RESUMO
BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.
Assuntos
Anestesia , Sedação Profunda , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Técnica Delphi , Assistência Terminal/métodos , Consenso , Sedação Profunda/métodosRESUMO
BACKGROUND: The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania). METHODS: A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data. RESULTS: Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively. CONCLUSIONS: Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.
Assuntos
Hipnóticos e Sedativos , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Inquéritos e Questionários , Hipnóticos e Sedativos/uso terapêutico , Europa (Continente) , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Alemanha , Romênia , Espanha , Bélgica , Países Baixos , Itália , Reino Unido , Atitude do Pessoal de Saúde , Hungria , Padrões de Prática Médica/estatística & dados numéricos , Padrões de Prática Médica/normasRESUMO
BACKGROUND: Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. METHODS: An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. RESULTS: One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. CONCLUSIONS: Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.
Assuntos
Assistência Terminal , Humanos , Cuidados Paliativos , Diretivas Antecipadas , Europa (Continente) , ItáliaRESUMO
OBJECTIVE: To explore the needs and opportunities of the general population to communicate their end-of-life care wishes and to investigate what roles are assigned to healthcare providers and family members in end-of-life care discussions. DESIGN: A cross-sectional social survey was carried out in Hungary. Descriptive analysis and analysis of variance were performed. SETTING: Nationwide survey of the Hungarian general population. SUBJECT: The sample (n = 1100) was designed to represent the adult population as per distribution by gender, age and geographical region. MAIN OUTCOME MEASURES: Needs and opportunities of the general population to communicate end-of-life care wishes. RESULTS: 72% of participants found it important to discuss their end-of-life care wishes with someone. Six out of ten believed that it was also the GPs' task to talk with the patients about their end-of-life care wishes. An almost equal level of engagement was expected from healthcare providers (80%) -especially physicians (72%)- and family members (75%) in end-of-life conversations. However, only 36% of participants felt that there was someone among their healthcare providers, and 56% of them had a family member or friend with whom they could speak openly about death, dying and preparing for death. CONCLUSION: Compared to their needs, the general population had fewer opportunities to speak about death, dying and preparing for death. Training programs for healthcare providers, particularly GPs, and public awareness campaigns may support the broader application of advance care planning in Hungary.Key PointsCurrent guidelines recommend that GPs initiate advance care planning discussions. However, little is known with whom the general population wish to discuss their end-of-life care preferences and with whom there is an opportunity to do so.An almost equal level of engagement was expected from healthcare providers -especially physicians- and family members in end-of-life conversations. Most of the general population thought that participation in end-of-life discussions was also the GPs' task.The majority of participants reported that there was no one among their healthcare providers and a sizable minority felt that there was no one among their family members or friends with whom they could talk openly about death, dying, and preparing for death.The highest levels of unmet needs regarding end-of-life conversations with healthcare providers were found among those who considered it important to discuss their end-of-life care wishes.
Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Adulto , Estudos Transversais , Morte , Humanos , HungriaRESUMO
OBJECTIVE: Palliative Care Consult Service (PCCS) programme was established in Hungary to provide palliative care to hospitalised patients with complex needs and to coordinate integrated care across providers. The aim of this study was to measure the association of PCCS with healthcare costs from payer's perspective. METHODS: Study population consisted of patients with metastatic cancer, who were admitted to the Clinical Centre of the University of Pécs between 2014 and 2016. Patients who did not die within 180 days from enrolment were excluded. Patients receiving services from PCCS team (intervention patients) were compared to patients receiving usual care (controls). The two populations were matched using propensity scores. Data were obtained from electronic medical records linked to claims data. RESULTS: For patients who were involved in PCCS at least 60 days before their death, the costs of care outside the acute hospital were higher. However, this was offset by savings in hospital costs so that the total healthcare cost was significantly reduced (p = 0.034). The proportion of patients who died in the hospital was lower in the PCCS group compared to the usual care group (66% vs. 85%, p = 0.022). CONCLUSION: Timely initiation of palliative care for hospitalised patients is associated with cost savings for the healthcare system.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Redução de Custos , Humanos , Hungria , Neoplasias/terapia , Cuidados PaliativosRESUMO
BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. DESIGN: An online survey analysed using descriptive statistics. SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.
Assuntos
Estudos Clínicos como Assunto , Comitês de Ética em Pesquisa , Cuidados Paliativos , Estudos Clínicos como Assunto/estatística & dados numéricos , Comitês de Ética em Pesquisa/estatística & dados numéricos , Europa (Continente) , Humanos , Cuidados Paliativos/ética , Cuidados Paliativos/estatística & dados numéricos , Qualidade de Vida , Fatores de Tempo , Reino UnidoRESUMO
BACKGROUND: The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ("Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE"), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. METHODS: PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. RESULTS: The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. CONCLUSIONS: The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.
Assuntos
Cuidados Paliativos/métodos , Encaminhamento e Consulta/tendências , Humanos , Hungria , Cuidados Paliativos/normas , Cuidados Paliativos/tendências , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/normasRESUMO
BACKGROUND: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. METHODS: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. RESULTS: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. CONCLUSIONS: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.
Assuntos
Cuidadores/psicologia , Cuidados Paliativos , Doente Terminal/psicologia , Idoso , Bélgica , Efeitos Psicossociais da Doença , Feminino , Alemanha , Insuficiência Cardíaca/terapia , Humanos , Hungria , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Países Baixos , Cuidados Paliativos/métodos , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/terapia , Pesquisa Qualitativa , Inquéritos e Questionários , Reino Unido , Recursos HumanosRESUMO
At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients' preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients' preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131-140.
Assuntos
Planejamento Antecipado de Cuidados/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Assistência Terminal/normas , Eutanásia Ativa Voluntária/tendências , Feminino , Humanos , Hungria , Masculino , Preferência do Paciente , Assistência Centrada no Paciente/normasRESUMO
BACKGROUND: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. AIM: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. DESIGN: This is a cross-sectional study using death certificate data. SETTING/PARTICIPANTS: All adults (⩾18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand ( N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. RESULTS: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. CONCLUSION: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.
Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Curva ROC , Assistência Terminal/estatística & dados numéricos , Adulto JovemRESUMO
BACKGROUND: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. AIM: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. DESIGN: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. SETTING/PARTICIPANTS: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female). RESULTS: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. CONCLUSION: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.
Assuntos
Continuidade da Assistência ao Paciente/normas , Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos/organização & administração , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Prestação Integrada de Cuidados de Saúde/normas , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente/organização & administração , Satisfação do Paciente , Relações Profissional-Paciente , Pesquisa QualitativaRESUMO
BACKGROUND: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. AIM: To assess national models and methods for financing and reimbursing palliative care. DESIGN: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. RESULTS: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. CONCLUSION: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
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Cuidados Paliativos na Terminalidade da Vida/economia , Modelos Econômicos , Cuidados Paliativos/economia , Mecanismo de Reembolso/economia , Inglaterra , Alemanha , Humanos , Hungria , Irlanda , Países Baixos , Nova Zelândia , Noruega , Polônia , Espanha , Suécia , Suíça , Estados Unidos , País de GalesRESUMO
Modern palliative-hospice care has gained space in Europe for more than 50 years. Since the initial empirical work of Cicely Saunders, palliative medicine has gained its place in evidence-based medicine in more and more countries. However, development, as in many other medical fields, is not uniform, there are big differences between countries in the world. There are also significant differences in development of care and the level of services within the European Union amongst Western and Eastern European countries. These differences affect the professional approach, legislative mechanisms and social acceptance. Hungarian palliative-hospice care has developed significantly over the past 15 years. For further development thoughtful strategic steps and service development is needed. The integration of palliative care into standard oncology is an international requirement, which also appears in the form of professional guidelines. Hungary has also played a role in the development of the European model of integrated palliative care of which Hungarian implementation, the "Pécs model", is discussed in detail in our paper.
Assuntos
Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Qualidade de Vida , Humanos , Hungria , Comunicação Interdisciplinar , Modelos Organizacionais , Avaliação das Necessidades , Neoplasias/diagnóstico , Neoplasias/mortalidade , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Doente TerminalRESUMO
BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. METHODS: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. RESULTS: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel's tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. CONCLUSIONS: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations.
Assuntos
Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos/organização & administração , Doente Terminal , Humanos , Neoplasias/terapia , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde , Qualidade de Vida , EspanhaRESUMO
BACKGROUND: Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. METHODS: We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. RESULTS: We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80%) of the guidelines/pathways emphasize a holistic approach and 66% focus on PC interventions aimed at reducing suffering. Fifty seven percent (57%) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. CONCLUSION: Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC.
Assuntos
Diretrizes para o Planejamento em Saúde , Neoplasias/terapia , Cuidados Paliativos/métodos , Encaminhamento e Consulta , Adulto , Europa (Continente) , Humanos , Qualidade de VidaRESUMO
BACKGROUND: Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. METHODS: Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. RESULTS: The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients' goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. CONCLUSION: The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.
Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Insuficiência Cardíaca/terapia , Cuidados Paliativos/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Crônica/terapia , Europa (Continente) , Humanos , Cuidados Paliativos/métodos , Qualidade de VidaRESUMO
BACKGROUND: Most people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson's disease (PD) across 11 European and non-European countries. METHODS: Using death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses. RESULTS: The proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80 years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA). CONCLUSIONS: In several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions.
Assuntos
Morte , Doença de Parkinson/mortalidade , Assistência Terminal/estatística & dados numéricos , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Comparação Transcultural , Atestado de Óbito , Feminino , Número de Leitos em Hospital , Hospitais/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde/estatística & dados numéricos , Características de Residência , Fatores Sexuais , Fatores SocioeconômicosRESUMO
Grief is a natural part of life and it is always individual. Researchers have tried and still try to develop different theories to interpret, explain, and approach this particular phenomenon. The aim of the authors was to review the theoretical literature of mourning and to present new bereavement theories for domestic professionals. From the first half of the 20th century until presently mourning theories have undergone significant changes. Today the determinant models includes the flexible, coping-oriented dual process model, meaning reconstruction model which focuses on the meaning making, and the model which focuses on the development after the loss. The authors conclude that experts, who work in the clinical area should know the prevailing theories of grief, because they encounter often with loss at work. The presented models may contribute to more efficient work, to better understanding of the mourning process and to a better support of families.
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Adaptação Psicológica , Atitude Frente a Morte , Pesar , Identificação Social , Espiritualidade , Formação de Conceito , HumanosRESUMO
Malignant and other chronic diseases cause the death of 2.5 million people in Europe annually. It is anticipated that this number will grow due to the aging of the European population. The death of a significant proportion of patients having progressive chronic disease is preceded by an extended end of life stadium. In this stage the patients have severe symptoms and pain that necessitate their symptomatic treatment and palliative care. The assessment of the life expectancy of patients, estimation of the prognosis of their illness and, therefore, selection of patients with a need of intensified palliative care often pose difficulties. This paper provides a summary on the basic elements of "good palliative care". It introduces the most frequent models for the procession of chronic diseases and those indicators that help practicing doctors to recognise easier patients with a need of intensified palliative care, and as a result provides more adequate medical attendance that is better suited to the specific needs of the patients.
Assuntos
Ansiedade/prevenção & controle , Doença Crônica , Depressão/prevenção & controle , Dispneia/prevenção & controle , Dor/prevenção & controle , Cuidados Paliativos , Ansiedade/etiologia , Doença Crônica/enfermagem , Doença Crônica/psicologia , Depressão/etiologia , Progressão da Doença , Dispneia/etiologia , Necessidades e Demandas de Serviços de Saúde , Humanos , Expectativa de Vida , Dor/etiologia , Medição da Dor , Prognóstico , Índice de Gravidade de Doença , Assistência TerminalRESUMO
Short acting oral morphine has recently been registered again in Hungary. Short acting oral morphine has two essential indications: dose titration at initiation of major analgesic therapy and treatment of breakthrough pain appearing beside round the clock major analgesic therapy. The clinical management of short acting oral morphine is summarised in this article.