Predictive factors for home deaths among cancer patients in Swedish palliative home care

Five palliative home care teams participated in a prospective Swedish study that included 221 palliative cancer patients. All patients with incurable malignant disease that were admitted and died during 1999 were included. On admission, demographic data were recorded. When patients, despite ongoing home care, were referred to institutional care, doctors and nurses involved were interviewed about the reasons for this. After the patients' death next of kin involved in the care were interviewed according to a questionnaire. Approximately half of the patients died at home. The reasons for referral showed a wide diversity and included both social and psychosocial factors, medical emergencies and problems related to symptom control. A preference for dying at home and not living alone were shown to be the strongest predictors of home death (p = 0.001). However, 35% of patients living alone died at home. Interestingly enough, Karnofsky performance index (KPI) at admission was significantly lower for those dying at home, despite similar mean time of care. The understanding of impending death was significantly more common among the families of those patients dying at home.     

The home care experience as perceived by the caregivers of Chinese dialysis patients

The caring issues perceived as crucial by caregivers in home-based dialysis, have never been systematically studied in any depth in Hong Kong. This research aimed to explore various characteristics of the home care experience perceived by caregivers. Thirty caregivers of home dialysis patients were interviewed using a phenomenological approach. Selection was by convenience. The interviews were conducted in the outpatient clinic following receipt of the informant's consent. The instrument consisted of two aspects designed to elicit the phenomena. The caregivers' responses seemed to indicate that caregiving is likely to have financial, emotional, social and health-related implications.     

Nutritional support and risk status among cancer patients in palliative home care services

Goal of work  The aim of this study was to investigate the nutritional risk status and use of nutritional support among cancer patients enrolled in palliative home care services. Differences in the use of nutritional support in relation to nutritional, social and clinical factors, as well as survival were also investigated. Patients and methods  Structured telephone interviews were conducted with cancer patients enrolled in all 21 palliative home care services in the Stockholm region. An interview guide was designed to investigate topics related to the patient’s nutritional situation. Main results  Interviews with 621 patients were analysed. Sixty-eight percent of the patients were scored as at nutritional risk according on a modified version of NRS-2002. Nutritional support was used by 55% of the patients, with oral nutritional supplements most common and 14% using artificial nutrition. Use of nutritional support was related to low BMI and severe weight loss and was more common in patients with shorter survival times. Conclusions  These findings demonstrate that nutritional support is used to treat already malnourished patients with shorter survival time, rather than to prevent malnutrition. A more structured approach to nutritional issues for patients in palliative phases, which considers life expectancy and psycho-social aspects of nutritional issues, could help identify potential candidates for nutritional support.     

Treatment adherence and patients’ acceptance of home infusions with adenosine 5′-triphosphate (ATP) in palliative home care

Goals of work  In preterminal cancer patients, provision of palliative care in the patients’ own environment is preferred. The aim of the present study was to evaluate patients’ and caregivers’ treatment adherence and patients’ acceptance of home infusions with adenosine 5′-triphosphate (ATP). Patients and methods  Preterminal cancer patients (life expectancy <6 months) with mixed tumor types were eligible for the study. Patients received a maximum of eight weekly intravenous 8–10 h ATP infusions. Evaluation of treatment adherence was based on registration of protocol deviations and patients’ acceptance by structured interviews with patients. Main results  Fifty-one patients received a total of 266 intravenous ATP infusions. The infusion protocol was well executed: mean duration ≈8.30 h, stepwise achievement of the maximum infusion rate within 30 min in 65% of the infusions, and almost no delay in weekly administration. All except one patient were not burdened by the administration of the infusions at home and none of them had felt afraid. The majority of patients found the advantages of the ATP infusions outweighing the disadvantages. However, an important bottleneck in the administration of ATP infusions at home was difficulty in establishing venous access. Conclusion  ATP infusions at home are well accepted by patients. Difficulties in establishing venous access might be reduced by composing specialized home infusion teams working both at the day care center and at home or by adopting an alternative route of venous access.     

A comprehensive picture of palliative care at home from the people involved

The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.     

District nurses’ role in palliative care provision: A realist review

Objectives

The aim of this review is to construct a detailed account of the role of the district nurse (generalist registered nurse providing nursing care in primarily home settings) in providing palliative care, to determine if and how district nursing care provides effective care to such patients at home, and to examine the utility of a realist review for the above purpose.

Design

Realist review of literature.

Data sources

Papers in English reporting aspects of the district nurse role in the provision of palliative care are included. Electronic databases (Ovid Medline, Cinnahl, British Nursing Index, Embase, PsycINFO and EBM reviews) were searched, supplemented by citation tracking and grey literature searches.

Review methods

Assumptions about district nursing practice with palliative care patients are derived from a range of sources. Reviewed papers are interrogated to support, refute or develop these statements.

Results

Forty six papers employing a range of research methods are incorporated into the review. Studies focus on district nurses, patients, family carers and other professionals and include work from a range of countries. Studies highlight the value district nurses place on palliative care provision, the importance of developing a relationship with patients, and the emotional difficulties of providing such care. District nurses have key skills in providing physical care and in coordinating the work of others, but struggle more with psychological aspects of care. District nurses report feeling undervalued, and express some reluctance to work with other health and social care professionals to provide care.

Conclusions

There is little in this synthesis to shed light on the outcomes of care or to explicitly guide practice. District nurses clearly articulate what they consider to be important, but research in this area is limited and needs to undergo a renaissance to examine what is important: namely what district nurses do in practice; what patients and family carers views are on what they do and do not do; and how district nurses can improve care outcomes. The inclusiveness of realist review works well for this field of study.     

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey

Objectives

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings.

Design, settings and participants

A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%).

Results

Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings.

Conclusions

This study demonstrated the importance of both the hospital and community nurses’ role in increasing the patients’ chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients’ clinical status, and caregivers’ ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control.     

基于家庭医生制服务开展社区居家舒缓疗护的效果研究

目的探讨在家庭医生制基础上开展社区居家舒缓疗护服务的效果。方法选择本社区服务中心18例临终患者在家庭医生制基础上开展居家舒缓疗护,比较干预前后患者对该服务的满意度。并针对居家舒缓疗护实践过程遇到的现实问题提出合理建议。结果在社区开展以家庭医生制为基础的居家舒缓疗护模式,社区居民更容易接受。可以提高临终患者生命质量,也能帮助其家属和家庭平稳地度过居丧期,凸显了人文关怀。结论在家庭医生制基础上开展社区居家舒缓疗护切实可行,值得推广。但仍面临社区舒缓疗护人员队伍建设不足、资金匮乏、居民认知度低等问题,需加大队伍建设和培训、资金的更多合理投入和社会的多方支持、关注。     

国际居家护理模式现况与研究进展

随着全球老龄化的加剧,居家护理成为健康养老的新理念。如何为老年人提供连续实用、经济便利的居家照护服务,已成为各个国家长期照护体系改革的目标。目前国际上具有代表性的居家护理体系包括私人及社会保险支付费用、私有机构提供服务的模式（美国模式）;政府支付费用、私有机构提供服务为主的模式（加拿大模式）;政府与个人共同支付费用、多...     

Supportive and palliative care at the University Hospital Lausanne

 The development of supportive and palliative care services within the Canton of Vaud in Switzerland is traced, and the current situation and future plans are outlined.     

Pediatric palliative care

Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.     

Ethical issues in palliative care

Ethical problems in medicine are common, especially when caring for patients at the end of life. However, many of these issues are not adequately identified in the outpatient setting. Primary care providers are in a unique and privileged position to identify ethical issues, prevent future conflicts, and help patients make medical decisions that are consistent with their individual values and preferences. This article describes some of the more common ethical issues faced by primary care physicians caring for patients with life-limiting illness.     

The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.Patients and methods Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).Main results Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05).Conclusions Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.     

Capturing activity,costs, and outcomes: The challenges to be overcome for successful economic evaluation in palliative care

Abstract

Palliative care, as with other health care services, is faced with the difficulty of competing for limited health care resources. Health care decision makers seek to maximize ‘value for money’ when selecting services to fund. The challenges for the palliative care community are to (a) demonstrate the cost effectiveness of its interventions in comparison to other health services and (b) provide evidence that the resources currently allocated are being used efficiently. Health economic evaluation can be conducted to support this. In this paper different economic approaches to evaluating health care services are introduced. Providing examples from (home based) palliative care we consider the opportunities to progress this work. We also describe the related challenges of capturing activity, costs, and outcomes. Although the very nature of this area of care presents unique methodological challenges that will need to be overcome, appropriate analyses will allow comparisons across the wider health sector and strengthen the argument for palliative care services.     

姑息护理的发展现状与思考

阐述了姑息护理的内涵和开展模式，回顾目前发展现状，提出了开展死亡教育课程、发展姑息护理教育、建立姑息护理质量标准体系、政策上支持姑息护理的发展等建议。     

姑息护理的发展现状与思考

阐述了姑息护理的内涵和开展模式,回顾目前发展现状,提出了开展死亡教育课程、发展姑息护理教育、建立姑息护理质量标准体系、政策上支持姑息护理的发展等建议。     

Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center

Background  There is wide variation in the frequency of reported use of palliative sedation (PS) to control intractable and refractory symptoms in terminally ill patients. The aim of this study was to determine the frequency and outcomes of PS use and examine patterns of practice after establishment of a policy for the administration of midazolam for PS in our palliative care unit (PCU). Materials and methods  This retrospective study reviewed PCU admissions for 2004 and 2005 and pharmacy records to identify patients who received chlorpromazine, lorazepam, or midazolam for PS in the PCU. Data on indication for PS, drug used, and discharge outcome were assessed for each patient. Results  During the period studied, there were 1,207 PCU admissions. Of these patients, 186 (15%) received PS; and 143 (41%) of the 352 patients who died in the PCU received PS. The median age of PS patients was 58 (range, 20–84) years, and 106 (57%) were male. The most common indications for PS were delirium, 153 cases (82%); dyspnea, 11 (6%); and multiple indications, 12 (6%). Midazolam was used in 18 PS cases (10%). Six (55%) of 11 patients with dyspnea received midazolam for PS, compared with 12 (7%) of 175 patients with other indications for PS (p < 0.001). Forty-three (23%) of 186 PS patients were discharged alive, compared with 812 (80%) of 1,021 patients who did not receive PS (p < 0.001). Conclusions  PS was required in 15% of PCU admissions, and 23% of PS patients were discharged alive. Our findings suggest a potential for significant underreporting of overall PS. If our institution’s policy on midazolam use for PS were less restrictive, midazolam use might increase. More research is needed to define the optimal agent for inducing rapid, effective, and easily reversible PS. These data were presented in part at the Annual meeting of the American Society of Clinical Oncology; Atlanta, GA, 2006.     

The existential experiences of receiving soft tissue massage in palliative home care—an intervention

Background  Soft tissue massage is currently used in palliative care for the relief of anxiety and pain. Only few studies have focused on patients’ deeper experience of receiving the massage. Aim  The purpose of this study was to explore how patients with cancer in palliative home care experienced soft tissue massage. Materials and methods  Twenty-two patients received soft tissue massage (hand or foot) nine times over a period of 2 weeks. Each session lasted for 25 min. Following the last massage session, a qualitative interview was conducted. The analysis was performed using a hermeneutic approach. Findings  Soft tissue massage generated feelings of existential respite with perceptions of being released from illness for a while. Two categories constituted the basis of the experiences: (1) “an experience of thoughtful attention” and (2) “a sensation of complete tranquility” resulting in the overarching theme “A time of existential respite.” Conclusion  The patients experienced the massage to give meaning and to be important as it generated feelings of an inner respite. Relevance to clinical practice  Soft tissue massage appears to be an appreciated source of support to dying patients in palliative home care. The method is easy to comprehend and relatively short (25 min) which may imply that it is a suitable complement in nursing care for this patient group.