculum is necessary to improve quality of care at the end of life.     

Light-hearted death talk in a palliative day care context

This paper reports on an ethnographic investigation of a palliative day care unit. The aim of the study was to explore communication processes amongst patients with terminal disease, in an 'open awareness' context. The research involved participant observation over a period of 7 weeks. Detailed field notes were written and documentary information gathered on site. Analysis of the data showed that in the day care environment, patients readily talked about cancer, illness and death. Five themes were identified in the content of such 'death talk': talk about illness, symptoms and treatment, stories about illness and death, talk about patient deaths, talk regarding bereavement, and talk concerning personal mortality. In addition to content, it is maintained that the form of the patients'talk is pertinent to an understanding of the discursive context of palliative day care. It is proposed that the light-hearted and humorous nature of patient 'death talk' serves an important psychological function in allowing patients to distance themselves from their own deaths whilst simultaneously permitting an acknowledgement of their terminal condition. This suggests that the provision of an appropriate 'social' environment for patients with terminal disease may be as important to patients as one-to-one counselling by clinical nurse specialists.     

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.     

Emotional support for dying patients--the nurses' perspective.

This study describes and explains the provision of emotional support to the dying patients from the nurses' viewpoint. The results are part of a questionnaire survey concerned with terminal care on inpatient wards at community health centres in Finland. The sample consisted of 328 nurses from 32 health centres. The data were collected using a structured questionnaire in which emotional support was measured by multiple-choice items and one open-ended question. The data were analysed using content analysis. Listening, touching, expressing empathy, attending to the patients' wishes, comforting, encouraging and being present were the most common forms of emotional support. The support was mainly provided in connection with basic care. Problems concerning the provision of emotional support were focused on organisational resources, nursing staff, patients and family members. The size of the health centre, further training in the care of terminal patients and reading the literature were associated with the provision of support. In conclusion, nurses feel they need time as well as sufficient skills and competencies so that they can provide emotional support to the extent and in the way that they themselves want to.