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BACKGROUND: People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. AIM: To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. DESIGN: We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. SETTING/PARTICIPANTS: We limited the analysis to the subsample of people aged over 64. RESULTS: The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. CONCLUSIONS: The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. TRIAL REGISTRATION: No registration.
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Demência , Cuidados Paliativos , Sistema de Registros , Humanos , Alemanha , Demência/terapia , Demência/epidemiologia , Idoso , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/métodos , Masculino , Feminino , Idoso de 80 Anos ou mais , Estudos Retrospectivos , Sistema de Registros/estatística & dados numéricos , Pessoa de Meia-Idade , Prevalência , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/métodosRESUMO
BACKGROUND: Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? AIMS: The paper aims to identify changes and challenges in palliative care due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. METHODS: The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. RESULTS AND CONCLUSION: First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Inteligência Artificial , Atenção à Saúde , TecnologiaRESUMO
BACKGROUND: In Palliative Care, actors from different professional backgrounds work together and exchange case-specific and expert knowledge and information. Since Palliative Care is traditionally distant from digitalization due to its holistically person-centered approach, there is a lack of suitable concepts enabling digitalization regarding multi-professional team processes. Yet, a digitalised information and collaboration environment geared to the requirements of palliative care and the needs of the members of the multi-professional team might facilitate communication and collaboration processes and improve information and knowledge flows. Taking this chance, the presented three-year project, PALLADiUM, aims to improve the effectiveness of Palliative Care teams by jointly sharing available inter-subjective knowledge and orientation-giving as well as action-guiding practical knowledge. Thus, PALLADiUM will explore the potentials and limitations of digitally supported communication and collaboration solutions. METHODS: PALLADiUM follows an open and iterative mixed methods approach. First, ethnographic methods - participant observations, interviews, and focus groups - aim to explore knowledge and information flow in investigating Palliative Care units as well as the requirements and barriers to digitalization. Second, to extend this body, the analysis of the historical hospital data provides quantitative insights. Condensing all findings results in a to-be work system. Adhering to the work systems transformation method, a technical prototype including artificial intelligence components will enhance the collaborative teamwork in the Palliative Care unit. DISCUSSION: PALLADiUM aims to deliver decisive new insights into the preconditions, processes, and success factors of the digitalization of a medical working environment as well as communication and collaboration processes in multi-professional teams. TRIAL REGISTRATION: The study was registered prospectively at DRKS (Deutsches Register Klinischer Studien) Registration-ID: DRKS0025356 Date of registration: 03.06.21.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Paládio , Inteligência Artificial , Projetos de PesquisaRESUMO
BACKGROUND: The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue's great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall ("From anxiolysis to deep continuous sedation - Development of recommendations for sedation in palliative care") with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area. DESIGN: Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%. RESULTS: Ten experts commented on the recommendations' first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics "indications", "intent/purpose [of sedation]", "decision-making", "information and consent", "medication and type of sedation", "monitoring", "management of fluids and nutrition", "continuing other measures", "support for relatives", and "team support". The recommendations include suggestions on terminology and comments on legal issues. CONCLUSION: Further research will be required for evaluating the feasibility of the recommendations' implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level. TRIAL REGISTRATION: DRKS00015047 (German Clinical Trials Register).
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Pessoal de Saúde , Cuidados Paliativos , Humanos , Consenso , Alemanha , Hipnóticos e Sedativos/uso terapêuticoRESUMO
BACKGROUND: In 2009, the EAPC published recommendations on standards and norms for palliative care in Europe, and a decade later, wished to update them to reflect contemporary practice. AIM: To elicit consensus on standards and norms for palliative care in Europe, taking account of developments since 2009. DESIGN: A Delphi technique used three sequential online survey rounds, and a final expert consultation (EAPC Board). The original 2009 questionnaire with 134 statements was updated with 13 new concepts and practices following a scoping of the literature between 2009 and 2020 (total: 147 statements). SETTING/PARTICIPANTS: One contact of Boards of 52 national European organisations affiliated to the EAPC were invited to participate, with subsequent rounds sent to respondees. The EAPC Board (n = 13) approved final recommendations. RESULTS: In Round 1: 30 organisations (14 organisations × two people, 16 organisations × one person, total n = 44) in 27 countries responded (response rate 58% organisations, 82% countries), Round 2 (n = 40), Round 3 (n = 38). 119 statements reached consensus in Round 1, 9 in Round 2, 7 in Round 3. In total 135/145 statements in five domains (terminology, philosophy, levels, delivery, services) reached consensus (defined as >75% agreement), (122) were original EAPC recommendations with 13 new recommendations included emerging specialisms: neonatal, geriatric and dementia care, and better care practices. Seven statements failed to reach consensus and four were removed as irrelevant or repetition. CONCLUSIONS: Most recommendations on standards and norms for palliative care in Europe remain unchanged since 2009. Evolving concepts in palliative care can be used to support advocacy.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Idoso , Consenso , Técnica Delphi , Europa (Continente) , Humanos , Recém-NascidoRESUMO
BACKGROUND: During the SARS-CoV-2 pandemic's initial waves, bans on visiting and isolation measures placed limits on providing services for seriously ill and dying people and their relatives. Pandemic response teams at governmental level (macro), at federal state and municipal level (meso) and in healthcare facilities (micro) played their role in pandemic management procedures. AIM: To explore pandemic-related challenges and solutions of pandemic response teams regarding the provision of care to seriously ill and dying people and their relatives. Findings were to be integrated into a national strategy (PallPan). DESIGN: Semi-structured expert interviews (10/2020-2/2021) analysed via structured content analysis. SETTINGPARTICIPANTS: We interviewed 41 members, who discussed the work of 43 German pandemic response teams (micro n = 23; meso n = 20; no members were available at macro level) from 14 German federal states. RESULTS: Twenty-nine of 43 teams took account of the needs of seriously ill and dying. Their main challenges resulted from pandemic-related legal requirements in hospitals and long-term care facilities. The implementation of such was in the remits of the meso level. Dysfunctional or non-existent communication between the levels was reported to be challenging. To foster patient-related solutions the micro level pandemic response teams supported individual decisions to enable patient-relative contact for example, visiting and saying goodbye outside, meeting via digital solutions. CONCLUSIONS: Pandemic response teams evidently struggled to find appropriate solutions to ease pandemic-related impact on the care of seriously ill and dying patients and their relatives. We recommend bringing palliative care expertise on board.
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COVID-19 , Pandemias , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , SARS-CoV-2RESUMO
BACKGROUND: Chronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients' autonomy, in the context of sedation in specialised palliative care. METHOD: Secondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany. RESULTS: The study shows that the perspectives of healthcare professionals on patients' autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients. CONCLUSION: In particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients' ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient's age or age-related stereotypes. TRIAL REGISTRATION: The study "SedPall" is registered in the German Clinical Trials Register (ID: DRKS00015047 ).
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adulto , Atenção à Saúde , Humanos , Linguística , Cuidados Paliativos/métodos , Pesquisa QualitativaRESUMO
BACKGROUND: Advance Care Planning including living wills and durable powers of attorney for healthcare is a highly relevant topic aiming to increase patient autonomy and reduce medical overtreatment. Data from patients with head and neck cancer (HNC) are not currently available. The main objective of this study was to survey the frequency of advance directives (AD) in patients with head and neck cancer. METHODS: In this single center cross-sectional study, we evaluated patients during their regular follow-up consultations at Germany's largest tertiary referral center for head and neck cancer, regarding the frequency, characteristics, and influencing factors for the creation of advance directives using a questionnaire tailored to our cohort. The advance directives included living wills, durable powers of attorney for healthcare, and combined directives. RESULTS: Four hundred and forty-six patients were surveyed from 07/01/2019 to 12/31/2019 (response rate = 68.9%). The mean age was 62.4 years (SD 11.9), 26.9% were women (n = 120). 46.4% of patients (n = 207) reported having authored at least one advance directive. These documents included 16 durable powers of attorney for healthcare (3.6%), 75 living wills (16.8%), and 116 combined directives (26.0%). In multivariate regression analysis, older age (OR ≤ 0.396, 95% CI 0.181-0.868; p = 0.021), regular medication (OR = 1.896, 95% CI 1.029-3.494; p = 0.040), and the marital status ("married": OR = 2.574, 95% CI 1.142-5.802; p = 0.023; and "permanent partnership": OR = 6.900, 95% CI 1.312-36.295; p = 0.023) emerged as significant factors increasing the likelihood of having an advance directive. In contrast, the stage of disease, the therapeutic regimen, the ECOG status, and the time from initial diagnosis did not correlate with the presence of any type of advance directive. Ninety-one patients (44%) with advance directives created their documents before the initial diagnoses of head and neck cancer. Most patients who decide to draw up an advance directive make the decision themselves or are motivated to do so by their immediate environment. Only 7% of patients (n = 16) actively made a conscious decision not create an advance directive. CONCLUSION: Less than half of head and neck cancer patients had created an advance directive, and very few patients have made a conscious decision not to do so. Older and comorbid patients who were married or in a permanent partnership had a higher likelihood of having an appropriate document. Advance directives are an essential component in enhancing patient autonomy and allow patients to be treated according to their wishes even when they are unable to consent. Therefore, maximum efforts are advocated to increase the prevalence of advance directives, especially in head and neck cancer patients, whose disease often takes a crisis-like course.
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Diretivas Antecipadas , Neoplasias de Cabeça e Pescoço , Estudos Transversais , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Testamentos Quanto à Vida , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The National Hospice and Palliative Registry is a database for palliative care facilities documenting a core data set for quality assurance and scientific evaluations. OBJECTIVES: The study aims identifying differences between patients in palliative care units treated in Comprehensive Cancer Centers (CCC) or other hospitals (OH) focussing on sociodemographic and health/disease-related characteristics. METHODS: Descriptive data analysis using IBM SPSS Statistics 21 included patients treated from 2014 to 2018. Comparisons included sociodemographic data, diagnoses, ECOG status and treatment duration. RESULTS: 12,922 patient data were analyzed (CCC nâ¯= 4975/OHâ¯= 7947). In CCCs 79.8% had a tumor diagnosis, in other hospitals 85.1%. The proportion of patients with ECOG 4 was higher in CCCs than in other hospitals. The average length of stay in CCCs was 12.6 days, in other hospitals 11.3 days (pâ¯= 0.023). CONCLUSIONS: Data show differences between patients in palliative care implicating CCCs treating more complex palliative care patients than other hospitals.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Humanos , Pacientes Internados , Neoplasias/epidemiologia , Neoplasias/terapia , Cuidados PaliativosRESUMO
BACKGROUND AND AIM: Germany has a federal state system. Pandemic response teams are key instruments of pandemic management. The aim of this article is to describe the structures and powers of pandemic response teams that were explored during a study on the care of the critically ill and dying in times of a pandemic (PallPan). The focus is on health-related pandemic response teams on the national state level (macrolevel) and federal and community level (mesolevel) as well as pandemic response teams in healthcare facilities (microlevel). METHODS: Members of pandemic response teams took part in qualitative semi-structured interviews (October 2020-February 2021). The evaluation was carried out by means of qualitative structuring content analysis. RESULTS: Forty-two persons reported on 43 crisis teams from 14 federal states. Response teams in healthcare facilities and public administration differ primarily with regard to their competencies. Officially predetermined regulations regarding the initiation, personal composition, tasks, responsibilities, and competencies of pandemic response teams are not predefined in Germany. The macrolevel defined the legal and financial conditions for pandemic management. Meso- and microlevel pandemic response teams bear responsibility for maintaining the provision of healthcare. The defaults of local public health authorities are decisive for the pandemic response team's work. Main tasks and measures were the provision of information and the procurement and distribution of resources. DISCUSSION: In terms of preparing for future pandemic situations, the knowledge gained will help to address concerns about maintaining healthcare for specific population groups, such as seriously ill and dying people, to the locally differing responsible bodies, even under pandemic conditions.
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COVID-19 , COVID-19/epidemiologia , Alemanha/epidemiologia , Instalações de Saúde , Humanos , Pandemias , Grupos PopulacionaisRESUMO
BACKGROUND: Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals. METHODS: Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals. RESULTS: Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties. CONCLUSION: Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation.
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Cognição , Cuidados Paliativos , Austrália , Estudos Transversais , Humanos , Reprodutibilidade dos TestesRESUMO
BACKGROUND: From 2014 to 2017, the Palliative Medicine Working Group developed and published best practice recommendations for the integration of palliative care in Comprehensive Cancer Centers (CCCs) in Germany. To evaluate the implementation level of these recommendations in the CCCs an online survey was performed. Based on the results of this study, strategic tandem partnerships between CCCs should be built in order to foster further local development. MATERIALS AND METHODS: Directors of all CCCs were contacted by e-mail between December 2017 and February 2018. At the time of the survey, 15 CCCs were funded by the German Cancer Aid. The level of implementation of the recommendations in individual CCCs was established using a transtheoretical model. RESULTS: Between December 2017 and February 2018, all 15 contacted directors or their representatives of the CCCs took part in the survey. More than two thirds of the CCCs have a palliative service as well as a day clinic and palliative outpatient clinic. Regional networking and the provision of a palliative care unit were approved by all CCCs. CONCLUSION: The publication of best practice recommendations was a milestone for the integration of palliative care in the CCCs. The majority of the German CCCs already fulfill essential organizational and structural requirements. There is a particular need for optimization in the provision of a basic qualification for general palliative care and emergency admission personnel. IMPLICATIONS FOR PRACTICE: In 2017, the Palliative Medicine Working Group in the network of the German Comprehensive Cancer Centers (CCCs) published the best practice recommendations it had developed for the integration of palliative medicine in CCCs in Germany. In order to evaluate the level of implementation of the recommendations, an online survey of the CCC directors was established. The majority of German CCCs fulfil elementary organizational and structural requirements. However, there is still room for improvement in the provision of a basic qualification for general palliative care and emergency admission personnel.
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Neoplasias , Cuidados Paliativos , Alemanha , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the "Care of the Dying Evaluation" (CODE) into German (CODE-GER). METHODS: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient's death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0-10). RESULTS: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. CONCLUSION: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. TRIAL REGISTRATION: This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 ).
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Família/psicologia , Inquéritos e Questionários/normas , Assistência Terminal/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Psicometria/instrumentação , Qualidade de Vida , Reprodutibilidade dos Testes , Estudos Retrospectivos , TraduçõesRESUMO
The surname and name of Christoph (name) Ostgathe (surname) are reversed.
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PURPOSE: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. METHODS: The "Care of the Dying Evaluation" (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0-104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. RESULTS: Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. CONCLUSION: The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. TRIAL REGISTRATION: DRKS00013916.
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BACKGROUND: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. OBJECTIVES: To integrate patients' perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms' diagnosis, protection and isolation measures on their well-being and patients' wishes and needs regarding their care. DESIGN: A mixed-methods convergent parallel design embedded quantitative data on the patients' multidrug-resistant bacterial microorganisms' trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. SETTING/PARTICIPANTS: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. RESULTS: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms' diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients' quality of life. Patients' wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. CONCLUSION: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms' diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms' policies of hospitals.
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Infecções Bacterianas/prevenção & controle , Farmacorresistência Bacteriana Múltipla , Higiene/normas , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto , Assistência Terminal/normas , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de VidaRESUMO
BACKGROUND: The working group for palliative medicine within the Comprehensive Cancer Center (CCC) network funded by the German Cancer Aid in Germany has developed and published 14 Standard Operating Procedures (SOPs) for palliative care in CCCs. This study analyzed to what extent these SOPs have been implemented in the clinical routine in the CCC network one year after their publication. METHODS: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between April and July 2018. In total, 125 health professionals in specialized palliative care from all 16 CCC locations were invited to participate. The data were analyzed descriptively using SPSS. RESULTS: The response rate was 52.8%. More than half of the respondents (57.6%) knew about the free availability of SOPs on the CCC network website. The extent to which each SOP was being used actively in practice by the survey respondents ranged from a low of 22.7% (for the "Fatigue" SOP) to a highest of 48.5% (for the "Palliative Sedation" and "Respiratory Distress" SOPs). The respondents became aware of the SOP through recommendations from colleagues, team meetings or from the head of the department. The SOPs "Respiratory distress of an adult palliative patient" and "Palliative sedation" were perceived as the most practically oriented and understandable. Barriers to use SOPs were mainly limited time resources and lack of knowledge of existence and availability. CONCLUSIONS: In practice, better knowledge about the SOPs and at the same time increased use can be achieved through systematic training or discussion of SOPs in regular team meetings. There is a need to take measures to optimize the implementation in clinical practice.
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Institutos de Câncer/normas , Neoplasias/terapia , Cuidados Paliativos/métodos , Adulto , Institutos de Câncer/organização & administração , Feminino , Alemanha , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde/métodos , Padrão de Cuidado/tendências , Inquéritos e QuestionáriosRESUMO
BACKGROUND: One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study's aim was to validate an easy to use phenomenological screening tool. METHODS: The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed. RESULTS: Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21-96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient's age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach's alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects. CONCLUSIONS: This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation. TRIAL REGISTRATION: The study was not registered.
Assuntos
Avaliação das Necessidades , Neoplasias/terapia , Cuidados Paliativos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Avaliação de Resultados em Cuidados de Saúde/métodos , Reprodutibilidade dos Testes , Adulto JovemRESUMO
BACKGROUND: There is growing interest to integrate palliative care and its structures into the care of neurological patients. However, in Germany there is no comprehensive assessment tool capturing the symptoms of patients with advanced neurological diseases. AIM: To validate a newly developed palliative care measurement tool based on an extension of the validated core documentation system Hospice and Palliative Care Evaluation considering additional neurological issues (HOPE+). DESIGN: Prospective, observational study using HOPE+ and as external criteria, the Eastern Cooperative Oncology Group (ECOG) performance status and the 12 months "surprise" question (12-SQ) in a neurological population, and assessment for its construct validity and diagnostic accuracy. SETTING/PARTICIPANTS: All newly admitted patients to the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic aged 18-100 years (#DRKS00010947). RESULTS: Data from 263 patients (63 ± 14 years of age) were analyzed. HOPE+ revealed a moderately correlated six-factor structure (r = -0.543-0.525). Correlation analysis to evaluate discriminant validity using ECOG as external criterion was high (rs(261) = 0.724, p < 0.001) and confirmed for severely affected patients by adding the 12-SQ ("No"-group: 48.00 ± 14.92 vs "Yes"-group: 18.67 ± 7.57, p < 0.009). Operating characteristics show satisfactory diagnostic accuracy (area under the curve: 0.746 ± 0.049, 95% confidence interval = 0.650-0.842). CONCLUSION: HOPE+ demonstrates promising psychometric properties. It helps to assess palliative care issues of patients in neurological settings and, in combination with the 12-SQ, conceivably conditions when to initiate the palliative care approach in a population underrepresented in palliative care structures so far.
Assuntos
Doenças do Sistema Nervoso/diagnóstico , Avaliação de Resultados em Cuidados de Saúde/métodos , Cuidados Paliativos/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Psicometria , Adulto JovemRESUMO
Vital parameters are key indicators for the assessment of health. Conventional methods rely on direct contact with the patients' skin and can hence cause discomfort and reduce autonomy. This article presents a bistatic 24 GHz radar system based on an interferometric six-port architecture and features a precision of 1 µm in distance measurements. Placed at a distance of 40 cm in front of the human chest, it detects vibrations containing respiratory movements, pulse waves and heart sounds. For the extraction of the respiration rate, time-domain approaches like autocorrelation, peaksearch and zero crossing rate are compared to the Fourier transform, while template matching and a hidden semi-Markov model are utilized for the detection of the heart rate from sphygmograms and heart sounds. A medical study with 30 healthy volunteers was conducted to collect 5.5 h of data, where impedance cardiogram and electrocardiogram were used as gold standard for synchronously recording respiration and heart rate, respectively. A low root mean square error for the breathing rate (0.828 BrPM) and a high overall F1 score for heartbeat detection (93.14%) could be achieved using the proposed radar system and signal processing.