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.     

Caring for dying patients outside special palliative care settings: experiences from a nursing perspective

The aim of the study was to describe nurses' experiences in caring for gravely ill and dying patients outside special palliative care settings. Tape-recorded qualitative interviews were conducted with a total of nine nurses in primary home care, community care and hospitals. The interviews were analysed according to phenomenological methodology, which resulted in the three common structures: ambition and dedication, everyday encounters, and satisfaction/dissatisfaction. In the 'everyday encounters' structure, the following key constituents emerged: responsibility, cooperation, experience and knowledge, feelings, and time and resources. The results describe the nurses' high ambitions to give dying patients and their relatives high-quality care. Despite this, they experienced greater or lesser degrees of dissatisfaction because of insufficient cooperation, support, time and resources. They experienced satisfaction through contact with patients and relatives, functioning collegial cooperation, and the knowledge, experience and personal growth the care had given them. The results indicate that nurses need the resources such as time, improved methods of communication and cooperation as well as more support in order to give quality palliative care and achieve satisfaction with the outcome. The need for discussion about the conditions for giving palliative care outside the hospices and other special palliative care settings is also elucidated.     

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.     

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.     

Palliative care nurses' views on euthanasia

BACKGROUND: In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. AIM: The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. METHODS: A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. FINDINGS: The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. CONCLUSION: In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.     

综合性医院护士对安宁疗护的认知现状及培训需求调查

[目的]对某三甲综合性医院的护士进行安宁疗护认知情况及培训需求调查,为医院进一步开展相关教育、提高整体护理质量提供依据。[方法]采用罗明琴等人编制的《护理人员安宁疗护知识问卷》,以问卷星的方式发放电子问卷。[结果]护士对安宁疗护的认知总评分标准分为（71.08±15.05）,在心理护理知识方面掌握良好,在基本知识掌握方面较差。而不同的性别、年龄、学历、职称、工作年限,护士对安宁疗护认知无统计学差异（P>0.05）;不同职称、不同工作年限的护士在获取安宁疗护相关知识的途径上有差异（P<0.05）;护士对于与临终病人沟通方式和应对照护临终病人所产生的情绪压力方面培训需求较高。[结论]本院护士虽然对于安宁疗护的认知程度处于中等水平,但还是需要开展有针对性的教育培训,调动护士学习积极性,探索属于中国本土化的安宁疗护照护模式。     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Ethical decision-making in nursing homes: influence of organizational factors

In this article we report findings from a qualitative study that explored how doctors and nurses in nursing homes describe professional collaboration around dying patients. The study also examined the consequences this can have for the life-prolonging treatment of patients and the care of them and their relatives. Nine doctors and 10 nurses from 10 Norwegian nursing homes were interviewed about their experience of decision-making processes on life-prolonging treatment and care. The findings reveal that the frameworks for the professional collaboration and organization of physicians and nurses prevent patient treatment and care complying with ethical considerations and the law. These conditions have a challenging impact on the care of dying patients and their relatives.     

Rationale for integration of palliative care in the medical intensive care: A narrative literature review

Despite the remarkable technological advancement in the arena of critical care expertise, the mortality of critically ill patients remains high. When the organ functions deteriorate, goals of care are not fulfilled and life-sustaining treatment becomes a burden on the patient and caregivers, then it is the responsibility of the physician to provide a dignified end to life, control the symptoms of the patient and provide psychological support to the family members. Palliative care is the best way forward for these patients. It is a multidimensional specialty which emphasizes patient and family-based care and aims to improve the quality of life of patients and their caregivers. Although intensive care and palliative care may seem to be at two opposite ends of the spectrum, it is necessary to amalgamate the postulates of palliative care in intensive care units to provide holistic care and best benefit patients admitted to intensive care units. This review aims to highlight the need for an alliance of palliative care with intensive care in the present era, the barriers to it, and models proposed for their integration and various ethical issues.     

Interdisciplinary cooperation of GPs in palliative care at home: a nationwide survey in The Netherlands

OBJECTIVE: To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home. DESIGN: In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers. SETTING: Second Dutch National Survey in General Practice. SUBJECTS: A total of 743 patients who received palliative care according to their GP. MAIN OUTCOME MEASURES: Interdisciplinary cooperation between GP and other healthcare providers. RESULTS: During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care. CONCLUSION: In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.     

The experiences of Chinese family members of terminally ill patients - a qualitative study

Aim. To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. Background. Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. Design. A phenomenological study was conducted. Data were collected by semi‐structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. Results. Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. Conclusion. This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. Relevance to clinical practice. This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.     

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.     

End-of-life Nursing Education Consortium (ELNEC) Training Program: improving palliative care in critical care

The integration of palliative care in critical care settings is essential to improve care of the dying, and critical care nurses are leaders in these efforts. However, lack of education in providing end-of-life (EOL) care is an obstacle to nurses and other healthcare professionals as they strive to deliver palliative care. Education regarding pain and symptom management, communication strategies, care at the end of life, ethics, and other aspects of palliative care are urgently needed. Efforts to increase EOL care education in most undergraduate and graduate nursing curricula are beginning; yet, most critical care nurses have not received formal training in palliative care. Moreover, educational resources such as critical care nursing textbooks often contain inadequate information on palliative care. The ELNEC-Critical Care program provides a comprehensive curriculum that concentrates on the requirements of those nurses who are working in areas of critical care. Extensive support materials include CD-ROM, binder, Web sites, newsletters, textbooks, and other supplemental items. The ultimate goal is to improve EOL care for patients in all critical care settings and enhance the experience of family members witnessing the dying process of their loved ones.     

Registered nurses’ knowledge,attitudes and beliefs about end-of-life care in non-specialist palliative care settings: A mixed studies review

AimThe aim of this study was to describe, evaluate and synthesise the literature on registered nurses’ knowledge, attitudes and beliefs towards end-of-life care in adult non-specialist palliative care settings.BackgroundLittle is known about the knowledge, attitudes and beliefs of Registered Nurses working in non-specialist palliative care settings about end-of-life care.DesignA mixed-methods systematic review and narrative synthesis was conducted (PROSPERO Registration No: CRD4202148114). Five databases (Medline, CINAHL, PubMed, PsycINFO and Web of Science) were searched from inception to August 2020. Study quality was assessed using the Mixed Methods Appraisal Tool.ResultsNineteen studies met the inclusion criteria. Registered nurses in non-specialist palliative care settings demonstrated good knowledge of pain symptoms and management and positive attitudes towards caring for dying patients and their families. Knowledge deficits were identified in the psychosocial and spiritual aspects of end-of-life care and registered nurses reported negative attitudes towards communication about death. Only five of the included studies explored registered nurses’ beliefs towards end-of-life care.ConclusionsThere is a need to enhance palliative care education in clinical practice settings and in undergraduate programs to improve registered nurses’ knowledge, attitudes and beliefs about end-of-life care. Future studies that use reliable and validated methods to measure registered nurses’ beliefs about end-of-life care should be conducted.Tweetable abstractRNs in non-specialist palliative care settings want more education on pain management & greater knowledge on communicating about death/dying.     

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.     

Physician attitudes toward palliative care at a community teaching hospital

The goals of the study were to explore physicians' attitudes and opinions about palliative care and its implementation. Four focus groups composed of attending physicians were conducted by a professional facilitator at a community teaching hospital. The audio-tapes of the groups were carefully transcribed and analyzed according to rigorous qualitative methodology. Physicians perceived palliative care and pain control as important. Problems they perceived were a lack of education for physicians, residents, other health care professionals, and the general public; a lack of hospital support systems to implement palliative care appropriately, and a lack of knowledge and support regarding legal considerations. They believed that a palliative care unit was a reasonable tool to overcome many obstacles to good end-of-life care.     

Intensive care nurses' experiences with end-of-life care.

BACKGROUND: With much attention being focused on how patients die and whether or not they are provided appropriate care, the care of dying patients in intensive care units must be described and improved. OBJECTIVES: To describe end-of-life care in intensive care units as perceived by critical care nurses who have taken care of dying patients. METHODS: A semistructured interview guide was developed and revised after pretesting in a focus group of faculty clinicians with extensive, recent experience in intensive care. Four focus groups were held with randomly selected nurses from 4 intensive care units in 2 hospitals; participants had 2 years or more of experience and were working half-time or more. Tapes from each focus group were transcribed and reviewed by the investigators before the subsequent group met. Category labels were developed, and topics and themes were determined. RESULTS: "Good" end-of-life care in the intensive care unit was described as ensuring that the patient is as pain-free as possible and that the patient's comfort and dignity are maintained. Involvement of the patient's family is crucial. A clear, accurate prognosis and continuity of care also are important. Switching from curative care to comfort care is awkward. CONCLUSIONS: Disagreement among patients' family members or among caregivers, uncertainty about prognosis, and communication problems further complicate end-of-life care in intensive care units. Changes in the physical environment, education about end-of-life care, staff support, and better communication would improve care of dying patients and their families.