OBJECTIVES: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations.
DESIGN: Transparent expert consultation.
SETTING: International experts in LTCFs.
PARTICIPANTS: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey.
METHODS: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey.
RESULTS: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change.
CONCLUSIONS AND IMPLICATIONS: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs.
OBJECTIVES: Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument.
METHODS: Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016.
RESULTS: Of 264 hits, 13 guidelines-Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended 'pre-emptive discussion of the potential role of sedation in end-of-life care'; 9 recommended 'nutrition/hydration while performing sedation' and 8 acknowledged the need to 'care for the medical team'. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations.
CONCLUSIONS: Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains 'scope and purpose' and 'editorial independence' ranked highest and lowest, respectively-underscoring the importance of good reportage at the developmental stage.
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social or spiritual nature. This document encourages the use of validated assessment tools to recognise such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
L’Association européenne de soins palliatifs (EAPC) a publié en avril 2015 un livre blanc consacré aux personnes atteintes de déficience intellectuelle en Europe. Les auteurs sont Irene Tuffrey-Wijne, Dorry McLaughlin et le groupe d’experts. Nous avons fait le choix de vous en présenter un extrait limité aux 13 normes de consensus élaborées selon la méthode Delphi et en limitant la bibliographie aux articles les plus significatifs. L’intégrale de ce livre blanc est consultable sur le site : LinkClick.aspx?fileticket=2QchuM-Ej4M%3D.
BACKGROUND: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery.
AIM: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services.
DESIGN: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time).
RESULTS: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers.
CONCLUSION: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.
Background: Palliative care (PC) development is diverse and lacks an effective integration into European healthcare systems. This article investigates levels of integrated PC in European countries.
Methods: A qualitative survey was undertaken for the 2013 EAPC Atlas of PC in Europe with boards of national associations, eliciting opinions on opportunities for, and barriers to, PC development.
Analysis: Barriers and opportunities directly related to PC integration were identified and analyzed thematically according (1) to the dimensions of the World Health Organization (WHO) public health model and (2) by the degree of service provision in each country. A frequency analysis of dimensions and level of provision was also conducted.
Results: In total, 48/53 (91%) European countries responded to the survey. A total of 43 barriers and 65 opportunities were identified as being related to PC integration. Main barriers were (1) lack of basic PC training, with a particular emphasis on the absence of teaching at the undergraduate level; (2) lack of official certification for professionals; (3) lack of coordination and continuity of care for users and providers; (4) lack of PC integration for noncancer patients; (5) absence of PC from countries' regulatory frameworks; and (6) unequal laws or regulations pertaining to PC within countries. Innovations in education and new regulatory frameworks were identified as main opportunities in some European countries, in addition to opportunities around the implementation of PC in home care, nursing home settings, and the earlier integration of PC into patients' continuum of care. With increasing provision of services, more challenges for the integration are detected (p < 0.005).
Conclusion: A set of barriers and opportunities to PC integration has been identified across Europe, by national associations, offering a barometer against which to check the challenge of integration across countries.
Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.
The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European Countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive website (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time a Russian website (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative (OSF/IPCI) found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC website provides translations of white papers, position papers and blog posts in a number of languages.
In a paper produced by a European Association for Palliative Care taskforce, Manuel Martínez-Sélles and colleagues discuss the needs of patients with end-stage heart failure as they receive palliative care, highlighting the importance of medical teams initiating timely discussions of a range of end-of-life issues at various points in the progression of the disease.
La taskforce de l'Association européenne pour les soins palliatifs a travaillé avec l'Académie européenne de neurologie pour produire une revue de consensus sur les soins palliatifs dans le cas de troubles neurologiques. Les auteurs en soulignent les principales recommandations.
En 2013, l'association européenne des soins palliatifs (EAPC) a créé la Taskforce "Bénévolat en soins palliatifs". Parmi ses missions, le groupe de travail devait rendre un livre blanc contenant une définition et une typologie partagées du bénévolat en soins palliatifs. Ce groupe de travail devait également convenir du rôle, de la position, de l'identité et des valeurs d'un bénévole européen. Les auteurs présentent les principaux points du livre blanc.
L'association européenne des soins palliatifs a récemment publié un livre blanc provenant de sa Taskforce sur les soins palliatifs pour les personnes souffrant de déficit intellectuel. L'auteure explique comment il a été colligé, ce qu'il contient et pourquoi il est essentiel dans le soin des personnes souffrant de déficit intellectuel en fin de vie.
La Charte de Prague a été lancée conjointement par cinq organisations au cours du congrès de l'EAPC (Association Européenne pour les Soins Palliatifs) en 2013. Elle a pour objectif d'attirer l'attention sur les soins palliatifs et de faire pression pour que ceux-ci soient reconnus comme un Droit de l'Homme. Cette charte a été soutenue par de nombreuses associations et plus de 7 500 personnes ont signé la pétition en ligne.
[D'après résumé revue]
Les professionnels et les bénévoles engagés dans les soins palliatifs doivent être formés à l'identification des préoccupations spirituelles, et à prendre ces dernières en charge. Le groupe formation de l'EAPC "Soins spirituels et soins palliatifs (European Association for Palliative Care Taskforce on Spiritual Care in Palliative Care) a interrogé les membres de l'EAPC pour recenser les formations en cours ou prévues consacrées à la prise en charge spirituelle. Les données rassemblées concernent 36 formations délivrées dans 14 pays, principalement en Europe.
Le groupe formation émet des recommandations à propos de la formation à la prise en charge des besoins spirituels et encourage les membres de l''EAPC à s'investir dans de telles formations.
[D'après résumé revue]
Ce document comprend les contributions du 6ème congrès de l'Association européenne de soins palliatifs, ayant pour thème le temps : l'allocution de la présidente de la Confération Ruth Dreifuss lors de la cérémonie d'ouverture, la contribution de Danièle Deschamps "Le temps des uns et le temps des autres" ainsi que les contributions du 24 septembre 1999 portant principalement sur l'autopsie.
Un groupe de travail de l'EAPC (Association européenne de soins palliatifs) s'est réuni pour établir un état des lieux des connaissances sur l'accès douloureux paroxystique, selon les preuves théoriques et pratiques. Ils ont convenu que la douleur épisodique ou transitoire pourrait être un terme plus simple et plus adéquat dans la plupart des langues dont l'anglais, le français, l'italien et l'espagnol.
Cet article présente la version mise à jour des lignes directrices de l'Association Européenne de Soins Palliatifs (EAPC) sur l'utilisation d'opioïdes pour le traitement de la douleur cancéreuse. Ces lignes directrices sont présentées comme une liste de 16 recommandations fondées sur les preuves.