The development of an instrument for the "evaluation of hospices from the bereaved family members perspective"

Inpatient hospice settings as facilities of health services are obliged to the quality assurance and internal quality development in Germany. The meaning of the patient's satisfaction as one of the indirect indicators for the judgement of nursing and care quality is indisputable by now. However, a subjective evaluation of the hospices by guests is practically and ethically problematic. An alternative approach is to investigate the views of bereaved relatives and close friends after the guest's death. The present article describes the development of an inventory for the evaluation of inpatient hospice settings from the bereaved relatives' point of view in order to examine the satisfaction of family members with the end-of-life care their loved ones received. With help of the inventory the question should be answered how family members judge the end-of-life care which was given to them and their late family members by the hospice. The construction of the questions results from the basis of existing concepts to the assessment of the end-of-life care and an analysis of all identified instruments to the evaluation of inpatient hospice settings from the perspective of bereaved relatives. The development of the questionnaire enclosed the formation of an item pool, the item choice, the critical discussion of the questions in the body of experts as well as a standardised and cognitive pretest beside a comprehensive literature research. A five-dimension questionnaire was developed that integrates physical, psychological, social, spiritual, and organisational aspects of the care at the end of life. The instrument encompasses 53 items, predominantly closed questions.     

重症监护室安宁疗护研究热点可视化分析

目的对2010-2020年Web of Science核心合集数据库中ICU安宁疗护相关文献进行可视化分析,梳理研究热点,为ICU安宁疗护的发展提供参考。方法检索选取Web of Science核心合集收录的2010-2020年ICU安宁疗护的文献,并使用VOS viewer软件对核心合集数据库中有关ICU安宁疗护的文章进行描述和可视化分析。结果2010-2020年有关ICU安宁疗护的发文数量呈持续增长趋势;发文数量前3位的国家是美国、加拿大、德国;发文机构主要集中在大学或研究所。研究的热点主要聚集在7个方面:重症患儿、结局指标、丧亲辅导、预立医疗、满意度、伦理道德、临终决策。结论有关ICU安宁疗护的研究已成为国际关注的热点,国外ICU安宁疗护的发展已经较为成熟,而我国对ICU安宁疗护的研究尚处于初级阶段,在未来的研究中,需要加强对ICU安宁疗护的关注,加强国际间的合作交流,促进我国ICU安宁疗护事业的发展。     

The Southern Alberta Renal Program database: a prototype for patient management and research initiatives

The Southern Alberta Renal Program (SARP) database was developed to respond to an urgent need for local information on clinical outcomes, laboratory information, and health care costs, and to enable our local renal program to monitor the implementation of established clinical practice guidelines. The database captures detailed demographic, clinical, and laboratory information and is unique by also capturing comorbidity, health-related quality of life and costing information for patients with end-stage renal disease (ESRD) in southern Alberta, storing the information in one common database. By collecting information on patient comorbidity, health outcomes and costs, the SARP database has enabled many quality assurance initiatives as well as research opportunities for projects involving patients with ESRD. Due to the availability of links with other available local clinical and administrative databases, information is collected with a minimal need for manual data entry. This type of database is a method by which health programs could improve the quality of patient care. Programs caring for patients with chronic medical conditions such as ESRD should examine how computer databases could assist in clinical care and improve the efficiency with which that care is delivered to their patients.     

The need for quality hospice care

Abstract

There is a growing interest in hospice care services to provide special care for dying patients and their families. The lack of measures of need for such services is addressed through a presentation of alternative estimates, in the form of criteria, for inpatient beds and home health care visits for hospice services. The estimates are applied to a medical center in order to demonstrate their use.     

People and dollars: the experience of one hospice

The Hospice of the North Shore (HONS) provides home hospice care, using local hospitals when inpatient care is essential. The actual cost of 4,779 patient days of care delivered from May 1, 1980 through Dec 31, 1981 was $14.26 per patient day. The median length of service was 31.5 days, with a mean of 66.4 days. Care was provided to 22.3% of all those dying of cancer during 1981 within the service area of the HONS. It is estimated that each patient receiving hospice care avoids 11.05 days of traditional inpatient care, resulting in a saving of $3,167.06 during the index period of this study. If this saving were extrapolated to a national scope, it is conservatively predicted that approximately $266,000,000 could be saved annually. The experience of the HONS strongly supports further development of outpatient, home care hospice organizations.     

基于电脑专家数据库的人体信息诊疗仪的研制

基于电脑专家数据库的人体信息诊疗仪.自行设计可自动诊断的电脑专家数据库和半导体激光针灸两部分组成.专家数据库系统采用开放式系统设计,中文界面,分为诊断、穴位信息、信息采集、病历管理、系统设置和帮助等模块,系统可以根据数据库里的信息和患者提供的症状或疾病名称得出具体的针灸治疗方法并显示出相应穴位的详细信息,后由半导体激光器输出波长为650nm,功率为0～30mW的半导体激光,经光学耦合系统,通过医用光纤照射人体相应穴位达到治疗目的.整个人体信息诊疗仪集激光技术、电子技术、计算机技术与医学于一体,体现了交叉学科的特点.仪器各部分工作稳定可靠、操作方便、诊疗病域广.除了用于医院的临床治疗外,还可应用于高等学校如针灸学、生物医学工程等专业的教学和科研工作之中.     

Hospice and palliative care development in Africa: a multi-method review of services and experiences

There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method review was conducted involving a synthesis of evidence from published and gray literature, ethnographic field visits to seven countries, qualitative interviews with 94 individuals from 14 countries, and the collation of existing public health data. Forty-seven African countries were reviewed, involving the assistance of numerous hospice and palliative care activists, including clinicians, managers, volunteers, policy makers, and staff of donor organizations. The 47 countries of Africa could be grouped into four categories: no identified hospice or palliative care activity (21 countries); capacity building activity is underway to promote hospice and palliative care delivery (11 countries); localized provision of hospice and palliative care is in place, often heavily supported by external donors (11 countries); and hospice and palliative care services are approaching some measure of integration with mainstream service providers and gaining wider policy recognition (four countries). Overall, services remain scattered and piecemeal in most African countries, and coverage is poor. Nongovernmental organizations are the predominant source of provision. Major difficulties relate to opioid availability, workforce development, and achieving sustainable critical mass. Models exist in Uganda, Kenya, South Africa, and Zimbabwe for the development of affordable, sustainable community-based hospice and palliative care services, but sensitivity is required in adopting Western models of hospice and palliative care for implementation in the African cultural context. Overall, interest in the development of hospice and palliative care in Africa has never been greater.     

Hospice Policy and Patterns of Care

Hospice providers and policy makers are currently evaluating the emerging patterns of hospice care, especially regarding cost containment considerations. This study compared patterns of care for two groups of hospice homecare clients–one group, which received only homecare services for the duration of the hospice career; the other, which received both hospice homecare and inpatient services. The groups were significantly different on clinical parameters, number of homecare episodes, survival rate, and place of death. The impact of policy structures on continuity of care and service equity are discussed.     

No place like the hospital

The gold standard for end-of-life care is home hospice. A case is presented in which a patient dying of irreversible small bowel obstruction from metastatic cancer insisted on remaining in the acute care hospital for care when alternative sites of care, including a skilled nursing facility and residential hospice, were available to her and covered by her health insurance plan. The ethical issues raised by this case are discussed from the perspective of the patient, the clinical team, the hospital, and the insurance company. Over the past decade, hospital-based palliative care consultation and general inpatient hospice care have sought to improve the quality of dying in the hospital. To the extent that such efforts have been successful, they may result in increasing demand for the hospital as the site for terminal care in the future.     

Evaluation of a nurse education workshop on children's grief

This paper provides an overview of the development and evaluation of an educational program to increase the knowledge of hospice and paediatric nurses who support grieving children and improve their attitudes toward death and bereavement. The specific target groups for the project included nurses providing care through community-based hospice services and inpatient palliative care units, as well as nurses providing inpatient and community-based care at a children's teaching hospital. Fifty-nine nurses from hospice, community and inpatient settings participated in three workshops. Results indicated that the workshop produced a sustained improvement in bereavement knowledge among the nurses and an improvement in their attitudes toward death and bereavement.     

A framework for the transition from nursing records to a nursing information system.

The future of patient record keeping is being developed now. Critical aspects are in place with the development of computer communication standards for health care. The Institute of Medicine's report on the computerized patient record has galvanized many in the health care field to rethink their methods of record keeping. Nurses need to examine the history of the nursing record and look toward the development of a comprehensive nursing information system. Nurses, along with the other disciplines, must examine what they want the system of the future to encompass. A suggested framework for the information system has four major nursing components: (1) data storage component, (2) transaction log, (3) nursing decision support systems, and (4) an engine to link and combine the first three components and to present a consistent easy-to-use interface to the nurse. Done properly, this approach will reduce the amount of time nurses spend charting, add dimension to their notation, and increase the efficiency of data usage for clinical practice. The nursing information system must allow information availability in a manner that accentuates quality practice while releasing the nurse from time-consuming record keeping. These goals are possible to meet, but only if nurses plan for the design now, before it becomes a fait accompli.     

The lived experience of older Chinese Singaporeans with life-threatening illnesses in a inpatient hospice

Abstract

This paper reports a study of 15 participants with life-threatening illnesses staying in an inpatient hospice. The essence of their experience was categorized into nine themes: defining hospice for the older Chinese participant; burden of others; control and distress from being dependent; worry about family; dislike of hospital stay; fear of pain and suffering; being the voice of others – impact on communication; culture barrier; and relying on religion. The results of this study provide insights into the experiences of this specific group of older people to assist improvement in their care as they die.     

Racial differences in the growth of noncancer diagnoses among hospice enrollees

Patients with noncancer life-limiting illnesses now represent over half of all hospice enrollees, compared to only one-quarter of enrollees in 1992. Whether this growth in enrollees with noncancer diagnoses has been similar for Caucasians and African Americans, a group historically underrepresented in hospice, has not been described. The purpose of this study was to compare rates of noncancer diagnoses among African American and Caucasian hospice enrollees. We analyzed data from the administrative database of VITAS Healthcare Corporation, including all African Americans and Caucasians discharged from hospice between January 1, 1999 and December 31, 2003. Of the 166,390 eligible discharges, 14.6% were African American, and 85.4% were Caucasian. Over the five-year study period, there was a similar increase in the crude proportion of enrollees with noncancer diagnoses in both groups, from 42% to 49.7% among African Americans and 57.9% to 64.3% among Caucasians. However, in multivariate analysis (adjusted for age, gender, admission level of care, payment source, Health Maintenance Organization (HMO) use, discharge year, and hospice program characteristics-size, location, presence of an inpatient unit), African Americans had 32% lower odds of having a noncancer (vs. cancer) diagnosis than Caucasians (odds ratio [OR] 0.68 [0.66, 0.77]). While numerous studies document lower rates of hospice use among African Americans than Caucasians, these findings suggest disease-specific differences in patterns of hospice use, with greater disparities in hospice use among African Americans with noncancer diagnoses than those with cancer diagnoses. Targeted efforts to increase hospice use among African Americans with noncancer diagnoses may be important in reducing racial disparities in overall hospice use and improving the quality of care for dying African Americans.     

Care after the onset of serious illness: a novel claims-based dataset exploiting substantial cross-set linkages to study end-of-life care

To date, there has not been a study using a large, nationally representative group of patients with serious illness who are at risk for hospice use and who are followed forward in time to understand the determinants of hospice use. In this paper, we outline the development of a large new cohort of 1,221,153 Medicare beneficiaries newly diagnosed with 1 of 13 serious conditions in 1993, a cohort that can be used to study end-of-life care in the United States. In describing our methods, we illustrate the possible utility of Medicare claims for end-of-life research. The members of our cohort are followed forward for hospice and other health care use through December 1997, and for mortality through June 1999. Medicare claims data on their inpatient and outpatient hospital use is also collected. Based on the ZIP Codes and counties in which cohort members lived, we were also able to characterize the health care markets of cohort members, as well as obtain other socioeconomic information about them. Information about cohort member's health care providers is also available. Detailed health information about cohort members' spouses was also collected. We conclude by highlighting the types of analyses that can be conducted in this data set.     

Unrecognised cognitive impairment in hospice patients: a pilot study

The presence of cognitive impairment in patients who are receiving hospice care can affect numerous practical, ethical and legal aspects of their healthcare. A number of factors can contribute to cognitive impairment in these patients. Prevalence rates of cognitive impairment vary widely, but it remains under-recognised and under-treated. The aims of this pilot study were to evaluate the presence and nature of cognitive deficits in patients receiving inpatient hospice care who did not have a known current or past diagnosis of a cognitive disorder or any obvious cognitive impairments. A convenience sample of 30 patients receiving inpatient hospice care underwent bedside cognitive testing. A comprehensive battery of tests was used, including the Mini-Mental State Examination (MMSE) and standardised neuropsychological tests of pre-morbid intellectual functioning, immediate and delayed recall, digit span forward and backward, verbal reasoning and letter and category fluency. On average, subjects were impaired on the MMSE and on tests of learning, verbal reasoning and letter and category fluency. Furthermore, 12 of the 30 subjects met DSM-IV cognitive impairment criteria for dementia based on impaired performance in memory and at least one other cognitive domain on testing. The results of this pilot study suggest that a sizable proportion of patients receiving inpatient hospice care have undetected but clinically significant cognitive impairments. Assessing for and helping patients, families and caregivers deal with cognitive impairment might benefit patients' quality of life, relationships and overall care at the end of life. Future research in this population is needed to evaluate the causes and time course of cognitive impairment over time, as well as any relationship between cognitive impairment and decision-making capacity.     

Impact of availability of an inpatient hospice unit on the parent hospital's quality of palliative care for Taiwanese cancer decedents, 2001-2006

Context

Hospice care has increasingly been shown to affect quality of palliative care at both the individual and institutional levels. However, an institutional effect has only been addressed in single comprehensive cancer centers/selected community hospitals.

Objectives

To investigate the impact of an inpatient hospice unit on the parent hospital’s quality of palliative care.

Methods

This was a retrospective cohort study using administrative data from the entire population of 204,850 Taiwanese pediatric and adult cancer patients who died in 2001–2006. Outcome variables were adjusted by multivariate logistic regression for five groups of confounding variables: 1) patient demographics and disease characteristics, 2) primary hospital characteristics, 3) primary physician specialty, 4) health care resources at the hospital and regional levels, and 5) historical trend.

Results

Taiwanese cancer patients who received primary care in a hospital with an inpatient hospice unit (whether or not they received hospice care) were significantly less likely to be intubated (adjusted odds ratio [AOR]: 0.71; 95% confidence interval [CI]: 0.58, 0.86) and use mechanical ventilation support (AOR: 0.70; 95% CI: 0.56, 0.87) in their last month of life. They also were more likely to use hospice care before death (AOR: 3.51; 95% CI: 1.57, 7.86). Furthermore, if they used hospice care, they tended to be referred earlier than cancer patients being cared for in a hospital without an inpatient hospice unit.

Conclusion

Integrating both acute care and palliative care approaches to caring for terminally ill cancer patients in the same hospital may influence the quality of palliative care throughout the hospital as evidenced by our findings that these patients have lower likelihood of being intubated with mechanical ventilation support in the last month of life, greater propensity to receive hospice care in the last year of life, and a trend toward earlier referral to hospice care. The generalizability of these results may be limited to patients who died of a noncancer cause and by the two groups not being exactly matched for patients’ characteristics.     

Patterns of Care for Patients with Cancer before and after the Establishment of a Hospice Ward

A majority of people die in acute hospital care, in a culture of quickness primary aimed at curing. There are indications that hospice care in various forms will spread during the present decade in Sweden. The hospice philosophy contributes to a culture of slowness, where the patient is not only allowed but is encouraged to live at his own pace. As a first step in establishing for whom hospice inpatient care is the best alternative, patient flow to a newly started hospice ward was studied. All patients (n = 1464) who died at the Medical Centre Hospital with a primary diagnosis of cancer during the period of study were compared regarding place of death, diagnosis, gender, age and length of the last period of care. The year before the ward was established, 82% of patients died in acute hospital care compared with 59% during the hospice ward's third year of operation. A total of 315 patients (22%) died in the hospice ward during the study period. The percentage of these patients over the age of 80 was significantly higher (p = 0.0001), and they also had a longer continuous final period of care. More women (57%) than men (43%) were cared for at the hospice ward. The hospice ward has in this way influenced the pattern of care in the hospital.     

Creating and Analyzing a Statewide Nursing Quality Measurement Database

PURPOSE: To explicate a replicable methodology for designing and analyzing a large ongoing reliable and valid quality database to examine nurse staffing and patient care outcomes in acute care hospitals. DESIGN: Prospective nurse staffing, process of care, and patient outcomes data based on the American Nurses Association's (ANA) nursing quality indicators collected from a voluntary convenience sample at acute care hospitals in California with rolling-site accrual. METHODS: The ongoing CalNOC database development and repository project, the largest statewide effort of its kind in the United States (US), currently includes data on hospital nurse staffing, patient days, patient falls, pressure ulcer and restraint prevalence, registered nurse (RN) education, and patients' perceptions of satisfaction with care. FINDINGS: As of May 2003, the CalNOC database contained staffing data from 842 units in 134 acute care hospitals over 20 quarters from April 1998 to March 2003. The repository also included clinical outcome information on 34,262 reported patient falls, pressure ulcer prevalence data on 41,982 patient observations, and service outcome data on patient satisfaction from 26,461 patients. Participating hospitals receive quarterly reports allowing them to benchmark their own performance against other participating hospitals. CalNOC methods have been adapted and replicated by both the Military Nursing Outcomes Database and VA Nursing Outcomes Database projects, and CalNOC nursing-sensitive measures have been endorsed by the National Quality Forum. CONCLUSIONS: This working model for collecting reliable and valid data was derived from multiple hospitals across California. The data are the basis for studies to contribute to the development of evidence-based public policy, and for ongoing study of the effects of nurse staffing on clinical and service outcomes.     

Needs assessment: a tool for hospice expansion

This article outlines the strategies adopted by a voluntary hospice to identify the local needs for hospice care, and summarizes the needs assessment findings. Since the advent of specialist palliative hospice inpatient services, only a small proportion of dying patients have been admitted to hospices. Recent UK government initiatives have promised extra or equalized funding and perhaps a widening of the criteria for admission. The work reported here was based on Stevens and Raftery's (1997) protocol for needs assessment and Higginson's (1997) review of the components of health care needs in palliative and terminal care. These were used to identify local requirements and provide evidence for expansion of the hospice and the services it provides to the local health economy.     

社区护士临终关怀知识和态度情况调查及其影响因素研究

目的:了解社区护士临终关怀知识和态度的情况,研究不同背景护士临终关怀知识与态度的差异。方法:通过问卷对6所社区卫生服务中心的211名护士进行调查。结果 :仅19.0%的社区护士对临终关怀知识的掌握程度达到良好;社区护士临终关怀态度的得分处于中等水平。社区护士临终关怀知识的掌握情况与其学历、职称、工作年限有关(P<0.05),而临终关怀态度则与其学历、工作年限、收入、宗教信仰、民族、职称有关(P<0.05)。结论:通过加强社区护士临终关怀基础教育及继续教育,可帮助其具备更专业的临终关怀知识、技能及良好的心理素质,以促进我国临终关怀的发展。