The start of volunteering in hospice and palliative care in Serbia

NEW SERIES: HOSPICE AND PALLIATIVE CARE IN EASTERN AND CENTRAL EUROPE …

Serbia’s first palliative care social worker and volunteers coordinator, Mijodrag Bogićević, is Patient Care Manager at the Center for Palliative Care and Palliative Medicine “BELhospice” and a member of the European Association for Palliative Care (EAPC) Task Force on Volunteering in Hospice and Palliative Care. Here, Mijodrag writes about the beginnings of hospice and palliative care volunteering in Serbia.

Mijodrag Bogićević

BELhospice was established in 2004 in Belgrade – the first specialised charity in Serbia providing free palliative homecare services, education and training.The need for palliative care in Serbia is great: 30,000 new cancer patients each year, 16,000 patients and their families in need of palliative care, 5,209 deaths from cancer each year in our capital city, Belgrade.

I joined BELhospicein 2012 as a social worker, tasked to launcha volunteer service and develop a psycho-social support programmefor cancer patients and family members. These activities were part of a project aimed at developinga multidisciplinary approach.By the summer of 2012, we had formed a multidisciplinary team, which included trained volunteers

Initially, my work was met with scepticism and pessimism that volunteering in palliative care would be almost impossible in Serbia. Hospice and palliative care was (and still is) little known and an unpopular area for professionals. Most volunteers in Serbia are young people, who mostly want to have fun and meet new people through volunteering so working with terminally ill cancer patients was at first unappealing. For most adults, the priority is to solve the problems of existing – they spend a lot of time at work – and there’s a general feeling that life is full of suffering – so why face more suffering through volunteering?

How volunteering began …

In June 2012, in cooperation with Albatros, a not-for-profit organisation in Lyon, France, BELhospice organised the first training for hospice and palliative care volunteers in Serbia. Seventeen participants took part but only four people decided to volunteer. I was lucky because these four people were great: young, and full of enthusiasm and ideas. Together, we developed a volunteer programme and registered it with the Ministry of Social Welfare. A month later, I wrote the first manual for hospice and palliative care volunteers in Serbia and soon after BELhospice volunteers began to visit patients in their homes. The first visits went really well, our patients were satisfied and volunteers were full of positive impressions. This gave us the confidence to continue. As the service developed, certain issues started to arise including boundaries, length of visits, clarification of roles and activities of volunteers, reporting methods  – a clear sign that the volunteer service was truly alive.

A patient with volunteers during a visit to her favourite park. Photograph © BELhospice.

Six years later 

Today, it would be very hard to imagine BELhospice without volunteers – they are an integral part of all our activities. Together with a small team of professionals, volunteers have been working to improve the quality of life of oncology patients in Belgrade. Most of our volunteers are students between 22 to 26 years of age. They volunteer to acquire new knowledge and skills, meet people and build greater chances for employment while some want to help because of personal experiences with terminal illness and death in the family. But not all BELhospice volunteers are young – though traditionally it was unusual for older people to be volunteers, the concept is slowly developing.

While most patients are between 50 to 60 years old, we care increasingly for younger patients from the age of 16. For many of our patients, especially those under 20, our volunteers are the most important part of the multidisciplinary team. Younger patients often feel socially isolated, particularly as the disease progresses and schoolfriends stop visiting them.

So far, BELhospice has held 12 volunteer training programmes; 200 people successfully completed them, most of whom are now involved in various activities. In 2016 and 2017, volunteers and the new volunteer coordinator worked together to collate ‘Volunteer Stories’ for publication as a book. (Read the stories in Serbian here). This year, our goal is to prepare volunteer activities in the first Serbian Day Hospice.

Angelina celebrates her birthday with volunteers. Photograph © BELhospice.

Professionally, I am fulfilled when reading volunteers’ stories –  they describe how much they have benefited from volunteering and how it has helped their personal development.

To quote from the letter of volunteer Vera Perunicic:

«Since I became a BELhospice volunteer, I observe the world with more passion, I forgive more easily, I appreciate every moment … I have learned to say “no” without feeling guilty, I have more empathy and awareness about the world we live in. … Spending time to help others is a very humbling experience for me and no matter how much you invest, it is nothing compared to what you gain in return.»

I am also thankful to all our volunteers for contributing their time and efforts, as only together we can further develop palliative care in Serbia and ensure that all patients live their lives with dignity until the very end.

Links:

Please advocate for the support, recognition, promotion and development of volunteering in hospice and palliative care by signing the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care.

Posted in East & Central Europe, NATIONAL & INTERNATIONAL REPORTS, VOLUNTEERING IN PALLIATIVE CARE | Tagged | Leave a comment

What’s to like in palliative care part two: The most-viewed posts on the EAPC Blog in 2017

The European Association for Palliative Care (EAPC) Social Media Team are delighted to announce the winners of the Top Ten most-viewed posts published on the EAPC Blog in the second half of 2017. 

Earlier this year we were delighted to announce the winners of the Top Ten most-viewed posts for the first half of 2017. Viewing statistics are cumulative throughout the year so to ensure that posts published in the last part of the year were not unfairly disadvantaged, we are now publishing the Top Ten most-viewed posts from July to December 2017.

There’s another great range of exciting posts from contributors from Europe (The Netherlands, Portugal, Spain and the UK), Australia and Brazil. But what’s remarkable about these winners is their diversity – they represent a real cross-section of disciplines involved in palliative care: clinicians, academics, educationalists and from the allied health professions we are delighted to include an art therapist, a dramatherapist and a physiotherapist, all playing a vital role in widening access to palliative care.

Some of the winners of the Top Ten most-viewed posts (clockwise): Ida Korfage, Judith Rietjens, Janete Maria da Silva, Dr Ricardo Tavares de Carvalho, Lucía Navarro Marchen, Sandra Martins Pereira, Mara Freitas, Cátia Ferreira, Pablo Hernández-Marrero and Manuel Luís Capelas

Top Ten posts – July to December 2017 

We’re also very proud that among the winners are our very own ‘EAPC ambassadors’ – people who work so hard to further the work of the organisation through their roles on task forces, world congress scientific committees and member organisations. Just click on the title to read the full post.

  1. Invasive mechanical ventilation: Concerns over terminal extubation by Janete Maria da Silva, a physiotherapist, and Dr Ricardo Tavares de Carvalho, Coordinator of Palliative Care, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Brazil. Published 21 August 2017.

2.   Spain’s first paediatric palliative care unit by Lucía Navarro Marchen, Hospital Sant Joan De Déu d’Esplugues, Barcelona, Spain. Published 16 August 2017.

3.   Advance Care Planning: The EAPC white paper in a nutshell by Judith Rietjens and Ida Korfage, Assistant Professors in the Department of Public Health of Erasmus MC in Rotterdam, the Netherlands. Published 6 September 2017.

  1. Euthanasia and physician-assisted suicide in Portugal: Bringing the EAPC white paper to the centre of the Portuguese debate by Sandra Martins Pereira, Mara Freitas, Cátia Ferreira, Pablo Hernández-Marrero and Manuel Luís Capelas, on behalf of the Portuguese Association for Palliative Care. Published on 17 July 2017.

More winners of the TopTen most-viewed posts: (Top row l to r): Libby Sallnow, Irene Renzenbrink, Alex Ioannou, Ana Sofia Carvalho, Sébastien Moine and Caroline Belchamber.

5.    Dramatherapy in palliative care by Alex Ioannou, HCPC-registered Dramatherapist, St Christopher’s Hospice, London, UK. Published 27 November 2017.

6.   Euthanasia and Physician Assisted Suicide in Portugal: The need for further research to mediate the debate by Sandra Martins Pereira,Pablo Hernández-Marrero and Ana Sofia Carvalho from the Instituto de Bioética, Universidade Católica Portuguesa, Porto, Portugal. Published 26 July 2017.  

7.  EAPC 16th World Congress, Berlin 2019 – call for proposals for Parallel and ‘Meet the Expert’ Sessions by Dr Sébastien Moine, Chair of the EAPC Scientific Committee, Berlin 2019. Published 20 December 2017.

8.  New workbook for carers in palliative care released by Dr Libby Sallnow, palliative medicine doctor, University College London Hospital, and doctoral student, University of Edinburgh, UK. Published 23 October 2017.

9.  Art therapy and the restoration of capacity in palliative care by Irene Renzenbrink, art therapist and social worker from Melbourne, Australia. Published 1 November 2017.

10. What matters to me: A human rights approach to end of life care by Caroline Belchamber, Professional Lead for Education at Sue Ryder and Visiting Fellow at Bournemouth University, UK. Published 5 July 2017.

And the overall winners of the Top Three posts of 2017 are … 

Winners of the Top Three most-viewed posts of 2017. Clockwise: Richard Sawatzky, Janete Maria da Silva, Ricardo Tavares de Carvalho,
Shane Sinclair and Robin Cohen.

We are delighted to announce the overall winners of the top three most-viewed posts for 2017.

  1. Invasive mechanical ventilation: Concerns over terminal extubation by Janete Maria da Silva and Dr Ricardo Tavares de Carvalho from São Paulo, Brazil. A backgrounder to their longer article published in the August 2017 issue of the European Journal of Palliative Care.
  1. After more than 20 years, the McGill Quality of Life Questionnaire is revised by Robin Cohen, McGill Departments of Oncology and Medicine and Staff Investigator, Lady Davis Research Institute, Montreal, and Richard Sawatzky, School of Nursing, Trinity Western University, Canada. (Selected as Palliative MedicineEditor’s Choice, February 2017).
  1. Sympathy, empathy and compassion: Patients can tell the difference – Can you? by Shane Sinclair PhD, Faculty of Nursing, University of Calgary, Canada. (Selected as Palliative Medicine Editor’s Choice, May 2017).

The authors of the overall Top Three winning posts will each receive a copy of ‘The Changing Face of Volunteering in Hospice and Palliative Care: An international perspective’, by Ros Scott and Steve Howlett, Oxford University Press, 2018.

Hayward Medical Communications, publisher of the European Journal of Palliative Care, had previously offered a prize of a one-year online personal subscription to the overall winner of the most-viewed post in 2017 but owing to the sad closure of the journal this is no longer feasible. We are, however, very grateful to Oxford University Press for kindly contributing copies of the above book.

Welcome to new bloggers!

In total, our contributors come from every continent of the world representing different levels of seniority and settings. While many are experienced practitioners and academics and have published widely, there are many others who have taken their first step at blogging – even eminently respected pioneers of palliative care have expressed a moment of self-doubt when writing their first blog post for us! If you have a story to share, please do consider writing for the blog – we would really value your involvement and we promise to support you all the way if you’re nervous, or if English is not your first language.

Congratulations and huge thanks to the authors of the above posts, and to everyone who has contributed during the past six years. You play a vital role in helping the EAPC to share high-quality information and research – not only to our members and readers in Europe – but across the world.

Links

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A call to action for regional and national palliative care organisations …

Put Palliative Care into the Political Declaration for the 3rd High-level Meeting on NCDs!

In this advocacy backgrounder, Katherine Pettus, PhD, International Association for Hospice & Palliative Care (IAHPC) Advocacy Officer, explains how global organisations are working together to ensure that palliative care language is included in the Political Declaration, where it is currently absent. And to help you play a vital advocacy role, there are several resources to use.

Katherine Pettus

Brief background

Before a high-level meeting such as the one coming up at the United Nations on non-communicable diseases (NCDs) in September, two leading member states produce a ‘zero draft’ of text that all other member states, advised by civil society organisations, negotiate, contribute to, and polish over subsequent months. The zero draft is the first draft of what usually ends up as a consensus Political Declaration and General Assembly Resolution that expresses what is called “the will of the parties”.

Uruguay and Italy are leading this process for the 3rd High-level NCDs meeting, and in June released the zero draft of what will be the final Political Declaration. That zero draft does not mention palliative care at all!

This is not surprising: Foreign Affairs Ministry (MoFA), not Health! (MoH) staff, are leading the drafting and negotiations process on the Political Declaration in most countries. This is because the main focus of the document is to recommend trade and fiscal policies that “prevent and control” NCDs, rather than health policies to care for the millions of people suffering from NCDs that are not prevented and controlled. This is precisely where and why palliative care must enter the narrative.

MoFA staff negotiating the text don’t usually know much about health policy, let alone about palliative care for NCDs. Although they consult with their MoH counterparts, the impact of those consultations varies from country to country, according to palliative care literacy levels of MoH staff. This is where national and regional palliative care organisations can serve as essential ‘connective tissue’ between communities and governments. Governments must know about your work, and be shown precedents!

Good advocacy ensured the inclusion of palliative care in the 2017 Montevideo Roadmap.

Precedent is all in United Nations’ negotiations over text!

The 2012 Political Declaration and the 2013 follow-up report include palliative care language, although the 2014 Political Declaration contains none! BUT, good advocacy ensured the inclusion of palliative care in the 2017 Montevideo Roadmap, which originally ignored it.

It is much easier for advocates to make the case for national palliative care policies when high-level declarations contain explicit language recommending that UN member states develop services. A vacuum in language provides an excuse for policy vacuums, which have existed for too long with regard to palliative care education and implementation.

IAHPC, the Worldwide Hospice Palliative Care Alliance (WHPCA), the Union for International Cancer Control (UICC), and the NCDA (Non-communicable Diseases Alliance) are all submitting comments on the zero draft requesting the inclusion of palliative care at different places in the text. IAHPC endorses all these submissions. We believe that it is good for member states and ministries to see that four different global organisations, with different constituencies, are concerned about this issue and advocating to ensure inclusion of palliative care language.

Please take some time to do some advocacy with your government!

There is no policy without evidence-based advocacy. IAHPC cannot advocate directly with governments. Only citizens can. Your governments will be negotiating the text and (with your help!) considering our submissions in the next few months.    

Introduce yourself and your organization to NCD staff in your ministries of health. Let them know that you support inclusion of palliative care language in the Political Declaration under construction.

The text of the zero draft and the IAHPC submission are posted on the IAHPC website. The NCDA submission is posted on their website.

The next phase of negotiation on the text will take place today, 11 July, and 18 July, so please make sure your country negotiators are informed of our position.

Please direct any very welcome questions, comments or feedback to me, Katherine Pettus.

Links and resources

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Another milestone for neurology and palliative care: EAPC and EAN join forces at neurology congress in Lisbon

David Oliver, Honorary Professor at the University of Kent, Canterbury, UK, Chair of EAPC Palliative Care in Neurology Reference Group and EAPC Board member.

David Oliver

At the recent 4th Congress of the European Academy of Neurology in Lisbon, the close collaboration between the European Association for Palliative Care(EAPC) and European Academy of Neurology (EAN) was further strengthened. For the first time, an EAPC/EAN Symposium on Palliative Care and Neurology was part of the programme. More than 100 people attended – the highest number at a neurology congress – and Professor Phil Larkin, President of the EAPC, co-chaired the session with Professor Paul Boon, the Chair of the Congress committee.

During the session, Professor Raymond Voltz (Germany), Dr Simone Veronese (Italy) and Professor David Oliver all spoke on developments within the field. There is now more evidence for the effectiveness of palliative care in improving the symptoms and quality of life of people with neurological disease and many guidelines have been developed which include palliative care. The importance for all neurologists to provide a palliative care approach and to collaborate with specialist palliative care was emphasized. There was really good feedback and several of the audience discussed the issues afterwards. You can find further details of the EAPC/EAN Symposium here.

Padrão dos Descobrimentos – the Monument of Discoveries, Lisbon.

Within the same congress, a case-based workshop on end-of-life care for neurological patients looked at the use of interventions, such as gastrostomy or ventilation at the end of life, coping with difficult patient and family situations and how to be involved in difficult conversations. Dr Idris Baker, a palliative care physician from Swansea, UK, Dr Peter Zepper, a palliative care physician and neurologist form Germany and Professor Orla Hardiman, a neurologist from Ireland, all spoke in an interactive session. Twenty-four people attended with good interaction and discussion.

I also spoke at a Scientific Theatre – a presentation within the poster and exhibition area. Twelve people came to hear about the Consensus document on palliative care and neurology, providing another opportunity to involve neurologists in considering palliative care.

Collaboration between the EAPC and EAN continues and the Memorandum of Understanding has recently been updated. The new President, Professor Franz Fazekas, and the boards of both organisations are committed to developing the links.

Speaking of the meeting, Professor Phil Larkin said:

“It was so good to see so many neurologists interested in palliative care and committed to improving care for patients. We look forward to this collaboration developing further – and to welcoming neurologists to a session within the EAPC Congress in Berlin in 2019.”

Links

 

Posted in EAPC Board Members, EAPC Taskforces/special projects, Neurology, SYMPTOM CONTROL | Tagged | Leave a comment

Deaths after feeding tube withdrawal

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE . . .

Professor Jenny Kitzinger and Professor Celia Kitzinger explain the background to their longer article selected as ‘Editor’s Choice’ in the July 2018 issue of Palliative Medicine.

Prof Jenny Kitzinger (left) with Prof Celia Kitzinger

For families, and for clinicians, it can be difficult to accept that withdrawing clinically assisted nutrition and hydration is sometimes the right thing to do.

Our ‘Editor’s Choice’ article in Palliative Medicine is part of a larger study into clinical, social, legal, and ethical aspects of decision-making relating to people who lack the capacity to make these decisions for themselves.

We launched our research and founded the Coma and Disorders of Consciousness Research Centre after our sister, Polly Kitzinger, was catastrophically brain injured in a car crash in 2009. We believe that she was given life-prolonging medical treatments that she would have refused if she could. We described our research rationale in a video made at the very beginning of our project.

Since those early beginnings, we have conducted in-depth interviews with almost 100 people with a relative in a disorder of consciousness – either a Prolonged Vegetative State (known in Europe as Unresponsive Wakefulness Syndrome) or a Minimally Conscious State. We have also interviewed many health professionals working in this area. You can watch some of these interviews on the multi-media resource we created for families and practitioners.

In England and Wales, many patients in prolonged disorders of consciousness have ‘ceilings of treatment’ in place. Their medical notes record that they should not be given cardiopulmonary resuscitation, admitted to intensive care, or given antibiotics in case of life-threatening infections. But they continue to receive clinically assisted nutrition and hydration for years or decades. Estimates indicate there are up to 16,000 people in Permanent Vegetative States receiving continued treatment.

‘Deathbed scene’: Created by the artist Tim Sanders and informed by dialogue with the authors about their research.

One issue that comes up repeatedly in interviews with families (and some clinicians) is anxiety about the withdrawal of feeding tubes which (for some), seems more like ‘basic care’ than ‘medical treatment’. Concerns about ‘starving and dehydrating’ the patient to death come to the fore when profoundly brain-injured patients have been maintained for years in a medically stable condition, and don’t have a degenerative illness. Some clinicians have ‘conscientious objections’ to withdrawing feeding tubes in these circumstances, and never raise the possibility with families. Some families are also horrified: they say it’s ‘barbaric’, ‘hypocritical’ and ‘you wouldn’t do it to a dog’ (see article here). Many clinicians and families fear a bad death.

Our Palliative Medicine article analyses family members’ descriptions of their relatives’ deaths. A novel feature of the article is the links to film clips from our interviews so you can watch and listen to them (click here for an example). Although it can be hard for families to witness such deaths, overwhelmingly, families described the deaths as ‘peaceful’ – and no one regretted supporting or advocating for treatment withdrawal.

We think it would be helpful for health professionals (and families) to know that with good specialist palliative care (such as that recommended in the relevant National Guidelines) these can be ‘good’ deaths.

Links

  • Jenny Kitzinger is at a Professor at the School for Journalism, Media and Culture at Cardiff University.
  • Celia Kitzinger recently resigned as Professor in the Sociology Department at University of York and is now an Independent Scholar.
  • Follow Jenny and Celia on Twitter @CDOCuk
  • Read more Editor’s Choice posts on the EAPC Blog.

Read the full article in Palliative Medicine
This post relates to the longer article, ‘Deaths after feeding tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience’ by Jenny Kitzinger and Celia Kitzinger, published in Palliative Medicine 2018 Vol. 32 (7), page(s): 1180-1188. First published online: March 23, 2018. https://doi.org/10.1177/0269216318766430.

Download your free PDF copy of this month’s Editor’s Choice here.

EAPC members or registered users can also download the article by following these instructions.
Go to the EAPC website www.eapcnet.eu Choose Resources, then from the left-hand side-bar choose Clinical & Care, Publications & Documents; LOGIN or REGISTER and scroll down to the article or paste into the browser: https://bit.ly/2KDPxtB

Once you have logged in or registered you can also scroll down to download all previously published articles.

 

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MedLang Palliative Care – new digital tool to advance education and training in Europe

NEW SERIES: HOSPICE AND PALLIATIVE CARE IN EASTERN AND CENTRAL EUROPE

Romania is one of four countries leading an innovative project to improve palliative care education in Europe that is available in six languages. The Romanian project is directed by Associate Professor Ovidiu Rusalim Petris from Grigore T. Popa University of Medicine and Pharmacy of Iasi. Here, Dr Vladimir Poroch, who plays a key role in the project, explains.

Dr Vladimir Poroch who plays a key role in Medlang Romania.

Ovidiu Rusalim Petris, Director of Medlang Romania.

Medlang is a Massive Open Online Course (MOOC), funded by the European Commission, and is a practical answer to the context of the ageing population in Europe. Using explanatory videos in six languages, the course aims to improve education and training in palliative care through intercultural and multilingual medical communication.

The needs of the beneficiaries targeted, and then involved in the project, showed that qualified medical assistance for palliative medicine in the partner countries was scarce. Also, in many situations, palliative healthcare assistants acquired basic knowledge and skills on the job.

The need to train qualified medical staff to meet the growing demand of assistance in the field of palliation in Europe is a must. How to do this in a qualified, standardised way – and with knowledge and skills aligned to the most recent research findings in the field – was the practical challenge to be met and fulfilled by the project.

Target groups

MedLang addresses the community at large. As well as health and social care practitioners, lecturers and medical students, it is aimed at language teachers working in medical institutions, volunteers, education centres and companies involved in social corporate responsibility.

Medlang project members in Romania.

How MedLang works

The interdisciplinary MOOC offers 20 fundamental palliative medicine procedures. Each procedure follows a standardised approach, with videos to illustrate procedures, including the accompanying communication, and a linguistic unit that practises the specialised language. The videos are available in six languages: Dutch, English, French, Italian, Spanish and Romanian.

The MOOC approach to introduce and practise skills for palliation, based on collaborative learning and evaluation of knowledge and skills, networking and constructivism, is a totally new way of teaching for the countries involved in the project, which are used to classic teacher-centred methods.

Objectives of the project

  • Promote stronger coherence between different EU countries and national transparency and recognition tools and ensure that skills are recognised across borders by identifying, defining and standardising the palliative medical and nursing skills, which allow students across Europe to be active participants in clinical routine after their first year of medical studies.
  • Improve the level of key competencies and skills, with particular regard to their relevance for the labour market (everyday medical practice), through strengthened cooperation between the world of education and training and the world of work.
  • Improve the teaching and learning of languages and promote the EU’s broad linguistic diversity and intercultural awareness.
  • Develop innovative and multidisciplinary approaches to teaching and learning and eLearning materials, which support students both during their skills training and their practical module.
  • Foster quality improvements, innovation excellence and internationalisation at the level of education and training institutions, in particular through enhanced transnational cooperation between education and training providers and other stakeholders.

Main project results

  • Specialized research of medical literature and practice about palliative care in Romania, Italy, Spain and Belgium.
  • Guide of 20 Medical Procedures in six languages, topics covered are: Catheterisation; Paracentesis; Automatic syringe; Bed transfer; Conspiracy of silence; Active listening; Communicating news; Spiritual assessment; Nutrition; Oral care; Patient bath; Pain assessment; Pain prescribing; Burn out syndrome; End-of-life care; Terminal phase; Prevention of ulcer; Awareness level; Patients’ network; Caregivers’ needs.
  • 20 videos with simulation of palliative care procedures.
  • 120 language units for learning six foreign languages for medical purposes (Dutch, English, French, Italian, Spanish and Romanian).
  • Two MOOCs in the fields of palliative care and medical communication
  • Seven Educational Toolkits published in hard copy with DVDs (319 copies).
  • Project website.
  • 1,469 people directly involved by the project activities and a further 320,000 reached by the project products.

In the final evaluation of the project, internal and external experts of our National Agency for Community Programmes in the Field of Education and Vocational Training concluded that:

“The project has produced added value at European level and the transnational approach has led to results that could not have been obtained in a national project. The project is considered an example of good practice.”

Links

More about MedLang

The project is a partnership comprising Grigore T Popa University of Medicine and Pharmacy Iasi, Transilvania University, Brasov, Fundatia EuroEd and Iasi Regional Oncology Institute in Romania; Karel De Grote Hogeschool Katholieke Hogeschool Antwerpen, Belgium; Universidad Europea de Madrid SL, Spain and Azienda Sanitaria Locale TO3, Pixel Associazione Culturale and Connectis, in Italy. This project (2014-1-RO01-KA203-002940) has been funded with support from the European Commission. This communication reflects the views only of the author, and the Commission cannot be held responsible for any use, which may be made of the information contained therein.

 

 

Posted in East & Central Europe, EDUCATION & TRAINING, NATIONAL & INTERNATIONAL REPORTS | Tagged , | 2 Comments

Shout out to peers, mentors, teachers, and educators in palliative care

Equipping teachers with best philosophy, self-help methods and teaching strategies is a part of palliative care education that needs further attention, investigation and development. Piret Paal, Researcher and coordinator at the WHO Collaborating Centre for Nursing Research and Education at the Paracelsus Medical University in Salzburg, Austria, highlights the results of a recent survey.

Piret Paal

In 2017, the World Health Organization (WHO) Collaborating Centre at the Paracelsus Medical University in Salzburg, Austria and the European Association for Palliative Care (EAPC) launched a survey to collect information on post-graduate palliative care education. Among other central topics the survey explored the teacher’s role in palliative care education. This blog post is to thank all peers, teachers, and educators, who break barriers and build bridges in order to advance palliative care globally.

The results revealed that a good teacher should organise the learning in a stimulating way, should know the field; should be ready to learn, should teach and lead by example, and be real. The teacher should be a coach, facilitator, critical friend, mediator, mentor and role model throughout the learning process. This means having the flexibility to move between teaching, training, coaching and mentoring as the learner advances.

A good mentor should be kind, helping to accept the uncertainty, providing emotional support and guiding the learning process by example. Furthermore, the teacher should be authentic, warm-hearted, embodying and living the principles of palliative care.

Who has been your best teacher in palliative care? Why?

First come peers and colleagues, who understand the importance of teamwork, communication, and are able to put patients’ and caregivers’ needs first:

“My colleagues, because they have so much experience, and we can discuss everything with each other.”

“All the professionals who have encouraged my scientific formation, helped to develop a good teamwork focussing on the patient needs.”

Much can be learnt from a teacher, who has done his/her own work on self-understanding and self-reflection around pain, death, and the meaning of suffering

“My boss, due to his compassion, humanity, sensitivity, tenderness, kindness putting the patient/ family and others at the top no matter who you are, where you come from.”

“A general nurse, who was teacher for many years, had homecare experience, including palliation, very human, open, interested, and willing to do well.”

“My medical director – brilliant in communication, broad experience.”

“My professor at university … because he was real, caring, and believed in what he did!”

Dedicated mentors make good future educators

“My mentor, because he always allowed me to speak up, to ask questions, to inquire, to never be satisfied with less than a controlled symptom, achieving a better quality of life of any of my patients. His patience with my sometimes stupid questions, never letting me feel stupid, never feeling that there are questions that are not allowed or are not appropriate… the freedom to talk and discuss, the lesson that there is no professional that is higher or lower in our team …  He taught me to be appreciative and to forgive, to teach and to serve others, to help and ask for help whenever needed, that there is nothing to be ashamed of when not knowing a thing – even offering his own access to very valuable literature sources or publications. I had a great mentor, who taught me to be a sensitive and passionate mentor myself.”

“My mentor’s main question to me as a professional was again and again: why are you attracted to this part of care, what in your life/personality makes you want to work with dying people? Is that your strength or is it a potential pitfall? Getting aware of background motives has helped me a lot personally, but also in teaching by asking the students, what their motives are in order to make them aware of their strengths and weaknesses.”

Thus, considering the essential need for palliative care education, the results of this survey underline the necessity for train-the-trainer programmes (Hauser et al., 2015, Kang et al., 2015, Widger et al., 2016). Equipping teachers with best philosophy, self-help methods and teaching strategies is a part of palliative care education that needs further attention, investigation and development. 

Cicely Saunders, Ricardo Tavares, Peter Nieland, Roni Sabar, Peter Fässler-Weibel, Philip Larkin, Rod MacLeod, Robert Twycross, Eduardo Bruera, Enric Benito, all clinicians, colleagues, educators and mentors, who let their students feel the power of their visions towards more human and comprehensive care – thank you for doing such inspiring work!

If your peer, mentor, or teacher was not mentioned, tag and share!

References

HAUSER, J.M., PREODOR, M., ROMAN, E., JARVIS, D. M. & EMANUEL, L. 2015. The Evolution and Dissemination of the Education in Palliative and End-of-Life Care Program. J Palliat Med, 18, 765-70.

KANG, J., YANG, E. B., CHANG, Y. J., CHOI, J. Y., JHO, H. J., KOH, S. J., KIM, W. C., CHOI, E. S., KIM, Y. & PARK, S. M. 2015. Evaluation of the National Train-the-Trainer Program for Hospice and Palliative Care in Korea. Asian Pac J Cancer Prev, 16, 501-6.

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