The quality of end-of-life care of hospitalized patients is an important topic, but so far little explored in the Czech Republic. The aim of this study was to map the factors influencing the end-of-life care decision-making process in selected Czech hospitals and to describe it based on data from medical records and from the perspective of a doctor. The research included data obtained from the medical records of 240 deceased patients (mean age 76.9 years, 41.6% women). The research sample of medical doctors who commented on the decision-making about end-of-life care for these patients consisted of 369 physicians (mean age 35.9 years, 61% women). The results pointed to persistent deficiencies in the written recording of the care goals, prognosis, and possible decision to limit care. Medical doctors limit health care primarily based on consensus among physicians, the patient is usually not invited to the decision-making process. Patient preferences for the end-of-life period are in most cases not ascertained or this question is postponed. The institute of a previously stated wish did not appear in the examined group at all. It can be concluded that decisions about end-of-life care usually take place without knowledge of patients' values and preferences. The results indicate the need to improve the training of doctors and medical students, which should, in addition to building professional competencies, include training in effective communication with patients at the end of life.
- Keywords
- Decision making, End of life care, advance directives, communication, death, end of life, ethics, patient preferences, symptoms,
- MeSH
- Adult MeSH
- Physicians * MeSH
- Humans MeSH
- Terminal Care * MeSH
- Decision Making MeSH
- Aged MeSH
- Death MeSH
- Check Tag
- Adult MeSH
- Humans MeSH
- Male MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic MeSH
PURPOSE: To determine the frequency of the Nursing Intervention Classification Dying Care activities performed by nurses with end-of-life (EOL) patients. METHODS: A cross-sectional, descriptive study using a structured questionnaire to determine the frequencies of Dying Care activities performed by 201 Czech nurses. FINDINGS: Nurses reported more frequent use of activities focused on the physical comfort of EOL patients. Significant relationships were found between frequencies in some activities and the nurses' education level, length of work experience, and the department type. CONCLUSIONS: Nurses reported infrequent use of communication activities with patients and relatives, which is related to the length of practice. CLINICAL RELEVANCE: It is necessary to focus on communication and psychosocial needs of EOL patients in both pregradual and lifelong nursing education. CÍL: Zjistit frekvenci aktivit NIC intervence Péče o umírající mezi českými sestry u pacientů v závěru života. METODY: Průřezová deskriptivní studie využívající strukturovaného dotazníku pro určení frekvence aktivit Péče o umírající prováděné 201 sestrou. VÝSLEDKY: Sestry u pacientů v závěru života častější využívají aktivity zaměřené na fyzický komfort. Významné vztahy byly nalezeny mezi frekvencí některých aktivit a úrovní vzdělání sester, délkou praxe a typem pracoviště. ZÁVĚRY: Sestry uváděly nepříliš časté používání komunikačních aktivit s pacienty a příbuznými, což souvisí s délkou jejich praxe. KLINICKÁ RELEVANCE: Je třeba se zaměřit na komunikaci a psychosociální potřeby pacientů v závěru života jak v pregraduálním tak celoživotním vzdělávání sester.
- Keywords
- Dying care, end-of-life, nursing intervention, terminally ill,
- MeSH
- Humans MeSH
- Nursing Care * MeSH
- Palliative Care * MeSH
- Terminal Care * MeSH
- Cross-Sectional Studies MeSH
- Surveys and Questionnaires MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.
- Keywords
- Communication, Conflict management, Cultural variations, Decision-making, End of life, Family-centered care, GRADE, Intensive care unit, Palliative care,
- MeSH
- Intensive Care Units * organization & administration standards MeSH
- Communication MeSH
- Humans MeSH
- Palliative Care * standards methods MeSH
- Critical Care methods standards MeSH
- Terminal Care * standards methods MeSH
- Decision Making MeSH
- Societies, Medical MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Practice Guideline MeSH
- Geographicals
- Europe MeSH
This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended responses for defining hospice care, palliative care, and "end of life," and a series of questions related to the following areas-attitudes toward EOL care, current practice and EOL interventions, structure of care, and routine barriers. Overall experts strongly agreed that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic, interdisciplinary approaches using measures of comfort across domains. However, it appears the experts felt that in most countries the reality fell short of what they believed would be ideal care. As a result, experts call for increased training, communication, and access to specialized EOL services within the nursing home.
- Keywords
- End-of-life care, hospice, nursing home research, palliative care,
- MeSH
- Internationality * MeSH
- Humans MeSH
- Palliative Care MeSH
- Terminal Care * MeSH
- Hospice Care MeSH
- Nursing Homes * MeSH
- Health Care Surveys MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
CONTEXT: The predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients. OBJECTIVES: This review aimed to develop a theoretical structural model of autonomy at the end of life based on patients' end-of-life care preferences. METHODS: In this review, we used systematic strategy to integrate and synthesize findings from both qualitative and quantitative studies investigating patients' view on what is important at the end of life and which factors are related to autonomy. A systematic search of EMBASE (OVID), MEDLINE (OVID), Academic Search Complete (EBSCO), CINAHL (EBSCO), and PsycINFO (EBSCO) was conducted for studies published between 1990 and December 2015 providing primary data from patients with advanced disease. RESULTS: Of the 5540 articles surveyed, 19 qualitative and eight quantitative studies met the inclusion criteria. We identified two core structural domains of autonomy: 1) being normal and 2) taking charge. By analyzing these domains, we described eight and 13 elements, respectively, which map the conceptual structure of autonomy within this population of patients. CONCLUSION: The review shows that maintaining autonomy at the end of life is not only a concern of making choices and decisions about treatment and care but that emphasis should be also put on supporting the patients' engagement in daily activities, in contributing to others, and in active preparation for dying.
- Keywords
- Autonomy, end of life, palliative care, patient preference, quality of life, terminally ill,
- MeSH
- Quality of Life * MeSH
- Humans MeSH
- Personal Autonomy * MeSH
- Patient Preference * MeSH
- Palliative Care * MeSH
- Terminal Care * MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Review MeSH
The objective was to identify the attitudes of progressive neurological disease (PND) patients and their family members regarding end-of-life care, and their worries about dying. The sample included 327 participants. The Attitudes of Patients with PND to End-of-Life Care questionnaire was used to collect the data. Statistically significant differences in the assessment of attitudes towards end-of-life care between patients and family members were identified (p < 0.001). Family members more frequently favored patients being kept alive at any cost; patients more commonly wished to have their end of life under control. Respondents most frequently deferred to doctors when it came to decisions on treatment to keep patients alive. However, both patients and family members wanted patients to be able to decide on their treatment by leaving a written record of their previously stated wishes. The demands of patients and their families regarding end-of-life care should be documented in individual care plans.
- Keywords
- attitudes, end of life care, ethics, neurology, quality of life,
- MeSH
- Humans MeSH
- Terminal Care * MeSH
- Attitude MeSH
- Cross-Sectional Studies MeSH
- Surveys and Questionnaires MeSH
- Family MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
BACKGROUND: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire). METHODS: Following focus group discussion, four main areas of interest were identified: patients' and family members' attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients' life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members. RESULTS: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire. CONCLUSIONS: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.
- Keywords
- Attitudes, Care, End of life, Neurology, Reliability, Validity,
- MeSH
- Humans MeSH
- Terminal Care * MeSH
- Attitude to Health * MeSH
- Attitude MeSH
- Surveys and Questionnaires MeSH
- Psychometrics * MeSH
- Reproducibility of Results MeSH
- Family MeSH
- Pregnancy MeSH
- Check Tag
- Humans MeSH
- Male MeSH
- Pregnancy MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.
- Keywords
- Dementia, End-of-life care, Family caregiver, Nursing home, Patient engagement, Shared decision making,
- MeSH
- Dementia * therapy MeSH
- Humans MeSH
- Caregivers MeSH
- Terminal Care * MeSH
- Nursing Homes MeSH
- Family MeSH
- Developing Countries MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
BACKGROUND: Currently, there are no studies aimed at evaluating the quality of life (QoL) of patients with end-stage disease during hospitalization and the factors that influence it. AIM: The aim of the research was to identify predictors of change in the QoL of patients hospitalized due to advanced stage of disease. METHODS: The sample consisted of 140 patients with end-stage disease who were hospitalized on this account. For evaluation of QoL, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) was used. The Hospital Anxiety and Depression Scale and Karnofsky Performance Status questionnaires were used for the assessment of mental and functional status. For the evaluation of predictors of negative change in QoL, a logistic regression analysis was used. RESULTS: During hospitalization, there was a significant deterioration in the scores given for all domains of the functional QLQ-C30 scale, but not the symptomatic scale. Predictors of change in overall QoL detected were marital status, improved functional status, and depression detected on admission to hospital. Gender and age were found to be protective factors against deterioration in overall QoL. CONCLUSION: Sociodemographic characteristics and mental and functional status may be associated with change in QoL of patients with end-stage disease during hospitalization.
- Keywords
- HRQoL, anxiety, depression, end of life,
- MeSH
- Hospitalization statistics & numerical data MeSH
- Quality of Life psychology MeSH
- Middle Aged MeSH
- Humans MeSH
- Terminal Care psychology MeSH
- Attitude to Death * MeSH
- Attitude to Health * MeSH
- Forecasting MeSH
- Surveys and Questionnaires MeSH
- Psychometrics MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Terminally Ill psychology MeSH
- Check Tag
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic MeSH
Rapid demographic changes and rising prevalence of chronic disease bring about changing demands on health and social care. Declining mortality in higher age groups and increasing life expectancy results in changing structure of users of health services, the structure of causes of death and, of course, in the age distribution of deaths. The Czech Republic is among the countries with the most rapidly aging populations.Although large majority of people wish to age and also to die at home, in 2012, nearly three-quarters of people died in a hospital or other health and social facilities. Despite the deteriorating health of residents of residential social services and the high and increasing number of people dying in those institutions, the availability and quality of health care in those facilities is very problematic. Palliative care and long-term care should respond to the changing needs of our population, arising from rapidly ageing population and increasing prevalence of chronic diseases, regardless of whether such care is provided in health or social care facilities.
- Keywords
- dying, end-of-life care, long-term care, medical anthropology., palliative care, public health,
- MeSH
- Chronic Disease MeSH
- Long-Term Care methods statistics & numerical data MeSH
- Middle Aged MeSH
- Humans MeSH
- Palliative Care methods statistics & numerical data MeSH
- Terminal Care methods statistics & numerical data MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Check Tag
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Review MeSH
- Geographicals
- Czech Republic MeSH
