Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

Specialist palliative care (SPC) has expanded recently in Ireland to incorporate diseases other than cancer, including dementia. Two care areas that pose specific challenges for SPC nurses when caring for people with advanced dementia are pain and nutrition/hydration. Assessment and management of pain for a patient who has advanced dementia differs greatly from that for a typical palliative care patient. Similarly, nutrition and hydration pose extraordinary ethical and practical dilemmas not encountered when caring for a patient without dementia. This paper reports a literature review which revealed that although evidence-based information related to each of these areas is available, it tends to be written from the perspective of health professionals with an interest in dementia rather than from the perspective of the SPC nurse. SPC nurses require evidence-based palliative care research to guide their practice, but such research appears to be limited for patients with advanced dementia. Knowledge from specialists in both dementia care and palliative care needs to be combined if we are to provide these patients with the best possible end-of-life care. Further research is required and evidenced-based guidelines need to be formulated.     

Problems faced by relatives caring for cancer patients at home

The care of patients suffering from advanced cancer is not limited in the hospital setting. It continues at home where the burden of care is borne by specific individuals. The aim of the present study was to survey and record the various problems faced by those who care for cancer patients at home. The study was conducted in our hospital during the summer of 2007. All participants completed, during a personal interview, a questionnaire which covered pathologic, social, psychological, spiritual/religious and financial problems. Seventy-six carers returned fully completed questionnaires. The most frequent problems reported were: anxiety regarding the patient's future (61.8%), troublesome symptoms such as pain (54%), increased economic burden—financial difficulty (51.3%), problems with patient's feeding (50%), unhappiness or depression (48,7%), emotional upset (47.4%), worsening of the patient's behaviour and personality (38.2%), difficulty of establishing a positive attitude regarding their current status (34.2%), transport to hospital (32.9%), assistance from the wider family circle (25%). Taking care of cancer patients at home creates several problems among carers. Many of them remain undetected. The acknowledgement and recognition of these problems by health-care professionals might contribute to finding solutions in order to assist the difficult task of these individuals.     

The communication challenges faced in adopting a palliative care approach in advanced dementia

This paper discusses one aspect from the findings of an Australian study aimed at understanding the needs of people with advanced dementia. Specifically, this paper focuses on the communication issues that might potentially inhibit the implementation of a palliative care approach for a person with advanced dementia in a residential aged care facility (RACF). Six focus groups consisting of 34 participants and 24 semistructured interviews were conducted. Participants were drawn from palliative care specialty staff, palliative care volunteers, designated aged or dementia specialist staff from an area health service, general practitioners, RACF staff and family carers. The findings show communication issues identified by the participants were a significant factor impacting on their capacity to adopt a palliative care approach in caring for people with advanced dementia. The findings support the need for education, skill development and networking to occur among the key providers of care in RACFs to ensure the provision of 'best practice' palliative care to residents with advanced dementia and their families.     

Management of infections in palliative care patients with advanced cancer

To characterize infections and their management in oncology patients at the end of life, we conducted a review of the literature. Eight studies assessing infection in 957 patients with various malignancies were identified. Forty-two percent of terminally ill patients developed infections in the final phase of care. The greatest frequency of treatment with antibiotics occurred in acute care hospitals. Enterobacteriaceae and S. aureus were the most frequently isolated bacteria, and urinary and respiratory tracts the most frequently involved sites of infection. A total of 19-39% of individuals with suspected infection and advanced cancer died. The decision whether to treat or not in the palliative care setting may be complex and requires an individualized approach. Further research in this area will help develop a consensus for management that will facilitate education of students and residents regarding complex decisions of care of infections at the end of life.     

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.     

Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses

BACKGROUND: Little information exists about the outcomes from nursing interventions, and few studies report new approaches to evaluating the complex web of effects that may result from specialist nursing care. AIMS: The aim of this study was to explore nursing outcomes for patients with advanced cancer that may be identified as resulting from the care of a Macmillan specialist palliative care nurse. METHODS/INSTRUMENTS: Seventy-six patients referred to 12 United Kingdom Macmillan specialist palliative care nursing services participated in a longitudinal study of their care over 28 days. Patients were interviewed and completed the European Organization for Research on Treatment of Cancer Quality of Life Scale and the Palliative Care Outcomes Scale at referral, and 3, 7 and 28 days following referral to a Macmillan specialist palliative care nursing service. A nominated carer was interviewed at baseline and 28 days. Notes recorded by Macmillan specialist palliative care nurses in relation to each patient case were analysed. FINDINGS: Significant improvements in emotional (P = 0.03) and cognitive functioning (P = 0.03) were identified in changes in patients' European Organization for Research on Treatment of Cancer Quality of Life Scale scores, and in Palliative Care Outcomes Scale patient anxiety scores (P = 0.003), from baseline to day 7. Analysis of case study data indicated that overall positive outcomes of care from Macmillan specialist palliative care nursing intervention were achieved in 42 (55%) cases. STUDY LIMITATIONS: Sample attrition due to patients' deteriorating condition limited the value of data from the quality of life measures. The method developed for evaluating nursing outcomes using data from patient and carer interviews and nursing records was limited by a lack of focus on outcomes of care in these data sources. CONCLUSIONS: A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.     

Hospital-based palliative care: cost-effective care for patients with advanced disease

Palliative care programs in acute care facilities provide a safety net for patients with advanced disease. While providing aggressive symptom management for patients, these programs are also cost-effective. This author discusses the economic advantages of improving care for patients with advanced disease.     

Psychosocial aspects of palliative care in advanced cancer.

One hundred patients with advanced cancer referred to a palliative care service were evaluated for psychosocial distress using a standard questionnaire. A high incidence of emotional upset, financial distress, and home-care problems was found. Psychosocial distress is common among patients (and their families) with advanced cancer and may have a significant impact on provision of optimal care. Community services are often inadequate. A dedicated palliative care service employing a multidisciplinary approach can best provide care. We make specific recommendations about how to combat psychosocial distress using specific administrative and management techniques.     

Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients

The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that 'do not resuscitate' orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.     

晚期癌症患者及家属安宁护理接受度调查分析

目的 调查晚期癌症患者及家属对安宁护理的接受度及影响因素,为有针对性的安宁护理发展提供依据.方法 应用自缩制的一般资料调查表对146例正在医院接受治疗的晚期癌症患者及143例在医院陪伴患者的家属,以问卷方式进行调查.结果 56.2%的晚期癌症患者、67.1%的患者家属愿意接受安宁护理.结论 为晚期癌症患者提供安宁护理服务既是必要的也是可行的,同时为了更好地发展安宁护理,应广泛开展死亡教育.     

Primary care nurse practitioners' integrity when faced with moral conflict

Primary care presents distressful moral problems for nurse practitioners (NPs) who report frustration, powerlessness, changing jobs and leaving advanced practice. The purpose of this grounded theory study was to describe the process NPs use to manage moral problems common to primary care. Twenty-three NPs were interviewed, commenting on hypothetical situations depicting ethical issues common to primary care. Coding was conducted using a constant comparative method. A theory of maintaining moral integrity emerged consisting of the phases of encountering conflict, drawing a line, finding a way without crossing the line, and evaluating actions. The NPs varied in their awareness and the discord encountered in conflict, and in clarity, flexibility and justification of the line drawn. A critical juncture occurred when NPs evaluated how well integrity had been maintained. Some experienced no distress while others experienced self-doubt, regret, outrage and frustration at external constraints, and attempted to reconcile through avoiding, convincing themselves, and compensating.     

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。     

Managing pain from advanced cancer in the palliative care setting

Managing complex pain at the end of life is an essential aspect of palliative care. Such care is best guided by a comprehensive evaluation of the physiologic sources of pain to determine appropriate analgesia. Using the case of Mrs. J, a woman with advanced ovarian cancer, key principles of complex pain management at the end of life are reviewed, including optimum use of opioids and co-analgesics. In addition to physical assessment, total care of the patient and family facing imminent death should be based on an assessment of psychological, social, and spiritual factors. The assessment and management of pain and suffering are guided by an interdisciplinary team focused on goals of comfort and facilitating a death that respects the life of the patient who is dying.     

晚期腺癌合并弥散性血管内凝血患者姑息护理评估与实践

目的总结3例晚期腺癌患者合并弥散性血管内凝血(DIC)的姑息护理评估与实践经验。方法通过持续关注患者病情,及时发现DIC并动态评估其进展,加强出血、低血压休克的护理及舒缓照护等相关措施,帮助患者进行个人生命回顾,做好家属的支持与安抚。结果患者均采用对症支持治疗,遵从患者及家属意愿,于病情恶化昏迷后返家过世。结论对晚期腺癌合并弥散性血管内凝血患者进行姑息护理,可使患者有尊严地度过生命的最后时光。