EAPC features in International Intellectual Disability Conference

Dr David Oliver, Consultant in Palliative Medicine at Wisdom Hospice, Rochester, and Honorary Reader at University of Kent, UK; Board member of the European Association for Palliative Care (EAPC) and a member of the EAPC Task Force on Palliative Care for People with Intellectual Disabilities.

Dr David Oliver

Dr David Oliver

Draft EAPC Norms for Palliative Care for People with Intellectual Disability were presented in a round table session at the Fourth International Association for the Scientific Study of Intellectual Disability Europe Congress, held in Vienna, Austria, on 14-17 July. The norms aim to provide a basis of looking at the care offered to people with intellectual disability (ID). They focus on ensuring that people with ID are able to access palliative care and that services are aware of their particular needs; they emphasise the need for clear communication, and that people with ID should be included in the decisions about their care, and in advance care plans as their health deteriorates. An EAPC task force has been working on the norms over the past year, chaired by Irene Tuffrey-Wijne.

Pathways to inclusion: Fourth International Association for the Scientific Study of Intellectual Disability Europe Congress

Pathways to inclusion: Fourth International Association for the Scientific Study of Intellectual Disability Europe Congress

This major conference provides an opportunity to present and debate the newest advances in research on intellectual disability from around the globe and it offered a real opportunity to share our draft norms more widely. The first plenary speaker, Dr Marianne Shultz, a Human Rights lawyer, developed the conference theme, ‘Pathways to Inclusion’. She spoke of the need for the “chronically well” population, which probably comprises 85%, to ensure that there is equal access for all – and especially the 15% of “disabled” – everyone should be empowered to make their own decisions about their lives, including mistakes!

The next stage for the norms will be the completion of the final draft and publication on the EAPC website, and then in both ID and palliative care journals during the coming months. We hope this will lead to greater discussion within both palliative care and intellectual disability services so that there will improved opportunities for all, including those with ID, to receive palliative care. Palliative care should take up this challenge to be open to all, and work in collaboration with ID services and carers to improve the quality of life, and death, of people with ID.

Links

LLeida_fbSelected presentations from the 8th EAPC World Research Congress now online…
Even if you weren’t able to attend the congress held in Lleida, Spain, in June 2014, you can now download some of the presentations and other information relating to the congress. Click here to view.

Posted in EAPC Board Members, EAPC Taskforces/special projects, National and international events | Tagged | 1 Comment

Harm reduction in focus: Final ATOME conference held in Poland

Lisa Linge-Dahl, Department of Palliative Medicine, University Hospital Bonn, Germany

Lisa Linge-Dahl

Lisa Linge-Dahl

The last of the 11 national conferences linked to the ATOME project (Access to Opioid Medication in Europe) was held at the Foksal Centre in Warsaw, Poland, on 25 April 2014. More than 60 people attended including scientists and experts from palliative care, pain management and harm reduction, and a journalist.

Access to opioids for harm reduction
“Opioid dependence is conceived of as an illness. People should be free of illegal drugs. Substitution means the constant availability of the patient’s medication. If you stop the medication they will go back to illegal drugs. Let us be realistic. Substitution should not have a limited amount of time,” said Dr Jan Chrostek-Maj (Department of Detoxification, Rydygier Hospital, Kracow), a psychiatrist working with opioid dependent patients.

“Nonetheless OAT (Opioid Agonist Therapy) and opioid therapy in general are still facing lots of obstacles in Poland. Overly restrictive laws, insufficient medical education in pain treatment, fear of dependence, attitudes of relatives, inadequate medical education and opiophobia among doctors are some of the reasons.”

Scientists and experts from palliative care, pain management and harm reduction at the final  ATOME conference in Warsaw, Poland

Scientists and experts from palliative care, pain management and harm reduction attended the final ATOME conference in Warsaw, Poland

Underlining this statement, a patient who was in a substitution therapy programme described her personal experiences with OAT. Despite being grateful for the opportunity to get methadone, she wanted more self-control and privacy and did not like having to obtain her medicines daily at the clinic. Due to the strictly regulated treatment, it is quite difficult for people to have a ‘normal’ daily routine. She said that she “felt alienated and over-scrutinised and did not have anyone to turn to for help”. Other barriers for OAT are the lack of programmes in rural areas.

Access to opioids for pain treatment
In a global comparison, Poland is one of the countries with an advanced developed integration of palliative care; nearly all strong opioids are available and fully reimbursed. Unfortunately, however, this applies only for cancer patients, and overall Poland’s opioid consumption rates are quite low. Marlena Ewa Kazon of the Patient Foundation, Chrustka, (‘Nobody should suffer’), stated:

“We highlight inconsistent pain treatment situations to raise the awareness of doctors. We try to encourage patients to fight for their rights. In the Polish society there are still a lot of prejudices against opioids.”

So even if Poland is highly developed in palliative care, the ATOME conference showed that there are still fields such as harm reduction and treatment of non-cancer patients where a lot needs to be done. The conference brought together people from various fields and hopefully marked the starting point for cooperation and improvement.

Concluding the symposium, Dr Willem Scholten, a World Health Organization Consultant for Medicines and Controlled Substances, urged conference participants to take on the fight to improve the situation in their country. The ATOME consortium will send a report on the outcomes and recommendations of ATOME activities to the Polish Minister of Health in autumn 2014.

Links and resources

  • Access to Opioid Education in Europe ATOME
  • Click here to read previous reviews of ATOME conferences on the EAPC blog.
Posted in Advocacy, ATOME, National and international events | Tagged , , | 1 Comment

Giving voice to life: The valuable work of volunteer hospice biographers

Vivienne Pender is a counsellor who coordinates the Biography Service at Mary Potter Hospice Wellington, New Zealand. Here the author explains the background to her longer article that is published in the July/August edition of the European Journal of Palliative Care.

Vivienne PenderI enjoy stories, listening to the ordinary everyday lives of people resonating personality. I enjoy those unique times in life when I am truly listened to by someone who is free of their own stories, willing to give full attention. It is this experience, this deep listening, that we bring to people who are dying when they record their life stories in biography. We want the dying person to be in charge of what they express. It is not unusual to hear the words: “My life is not interesting to anyone else. I can’t think of anything to say. ” Then, with rapport established and the ability of the volunteer biographer to truly listen, people are often surprised by the memories and experiences that pour forth.

Recently a family member commented to a biographer: ” I am amazed at how my mother’s true personality shines forth in the biography. I hear her speaking. We are deeply grateful.”

At another time a young man who had difficulty relating to his father said after his death when he read the biography: “We (the family) read about events we didn’t know about, our father’s courage, his young life, we didn’t know this, I cry with tenderness as I read it. He was so difficult and didn’t talk about this.”

This ability of the volunteer biographers to faithfully transcribe is an essential skill. When a dying person hears their own words read back to them they will then make any changes they want. Eventually a spiral bound book with photos chosen by the dying person and their family completes the biography.

When I am with volunteer hospice biographers I am inspired by their skilfulness, discipline, and willingness to question and grow in their role. They are profoundly affected by the people they meet. I wrote about training volunteer hospice biographers when I realised there were few volunteer training articles available. I believe in interactive training where experienced people train new skilled people and there is a stimulating exchange of skills and knowledge , an openness to personal vulnerability and continuing role development.

At Mary Potter Hospice in New Zealand volunteer biographers receive training that emphasises compassionate communication, teamwork, skilful transcribing and creative production. They are a volunteer group who enjoy living their own lives and the stimulating exchanges in the supervision groups and training days reflects this. Every biography produced is an expression of relationship; ‘you are not alone’, dignity, autonomy, and human connectedness.

Read the longer article in this month's European Journal of Palliative Care

Read the longer article in this month’s European Journal of Palliative Care

To read a copy of the full article… This post relates to a longer article, ‘Giving voice to life – training volunteer hospice biographers’ by Vivienne Pender, which is published in the July/August 2014 issue of the European Journal of Palliative Care (vol. 21.4). If you have a web-based subscription to the journal you can download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Links
Mary Potter Hospice. 

 

Posted in European Journal of Palliative Care, Publications, Volunteering and palliative care | Tagged , | 1 Comment

Palliative medicine: Now a medical specialty in 18 European countries

Dr Carlos Centeno, University of Navarra, Institute for Culture and Society (ICS), ATLANTES Research Programme, Pamplona, Spain, explains the background to a new report, drawn up by the EAPC Task Force on the Process of Specialisation in Palliative Medicine in Europe and presented at the 8th EAPC World Research Congress in Lerida (Spain).

COVER MED SPECIALISATIONFor many years we had no clear idea of where and how doctors working full time in palliative medicine could obtain advanced training qualifications, nor where palliative medicine was considered a medical specialty. Now, a new report by the EAPC Task Force on the Process of Specialisation in Palliative Medicine in Europe reveals that 18 out of 53 European countries have official specialisation programmes: the Czech Republic, Denmark, Finland, France, Georgia, Germany, Hungary, Ireland, Israel, Italy, Latvia, Malta, Norway, Poland, Portugal, Romania, Slovakia and the United Kingdom. Ten of these programmes have been started in the last five years, demonstrating that palliative medicine is truly growing as a field of specialisation in Europe.

The report authors: (left to right): Dr Carlos Centeno, Dr Deborah Bolognesi and Prof Guido Biasco

The report authors: (left to right): Dr Carlos Centeno, Dr Deborah Bolognesi and Prof Guido Biasco

The report is the result of a collaborative research project spearheaded by Deborah Bolognesi, Professor Guido Biasco and I, investigators at the Universities of Navarra and Bologna and members of the EAPC task force. We designed a study to review the countries in which a possible specialisation process had been identified and built up a successful research team involving our two institutions.

The result of this study was presented as a supplement to the EAPC Atlas of Palliative Care in Europe and is entitled ‘Specialisation in Palliative Medicine for Physicians in Europe 2014’.1 It is a 50-page monograph that has been carefully edited by the same publishing company that published the EAPC Atlas. The publication includes an introduction, in which the methodology is described, a section of country reports describing the specialisation process in each country, and a graphics section with maps and tables that enable the reader to make a comparative analysis. Similar reports with information about specialisation processes in the United States, Australia and Canada are included in an appendix.

The stand at the 8th EAPC World Research Congress: Eduardo Garralda, ATLANTES research team member, talks to Dr Michaela Bercovitch who contributed to the report on behalf of Israel

The stand at the 8th EAPC World Research Congress: Eduardo Garralda, ATLANTES research team member, talks to Dr Michaela Bercovitch who contributed to the report on behalf of Israel

During this study we have had the opportunity to work very intensely with a European network of more than 20 palliative care professionals, who generously gave up their time to respond accurately and meet the requirements of the study by providing data from their native countries. It has been very rewarding to present them with the result of their efforts, an excellent publication that will help our field progress and that will be available to the international community.

References
1. Bolognesi D, Centeno C, Biasco G. Specialisation in Palliative Medicine for Physicians in Europe 2014. A Supplement of the EAPC Atlas of Palliative Care in Europe. Milan: EAPC Press; 2014. Available to download (accessed 19 July 2014) and as a free App ‘ICS-ATLANTES’ for the main electronic platforms.

More about the project
‘Specialisation in Palliative Medicine for Physicians in Europe 2014’ is a joint project of the University of Navarra, Institute for Culture and Society (ICS), ATLANTES Research Programme, Pamplona, Spain, and the University Alma Mater Studiorum, the Giorgio Prodi Centre for Cancer Research and the Accademia delle Scienze di Medicina Palliativa in Bologna, Italy. The project received an unrestricted educational grant from the Fondazione Isabella Seragnoli, Bologna, Italy.  The above-mentioned authors represent the European Association for Palliative Care (EAPC) Task Force on the Process of Specialisation in Palliative Medicine in Europe

 

LLeida_fbSelected presentations from the 8th EAPC World Research Congress now online…
Even if you weren’t able to attend the congress held in Lleida, Spain, in June 2014, you can now download some of the presentations and other information relating to the congress. Click here to view.

Posted in EAPC Congresses, EAPC Taskforces/special projects, Education and training | Tagged | 1 Comment

We’re not alone: 11th National Congress of the Hungarian Hospice-Palliative Association

Agnes Zana continues this week’s focus on palliative care in Hungary. Agnes Zana, PhD, is Assistant Lecturer at Semmelweis University, Institute of Behavioural Sciences, Budapest and a board member of the Hungarian Hospice Palliative Association.

Agnes Zana

Agnes Zana

Our biennial national conference was held in Zalaegerszeg on 27-29 March 2014 – the biggest professional forum of people working in Hungarian hospice and palliative care services. The motto of this year’s conference was ‘We’re not alone’, symbolising the attention to patients and families, and the support of professional and personal carers. The patron of the conference was Dr Hanna Páva, Deputy Secretary of State at the Ministry of Health. Out of the 163 registered participants, 27 were doctors and the rest professional nurses, psychologists, physiotherapists, social workers and volunteers.

The scientific programme focused strongly on the latest national developments and research. In the session on alleviating physical symptoms, Dr Csaba Simkó, Head Physician of Hospice Department, Miskolc, dealt with questions such as use of medicines against neuropathic pain in clinical therapy. Professor Dr András Telekes gave a plenary lecture on the topical questions of pain management. Dr Csaba Dózsa unveiled the latest results of healthcare cost-effectiveness specifically in hospice-palliative services, which compared favourably with other healthcare services.

The psychosocial session concluded with a workshop: ‘New directions of psychosocial service in Hungary’, which introduced the characteristics and roles of three professions in palliative care: psychologist, psychotherapist and philosopher (with philosophic praxis). This thought-provoking session was especially valuable as it led to an interdisciplinary discussion with doctors, psychologists, professional nurses, physiotherapists and other professionals.

Leena Pelttari and Anna Pissarek, guests from Austria, held a plenary lecture on ‘Palliative care in the Austrian social care system’. They introduced the Austrian model and the steps taken so far in the Hungarian and Austrian collaborative project: Nárcisz – Hospice caretaking model program on the borders.

For the first time we had a separate session on paediatric care with speakers reporting on the establishment of specialist knowledge and standards, as well as the experiences so far of children’s hospice-palliative care in Hungary. In other sessions, healthcare professionals reported on physiotherapy, nutrition and complementary therapies. The growing importance of hospice volunteering was also covered with colleagues from the Hungarian Hospice Palliative Association and the Pécs-Baranyai Hospice Foundation introducing the new Hungarian training model for volunteers.

Judit Schaffer, President of the Hungarian Hospice Palliative Association, awards the Alaine Polcz medal to Dr Katalin Hegedűs

Judit Schaffer, President of the Hungarian Hospice Palliative Association, awards the Alaine Polcz medal to Dr Katalin Hegedűs

The conference was also a time to recognise the contribution of those working in Hungarian hospice palliative care services. Judit Schaffer, President of the Association, awarded the Alaine Polcz medals and awards to Dr Katalin Hegedűs, Dr Krisztina Tóth, Elvira Ács, Zsuzsa Borossné Nagyváradi, Mónika Búsné Váradi, Dr Veronika Márvány and myself.

My deepest impression was the really interdisciplinary and supportive work among professionals of separate fields – the conference message ‘We’re not alone’ was felt strongly during the conference underlined by the professionalism and quality of lectures. We have few volunteers in Hungary, but their numbers are slowly growing; their attendance at the congress resulting from our social campaign. And finally, we hope that Austrian-Hungarian co-operation will open new doors for Hospice-Palliative care, social care and educational collaboration in these countries.

Links and resources

  • Click here to view a post from Dr Ágnes Csikós published earlier this week. You can find other posts about palliative care in Hungary on the EAPC blog.

CALL FOR ABSTRACTS
Now’s the time to start thinking about submitting your abstract for the 14th World Congress of the European Association for Palliative Care: Building Bridges. 8-10 May 2015. Click here to submit your abstract online.

 

Posted in Education and training, National and international events | Tagged | 1 Comment

Hungarian palliative medicine reaches another milestone

This week in the EAPC blog we are focusing on Hungary. Dr Ágnes Csikós, a palliative care physician and founder of the Department of Hospice-Palliative Medicine in Pécs, starts us off with some exciting news…

Agnes Csikós

Dr  Agnes Csikós

I am delighted to announce that, beginning in autumn 2014, physicians in Hungary will be able to take a one-year course to qualify for a licence in palliative medicine. This milestone is the fruit of collaborative efforts of many dedicated professionals working in the field since the birth of the Hungarian hospice movement. In September 2013, a Ministerial Decree was signed confirming approval of a licensure programme, which supersedes the previous 80-hour training requirement for physicians wishing to qualify for a hospice-palliative care position. The programme will be built on basic clinical specialties such as internal medicine, surgery, family medicine, paediatrics, or oncology, and will be offered through the four participating Hungarian medical schools in Pécs, Debrecen, Szeged, and Budapest. The first people to sit the licensure exams will be the Hungarian faculty themselves, at the Third Annual Palliative Medicine Symposium at the University of Pecs.

The course includes both theoretical and practical sections, and requires candidates to do clinical rotations in inpatient and home hospice programmes.  Participating physicians will be trained in communications skills as well as pain and symptom management and bereavement. Physicians who pass the final exam will be awarded a licence to practice palliative medicine in Hungary.

The programme will be co-ordinated through the Department of Hospice-Palliative Medicine at the University of Pécs Medical School Institute of Family Medicine in close collaboration with the Hungarian Hospice-Palliative Association and national experts. The licensure programme will produce better-trained physicians, and result in the establishment of more desperately needed palliative care programmes across the country. The curriculum has been designed, and further work remains to be done to finalise the logistics and coordination, so the programme should be up and running by late 2014.

As part of their licensure, doctors will learn about the management of breakthrough pain, of great concern to patients and families in the homecare service. Our teams have not had access to the recommended short or ultra short-acting oral opioid analgesics, which are currently not reimbursable in the country. Sevedrol, the only previously available short-acting oral opioid, was pulled from the market at the end of 2012, because the government health insurance programme did not fully reimburse it and industry did not consider it sufficiently profitable. Only morphine injections, which are challenging to use in the homecare setting, are currently available for breakthrough pain. However, as a result of increased education of government officials through the ATOME (Access to Opioid Medication in Europe) programme, the Ministry of Health will reintroduce Sevedrol in late autumn 2014.1 This makes me feel that not only can we really provide better pain control to our patients, especially to those who often suffer from breakthrough pain, but we can also use the short-acting morphine to titrate the daily dose of patients.

References
1.    Pettus K.“A deeply respectful” programme: Presentation of ATOME outcomes side event 67th World Health Assembly in Geneva on the  European Association for Palliative Care blog (2014, accessed 4 July 2014).

Links and resources

Coming up…
More news from Hungary on Thursday when Dr Agnes Zana will be writing about the 11th National Congress of the Hungarian Hospice-Palliative Association.

Posted in Advocacy, Education and training, National and international events | Tagged | 2 Comments

Neurology guidelines: One step closer

Dr David Oliver, Chair of the European Association for Palliative Care (EAPC) Task Force on Neurology and EAPC Board Member.

Dr David Oliver

Dr David Oliver

How do we improve the care of people with progressive neurological disease, such as amyotrophic lateral sclerosis, multiple sclerosis and Parkinson’s disease? One way to make a change has been to work with neurologists to agree guidelines on palliative care. We came one step nearer to this in May when a consensus review on palliative care in neurology, produced by the EAPC Neurology Task Force, was presented at the Joint Congress of the European Federation of Neurological Societies (EFNS) and the European Society of Neurology, held in May in Istanbul.

I presented the palliative care consensus document within a highlighted session of the congress for new guidelines. It was a real privilege to be able to present the work of the Neurology Task Force to neurologists at this congress. We have been working together with the EFNS for more than five years and the guidelines are now nearly complete. More than 100 people were at the session, which was especially highlighted within the programme and this does show that palliative care is now seen to be an important part of the care of patients with neurological disease. I am very grateful to all the task force members for their hard work in completing this important piece of work. There was a good response to the session and the final draft of the document is now being prepared for publication in The European Journal of Neurology – the official publication of the EFNS.

I have had a special interest in the care of people with neurological disease for more than 32 years and I have seen a real change over this time. Neurologists are now actively involved in the ongoing care of their patients and palliative care is more widely appreciated. However there are differences across Europe and these guidelines should enable increased discussion between all involved in patient care so that we can all work together to improve the quality of life of patients with neurological disease.

Links and resources…

  • Click here for information about the EAPC Task Force on Neurology and Palliative Care. 
  • Oliver D, Borasio GD, Johnston W. (eds). Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement 4th edition. Oxford; New York: Oxford University Press; 2014.
  • Oliver D (ed). Motor Neurone Disease – a Family Affair 3rd edition. London: Sheldon; 2011.
  • Oliver D (ed). End of Life Care in Neurological Disease. London: Springer; 2012.

About the author…
David Oliver has worked for more than 36 years in palliative care developing a special interest in neurological palliative care. He recently retired from full-time work as consultant at the Wisdom Hospice in Rochester in Kent but continues to work part time, both within the hospice and as Reader at the University of Kent. He is also a Board member of the EAPC. (Professor Gian Domenico Borasio has written about David’s contribution to neurological palliative care on the EAPC Blog).

 

Posted in EAPC Board Members, EAPC Taskforces/special projects | Tagged | 2 Comments