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.

• Klíčová slova
• Autonomy, end of life, palliative care, patient preference, quality of life, terminally ill,
• MeSH
• kvalita života * MeSH
• lidé MeSH
• osobní autonomie * MeSH
• pacientova volba * MeSH
• paliativní péče * MeSH
• péče o umírající * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• přehledy MeSH

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.

• Klíčová slova
• Decision making, End of life care, advance directives, communication, death, end of life, ethics, patient preferences, symptoms,
• MeSH
• dospělí MeSH
• lékaři * MeSH
• lidé MeSH
• péče o umírající * MeSH
• rozhodování MeSH
• senioři MeSH
• smrt MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Česká republika 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.

• Klíčová slova
• HRQoL, anxiety, depression, end of life,
• MeSH
• hospitalizace statistika a číselné údaje   MeSH
• kvalita života psychologie   MeSH
• lidé středního věku MeSH
• lidé MeSH
• péče o umírající psychologie   MeSH
• postoj ke smrti * MeSH
• postoj ke zdraví * MeSH
• předpověď MeSH
• průzkumy a dotazníky MeSH
• psychometrie MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• umírající psychologie   MeSH
• Check Tag
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Česká republika 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.

• Klíčová slova
• End-of-life care, hospice, nursing home research, palliative care,
• MeSH
• internacionalita * MeSH
• lidé MeSH
• paliativní péče MeSH
• péče o umírající * MeSH
• péče v hospici MeSH
• pečovatelské domovy * MeSH
• průzkumy zdravotní péče MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH

AIM: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. BACKGROUND: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. DESIGN: A systematic review was conducted. DATA SOURCES: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. RESULTS: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. CONCLUSION: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.

• Klíčová slova
• end of life, ethics, nursing, palliative care, systematic review,
• MeSH
• kvalitativní výzkum * MeSH
• lidé MeSH
• péče o umírající * etika   MeSH
• výzkumný projekt * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• systematický přehled 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.

• Klíčová slova
• Dying care, end-of-life, nursing intervention, terminally ill,
• MeSH
• lidé MeSH
• ošetřovatelská péče * MeSH
• paliativní péče * MeSH
• péče o umírající * MeSH
• průřezové studie MeSH
• průzkumy a dotazníky MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články 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.

• Klíčová slova
• attitudes, end of life care, ethics, neurology, quality of life,
• MeSH
• lidé MeSH
• péče o umírající * MeSH
• postoj MeSH
• průřezové studie MeSH
• průzkumy a dotazníky MeSH
• rodina MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH

These European Resuscitation Council Ethics guidelines provide evidence-based recommendations for the ethical, routine practice of resuscitation and end-of-life care of adults and children. The guideline primarily focus on major ethical practice interventions (i.e. advance directives, advance care planning, and shared decision making), decision making regarding resuscitation, education, and research. These areas are tightly related to the application of the principles of bioethics in the practice of resuscitation and end-of-life care.

• MeSH
• dítě MeSH
• dospělí MeSH
• lidé MeSH
• pacientova přání ohledně budoucí terapie MeSH
• péče o umírající * MeSH
• předběžné plánování péče * MeSH
• resuscitace MeSH
• rozhodování MeSH
• smrt MeSH
• Check Tag
• dítě MeSH
• dospělí MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem 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.

• Klíčová slova
• Attitudes, Care, End of life, Neurology, Reliability, Validity,
• MeSH
• lidé MeSH
• péče o umírající * MeSH
• postoj ke zdraví * MeSH
• postoj MeSH
• průzkumy a dotazníky MeSH
• psychometrie * MeSH
• reprodukovatelnost výsledků MeSH
• rodina MeSH
• těhotenství MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• těhotenství MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

PURPOSE: Comfort promotion plays a significant role in end-of-life patient care. The objective of this study was to determine the utilization rate of comfort supporting nursing activities in end-of-life patients in an institutionalized environment in the Czech Republic in relation to the age of the registered nurses (RNs), length of work experience, education level, and type of workplace. DESIGN: A cross-sectional, descriptive study was designed. A questionnaire with Likert scales included 31 activities of dying care and spiritual support interventions. The sample comprised 907 RNs working in 49 institutions in nine regions of the Czech Republic. The Kruskal-Wallis test, Mann-Whitney U post-hoc test with Bonferroni correction of significance, Spearman's correlation analysis, and logical regression model were used for statistical evaluation. FINDINGS: The least frequently implemented activity by RNs was "Show the patient's willingness to discuss death" and the most frequent activity was "Threat to the patient's dignity and respect." The highest utilization rate of nursing activities was reported in the physical dimension, while the lowest utilization rate of nursing activities was in the social dimension set. Significant predictors for the high utilization rate of physical dimension set activities were hospice care departments, long-term care facilities (LTCFs), and the age of RNs. Hospice departments were also a predictor of high utilization rate of activities in the psychological, spiritual, and social dimension set activities. CONCLUSIONS: With the exception of hospice departments, RNs used activities encouraging psychological, spiritual, and social comfort for end-of-life patients less frequently than the physical dimension. CLINICAL RELEVANCE: RNs in hospitals and LTCFs focus insufficiently on the spiritual and psychosocial comfort of end-of-life patients. This study is of particular significance to educators who prepare the next generation of nurses.

• Klíčová slova
• Quality of care, geriatrics, health of specific populations, quantitative methodology, symptom management, terminal care,
• MeSH
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mladý dospělý MeSH
• nemocnice MeSH
• ošetřovatelství metody   MeSH
• paliativní péče organizace a řízení   MeSH
• péče o umírající organizace a řízení   MeSH
• péče v hospici organizace a řízení   MeSH
• průřezové studie MeSH
• průzkumy a dotazníky MeSH
• senioři MeSH
• spiritualita MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mladý dospělý MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• práce podpořená grantem MeSH
• Research Support, N.I.H., Extramural MeSH
• Geografické názvy
• Česká republika MeSH