End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

护士安宁护理自我效能及其影响因素的调查分析

目的探讨护士安宁护理自我效能情况及其影响因素。方法采用方便抽样方法,选择260名护士,采用护士安宁护理自我效能调查问卷进行调查。结果影响护士安宁护理自我效能的主要因素是对死亡态度、过去所在科室、护理终末期病人的经验、自觉重要程度。护士过去经验和对安宁护理的自觉重要程度与自我效能呈正相关（均P〈0.001）。结论增加护士照护经验积累,提高心理与灵性照护能力,重视安宁护理的教育及培训,对提高安宁护理质量具有积极的意义。     

晚期癌症病人家庭临终护理的研究进展

综述近年来国内外晚期癌症病人家庭护理模式的研究进展,探讨我国开展晚期癌症病人家庭临终护理存在的问题和解决方法,指出未来应着重培养专业的家庭临终医护人员,健全家庭临终护理的模式,从而为病人和家属提供全面、专业的照护与支持;逐步将家庭临终护理加入医保范围,加大对家庭临终护理的政策和财力支持,普及和推广家庭临终护理;加大宣传,帮助人们更新思想观念,关注人的基本权利。     

Priority areas for clinical research in palliative care nursing

This report highlights a number of current research issues and concerns in palliative care nursing. The aim of the study was to identify high clinical nursing research priorities in palliative care, drawing on the expertise of nine (n = 9) clinical nurse consultants currently working in this specialty. The Delphi method was used to collect and process data in the study. Thirteen high research priorities emerged which have relevance for nursing practice, patient and family care in the hospice and community care setting. In the context of this study, the concept of high priority relates to research participant consensus on the most pressing nursing research problems which require investigation to improve clinical practice. Study findings provide direction for clinical research and continuing education in palliative care which may benefit expert nurses and their patients.     

Quality of life of cancer patients receiving inpatient and home-based palliative care

AIMS: This paper reports a comparative study of the symptom experience, physical and psychological health, perceived control of the effects of cancer and quality of life of terminally ill cancer patients receiving inpatient and home-based palliative care, and the factors that predict quality of life. BACKGROUND: Quality of life is a major goal in the care of patients with terminal cancer. In addition to symptom management, psychological care and provision of support, being cared for at home is considered an important determinant of patient well-being. A more comprehensive understanding of the impact of cancer on patients and their families will inform the delivery of palliative care services. METHODS: Fifty-eight patients with terminal cancer (32 inpatients, 26 home-based) were recruited from major palliative care centres in Australia in 1999. A structured questionnaire designed to obtain sociodemographic information, medical details and standard measures of symptoms, physical and psychological health, personal control and quality of life was administered by personal interview. RESULTS: The two groups were similar on most demographic measures, although more home-care patients were married, of Australian descent and had private health insurance cover. The most prevalent symptoms reported were weakness, fatigue, sleeping during the day and pain. Patients receiving home-based services had statistically significantly less symptom severity and distress, lower depression scores, and better physical health and quality of life than those receiving inpatient care. Home-care patients also reported statistically significantly more control over the effects of their illness, medical care and treatment received, and the course of the disease. Multiple regression analyses showed that better global physical health, greater control over the effects of cancer and lower depression scores were statistically significant predictors of higher quality of life. CONCLUSIONS: The main issues arising from the findings for nurses are the early detection and management of both physical and psychological symptoms, particularly fatigue, pain, anxiety and depression, and the need to use strategies that will empower patients to have a greater sense of control over their illness and treatment. Research is needed to identify other factors that may impact on quality of life, and to establish the extent to which inpatient and home-based care meets the needs of both the patient with terminal cancer and their family.     

Childhood sexual abuse in advanced cancer patients in the palliative care setting

Childhood sexual abuse (CSA) is a common, distressing, yet rarely discussed topic in palliative care. The long-term effects of CSA can have a significant impact on patients’ quality of life, particularly at the end of life. In this article, we aim to initiate a discussion regarding the need to address CSA in the palliative care setting, using the example of an advanced cancer patient and her caregiver sister who revealed their common past. Specifically, we will be discussing 1) the comorbidities, psychological distress, and family distress associated with CSA, 2) its impact on health care delivery, 3) an approach to initiating conversations regarding CSA, and 4) various management strategies. Successful management of CSA necessitates an interprofessional team approach and may help to improve the quality of life of patients and their families.     

Complexity in caring for patients with advanced cancer

BACKGROUND: The gap between nursing research and practice is readily acknowledged in literature, with a variety of strategies suggested for reducing this gap. It is necessary not only to address problems of research implementation in practice, but also to find strategies that strengthen the influence of practitioners on research agendas through more collaborative relationships in order to have an impact on care of patients. A multi-centre research project was therefore initiated by two universities and three health care facilities, aiming to improve quality of care for patients with advanced cancer through a knowledge-exchange programme between nurse researchers, practitioners and students. AIM: The aim of this article is to explore how clinical staff reason about care provision for patients with advanced cancer, through analysis of 20 focus group discussions conducted with staff in three different health care facilities in two Swedish cities. An initial analysis based on grounded theory was complemented with consideration of the interactive process in the focus group discussions, and carried out by a team consisting of senior nurse researchers, clinical experts and nursing instructors. FINDINGS: The findings of the focus group discussions emphasize the complexity of caregiving for patients with advanced cancer. The tension between caregiving ideals and limits imposed by the realities of caregiving in today's health system were striking. Practitioners discussed the organization of care, different constellations of relationships between patients, family members and professionals, and theoretical and experiential knowledge as equally important aspects in dealing with all concrete situations in daily practice. The importance of reflective practice, use of self and ethical reasoning also permeated the focus group discussions. CONCLUSIONS: These findings highlight an integrated need both to influence organizational structures and working relationships, along with increasing knowledge, if sustainable change is to be effected.     

Esthetic abilities: a way to describe abilities of expert nurses in palliative home care

Aim. The aim of this paper is to focus on the abilities needed to create the caring relation in palliative home care and to find ways to describe these abilities and skills from an esthetic perspective. Background. Nurses in Palliative home care have to create a functioning relationship between themselves the patient and the patient's next of kin, this puts special demands on the nurse. A number of abilities, such as creativity, intuition, empathy and self‐knowledge are mentioned in literature related to the caring relation. Many nursing theorists have referred to the art and esthetic of nursing when trying to describe these abilities. Methods. Data were collected using semi‐structured interviews with eight expert nurses in palliative home care. The transcribed interviews were analysed using qualitative content analyses. Findings. Three main categories where found: The will to do good, Knowledge and Perceptiveness. Subcategories that can be seen as abilities where found in the main categories knowledge and perceptiveness. Conclusions. The main categories can be seen as expressions for abilities, personal qualities and skills needed to create the caring relation in palliative home care. We found interesting connections between the three main categories and the concepts of esthetics, ethics and science. We also found that nurses develop in a way, i.e. similar to an artist. Relevance to clinical practice. The concepts brought forward in this paper could be used in clinical supervision and education as well as in clinical practice. If nurses think about the three aspects: Knowledge, the will to do good and perceptiveness, the chance for a positive relation between the nurse and the patient, and the patient's next of kin might increase. One could speculate that perceptiveness is a vital ability in order to achieve the expert level of nursing and that this perspective should be taken in consideration when recruiting nurses and in curriculum development.     

Palliative care for patients with cancer: district nurses' experiences

AIM: This paper reports a study exploring district nurses' experiences of providing palliative care for patients with cancer and their families. BACKGROUND: There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on district nurses' experiences in palliative care. METHOD: A Husserlian phenomenological approach was adopted with a purposive sample of 25 female district nurses. Data were collected using unstructured, tape-recorded interviews and analysed using Colaizzi's seven stages of data analysis. FINDINGS: Four themes were identified: the communication web; the family as an element of care; challenges for the district nurse in symptom management and the personal cost of caring. CONCLUSIONS: District nurses' experiences of providing palliative care to family units was challenging but rewarding. The emotive nature of the experience cannot be under-estimated, as many district nurses were touched by the varying situations. Whilst acknowledging the need to maintain an integrated approach to care, district nurses should be identified as the key workers in the complex situation of palliative care.     

Developing palliative care practice in nursing and residential care homes: the role of the clinical nurse specialist

The development of practice is but one aspect of Clinical Nurse Specialists' (CNSs) work, and a number of factors act to shape the extent to which CNSs are able to work with and develop practice with nursing and residential care homes. A postal survey of 730 community CNSs in palliative care working in the UK was undertaken to explore the involvement of these nurses with nursing and residential care homes. Much of the focus of the involvement was reactive work meeting the direct clinical needs of residents, primarily with cancer. Although the CNSs perceived that there were some educational and care deficits in these care settings, the amount of proactive work undertaken to improve practice was limited. The development work undertaken was focused on educational initiatives and establishing link nurse systems. There is potential to develop palliative care practice in nursing and residential care homes through practice development initiatives.     

Demographic and clinical predictors of spirituality in advanced cancer patients: a randomized control study

Aim.  To study the influence of cancer patients’ sociodemographic and clinical characteristics in their spiritual beliefs and attitudes. Background.  Patients’ sociodemographic and clinical characteristics may have an important role in their spirituality. Failure to control these factors can lead to a false estimation on patients’ spiritual beliefs. Previous studies have found that age, gender and health status associate with spiritual attitudes and beliefs. Design.  Survey. Methods.  The Spiritual Involvement and Beliefs Scale was administered to 82 cancer patients. Demographic characteristics, disease status and treatment regimen were recorded. Results.  Among the most significant correlations were those between gender and all the subscales, cancer diagnosis, existential/meditative subscale, radiotherapy treatment and external/ritual, internal/fluid and existential meditative. In the prediction of spirituality, the contribution of gender, age, years of education, performance status and radiotherapy is high. Conclusion.  Acknowledging the specific patients’ demographic and medical characteristics, such as female gender, old age, years of education, performance status and radiotherapy treatment, contributes to the prediction of patients’ spiritual beliefs and attitudes. Relevance to clinical practice.  Addressing spiritual needs in palliative care among the dying needs to be a priority and could be a crucial aspect of psychological functioning, especially when considering certain demographic and clinical characteristics.     

晚期肿瘤病人姑息护理的效果观察

[目的]观察晚期肿瘤病人姑息护理的效果。[方法]将40例住院化疗晚期恶性肿瘤病人随机分为对照组和观察组,每组20例,对照组病人给予常规治疗和护理,观察组病人行常规治疗的同时给予姑息护理。在病人入院时、第一疗程末、第二疗程末、第三疗程末采用医院焦虑、抑郁量表（HAD）评定病人治疗前后焦虑、抑郁状况。[结果]两组病人入院时焦虑、抑郁评分均较高,组间比较差异无统计学意义（P〉0.05）;各疗程末焦虑、抑郁评分均低于入院时水平,且观察组低于对照组（P〈0.05）。[结论]姑息护理能有效改善晚期恶性肿瘤病人的焦虑、抑郁水平。     

The future of palliative care nursing research in Australia

Nursing research in palliative care is becoming more important as cost effectiveness and evidence-based practice are becoming mandatory. Fifty-nine published and unpublished projects relating to nursing research on palliative care in Australia between 1990 and 1996 were reviewed. Findings indicated that nurses working in palliative care in Australia are interested in researching a range of topics using varied methods. The nurses' primary interests appear to be their own professional issues and management of the patient's pain. Little research on families/carers of palliative care patients was evident. There is a need for future research to focus on projects that justify the nurse's role in the palliative care team, show that nursing interventions for symptom control affect patient outcomes and prove nurses are integral to the psychosocial and spiritual wellbeing of the patient and family during the palliative care journey.     

Changes in medical and nursing care in cancer patients transferred from a palliative care team to a palliative care unit

The primary aim of this study was to explore the changes in medical/nursing care in patients who transferred from a palliative care team (PCT) to a palliative care unit (PCU) in the same hospital, and to explore the reasons why new or modified interventions were required. This was a retrospective study of 50 consecutive patients who were transferred from PCT to PCU in a 750-bed general hospital. A trained nurse performed a chart review and recorded the changes in 1) medical/nursing care, 2) help with decision-making within 48 hours after PCU admission, and 3) documentation of family and psycho-existential care. Group discussions among PCT and PCU staff members explored the potential reasons for the changes. Five patients were excluded due to admission periods of shorter than 48 hours. The number of new/modified medical and nursing care interventions after PCU admission averaged 1.9 ± 1.5 and 1.5 ± 1.3 per patient, respectively. The most common medical treatments were: reduction in hydration volume, dose titration of opioids, change in opioid administration device, opioid rotation, and addition of NSAIDs and steroids. The most common nursing interventions were: allowing patient to take a bath, changing mattress, use of massage, and discontinuation of bronchial suctioning. In addition, PCU staff newly coordinated opportunities to discuss preferred end-of-life care with primary caregivers in 38% of the cases, family members other than primary caregivers in 16%, and patients in 6.7%. The chart documentation of family care and psycho-existential care increased considerably after PCU admission. The chief reasons for these changes were: under-recognition of the problems and unavailability of treatments (pharmacological treatments), no intention to intervene and recommendations not followed by primary physicians (rehydration therapy), no intention to intervene (nursing care), and no intention to intervene and under-recognition of the problems (help with decision-making). These data demonstrate that many patients under PCT consultation receive new or modified interventions after PCU admission. Potentially useful strategies to strengthen the PCT interventions are: modification of intervention structure to minimize under-recognition of symptoms and decision making problems (e.g., use of standardized assessment tools, regular conferences), changes in the health care system to allow unlicensed drugs, clinical studies to clarify the benefits of artificial hydration therapy, and greater efforts to intervene in the areas of nursing care, help with decision making, family care, and psycho-existential care.