A personal situation…

Hilde M Buiting, PhD, started her career as a researcher in 2005 and now works in a field that crosses palliative care and oncology. In 2015, she started a second study, medicine. In a poem that is part of this post, Hilde describes a conversation she held with her neighbour.

Dr Hilde Buiting.

Every healthcare professional has their personal history which, to a certain extent, explains how they treat and approach their patients, which medical disciplines they eventually choose, their passion in their work, and how they experience their disease when they will be confronted with a disease themselves. For patients, their life story determines, up to a point, how they will eventually experience and approach their disease too.

Although such facts cannot be neglected in evidence-based medicine it does show how delicate the process of a disease experience can be, and how the interaction with doctors and patients can influence this process to a great extent. For me, this is what makes medicine such a beautiful discipline; it shows the hidden but, at the same time, the present dimension of humanity.

Unfortunately, in actual medical practice, time pressure can be an obstacle for enduring conversations; this is also acknowledged by many healthcare professionals. In private, personal situations, time pressure is often not, or less of an issue. Obviously, this also holds for healthcare professionals themselves.

Previous studies have shown that such personal experiences may impact their approach towards subsequent patients they take care of. I am a medical scholar, but I have spoken to many patients during my research in the past 15 years. Yet, when my neighbour told me he was diagnosed with some form of metastatic cancer, and when I noticed how he approached this diagnosis, things changed to a certain extent. I was somewhat surprised how he, someone who was always extremely assertive, changed into a rather passive patient preferring a paternalistic approach to his treatment. Although he reported that he had accepted his diagnosis, I at the same observed some form of helplessness and less autonomy than before. I am not completely sure whether I was right or not. I do not want to know this anymore. I simply would like to describe what I noticed in a poem.

This conversation, in hindsight, appeared to be the last time I spoke to my neighbour before he died.

A personal situation

Gently, or
Carefully, may be better now
Moving, feet-by-feet

Towards the window, shoving a couple of tiny sculptures aside,
As always;
Opening it

Glaring at me,
Not as always;
But, exhausted

I miss some playfulness in his stabbing, wise, green eyes,
Deeply fallen back, wrinkly and darkly surrounded

Gently, or
Carefully may be better now

Illuminating about his metastases, the vertebra
Talking about this seems already hurting
Seeing this, he admitting it, making it even more excruciating

Almost politely, he resembles now,
Thanking me for visiting

This is a severely ill cancer patient,
Not one of my oldest neighbours anymore
Always using the quote
‘Dearest, each day needs to be celebrated’

He did not

Even now trying to make tiny jokes,
Through which painful situations disappear instantly
Being happy to be at home again, and
Realizing that death is nearing

Walking away from this memorable window, and
Realizing that personal situations

Keeping in mind the wise lesson
This man taught me, which is
The art
To focus

For which
I am



Posted in PATIENT & FAMILY CARE, The Arts in palliative care | Tagged , | Leave a comment

How information specialists/documentalists support the patient-carer relationship

Cliquez ici pour la version en français

Caroline Tête, is an information specialist/documentalist at the Centre national des soins palliatifs et de la fin de vie (National Centre for Palliative and End-of-Life Care) in Paris, created by the French Ministry of Solidarity and Health in 2016 to promote access to rights and participate in improving the end of life in France, in particular by encouraging dialogue between citizens and health professionals. Here, Caroline describes the ways in which palliative care information specialists/documentalists and healthcare professionals work together, and invites others in the field to get in touch and collaborate…

Caroline Tête.

In France, information specialists/documentalists specialising in palliative care collaborate with healthcare teams and individuals, sometimes within the hospital itself. Generally, healthcare professionals are familiar with the work of information specialists/documentalists. They frequently refer to them for help with bibliographic research, or request articles and methodological support, etc. However, they are often unaware that the information specialist/documentalist can be a potential partner, just like the pharmacist or art therapist.

Working with an information specialist/documentalist can benefit the patient

Care teams are required to provide patients with information. However, information about palliative care and patients’ rights is liable to change according to legislation or guidelines. In response to requests from healthcare professionals, information specialists/documentalists search a wide range of complex databases for up-to-date official documents, as well as reliable summaries or arguments, enabling healthcare professionals to provide patients with current, authenticated information. This dual expertise, thus, ensures quality information is communicated to patients at the end of life.

Similarly, when patients search for information about their health and illness, on their own initiative, conflictual situations can occur when they present healthcare professionals with the information they believe to be accurate. In these situations, an information specialist/documentalist can easily identify and verify the information the patient has found on the Internet by locating the article referred to in the media, providing a copy to both the patient and doctor, so they can review the information and its relevance together. In this way, it is possible for discussions based on verified information to reinforce the existing relationship between patient and healthcare professional.

A collaboration that also benefits healthcare professionals

Information specialists/documentalists provide healthcare professionals with the best available data enabling them to find answers to clinical questions using evidence-based practice. In addition, they can provide healthcare professionals with information that is not available on the Internet or suggest sources of information that have not occurred to them, or of which they are unaware.

The information specialist’s technical and bibliographic skills combined with the care teams’ expertise benefits everyone. Patients are assured of reliable, quality information, carers establish a relationship of trust with the patient, whilst avoiding time wasted on complex documentary searches, and information specialists grow their skills and proficiency through close involvement in healthcare practice.

Calling all information specialists/documentalists/librarians across the world – let’s collaborate and innovate!

Here at Respal’dOc, the French palliative and end-of-life care documentation network, we’re interested to know more about the way information specialists and healthcare professionals in palliative care teams in other countries work together. Do you, for instance, get involved in setting up therapeutic reading groups? Are you involved in helping young people at the end of life with their homework? Do you visit the wards and outpatient areas with a laptop to offer doctors and nurses help with information needs? Are there volunteers working with you? We’re interested to know something about the sort of activities and services you offer your care teams and their patients in all palliative care settings. Whether you are working in a specialist information or resource centre, a hospital or hospice-based specialist library, please get in touch with us. We’re looking forward to hearing from you: respaldocdocumentation@gmail.com ; c.tete@lafocss.org



Contribution des professionnels de l’information dans la relation patient-soignant

Caroline Tête, est documentaliste au Centre national des soins palliatifs et de la fin de vie à Paris (France). Cette structure a été créée par le ministère des Solidarités et de la Santé en 2016 pour promouvoir l’accès aux droits relatifs à la fin de vie et pour participer à l’amélioration de la qualité de fin de vie en France, en particulier en encourageant le dialogue entre le grand public et les professionnels de santé. Dans cet article, Caroline décrit comment les professionnels de l’information et les soignants peuvent travailler ensemble, et invite les professionnels de l’information travaillant dans le champ des soins palliatifs et de la fin de vie à prendre contact et collaborer…

Caroline Tête.

En France, les centres de documentation spécialisés en soins palliatifs travaillent en collaboration avec les équipes soignantes, parfois au sein même de l’hôpital. Généralement, les soignants connaissent le travail des professionnels de l’information. Ils s’adressent souvent à eux pour les aider dans leurs recherches bibliographiques, ou pour leur fournir la copie d’un article ou encore pour obtenir un conseil méthodologique, etc. Les soignants ignorent en revanche que le professionnel de l’information peut être un allié potentiel, au même titre que le pharmacien ou l’art-thérapeute.

Travailler avec un professionnel de l’information peut bénéficier au patient

Les équipes soignantes ont une obligation d’information auprès des patients. Or, cette information relative aux soins palliatifs et aux droits des patients change en fonction des recommandations et des lois. En réponse aux demandes des soignants, les professionnels de l’information cherchent, dans des bases de données complexes, les documents officiels à jour ainsi que des synthèses ou argumentaires fiables, permettant aux soignants de donner l’information la plus actuelle aux patients. Cette double expertise permet ainsi de communiquer une information de qualité aux patients en fin de vie.

De même, les patients sont proactifs dans la recherche d’informations concernant leur santé et leur maladie. Cela peut parfois entraîner des situations conflictuelles lorsque les patients présentent des informations qu’ils pensent vraies aux soignants. Dans ces situations, le professionnel de l’information peut aisément identifier et authentifier l’information que le patient a trouvé sur Internet, en retrouvant, par exemple, l’article cité dans un article de presse et en en fournissant la copie tant au patient qu’au médecin afin qu’ils revoient ensemble les informations trouvées et leur pertinence. Ainsi, les discussions peuvent être basées sur des informations vérifiées ; ce qui peut renforcer la relation soignant/soigné déjà en place.

Une collaboration qui profite aussi aux soignants

Les professionnels de l’information fournissent aux soignants les meilleures données disponibles pour répondre à leurs questions cliniques en utilisant l’evidence-based practice. De plus, ils sont capables de mettre à disposition des soignants des informations non disponibles sur Internet ou de proposer des sources d’informations auxquelles les soignants n’ont pas pensé ou qu’ils ne connaissent pas.

L’alliance des compétences techniques et bibliographiques des professionnels de l’information au savoir-faire des équipes soignantes bénéfice à tous. Les patients ont l’assurance d’une information fiable et de qualité, les soignants instaurent une relation de confiance avec le patient sans perdre le temps d’une recherche documentaire parfois complexe et les professionnels de l’information enrichissent leurs compétences et leur expertise en étant au cœur de la pratique soignante.

Appel à tous les professionnels de l’information, documentalistes et bibliothécaires du monde : Collaborons et innovons !

Au sein de Respal’dOc, réseau français de documentation en soins palliatifs et fin de vie, nous souhaitons comprendre quels sont les liens tissés entre les professionnels de l’information et les soignants dans les équipes de soins palliatifs à l’étranger. A titre d’exemples, prenez-vous part à la mise en place de clubs de lecture thérapeutique ? Participez-vous à l’aide aux devoirs pour les jeunes en fin de vie qui en ont besoin ? Parcourez-vous l’hôpital, équipés d’ordinateurs portables, pour offrir de l’aide aux médecins et infirmiers qui ont besoin d’informations ? Y a-t-il des bénévoles qui travaillent avec vous ? Nous sommes curieux de connaître les activités et les services que vous offrez aux soignants et aux patients dans tous les lieux de soins palliatifs, quels qu’ils soient. Que vous travaillez dans un centre de ressources ou d’informations spécialisé, dans une bibliothèque hospitalière ou spécialisée en soins palliatifs, contactez-nous s’il vous plaît. Nous sommes impatients de vous lire : respaldocdocumentation@gmail.com ; c.tete@lafocss.org




Sustaining Palliative Care Services​ in the Covid-19 Pandemic: Outcomes from the Leadership Day 2021

In October 2021, the European Palliative Care Academy (EUPCA) and the Leadership Development Initiative (LDI) held their second Leadership Day as part of the 17th World Congress of the European Association for Palliative Care (EAPC). Chaired by Professor Frank Ferris (LDI) and Dr Gerrit Frerich (EUPCA), the session explored the importance of trust in times of uncertainty. Gerrit Frerich explains.

Left to right: Co-chairs: Professor Frank Ferris (Leadership Development Initiative) and Dr Gerrit Frerich (EUPCA); Professor Charles F von Gunten (keynote speaker).

The Corona pandemic has challenged healthcare providers all over the world and still does. But following Winston Churchill’s advice, “Never let a good crisis go to waste,” eight alumni of the EUPCA and LDI courses met for an experiential exchange on ‘Sustaining Palliative Care Services​ in the Covid-19 Pandemic’.

Keynote speaker Professor Charles F von Gunten set the tone with ‘Leadership for Sustainability’ by stressing the need for leaders to put themselves in the patient’s situation and to connect with them by showing genuine interest.

Regional and international cooperation

Dr Ladislav Kabelka from the Czech Republic discussed the regional leadership challenge to sustain early integration of palliative care. Preparation is the key; in crisis, you definitely benefit from well-developed systems and established collaborations.

Professor Mark Boughey from Australia pointed out the benefits of improved relationships between organisations, and how leaders can drive forward their work and their team through networking. Because of social distancing rules, Dr Georg Bollig from Denmark shared how he mastered the transition of his ‘Last Aid’ courses to an online format. The new format was highly successful, attracting more young participants than ever before!

Advocacy and pushing forward despite limitations

Rumana Dowla from Bangladesh focused on advocacy skills. Building relationships with stakeholders and educating policymakers and the public were essential. Being the voice for the voiceless, the purpose of advocacy is to ensure that ​no one is left behind.

Dr Farzana Khan from Bangladesh leads a palliative care project for refugees in humanitarian camps. In these camps, 73 per cent of people with chronic diseases do not receive treatment, and more than 90 per cent of caregivers do not have any formal training. Through tireless advocacy, she engaged stakeholders and recruited volunteer trainers to improve the situation massively.

Teamwork, trust and communication   

Dr Zuzana Křemenová from the Czech Republic described hardships during the early stages of the pandemic when the team was not yet well-attuned and faced communication problems. Through building trust, they ultimately managed the high workload and learned to practise self-care and support each other.

Professor Shoba Nair from India shared her experience with their leadership initiative to sustain clinical care. In particular, leadership skills such as collective decision-making and conflict resolution, and also networking and celebrating success, came into play.

Marius Čiurlionis from Lithuania focused on information dissemination. Thanks to regional cooperation and efficiently transferring patients the overburdening of hospitals was avoided. Building trust and sending the right message was essential, he concluded.

View the presentations on the webpage of the EAPC Task Force on Leadership in Palliative Care

These outstanding stories captured the imagination of 60 participants from across the world. You can now view the video presentations on the webpage of the EAPC Task Force on Leadership in Palliative Care.

We thank all the speakers and participants and look forward to the next Leadership Day! Keep tuned via our website (www.eupca.eu) and follow @EAPCvzw.

Links and resources


Posted in 17th EAPC World Congress, Coronavirus and palliative care, EAPC COLLABORATIVE PROJECTS, EAPC Task Forces/Reference Groups, European Palliative Care Academy | Tagged , | Leave a comment

Approaching the end of their lives under blue lights and sirens 

Paramedics and clinicians from Canada, the Czech Republic and the United Kingdom are hosting a free, international online symposium dedicated to emergency medical services and palliative care on 18 January 2022 at 15.00 CET 

Marek Uhlíř, a paramedic at the Prague Emergency Medical Service in the Czech Republic and coordinator of project TIERA (Terminal Illness Early Recognition in Ambulance Settings), explains more and welcomes you to join the symposium.

Marek Uhlíř.

“Ambulance service, emergency line, hello” is a sentence that I say about a hundred times on my average shift. I work as a paramedic at Prague Emergency Medical Service (EMS) metropolitan dispatch centre, which receives an average of 209,000 emergency calls per year, 570 per day, one call every two and a half minutes.

“I am so sorry to call in the middle of the night, but I don’t like the way my mother is responding to me.” The timer on the screen is running while I type to the computer: in this case, I note the address, assess the patient’s level of consciousness (unresponsive) and breathing (rapid, regular, without cyanosis), assign a priority to the call to a 67-year-old female and send the ticket to operational command. The clock shows fifty seconds. My colleague pages the nearest rapid response unit, while I stay online with the caller. The mother has metastatic cancer, has lost 12 kilos of weight over the last two weeks, became sleepy over the last few days and unresponsive in the last hour. I click on the history log, which shows four calls from this patient in recent weeks. “KQZ 116 for dispatch, good morning, on our way,” I overhear from the radio terminal – pager beeping and sirens in the background. The clock shows two minutes, ten seconds. “Has someone in the hospital talked to you about palliative care?” I ask the caller. “What? No, what for?” 

Join the online symposium dedicated to emergency medical services and palliative care on 18 January 2022 at 15.00 CET.

Emergency medical services (EMS) frequently respond to calls involving patients in the advanced stages of incurable diseases. The real challenge is: how to respond to the needs of patients at the end of life, who may require acute management, but might only have limited benefit from transfer to hospital?

In Prague, two years ago, we started looking around, hoping to find someone who could have a ready-to-implement solution. We went through national registers to know how many EMS calls are dispatched to end-of-life patients and looked to the literature to see what makes our patients approach the end of their lives under blue lights and sirens. We found research by Dr Wiese in neighbouring Germany and Georgina Murphy-Jones, who explored paramedic decision making. Georgina and colleagues infuse the palliative into paramedicine in London, seeking to improve quality of care through service development and education for over 3500 EMS clinicians. Dr Surakka explores the participation of paramedics in end-of-life care in Northern Karelia, a remote Finnish region. Dr Carter and her colleagues in Halifax, Canada, break down the silos by adding training and resources for paramedics to provide a palliative approach to care, on-site; this is currently being scaled to other provinces. In Prague, we have been screening all incoming emergency calls since July with Rapid-PCST, a three-item version of a Palliative Care Screening Tool adapted for use at the emergency dispatch centre (results to be published) and we are hosting an international online symposium dedicated to EMS and palliative care in January 2022.

Certainly, there are a lot more of us, paramedics and emergency physicians, out there who ask the same questions and try to add an important layer of extra care for our patients. We strongly believe that a network of emergency practitioners, passionate about both pre-hospital and palliative care, can change the trajectories of hundreds of thousands. Let’s meet!

Join the free, online symposium –  Working Across the Gap: Palliative Care Programmes in Ambulance Settings

Register here for the online symposium, Working Across the Gap: Palliative Care Programmes in Ambulance Settings, to be held on 18 January 2022 (15.00-18.00 CET, 14.00-17.00 GMT). Registration is free of charge. 


The latest in the European Association for Palliative Care (EAPC) webinar series will be presented by the EAPC Task Force on Last Aid and Public Palliative Care Education on Thursday 13 January at 3 pm CET – see blog post here or register here. 








EAPC Task Force on Last Aid and Public Palliative Care: An invitation to a free webinar and latest news

The European Association for Palliative Care (EAPC) will host its latest webinar on Thursday 13 January 2022 (3pm CET) in partnership with the EAPC Task Force on Last Aid and Public Palliative Care Education.

Georg Bollig, Marius Ciurlionis and Boris Knopf, who chair the task force, extend a warm welcome to everyone and provide an update on the work of the group.

Dr Georg Bollig.

The webinar will introduce the topic of Public Palliative Care Education (PPCE) and Last Aid. Most people would prefer to die at home. But this is often not possible because they lack support from relatives, friends, neighbours and communities. Public Palliative Care Education, which aims to educate the public, empower citizens and enhance the public discourse about death and dying, is thus a vital key to achieving community participation.

What is the webinar about?

During the webinar, members of the task force will provide four short presentations:

  • Marius Ciurlionis (Ministry of Health, Lithuania) will talk about Mapping the education needs of family members in Lithuania.
  • Georg Bollig, University of Southern Denmark, Denmark) and Erika Zelko (University of Linz, Austria) will provide an overview of the existing Last Aid research and the work of the Last Aid Research Group (LARGE).
  • Mark Hazelwood (Scottish Partnership for Palliative Care, Scotland) will present End of life Aid Skills for Everyone (EASE).
  • Jamie Woodworth (University of Lund, Sweden) will talk about Developing capacity for caring in civil society through education in “Last Aid”: An attempt at strengthening the social sustainability of care-work at the end of life.

Register here to join us at the Public Palliative Care Education webinar on 13 January at 3pm CET. 

More activities from the EAPC Task Force on Last Aid and Public Palliative Care Education

The coming year promises to be a busy one for members of our task force with their involvement in two major international conferences taking place in October. Erika Zelko and Georg Bollig will lead on the organisation of the 3rd International Last Aid Conference in Maribor, Slovenia, from 28 to 29 October. Marius Ciurlionis, Lotte Blicher Mørk and Georg Bollig will hold a workshop on Public Palliative Care Education during the 23rd International Congress on Palliative Care in Montreal, Canada, from 18 to 21 October.

New members who want to actively participate are welcomed. Please email the EAPC Task Force Chair, Georg Bollig.

Links and upcoming events

The EAPC webinar series is free of charge and open to all health and social care staff, academics, and researchers with an interest in palliative care. On-demand content of previous webinars is also available exclusively for members in the ‘Events’ area of the EAPC website – login with your password to access. Join, or renew your membership here. Members of our national associations can join the EAPC for free here.


Posted in EAPC Task Forces/Reference Groups, EAPC Webinars, public health palliative care | Tagged , | Leave a comment