TASK FORCE UPDATED REPORTS

September 2009

Nursing Education Taskforce

The work of the taskforce was completed in 2004 with the publication of the recommendations which have been widely adapted and utilised across a number of European countries. Luxembourg was the last to utilise the recommendations in their education programmes in 2007/8.

A further development worth noting was the initial reflection on core competencies for palliative nursing,  arising out of the Antea meeting held in Rome in 2008. In brief, an international panel of palliative nurse experts and educators met to consider what core competencies could be developed to reflect a more global perspective, cognisant of the role of nursing in some countries and varied stages of service development. Expert representatives from the EU, US, South America, Canada, Australia and Africa were present at the meeting. Similar meetings for physicans and psychologists took place at the same meeting.

The core competency recommendations for nursing were based on three documents:

• The EAPC Nursing Recommendations (2004) [EU]
• The HAU/PCA standards (2005) [Africa]
• The Canadian standards for nursing practice (2002)

An initial consultation document was drafted and circulated to the members of the group for comment, with a view to publication. Panel members were invited to share the document with their national association if appropriate. It has been brought to my attention by Sharon Baxter from CHPCA that the documentation from Canada she originally supplied has been updated recently and therefore in light of this, the draft document now needs to be considerably revised. I am currently in negotiation with CHPCA about using their new guidelines for palliative care nursing practice. Given delays which are not always clearly explained, I am unable to offer a final date for completion at this time, but I would aim to have the second draft completed by the end of 2009.

Phil Larkin (Chair)

Development of Palliative Care in Europe Task Force

Meetings

We only have had a formal meeting in London the last September 2008 (DC, CC & JR). Because CC health problems we have had to postpone the meeting scheduled in Lancaster for September 2009 with David Clark, Michael Wright, Tom Lynch and Javier Rocafort. The new dates would be at the end of November. In this meeting we aim to design the main projects for the next 3 years and also re-think in a new membership composition and new financial incomes.

Financial issues

We have some money in our budget. Without go in details, we have, more or less 25.000 Euros for next projects. We are looking financial opportunities in European calls but until now we cannot find any suitable for our project. This task needs considerable effort.

Results and projects

• We already published in JPSM March 2009 'Barriers for Pall Care in East Europe' in JPSM 2009, 37 (3): 305 y ss.
  
  
• We have published also and Editorial Comment on 'Bringing palliative care on to the European agenda' in EJPC 2009, 16 (2)
  
  
• In August, we have submit a new article to Palliative Medicine, on 'Barriers for Pall Care in West Europe' (under revision)
  
  
• We (DC &CC) are working with José María Martin Moreno and Charles Norman (Dublin) in an original on Financial issues in Pall Care. It is almost finished.
  
  
• We are working in other two papers on 'Opportunities for Pall Care in Europe' (Tom Lynch) and 'the names for palliative care services in Europe' (M. Wright). Are in writing phase and advanced.
  
  
• Also we are trying to elaborate more a paper about the 'a ranking system for PC in Europe' (CC) and some more about bibliometria (JR).
  
  
• The new web section with all the information published in the Books Atlas and Review is under develop but slower than we want (AG)
  
  
• We are in the preliminary design of the database of services and organization in Europe. As you know, this could be the biggest project of our group in the next future and will need close contact with EAPC Head Office and the web developers teams (CC and my team)
  
  
• We have under discussion the edition of new book of several authors, in the style of the Atlas Series, about the 'History of PC in Europe'. It is preliminary, only, but we are thinking in two year project finishing in Lisbon. (DC and his team mainly). This project came mainly from the information already collected for us about the pioneers of PC in each country. After his elaboration we think that is only a beginning of a new book.
  
  
• I am in close contact with Robert Wenk and in the preliminary work of a new PC Atlas for Latin America, but we still have not defined if this is a Task Force project or only University of Navarra and SECPAL project.

Carlos Centeno (Chair)

The Palliative Care in Central and Eastern Europe and Former Soviet Union Countries Monthly Email Newsletter

Aims and objectives

Our main goal was to develop the monthly online CEE & FSU Palliative Care Newsletter in English and Russian languages in order to cover palliative care activities in the countries of the region. Our further aim is to increase the participation of Eastern European and Former Soviet Union countries in international associations, movements and actions and also to represent those palliative care organizations that are members of the European Association for Palliative Care. In 2005 the Newsletter became one of the taskforces of the European Association for Palliative Care, continuing the work of the EAPC East. In the future we would like to extend the project with the aim of developing an Eastern European taskforce.

Organization and support of project

The Newsletter was developed by the Hungarian Hospice-Palliative Association, with the support of the Open Society Institute Network Public Health Program’s International Palliative Care Initiative and the European Association for Palliative Care

Members of group

• Dr. Katalin Hegedűs PhD, Hungarian Hospice-Palliative Association, editor-in-chief
• Ágnes Zana, Hungarian Hospice-Palliative Association, editor
• Csilla Raduch, Semmelweis University, English lector
• Dr.Elena Vvedenskaya, Russia, translator
• Gergely Alpár, AmegA Team, IT technician

Contact persons from the CEE&FSU countries
 
Dr Elena Vvedenskaya, Russia; Dr Natasa Milicevic, Serbia; Dr Avyrdas Seskevicius, Lithuania; Dr Urska Lunder, Slovenia; Dr Nikolay Yordanov and Dr Penka Kolchakova, Bulgaria; Dr Anica Jusic and Dr. Matija Rimac, Croatia; Dr Mirjana Adzic, Macedonia; Dr Albert Leka, Albania; Eva Černá, Czech Republic; Alexander Wolf, Ukraine; Elena Stenpovscaia, Moldova; Dr Gvamichava Rema, Georgia; Professor Jacek Luczak and Wojciech Leppert, Poland etc.

Project summary

• Design

In 2005 an individual, high standard and creative design was created for the Newsletter. In May 2009 the Newsletter has been renewed with the aim to give a fresh look to the webpage. The new ergonomic arrangements are: large image for orientation, table of contents, useful links at relevant locations, clear icons for columns, up-to-date web design, flexible for any content.
8 pictograms make orientation easier for users, showing the content of the Newsletter:

2. On the content

From 2005 the Newsletter introduced detailed 22 PC country reports from 15 countries (Ukraine, Romania, Lithuania, Hungary, Mongolia, Slovenia, Poland, Serbia, Macedonia, Croatia, Bulgaria, Albania, Czech Republic, Moldova, Belarus). Now these reports provide the most recent views on the Eastern European and Former Soviet Union situation in palliative care all over the world. Many model-programs of a region or city and important international and national congresses, events and declarations were published. All grant opportunities were reported for Eastern-Europeans. Two permanent columns, the Further links and Standards are available, collecting 56 useful links and 20 standards in Palliative care.

3. Results

The 5 year old Newsletter has successfully achieved its purpose. With the help of the Newsletter more than 330 Eastern-European professionals were able to participate at the 10th Conference of EAPC organised in Budapest in 2007, as many of these professionals received useful and timely information from announcements for grants in the Newsletter. In this period the number of Eastern-European organisations joining EAPC as collective members increased from 3 to 11.
According to our new initiative we undertake the task of searching for national and regional websites in the Eastern-European region that report on a regular basis and provide information on various proposals and results. By collecting these websites and highlighting the most important events we aim to develop and strengthen national and regional connections.

Statistical summary

Future aims

We would like to extend the scope of our project and reorganise it as Eastern European Taskforce. Besides this, we hope to issue the Newsletter on a regular basis with the active collaboration of contributing professionals and feedback from the readers.
When establishing the Taskforce we need to consider an inclusion strategy, as despite the rapid development that started in the region significant inequalities can be observed between certain regions (Central- and Eastern-Europe, respectively former Soviet Union countries). While EU countries are about to approach the western standards in this field, certain regions remain unchanged and lag behind. Therefore, it is increasingly difficult to refer to a uniform „Eastern-Europe”, as needs and demands differ to a great extent, although nearly two decades passed since the „common past”.
 
Tasks:

1. providing support for the development of palliative care institutions
2. strengthening the twinning programs on "West-East" and "East-East" levels
3. involving the representatives of Eastern-European countries in various EAPC projects
4. organising personal meetings with key representatives of the region
5. enhancing the conference participation of professionals in the region
6. facilitating the development of palliative educational structures in the region
7. online creativity competition (artistic expression of intrinsic values and ways of coping)
8. exploring opportunities and searching for sponsors and grants for realising the above mentioned aims.

Katalin Hegedus (Chair)

https://eapcnet.org/CeeFsuNlt/index.html

Task Force on Physician Education in Palliative Care

The EAPC regards the education of health care professionals in Palliative Care as one of the most important objectives to promote Palliative Care in Europe.

Therefore a Task force has been established to work on recommendations for the development of curricula on under- and postgraduate medical education in Palliative Care. In 2007 the Task force finished a paper called “Curriculum in Palliative Care for Undergraduate Medical Education - Recommendations of the European Association for Palliative Care (EAPC)” which has already been published on the EAPC-website at:
eapcnet.org/download/forTask forces/PhysiciansTF/PC-Curr-UndergraduateMedEdu.pdf

For the field of postgraduate training the “Recommendations for the development of postgraduate curricula leading to certification in Palliative Medicine” are to be published by the end of November 2009 at the latest.

The Task force has spent a long time discussing the pitfalls that had to be avoided in the preparation of a general European postgraduate curriculum. Differences in the health care systems as well as in the specialist training in the European countries make it hard to find a widely accepted and universally applicable curriculum. Some good examples for postgraduate curricula exist, however, the discussion in the group showed that they would not be applicable one-to-one in other countries. The Task force therefore decided to choose a loose framework of recommendations rather than a concrete curriculum, leaving the adaptation of the mandatory contents to local or national settings to the individual user. In this framework the Task force also wanted to accommodate the fact that in some European countries palliative medicine is acknowledged as a sub-speciality, or even as a specialty, whereas in other countries it is not.

In the future the Task force will have to work on the promotion and dissemination of these recommendations as well as on how to adopt them in the individual and different national settings. Furthermore the difficulties of the supervision of the Palliative Care training development on the under- and postgraduate level within Europe will be an issue as well as regular updates of the recommendations that will be necessary to guarantee an ongoing high level of quality of education in the field.

Frank Elsner, (Chair)

EAPC Taskforce Palliative Care for Older People: Better Practice

The EAPC taskforce Palliative Care for Older People: Better Practice commenced in September 2007. Its aim is to develop a new booklet for the World Health Organisation Solid Facts series to improve palliative care for older people by providing examples of good and promising practice. The new booklet builds on two previous booklets: Palliative Care: The Solid Facts (Davies & Higginson, 2004) and Better Palliative Care for Older People (Davies & Higginson, 2004). Together they form part of an evidence-based series of publications whose goal is to aid those involved in planning and supporting care-orientated services for older people in the most appropriate and effective way, to guide decision makers and to bridge the gap between academic research and health policy. A group of international experts are contributing to the development of the booklet.

The project is now close to completion. The booklet highlights the magnitude of the problem confronting palliative care for older people in Europe by presenting data on the ageing population and on cause and place of death. Examples have been selected from literature searches and from an international call for examples. They include innovative national strategies; education and training, palliative care for older people being cared for in hospitals, care homes and at home and for those with dementia; symptom specific interventions; advance care planning; care pathways, support for informal care givers; innovative approached to providing palliative care in lower resource settings, and in countries of the former socialist block in Central and Eastern Europe where palliative services are less developed. Some examples await rigorous evaluation of effectiveness and the development of research in palliative care in Europe is considered. The booklet takes a patient and systems-based approach, focussing on examples fromEurope, or relevant to Europe.

The booklet is currently under review by an expert panel, and will then be sent to a wider international group and the World Health Organization for review. Plans for the launch of the booklet and a dissemination strategy are underway. Posters describing the project were presented at the EAPC conference in Vienna in May 2009 and created a great deal of interest from participants from a wide range of countries.

Irene Higginson (Chair)

EAPC Taskforce on Neurological Care

The Neurology Taskforce met at the EAPC Congress in Vienna.  There has been progress and two main areas are being developed:

• Guidelines on the palliative care for people with neurological diseases are being produced, in association with the European Federation of Neurological Societies(EFNS).  The main areas that will be covered are: amyotrophic lateral sclerosis, multiple sclerosis, Huntington’s disease, Parkinson’s disease, stroke and cerebral tumours.
• A project is planned to develop a curriculum in neurology and palliative care – with areas of education in palliative care for neurologists and neurology training for palliative care professionals.  This will need a wider involvement and funding, including the World Federation of Neurology (WFN).

It is hoped that the guidelines will be completed within the coming year and the curriculum development would start in 2010, if funding can be obtained.

The Taskforce would be grateful for the support of the EAPC in their approach to the projects.  The provision of funding to the Taskforce would be very helpful, and would facilitate the approaches to the WFN and EFNS by showing the commitment of the EAPC.

The taskforce hopes that these developments will encourage collaboration between palliative care and neurology services, benefiting patients with progressive neurological disease.

Dr David Oliver (Chair)

Task Force on Education for Psychologist in Palliative Care
Supported by the British Psychological Society

BACKGROUND
In November 2008 a workshop on core curricula for psychologists in palliative care took place during the ANTEA conference in Rome. At this workshop key areas of work and core competencies of psychologists working in palliative care were examined. As a result of the workshop it was decided to set up an EAPC Task Force on education for psychologists in palliative care and this was approved by the EAPC Board in March 2009. In May 2009 during the EAPC congress in Vienna a first meeting of the Task Force took place and agreements regarding the aims, the structure and the time line of the Task Force were made.

AIMS
The aim of the Task Force is an Expert Paper with recommendations regarding the education for psychologists working in palliative care in Europe. For a scientific footing of the Expert Paper information on the existing postgraduate courses for psychologists in palliative care in different European countries has to be gathered. In addition, the various activities and remits of psychologists in palliative care must be explored in order to gain information on core competencies.

STRUCTURE
The Task Force is coordinated by Sheila Payne (UK) and Saskia Jünger (Germany). The scientific work is being supported by a research associate, Eva Eggenberger (Austria).
The Task Force comprises a core group and an advisory group. The core group consists of up to 10 members who actively contribute to the work on the aims of the Task Force. The advisory group consists of senior psychologists who can support the work of the Task Force with their expertise and their professional experience.
During the summer 2009, experienced psychologists from different European countries have been approached and asked to join the Task Force activities as members of the steering group or the advisory group. Currently, the steering group comprises ten members from seven different countries; the advisory group comprises seven members from five different countries (see attached list).

COMMUNICATION
An internet site has been created as a sub-site of the EAPC website (https://eapcnet.org/projects/Psychologists.html). On this site recent information on the aims, the structure, and the activities of the Task Force are provided.
A database of all psychologists who are interested in supporting the activities of the Task Force has been established and will continuously be maintained by the coordinator (SJ) and the research associate (EE). The members of the Task Force and the psychologists in this database will be updated regularly.

TIME LINE
In accordance with the general time limit for EAPC Task Forces the group has agreed on a time schedule of two years for the implementation of the activities.

Stages of work

METHODS
Ideally, the Expert Paper will be based on a multimodal approach and on the assessment of information on psychologists working in palliative care in different European countries and the already existing education initiatives for psychology in palliative care. Therefore, key persons in each country shall be identified who can provide information on other psychologists and on national curricula for psychologists. Using a database of psychologists working in palliative care in Europe held by the EAPC, a questionnaire survey will be circulated in autumn 2009.
As an additional project a needs assessment of psychologists, patients and team members with respect to psychological work in palliative care could be undertaken.

EUROPEAN SURVEY
A questionnaire survey has been chosen as the method to gather information on the situation of psychologists in palliative care in different European countries. The aim of this survey is to assess the following aspects:

• General information on the work in palliative care (place of work, duration of work in palliative care, work contract)
• Tasks and activities in palliative care (e.g. consultation, team support, education, research; proportion of specific activities within the daily working routine)
• Role of psychologists in palliative care in individual country
• Individual education of the psychologists working in palliative care
• General education opportunities for psychologists in palliative care in individual country.

In accordance with the research questions, a questionnaire has been developed in July 2009. It has been designed as an interactive word form with tick boxes and fields for free text answers. In August 2009, a pilot survey has been undertaken with the members of the steering group of the Task Force. The participants were asked to give feedback to the following criteria:

• Is the questionnaire understandable?
• Are there questions that should be added or changed?
• Does the completion of the questionnaire work technically?
• Is the length of the questionnaire feasible?

The questionnaire has been revised based on the results of the pilot survey and will be translated in four languages (Italian, French, Spanish, and German).

NEXT STEPS
The survey will be sent out in September 2009. An SPSS database will be set up for the data entry. Descriptive statistics will be generated to present the data. The free text answers will be categorized by means of qualitative content analysis.
The results of the survey will serve as a basis for the identification of key areas of work and core competences of psychologists throughout Europe. Moreover, information on the structure and content of already existing basic curricula will be gathered. These findings will be used as a foundation for the Expert Paper.
In October 2009, the first results of the Task Force will be reported at the EAPC board meeting. A meeting of the steering group will be scheduled for the beginning of 2010 in order to agree on the structure and the assignments with respect to the expert paper.
We are grateful for a travel grant of £4,000 over two years from the British Psychological Society which will enable Task Force members to meet to develop the Expert Paper, in Glasgow, Scotland in June 2010 and in Lisbon, Portugal in May 2011.

European Social Work Project

This year has been a very important year for palliative care social work with a number of events and publications as follows:

On 23rd March Pam Firth was invited to a meeting in Amsterdam of palliative care social workers. There were a number of very interesting topics discussed including the position of palliative care social work as a specialism. This was followed by a meeting of social workers and family therapists at the European Congress of Palliative Care in Vienna in May. The session was led by David Oliviere, Director of Education at St Christophers Hospice UK and Pam Firth, Deputy Director of Hospice Services Isabel Hospice UK.

The meeting was attended by 37 social workers from all over  Europe. There was general agreement that we should apply to the European Association of Palliative Care to support the setting up of a task force which would focus on the specialist role and functions of palliative care social work. The competencies and skills needed to be established and recommendations about training could also be addressed. We were aware at the meeting that our colleagues in Canada has been carrying out research into this area and were hoping to publish soon. With this in mind it was agreed that Pam Firth would request Task Force status when the board met in October. The group felt that we could have a small group who could work on some proposals and then the follow up work would be done by emails etc. The canadian social workers are now awaiting publication of their research in the journal Palliative Medicine.

Some social workers will also be aware that Malcom Payne, Policy Adviser at St Christophers Hospice UK has established a blog to provide a forum for social workers to share ideas, details on this website. Malcom has also just published a text book with Margaret Reith entitled Social work in End-of-life and palliative care.It is published by The Policy Press, University of Bristol,UK 2009.

Another important publication is the Autumn edition of Progress in Palliative Care which is going to be devoted to papers about end of life social work practice. It will be edited by Ruth Powaski, David Oliviere and Pam Firth.

In the UK this year there have been a number of child deaths by parents which have highlighted the whole issue of social workers role in Child Protection. The national press was very damning about the role of social worker. However in June this year the Guardian newspaper devoted part of its paper to examples of good social work practice and interviews with students and experienced practioners about their roles. Pam Firth gave her views about palliative care social work, its challenges and rewards.

It is good to meet and have contact with each other so please plan for the next European Congress in Lisbon 19th to 21st May 2011

Pam Firth, board member of the European Association of Palliative Care

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