Nurses behind the scenes: The palliative care response to COVID-19 in Paris


Cliquez ici pour la version en français.

CONTINUING OUR SERIES TO CELEBRATE THE INTERNATIONAL YEAR OF THE NURSE AND MIDWIFE 2020 AND THE BENEFITS THAT NURSING AND MIDWIFERY BRING TO THE HEALTH OF THE GLOBAL POPULATION.

To mark this world first, the European Association for Palliative Care (EAPC) is publishing a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce. Today, we are delighted to welcome as our guest writer, Anja Oustalet, a Nurse Manager in a pain and palliative care department in a public hospital in Paris, France.


Anja Oustalet.

I would like to highlight the importance and dedication of nurses during the COVID-19 crisis, and illustrate how they used their expertise in education, clinical practice and ethics. Although based on my experience, it seems similar to many in the Paris region, one of the hardest hit in France.

Specialised in pain and palliative care with a Master of Clinical Nursing Sciences, I am currently the Nurse Manager in a pain and palliative care department in a public hospital in the suburbs of Paris. When invited to write this blog post, I was a palliative care clinical nurse specialist, one of two nurses, in a mobile palliative care team composed of two doctors, a part-time psychologist and secretary, in a Parisian university hospital, with a large Accident and Emergency Unit (172,466 attendances in 2017).

Before the pandemic hit Paris in March, my nurse colleague and I focused on learning about Covid-19. Our main concerns were learning as much as we could about the disease trajectory, especially critical moments, and an appropriate response to symptoms, and the implications for nurses. Concomitantly, our team focused on ethical reflection. Based on national guidelines, both ethical 1 and clinical, 2 we tailored tools to fit the patient-base of our hospital.

My nurse colleague and I created a short evidence-based training module for nurses, which we dispensed in COVID-19 units as they were set up throughout the hospital, around 240 beds at the peak of the pandemic. We aimed to enhance clinical knowledge and skills on symptom evaluation and management. Our biggest challenge was training nurses: often anxious, many usually working in psychiatry, outpatient and surgical settings. Fortunately, our interventions were met with positive feedback. We also established and maintained close bonds with the infection control and mortuary nurses. This provided mutual support and facilitated relaying frequently updated guidelines and regulations to the COVID units and patients’ families. Assisting and guiding the newly formed, and inexperienced in palliative care, COVID teams with appropriate treatment and decisions was a big part of our role, always keeping in mind Patrick Verspieren’s (a French bioethicist), questioning on the benefit risk ratio of all forms of treatment.

Anja Oustalet with colleague, Dr Duval, of the mobile palliative care team.

During the peak, splitting into nurse and doctor pairs, we systematically visited all the new COVID units once, often twice, a day and we extended our working hours to cover the weekends. The constitution of new teams was challenging, nurses having to familiarise themselves with their new colleagues, the ward layout, and a new disease; as nurses we tried to support them daily. Additional strains described were the lack of PPE (Personal Protective Equipment), restricted family visiting and, fuelled by the rapid respiratory distress, fear of the disease. In spite of all the challenges, at the end of the spring wave I observed great team cohesion, both horizontally and vertically.

Looking back, I feel palliative care nurses could have been given a more prominent role, alongside doctors, to allow for more interdisciplinary reflection and decision-making. I hope we will learn from this experience and make adjustments to our, still quite hierarchical, system. Having said that, I am proud of the way nurses adapted rapidly and pulled together to give the best care possible and helped to support families and each other. This makes me proud to be a nurse and to be part of the bridge of healthcare.3 


Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020.View the series here and join us again in  December.  

References

  1. https://www.coreb.infectiologie.com/UserFiles/File/procedures/rpmo-ethique-rea-covid-19-vf-24-corr26-mar20-2.pdf

2. Société Française d’Accompagnement et de Soins Palliatifs: http://www.sfap.org/document/detresses-respiratoires-asphysiques-et-dyspnee http://www.sfap.org/document/pratiques-sedatives

3. Nurses are the bridge of healthcare: Celebrating the International Year of the Nurse and Midwife 2020 #nurses2020 #midwives2020 by Julie Ling and Piret Paal.

Links and resources

We are currently experiencing some technical problems on the EAPC website (www.eapcnet.eu) and are working on a solution. We apologise for this inconvenience. If you need urgent help, please email us at info@eapcnet.eu Please keep an eye on our social media and this blog for updates.

Dans les coulisses, des infirmières des soins palliatifs s’activent face à la Covid-19 à Paris

SUITE DE NOTRE SÉRIE SALUANT L’ANNÉE INTERNATIONALE DES SAGES-FEMMES ET DU PERSONNEL INFIRMIER  ET LA CONTRIBUTION DE CES MÉTIERS AU SERVICE DE LA SANTÉ DE LA POPULATION MONDIALE.

À l’occasion de cette première mondiale, l’Association européenne de soins palliatifs (EAPC) publie une série spéciale de 12 articles mensuels mettant en avant le travail des infirmières des soins palliatifs et souligne plusieurs aspects liés à ce métier dont le rôle est essentiel. Aujourd’hui, nous sommes heureux d’accueillir notre invitée et auteur, Anja Oustalet, cadre de santé dans un service de douleurs et soins palliatifs d’un hôpital public près de Paris en France.


Anja Oustalet.

Je voudrais mettre en lumière l’importance du rôle joué par les infirmières et le dévouement dont elles ont fait preuve pendant la crise du COVID-19 et illustrer comment elles ont su mettre à profit leurs compétences en matière de formation, pratique clinique et éthique. Même si je parle de ma propre expérience, je sais qu’un grand nombre d’infirmières ont vécu une expérience similaire en région parisienne, l’une des plus touchées de France.

Spécialisée en soins palliatifs et titulaire d’un Master en Sciences Cliniques en Soins Infirmiers, je suis actuellement cadre de santé dans un service de douleurs et soins palliatifs d’un hôpital public de la banlieue parisienne. Lorsque j’ai été invitée à rédiger ce billet de blog, je travaillais comme spécialiste clinique en soins palliatifs, avec une collègue infirmière, dans une équipe mobile de soins palliatifs composée de deux médecins, d’une psychologue et d’une secrétaire, toutes deux à temps partiel, au sein d’un centre hospitalier universitaire parisien équipé d’un important service d’urgences (172 466 passages en 2017).

Avant que la pandémie ne touche Paris en mars dernier, l’objectif de ma collègue infirmière et moi-même était surtout d’approfondir nos connaissances sur la Covid-19. Nous avions à cœur d’en savoir le plus possible sur l’évolution de la maladie, en particulier les phases critiques, sur les traitements adaptés aux symptômes ainsi que les conséquences pour les infirmières.Parallèlement, notre équipe menait une réflexion éthique. À partir des directives nationales éthiques1et cliniques,2nous avons mis en place des outils adaptés aux profils des patients de notre hôpital.

Ma collègue infirmière et moi-même avons créé pour les infirmières un court module de formation fondé sur les données probantes que nous avons dispensé dans les unités COVID-19 mises en place dans l’hôpital, soit environ 240 lits au pic de la pandémie. Notre objectif était de renforcer les connaissances et compétences cliniques lors de l’évaluation et de la gestion des symptômes. Notre plus grand défi à relever a été la formation des infirmières : elles étaient souvent angoissées, une bonne partie d’entre elles travaillant habituellement en milieu psychiatrique, ambulatoire ou chirurgical. Heureusement, les retours sur nos interventions ont été positifs. Nous avons également établi et entretenu des liens étroits avec les infirmières de l’équipe d’hygiène et celle de la chambre mortuaire. Cette approche a permis un soutien mutuel et a facilité la transmission, aux unités COVID et aux familles des patients, des directives et règlementations mises à jour fréquemment. Notre rôle a consisté majoritairement à aider et guider les équipes COVID, tout juste constituées et inexpérimentées en matière de soins palliatifs, sur les traitements appropriés et les décisions à prendre, en gardant toujours à l’esprit le questionnement de Patrick Verspieren (un bioéthicien français)sur le rapport bénéfice-risque de toutes les formes de traitement.

Anja Oustalet avec sa collègue, Dr Duval, de l’équipe mobile de soins palliatifs.

Lors du pic, nous avons constitué des binômes infirmière-médecin et sommes allés systématiquement dans toutes les nouvelles unités COVID une fois par jour, et souvent deux fois, et nous avons augmenté nos heures de travail pour assurer les weekends. La constitution de nouvelles équipes a été un défi à relever. Les infirmières ont dû se familiariser avec leurs nouveaux collègues, leur nouvel environnement de travail et une nouvelle maladie ; en tant qu’infirmières, nous avons essayé de les soutenir quotidiennement. Parmi les autres contraintes décrites figurent le manque d’EPI (Équipement de Protection Individuelle), les restrictions de visites des familles, et la peur de la maladie alimentée par le risque de détresse respiratoire aiguë. Malgré tous ces défis, à la fin de la première vague du printemps dernier, j’ai noté une grande cohésion des équipes, aussi bien sur le plan horizontal que vertical.

Avec du recul, je me dis que les infirmières en soins palliatifs auraient pu jouer un rôle encore plus important aux côtés des médecins pour permettre plus d’interdisciplinarité dans les réflexions et prises de décision. J’espère que nous tirerons des enseignements de cette expérience et que nous adapterons notre système encore assez hiérarchique. Ceci dit, je suis fière de voir la rapidité avec laquelle les infirmières se sont adaptées, comment elles se sont serré les coudes pour offrir la meilleure qualité de soins possible, comment elles se sont soutenues mutuellement et ont apporté leur soutien aux familles. Je suis fière d’être infirmière et d’être l’un des maillons essentiels de la chaîne des soins.3


Célébrez l’Année internationale des sages-femmes et du personnel infirmier 2020 sur le blog de l’EAPC # nurses2020 # midwives2020. Vous trouverez la série ici et rejoignez-nous à nouveau en decembre.

Références

  1. https://www.coreb.infectiologie.com/UserFiles/File/procedures/rpmo-ethique-rea-covid-19-vf-24-corr26-mar20-2.pdf
  2. Société Française d’Accompagnement et de Soins Palliatifs: http://www.sfap.org/document/detresses-respiratoires-asphysiques-et-dyspnee http://www.sfap.org/document/pratiques-sedatives.
  3. Nurses are the bridge of healthcare: Celebrating the International Year of the Nurse and Midwife 2020 #nurses2020 #midwives2020 Julie Ling and Piret Paal.

Liens et ressources

Remerciements
Nous adressons nos sincères remerciements à la traductrice en France, Valérie Lesur. 

Posted in ADVOCACY & POLICY, Coronavirus and palliative care, En langue française, International Year of Nurse & Midwife 2020, Nursing, POSTS IN OTHER LANGUAGES | Tagged , | Leave a comment

EAPC World Research Congress: From Palermo to Online

Julie Ling, CEO, and Christoph Ostgathe, President, European Association for Palliative Care, explain what happened on the three days in October that have become part of EAPC history.


Julie Ling and Christoph Ostgathe wearing the #EAPC2020 African masks.

This year is a year like no other. Our 2020 congress due to take place in Sicily in May instead became the first-ever EAPC World Research Congress Online. A changed world in the depths of a global pandemic resulted in travel restrictions, health risks and limited gatherings – and 1,112 delegates from 69 countries settling down at their desks, kitchen tables and in front of their computers, tablets and phones became a part of EAPC history.

One of our initial concerns was whether the spark would fly in the digital space. Participants could view all the lectures and posters online three weeks before the start of the congress. The days online were intended above all for exchange, discussion and interaction. The opening ceremony, with piano music from Palermo and a trenchant lecture by Professor Catherine Walshe marking the ‘International Year of the Nurse and Midwife’, set the scene for the coming hours and days.

COVID-19 and the Palliative Care Response

A call for late-breaking abstracts yielded 59 high-quality submissions. The highest scoring abstracts formed three sessions dedicated to COVID-19 and the palliative care response. These were anchored by two excellent plenary presentations from Professor Irene Higginson and Professor Luca Riva who impressively demonstrated the heterogeneity of the integration of palliative care into the health systems’ response to the pandemic. Apart from the quality of the contributions, we were impressed by the speed with which the international research community, despite the great challenge, has begun to generate evidence for our patients in the context of the COVID-19 pandemic.

So much of the congress was different but some things were the same. The scientific committee, under the leadership of Professors Marie Fallon and Lieve Van den Block supported by Professor Augusto Caraceni, put together a really diverse and interesting programme. The best palliative care researchers in the world presented their findings, identified challenges and discussed and debated contemporary issues in palliative care. As always, a significant proportion of the programme was developed from submitted abstracts, which demonstrated the vitality and commitment of those working, or with an interest, in palliative care research and their role in producing evidence to support service development and best practice. The traditional EAPC congress bags were made by Kawempe home care team in Uganda but this year we also bought their African print face masks. Those accessing the congress platform the most will be awarded prizes including these great gifts.

So, what was different? 

The new format of the online congress allowed delegates to ask questions to the speakers and to participate in the discussion in a very focused way, both beforehand and through the chat function. Every part of the congress was recorded and is available on demand until 31 January 2021, enabling registered participants to view all of the presentations. A month on from the live and interactive sessions, we have data that suggests that many participants are taking advantage of this and continue to access the content. Big winners were the EAPC Groups (task forces and reference groups) who organised open meetings during the congress. During in-person congresses, the audience for these open meetings can be small. During the online congress audience numbers soared; speakers and chairs of these sessions were both surprised and delighted in the interest shown.

Evaluating #EAPC2020

Delegates had the chance to give their feedback, good and bad, via the congress evaluation. We received 351 responses. When asked, 317:351 felt that the congress scientific content met their educational needs (as shown in the first of the two charts below).

Comments included:

“It went technically perfect but more than that: it had a strange intensity, the content was really interesting and I felt often the ‘community’ feeling of a normal congress.”

“Really enjoyed the virtual conference – some key learning, really interesting topics and good for the environment!”

“#EAPC2020 first time online, but for us an extraordinary experience with three days of inspiring and motivating presentations, talks and discussions…see you in 2021.”

“I really felt the EAPC vibe these days despite the online format. And I really like that we had so much time for Q & A.”

“I would like to thank the organisers of the Children’s Palliative Care Seminar at the 11th EAPC World Research Congress Online for a highly successful and informative meeting. To my mind the structure of the sessions was excellent and a template for future online meetings.”

 “Exploring New Dimensions” at #EAPC2021

The 17th World Congress of the EAPC will also take place online from 6 to 8 October 2021 with the theme “Exploring new Dimensions”. Meanwhile, the EAPC board are working hard to make it possible to hold an in-person congress again as soon as it is safe to do so. But one thing is already clear: future EAPC congresses will be different from those in the past, with a need to combine the best of both formats into one event.

Please submit your abstracts from 1 January 2021 and we will look forward to seeing you at our online congress in October 2021.


How to access 11th EAPC World Research Congress Online resources

17th EAPC World Congress Online 2021 

  • Call for Abstracts opens 1 January 2021 until 28 February 2021.
  • Registration opens 1 December 2020.

Follow us and keep up to date with EAPC news…

We are currently experiencing some technical problems on the EAPC website (www.eapcnet.eu) and are working on a solution. We apologise for this temporary inconvenience. If you need urgent help, please email us at info@eapcnet.eu

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Globalizing Palliative Care

How is palliative care implemented and practised in diverse cultural contexts? A new ERC-funded anthropological research project explores how palliative care changes end-of-life care in Brazil, India, and Indonesia – and what these local experiences mean to global models for palliative care. Dr Annemarie Samuels, Assistant Professor of Cultural Anthropology and Development Sociology, Leiden University, and Dr Natashe Lemos Dekker, Postdoctoral Researcher, Institute of Cultural Anthropology and Development Sociology, Leiden University, The Netherlands, explain more and welcome your input.

Dr Annmarie Samuels (left) and Dr Natashe Lemos Dekker.

Palliative care is globalizing. As the recently launched second edition of the Global Atlas of Palliative Care shows, an increasing number of countries around the world are developing palliative care services, and there is a growing variety of models of palliative care implementation and practice. How do such models travel? How are professional guidelines and practices adjusted to diverse cultural and institutional contexts? And how do professionals, patients, and families incorporate the possibilities offered by palliative care into their existing modes of non-institutional end-of-life care?

The central objective of our project is to gain insight in what is universally shared and what is culturally specific in end-of-life care, by analyzing how local end-of-life care practices impact palliative care and how globally circulating discourses of palliative care are transforming local notions of death and dying. We broadly consider “end-of-life care” to involve all institutional and non-institutional practices of care in the last phase of life, and “palliative care” to be a more specific professional model and practice of end-of-life caregiving. We build on the idea that while patients, families and care-workers travel, so do ideologies and models of health care, such as palliative care. As palliative care discourses and policies are formed and articulated in international organisations, they travel to countries with emerging palliative care provisions where they get translated and transformed in relation to already existing locally specific practices of end-of-life care.

Our social scientific research project explores globalizing palliative care through a comparison of ethnographic case studies in Brazil (São Paulo), India (Delhi) and Indonesia (Jakarta). These countries all have a growing infrastructure for palliative care, but these services have not yet been integrated in the mainstream healthcare provision. Therefore, these countries provide excellent contexts to study the institutional embedding of international discourses and policies of palliative care in relation to informal end-of-life care provision. Brazil has an active palliative care specialist network, and services are as yet mostly concentrated in urban centres and hospitals. In India, the state of Kerala has been very successful in implementing palliative care, while in other states the services are more fragmented. In Indonesia, palliative care is mostly developed in several large hospitals. The researchers in the project will ethnographically follow patients and caregivers across institutional and non-institutional settings. While policy will be studied at the national level, within each country the researchers will select specific hospitals and communities as case studies. They will also compare palliative care practices and policies between the three countries and examine how these relate to global health policies and discourses on palliative care.

The great advantage of qualitative methods here is that they allow us to interact with and observe a number of patients and families over time in their naturally occurring everyday practices of care, including in home and hospital settings. We hope to see when, where and how they cross boundaries between palliative care and other (non-institutional) forms of care, including family care and religious and traditional healing. At the policy level, our qualitative interviews aim to give a rich picture of the institutional challenges, opportunities and innovations in each country.

As anthropologists have long experienced in their research, translation goes both ways. Ultimately, we therefore aim to contribute to analyzing the potentialities of global palliative care models. How do we, in Europe, engage with models developed elsewhere? And how can a global palliative care benefit from the cultural variety in professionalization of end-of-life care and embrace plurality? (1)

As our research project develops, we very much welcome your input, questions and suggestions! Please contact us via the links below.

Reference
1. Zaman, S., H. Inbadas, H. Whitelaw, and D. Clark. 2017. Common or Multiple Futures for End of Life Care around the World? Ideas from the ‘Waiting Room of History.’ Social Science and Medicine 172: 72-79.


Links and resources

Acknowledgement
The Globalizing Palliative Care research project is funded by the European Research Council under the Horizon 2020 Research and Innovation Programme (Grant Agreement no. 851437)

Posted in ADVOCACY & POLICY, NATIONAL & INTERNATIONAL REPORTS, RESEARCH | Tagged | 1 Comment

EAPC Primary Care Reference Group Open Meeting goes live at #EAPC2020

Scott Murray and Sébastien Moine, Co-chairs, EAPC Primary Care Reference Group, report on their group’s virtual meeting held at the 11th World Research Congress Online of the European Association for Palliative Care.


Education for palliative care starting at an early age at the EAPC Primary Palliative Care very open meeting.

We had a very lively and informative meeting at the recent EAPC World Research Congress Online attended by enthusiasts all seeking to advance palliative care in primary care in their own countries. The youngest participant is pictured here, zooming in from Taiwan with his dad, Dr Ping-Jen Chen, a consultant geriatrician and palliative medicine specialist at Kaohsiung Medical University Hospital, Taiwan.

Cathy Payne was so helpful in helping to set the whole meeting up – our thanks to her!

About 40 countries were represented from Europe and Africa, America, Asia and India.

Several countries reported good progress with the new Primary Palliative Care toolkit. We showed our one-minute video  and graphic to explain it to national leaders so participants could see how it might be used in their own countries. Greece was already in the midst of translating the toolkit for local use, and we welcome people to volunteer to do likewise – a template is available – just request it from us at the links below.

 

 

 

Launch of our latest video – Palliative care and multi-morbidity

We then had the much-awaited premiere of the group’s new video Palliative care and multi-morbidity: a 4-step approach which is also now free to all for teaching about early palliative care and care planning in multimorbidity. It shows that understanding the underlying illness trajectory really does guide care planning for the immediate future, as well as later when a person may lose capacity. Do please download and use it for teaching and explaining. This updates our previous video ‘Palliative care from diagnosis to death – YouTube, as most people now die with at least two conditions. That video has been viewed over 30k times!

Other presentations from Nepal, Australia, Dubai, Denmark and Malaysia revealed an ‘epidemic’ of primary palliative care clinically, and in research and teaching worldwide. Participants from Ghana, Sri Lanka and the UK were also active in the chat.

Previously, our group has compared dying to having a final dance – the Danse Macabre – and produced Strictly Come Dying. But if you want to speak to golfers about death and dying then our short video, Let’s go golfing’, shows how dying might be like playing your final hole at golf! We made it for the congress ‘Science Slam’, and it was narrowly squeezed into second place by a brilliantly illustrated presentation by Berend Feddersen on ‘Emotions at the end of life’.

If you registered for the 11th EAPC World Research Congress Online, you can view both these videos here until 31 January 2021. Just login with your email address and password.

Getting help with advocacy in your country…

Do contact us if you want help with local advocacy in your country. Recently, in Italy, the group supported two very strategic national meetings on Zoom, helping our local members there affirm the strong need to develop primary palliative care early for all patients, including those with COVID-19.

Geoff Mitchell, one of our members from Australia who gave a plenary lecture at the congress, recently penned an editorial in the BMJ S&PC with many memorable phrases that you might find useful in advocacy:

  • It is essential that dying is seen as a normal, individual and a four-dimensional process – the physical, psychological, social and spiritual.

  • It makes sense to ensure a system with universal availability (primary care) is tasked with supporting the universal experience of dying.

  • With a small change in emphasis and by embracing a palliative approach, primary care practitioners can realise they are actually providing palliative care already.

  • WHO recently affirmed that palliative care is a core part of primary care provision.

Join us …

If you are passionate about improving palliative care in the community in your country, please email our co-ordinator Erica Ring to register as a member of the wider group.

We want to welcome more members, especially nurses, allied health professionals, geriatricians, social workers and, of course, researchers and patients. We are also looking for some new people to get more involved in our organising committee.

Very best wishes, and stay safe,
Scott Murray and Sébastien Moine.


Links and resources

Do contact us by email and follow us on Twitter:

 

Posted in 11th EAPC World Research Congress Online, EAPC Task Forces/Reference Groups, EAPC World Research Congresses | Tagged , | Leave a comment

Hospice and palliative care volunteering in Finland: How we can further develop a precious asset

NEW SERIES: CELEBRATING THE IMPORTANT ROLE OF VOLUNTEERS IN PALLIATIVE CARE… 

Since 1988, volunteers have played a crucial role in hospice and palliative care in Finland. But now, a more systematic approach to develop volunteer training and structures of volunteering in hospice and palliative care is about to start. Our guest writers, Leena PelttariRitva Pihlaja and Mirja Sisko Anttonen, on behalf of the European Association for Palliative Care (EAPC) Task Force on Volunteering, explain more.


Left to right: Ritva Pihlaja, Mirja Sisko Anttonen and Leena Pelttari.

The two first private, not-for-profit, hospices in Finland, Terhokoti in Helsinki and Pirkanmaan Hoitokoti in Tampere, were established in 1988. From the very beginning, volunteers have had an important role in them both, influencing positively the quality of life of seriously ill and dying people and those close to them.

One of the first volunteers in hospice and palliative care in Finland was Seppo Laurell, a former sea captain. During his visits to Britain he had heard about St Christopher’s Hospice in south-east London and the philosophy of hospice care. He participated in the first volunteer training course organised in Finland in 1986, even before the hospice Terhokoti was established.

During these years Seppo Laurell has noticed a huge change in hospice and palliative care, which has an effect on the work of the volunteers as well. He says,

“In the beginning of my career as a volunteer the people were in a much better condition as they came to Terhokoti. We had time to get to know each other. Now there is mostly very little time left.”

Seppo Laurell, a former sea captain who has volunteered at Terhokoti Hospice for more than 30 years. 

Seppo Laurell is still, at the age of 82, continuing as a volunteer. Before the COVID-19 pandemic started, Seppo’s pioneer work as a volunteer has covered 2,336 visits at the hospice or at a patient’s home during more than 30 years.

Today, there are almost 20 hospital wards or hospices providing specialist hospice and palliative care in Finland. Three of them are privately run, and the rest are run by the public sector. As a Nordic welfare state, the role of the public sector is important and substantial in Finland. 

 

Development of hospice and palliative care in Finland

The central government has increased its interest in palliative care with recommendations to improve the quality and provision of care, as well as education and training. This has gradually led to better access to high-quality palliative care for terminally ill people.

But to offer good quality of life at the end of life is often much more than just offering good medical treatment and nursing. A dying person, and those close to him or her, have psychological, social and existential needs and questions. They often need a person to talk to, a person in no hurry, a person just to sit by the bed. Volunteering brings opportunities for peace and serenity, presence, outdoor activities and recreation to the patient and family – whatever the help or support they want and need.

In Finland, privately run hospices, the Evangelical Lutheran Church and non-governmental organisations, such as cancer organisations, have been organising this kind of voluntary work. However, in hospitals in the public sector there is only very little experience of volunteering and collaboration between professionals and volunteers. It is a big challenge to develop volunteering in public hospitals in a way in which it becomes part of normal activity in hospice and palliative care.

Furthermore, there is, as yet, no nationally organised volunteer training programme or content in Finland. But we hope this may change as the systematic work to develop volunteer training and structures gets under way.

COVID-19 – how can we ensure the valuable contribution of volunteers is not lost?

The outbreak of the pandemic COVID-19 has influenced the ways in which volunteers can participate in the provision of hospice and palliative care. To prevent the virus from spreading, volunteers were not invited to support the patients, their families and friends, to collaborate with the professionals or to just ’be there’. Also, the professionals noticed that something very important was missing. The additional value that volunteers bring to the community was suddenly exposed, in such an exceptional situation.

The longer the pandemic continues, the more difficult it becomes to keep volunteering going. At the same time, we need to find ways to maintain the commitment and enthusiasm of the volunteers by enabling them to be active, in addition to protecting people from becoming infected. Trying to find a balance is a significant and constant challenge.

We would be delighted to hear from volunteer managers in hospice and palliative care organisations how you are coping with this. Please share your ideas and suggestions by leaving a comment below or contacting us by email at the links below.

More about the authors…

Leena Pelttari (MSc Palliative Care) is Co-chair of the European Association for Palliative Care (EAPC) Task Force on Volunteering and Chief Executive of Hospiz Osterreich, the national palliative care association of Austria. Her nationality is Finnish.
Ritva Pihlaja (MSc Agriculture and Forestry) is studying for a Bachelor’s degree in Social Services and Health Care, graduating in December 2020, and formerly worked as a social policy researcher.
Mirja Sisko Anttonen (PhD) is Nursing Director at Hospice Terhokoti in Helsinki, Finland.


Look out for more posts in the next few weeks on ‘Volunteering and Palliative Care’ on the EAPC blog. And you can also find earlier posts on volunteering here. We are also planning to bring you another post from Finland – this time about the role of psychologists and social workers in Finnish hospices and palliative care services.

Posted in VOLUNTEERING IN PALLIATIVE CARE | Tagged | Leave a comment