Can powerful personal stories at a world level make a difference? 

In 2015, Sharon Thompson, from Donegal, Ireland, shared the story of her daughter, Victoria, in a series entitled: Palliative stories from the perspective of patients and family carers published on the EAPC blog. Last month, Sharon’s passionate advocacy work for children with life-limiting conditions or complex care needs took her to Geneva to share her story at the highest level.

Ms Sharon Thompson with (left) Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance, and Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization.

Our angel Victoria led us to Geneva and the 144th World Health Organization (WHO) executive board meeting in January 2019. I was invited to speak about the need for palliative care worldwide by The Worldwide Hospice Palliative Care Alliance (WHPCA).

Applications to speak/intervene from international organisations (or NSAs – non-state actors) are placed at the end of packed WHO agendas. Then we simply wait and be grateful for the time we might be allowed. If the NSAs do get to speak, there are two chairs for us to take turns on, right at the back, near the busy door. You get the picture … After two and a half days of waiting in a hot gallery, the WHO heard my two-minute intervention.

I could go on about the building, the amazing interpreters and the dancing. Yup, dancing. After a few hours, the world health leaders get up to move or dance for approximately two minutes. (Can you picture it?)  But instead of lingering on these unusual details, I want to share some meaningful facts that I voiced at the meeting.

There are an estimated 3,800 mothers of life-limited children in Ireland. I wanted the WHO to know about their 24-hour, 365 days struggle

  • If parents do happen to secure government-funded nursing care, they are hit with the job of finding and organising nursing care themselves, this is on top of the loco parentis rule, which means parents cannot leave their home while a HSE (Health Service Executive) nurse is present!
  • A child’s equipment and care package will more than likely depend on their geographical location, their community nurse, how much a parent fights/goes to the media, on local political will and family support structure. It will have very little to do with the severity of the child’s condition.
  • The cost of equipment for life-limited children is extortionate. Applying for it is a long and arduous process through the public health system. Most families try to purchase equipment themselves.
  • Families have untold, huge financial hardship and this continues into bereavement.
  • There are no, or very few, free state palliative care services for children that automatically visit. Most are fought for. If  there is a children’s palliative care nurse, all responsibility and symptom management falls to him or her, as the majority of families are encouraged or, in some cases, forced to take their child home.
  • If the primary carer for a child becomes ill themselves, there is no crisis care system in place to help care for their child.
  • Parents must suddenly, overnight, become nurses. They have to come to terms with medications, terminology and terrible symptoms, while actively grieving and running a family home.
  • It’s more than likely that parents will have to research and ask for pain and other medications for their child when their condition is deteriorating.
  • There are also social housing restrictions for those with a life-limited child.
  • We are told that there is a national development committee for children’s palliative care in Ireland but I’ve no idea what it does. It seems to have no or not much communication with the general public. Could members of this committee let us know – what is the national policy for children’s palliative care development in Ireland?
  • There is little or no consistent counselling, bereavement care or mental health support for families.
  • Having private health insurance is of little benefit and there are very few people who you can pay for the care a child needs.
  • If your child’s condition deteriorates you may have to sit in a crowded Accident and Emergency department for hours and you will be told that your child should die at home.
  • The whole idea of parental/patient involvement is new in the world of health.
  • Children’s palliative care is also a new specialty.

I am in contact with hundreds of mothers and all of this reflects their experiences. These are points that need to be heard.

So… when I got to the WHO for those precious two minutes, was I glad that we went?

Yes, I am glad. Victoria’s message was heard through all of the posturing and politics. Magically, I got to briefly meet with Dr Tedros, the Director-General of the WHO. (Massive thanks to Dr Mike Ryan, who introduced us to Dr Tedros;  also sincere gratitude to the WHPCA who provided the support and funding for me to attend the WHO).

Now, a month on, my husband Brian and I ask, can our baby girl’s legacy make a difference to the world? 

Maybe – as Dr Tedros and other powerful delegates said that they would remember Victoria’s message.

Can you hear it?

We ask that budgets, plans and policies around the world have consistent, proper palliative care for all, including children, as part of universal health coverage.

Links

Save the date! These two seminars at the 16th EAPC World Congress in Berlin may be of interest …
Join Sharon Thompson in a Meet the Expert session: Enabling the Voice of Patients, Carers and Family Members to improve Advocacy on Access to Palliative Care  Saturday 25 May at 08:00 to 08:45. Download the full congress programme here.

This session will highlight the importance of empowering patients and families in paediatric palliative care. This will be reviewed from a range of perspectives and during this session we will explore how this can make a difference personally, through powerful advocacy and by influencing change at a national level. We challenge the concept that palliative care puts the family at the centre of care and in this interactive session we will hear strong personal stories.

Global challenges in Paediatric Palliative Care: An EAPC Seminar, Thursday May 23, 2019 at 08:00 to 18:15. Download the programme here. Delegates who wish to attend only the Paediatric Palliative Care Seminar pay a day rate. Register here.

Posted in ADVOCACY & POLICY, CHILDREN'S PALLIATIVE CARE | Tagged | Leave a comment

Futurism in Palliative: An overview of the Palliative Care, Architecture and Design Symposium (PADS 2018)

The inaugural Palliative Care, Architecture and Design Symposium held in Liverpool, UK, in November 2018, enabled delegates to explore how architecture, design and technology can improve quality of life for people with palliative care needs. Christian Goodwin, Fulbright Scholar, US-UK Fulbright Commission, London, UK; Palliative Care Institute Liverpool, University of Liverpool, UK and Dr Amara Nwosu, Consultant and Honorary Senior Clinical Lecturer in Palliative Medicine, Palliative Care Institute Liverpool, University of Liverpool, UK, explain.

Left to right: Christian Goodwin and Amara Nwosu.

The world is ageing. Current evidence demonstrates how the UK need for palliative care will increase by 42 per cent by 2040. [1] Care homes are projected to be the most common place of death [2] with similar figures expected globally.[3]It is therefore important that living environments are designed to optimise function, quality of life and independence for an increasingly frail population. Technological and architectural innovations offer great potential to improve quality of life, to enable people to live in their homes for longer. [4]

Futurism is an interdisciplinary field combining mathematics, engineering, art, technology, economics, design, history, geography, biology, theology, physics, and philosophy. Futurists collect data, identify emerging trends, develop strategies, and calculate the probabilities of various scenarios occurring in the future. Forecasts are used to help leaders make better, more informed decisions.[5] We believe it is possible to use futurism to determine how various factors (such as technology, design and architecture) can be used to support palliative care in the future.

Dr Amara Nwosu gives the opening address for the inaugural Palliative Care, Architecture and Design Symposium (PADS).

On 12 November 2018, 50 delegates attended theinaugural Palliative Care, Architecture and Design Symposium (PADS) in the University of Liverpool (funded by engage@liverpool, University of Liverpool). We applied futuristic thinking to palliative care through a collaborative meeting of academics, clinicians, and the public, to discuss ideas related to design and future provision of palliative care. The following are some of the key ideas arising from the symposium.

Dr Simon Roughneen (left) and Dr Mark Mills providing a demonstration of the application of virtual reality (VR) to provide distraction therapy in palliative care.

Role of Virtual Reality (VR) and new technologies

The symposium included multiple presentations on the role of VR, robotics, and other new technologies. These tools have the potential to improve care through therapeutic, assistive, communication and social purposes. However, it is also possible that these technologies may replace some human contact, resulting in job losses, and decreased contact with healthcare professionals, and increased elderly social isolation. For public health there is concern that technological investment will replace other societal initiatives.Consequently, research on the opportunities and risks of this technology is urgently needed. [4]

Transdisciplinary Teams

There was discussion that in order for palliative care to benefit from new innovation, that it was important to explore alternative teamwork approaches. This may include transdisciplinary models, which may help to harmonize knowledge between disciplines into a coordinated and coherent whole.[6]

Inequalities in Palliative Care

It is essential to ensure new technology will meaningfully benefit society and not widen existing health inequalities. [4] Adopters of new technology are generally younger, and more affluent than non-adopters; therefore, it is possible that societal access to these technologies will not be equitable.Consequently, it is imperative to consider these health and social inequalities when designing and implementing new tools.

The Design of Spaces

The spaces where we provide and receive palliative care affect that care. We must carefully consider design of new healthcare environments, in order to identify our own assumptions and biases about design, and question how those spaces might help or hinder palliative care. It is important that human-centred design methodology informs the design of living, communal and social spaces for those receiving palliative care. [7]

These are just a few of the themes from the presentations and discussions. The shared excitement and resolve to collaborate were encouraging. There was consensus that we also need more opportunities and spaces that allow for this exchange of ideas.

To find out more or get involved

If you would like to learn more about the symposium, or get involved with future collaborations related to this event, please contact Amara Nwosu at the links below. Presentations from the event are available here.

Links

References

  1. Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine. 2017;15(1):102. doi: 10.1186/s12916-017-0860-2.
  2. Bone AE, Gomes B, Etkind SN, Verne J, Murtagh FEM, Evans CJ, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine. 2017; 32 (2): 329-36. doi: 10.1177/0269216317734435
  3. World Health Organization. World Population Ageing 2017.
  4. Nwosu AC, Collins B, Mason S. Big Data analysis to improve care for people living with serious illness: The potential to use new emerging technology in palliative care. Palliative Medicine. 2018; 32 (1): 164-6. doi: 10.1177/0269216317726250. PubMed PMID: 28805118.
  5. Webb A, . What, Exactly, Is A Futurist? Website of Amy Webb2019 [cited 2019 9th January ]. Available from: https://amywebb.io/futurism/.
  6. Choi BC, Pak AW. Multidisciplinarity, interdisciplinarity and transdisciplinarity in health research, services, education and policy: 1. Definitions, objectives, and evidence of effectiveness. Clinical and investigative medicine Medecine clinique et experimentale. 2006; 29 (6): 351-64. Epub 2007/03/03. PubMed PMID: 17330451.
  7. Bellamy A. 4 Designing dying well: toward a new architectural approach of in-patient palliative care environments. BMJ Supportive & Palliative Care. 2018; 8 (3): 361-. doi: 10.1136/bmjspcare-2018-mariecurie.4.

 

Posted in EDUCATION & TRAINING | Tagged , , , , | 2 Comments

AI Algorithms identify documentation of serious illness conversations in electronic health records

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

Charlotta Lindvall, Alex Chan and Anne Walling explain the background to their longer article selected as Editor’s Choice in the February issue of Palliative Medicine.

Top left clockwise: Alex Chan, Charlotta Lindvall and Anne Walling.

Electronic Health Records (EHRs) contain enormous amounts of data that may be used to facilitate treatment discovery, guide quality and safety initiatives, and enhance patient satisfaction. Quantitative data, for example body temperature and blood work, can be logged and tracked. However, much of the qualitative data, such as patients’ descriptions of their symptoms or treatment goals, are manually recorded in the clinical visit notes using a free-text format. It is estimated that 70-80 per cent of patient information resides in unstructured free-text notes, including many outcomes related to palliative and end-of-life care. Manual chart reviews required to extract these data are extremely time-consuming and expensive, so many endorsed palliative care measures are not assessed, and their impact on distal and important patient outcomes have been insufficiently evaluated. A key example of this is timely documentation of patient care preferences in critically ill older adults.

In the current issue of Palliative Medicine, we show that AI (Artificial Intelligence) algorithms can be applied to assess a palliative care quality measure endorsed by the National Quality Forum. Our team, led by Dr Lindvall at the Dana-Farber Cancer Institute, built and tested AI algorithms in the form of natural language processing to assess documentation of patient care preferences in clinical notes from the EHR at Beth-Israel Deaconess Medical Center in Boston. Our natural language processing algorithms analyzed clinical notes more than 18,000 times faster than clinician coders (0.022 seconds/note vs. 402 seconds/note) with an accuracy approaching that of human coders (92 per cent). Applied to 10,250 clinical notes from1,350 critically ill patients aged 75 or over, we found that 65 per cent of patients had care preferences documented within the first 48 hours. We also detected variations in care. For example, clinicians in surgical critical care units documented patient care preferences less frequently than clinicians in medical critical care units (45 per cent vs. 75 per cent). Being able to detect differences in care at the hospital system level in just a few minutes makes these methods promising for quality improvement projects.

The Lindvall lab focuses on natural language processing to extract patient-centred information from EHRs. While we interact with AI technology every day, for example with shopping or banking, it is underutilised in clinical medicine. This is unfortunate as it offers great potential for the improvement of patient care. Natural language processing facilitates the understanding, interpretation and manipulation of human language using computers. This makes it possible to analyze massive amounts of language-based data in a consistent, efficient and unbiased manner. Our algorithms presented in the current issue of Palliative Medicine, analyzed clinical notes in a tiny fraction of the time needed for manual review, offering a practical option for rapid audit and feedback regarding care preference documentation at the system and clinician level.

READ THE FULL ARTICLE IN PALLIATIVE MEDICINE
This post relates to the longer article, ‘Deep Learning Algorithms to Identify Documentation of Serious Illness Conversations During Intensive Care Unit Admissions’ by Alex Chan, Isabel Chien, Edward Moseley, Saad Salman, Sarah Kaminer Bourland, Daniela Lamas, Anne M Walling, James A Tulskyand Charlotta Lindvall, published in Palliative Medicine 2019 Volume: 33 issue: 2, page(s): 187-196. Article first published online: November 14, 2018. Issue published: 1 February 2019.

More about the authors …

Charlotta Lindvall, MD, PhD is a physician-scientist in the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, USA. Contact Charlotta Lindvall by email.

Alex Chan, MS, MPH is Gerhard Casper Fellow at Health Research and Policy, Stanford University School of Medicine, Stanford, USA.

Anne Walling, MD, PhD is Associate Professor at the Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California Los Angeles; and Palliative Care, VA Greater Los Angeles Healthcare System, Los Angeles, USA.

EAPC MEMBERS CAN DOWNLOAD THE FULL ARTICLE FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download free of charge all ‘Editor’s choice’ articles and many other papers too. Just click here then enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Click here to join as an Associate or Individual Member, or to renew membership.  Choose relevant national palliative care association if you wish to register free of charge as an Associate Member, now login with your email address and password and choose from the list of articles.

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Leave a comment

What animals bring to palliative care patients in Toulouse


Cliquez ici pour la version en français.

Continuing our new series, ‘Palliative Care and Animals’ …

For several months now, the palliative care unit at l’Hôpital Joseph-Ducuing in Toulouse, France, has been welcoming therapy animals from the organisation, AnimalCalîn. Dr Ingrid Payet, explains.

Dr Ingrid Payet

I’m a doctor in the palliative care unit and I share a passion for animals with Christell, who is an ancillary assistant. We had noticed that patients who had been allowed to have their own pets brought in to see them were greatly comforted by these visits.

But having your own pet to visit is not that straightforward and it can be stressful for an animal to see its owner in a hospital ward. Besides, we wanted every patient who wished to benefit from a relationship with animals to be able to do so. So, we approached the organisation AnimalCalîn, which agreed to work with us on a voluntary basis by bringing into the unit dogs, rabbits, turtledoves and a cat.

Although I was already convinced of the benefits, when we started I was overwhelmed by just how beneficial the relationship was for the patients.

When therapy animals are introduced, the patient becomes a ‘person’ again and drops the status of ‘patient’. The arrival of the animal brings ‘something else’ – something other than care – and brings the ‘outside world’ to the patient.

Patients admitted to the palliative care unit have often undergone great physical change but for the animal nothing has changed; it will go to the person who calls it regardless of weight loss or other symptoms. Moreover, animals are very sensitive and sometimes, surprisingly, they go to those who need them most.

What impresses me most of all is how interaction with animals can release emotions and sometimes speech. In this relationship, communication goes beyond words – through touch, a caress, or a look.

For example, I remember Mr T who was very withdrawn and spoke only to answer yes or no to questions. During the session he held the rabbit in his arms for a long time, stroking him without saying a word. In the afternoon, he was able to chat with his wife and seemed more peaceful. He died shortly afterwards.

For Mrs C, the visits from the animals were a respite from her illness. She said:

“I like being with animals, it relaxes me. The illness is talked about a lot, and when it’s talked about I feel diminished, when the team gets us to take part, it’s tremendous what they do. It lifts my spirits, it perks me up.”

Speaking about Gandhi, a Havanese dog [a member of the Bichon family], and her favourite animal, she said: “He’s a friend, you can talk to him and cuddle him. ”

Animal-assisted therapy enables a degree of peacefulness. Mrs D’s breathing became a lot calmer when Gandhi was sitting next to her.

When family and friends are present, animal-assisted therapy also allows a moment that is no longer suspended in time, or sometimes ‘waiting time’, but time that is full of rapport and full of life.

After seeing so many benefits from these sessions, in spite of myself, I have become a strong advocate for the involvement of therapy animals with palliative care patients.

Musical icons: One of the photos from the fundraising calendar.

Although AnimalCalîn is a voluntary organisation we do have to pay a membership fee to take part. So to raise funds to do this, and ensure the continuation of our project, we have now created a photo calendar with pictures of our team dressed as musical icons, with all the proceeds going towards our project.

To find out more …


Des animaux auprès de patients en unité de soins palliatifs à Toulouse

Aujourd’hui, nous reprenons notre série spéciale sur la médiation animale en soins palliatifs.

Depuis plusieurs mois, nous accueillons au sein de l’Unité de soins palliatifs (USP) de l’Hôpital Joseph Ducuing à Toulouse, les animaux de l’association AnimalCalin pour des séances de médiation animale. Le Dr Ingrid Payet explique :

Dr Ingrid Payet

Je suis médecin dans l’USP et je partage la passion des animaux avec Christell, agent hospitalière dans le service. Nous avions constaté que les patients, qui sont autorisés à faire venir leur propre animal de compagnie, recevaient un grand réconfort de ces visites.

Mais faire venir son animal de compagnie n’est pas forcément aisé et celui-ci peut être stressé de voir son maître dans un chambre d’hôpital. De plus, nous souhaitions que tous les patients qui le désirent puissent bénéficier de cette relation avec des animaux. Nous avons alors sollicité l’association AnimalCalin qui a accepté d’intervenir bénévolement en amenant dans le service, chiens, lapins, tourterelles et chat. Lorsque nous avons commencé, bien que convaincue, j’ai été saisie de voir à quel point cette relation était bénéfique pour les patients.

Lors des séances de médiation animale, le patient est replacé en tant que personne et sort de son statut de malade. La venue de l’animale amène un « autre chose » que les soins, fait venir le « monde extérieur » auprès du patient.

Les patients en USP sont souvent très altérés physiquement ; pour l’animal cela ne change rien, il ira vers celui qui l’appelle sans tenir compte de l’amaigrissement ou des autres symptômes. De plus, les animaux possèdent une grande sensibilité et vont, parfois de manière surprenante, vers ceux qui en ont le plus besoin.

Ce qui m’a le plus saisie, c’est à quel point l’interaction avec les animaux pouvait libérer les émotions et parfois la parole. Dans cette relation, la communication passe par autre chose que les mots ; par le toucher et la caresse, le regard.

Je me souviens par exemple de M. T. qui était très en retrait et ne parlait que pour répondre par oui ou non aux questions. Lors de la séance il a longuement pris le lapin dans ses bras, l’a caressé, sans un mot. Dans l’après-midi, il a pu discuter avec sa femme et semblait plus apaisé. Il est décédé peu après.

Pour Mme C., les séances étaient un moment loin de la maladie. Pour la citer,

« Je suis bien en compagnie d’animaux, cela me relaxe. La maladie on en parle beaucoup, et quand on en parle, je me sens diminuée. Là, l’équipe nous fait participer, c’est formidable ce qu’elles font. Cela m’a fait du bien au moral, cela me requinque.»

Elle disait de Gandhi, le bichon havanais, son animal préféré, « C’est un compagnon, on peut lui parler, lui faire des câlins »

Les séances de médiation animale permettent un certain apaisement, comme pour Mme D., dont la respiration se calmait lorsque la tête de Gandhi, le bichon, se posait contre elle.

Cela permet également, lorsque les proches sont présents, d’avoir un moment qui ne soit plus simplement ce temps suspendu et parfois d’attente mais un temps plein d’échange et de vie.

Après avoir vu tant de bénéfices de ces séances, je suis devenue un peu malgré moi, une fervente défenseuse de la médiation animale auprès des patients en soins palliatifs.

Afin de pérenniser notre action et de pouvoir participer aux frais de l’association AnimalCalin, nous avons même réalisé un calendrier photos avec les membres du service, déguisés en icones musicales, dont tous les financements iront à notre action.

Pour en savoir plus

Le calendrier photos avec les membres du service déguisés en icones musicales.

 

Posted in Palliative Care & Animals, PATIENT & FAMILY CARE | Tagged , , | 1 Comment

From Azerbaijan to Zimbabwe – what people liked most on the European Association for Palliative Care (EAPC) blog in 2018

Followers of the EAPC blog have wide-ranging interests and (in 2018) came from 168 countries – 86 per cent of the world’s countries. And that’s official because we’ve just checked our viewing statistics for last year to identify the ‘Top Ten Most-viewed Posts’ on our blog in the first half of 2018. The EAPC Social Media Team are delighted to announce the winners …

Contributors to the top three posts: Clockwise, Fran McInerney, Jacinta Kelly, Dympna O’Connell, and Lea Jabbarian.

Now in its seventh year, the EAPC blog has become a go-to place for information among palliative care professionals, researchers and academic staff in Europe and beyond. Looking back on the past year to see the diversity of posts published, and how far we’ve reached geographically, is a source of pride for us. But, more importantly, it highlights the huge amount of effort of the people who conjure up these wonderful posts – our contributors. So it’s with great pleasure that we announce below the contributors of the Top Ten Most-viewed Posts for the first half of 2018.

Viewing statistics are cumulative throughout the year; thus, to ensure that posts published in the last part of the year are not unfairly disadvantaged, we will publish the Top Ten most-viewed posts from July to December 2018 later this year.

Top Ten Most-viewed Posts for the first half of 2018 – just click on the title to read the full post

1. Dementia and Palliative Care – A Good Fit?, Prof Fran McInerney, Australia, 26 March 2018.

2. Dementia, what is the role of the Specialist Palliative Care Service? Ms Jacinta Kelly and Ms Dympna O’Connell, Ireland, 21 March 2018.

3. Advance care planning for patients with chronic respiratory diseases, Ms Lea Jabbarian, The Netherlands, Action Consortium, 23 April 2018. 

4. The world’s first full-scale occupational therapy trial in people with advanced cancer, Mr Marc Sampedro Pilegaard, Denmark. Palliative Medicine Editor’s Choice, 5 April 2018.

5. So Palliative Care Works: What Now? Achieving the routine integration of palliative care in clinical practice – an interview with Anna Collins, winner of the 2018 EAPC Early Researcher Award, Ms Anna Collins, Australia, 25 May 2018.

6.    Trauma, dying and somatic experiencing, Dr Louis Heyse Moore, UK, 12 February 2018.

7.   New videos for clinicians, teachers, researchers and patients to show how early palliative care might work for people with all illnesses, Prof Scott Murray (Scotland) and Dr Sébastien Moine (France), EAPC Primary Care Task Force, 26 February 2018.

8.   What are the main challenges facing palliative/end-of-life care today in relation to Japan’s ageing society, Dr Mariko Masujima and Mr Zaiya Takahashi, Japan, 31 January 2018.

Winning contributors. Clockwise, Zaiya Takahashi, Mariko Masujima, Mario Lopez Saca, Ancu Feng Escobar and Thomas LeBlanc.

9.    Integrating palliative care aside curative treatment in hemato-oncological diseases  – An interview with Dr Thomas W LeBlanc, winner of the 2018 EAPC Clinical Impact Award, Dr Thomas LeBlanc, USA, 24 May 2018.

10. Symptomatic hyponatraemia in home-based palliative patients treated with subcutaneous infusionsDr Ancu Feng Escobar and Dr Mario Lopez Saca, El Salvador, 28 May 2018.

More winning contributors: Clockwise, Marc Sampedro Polegaard, Sébastien Moine, Scott Murray, Louis Heyse-Moore and Anna Collins.

Our contributors

The winners listed above are fairly typical of our contributors – a mix of people involved in EAPC-related activities and others from across the world who generously share their new initiatives, personal perspectives and research.

Our followers – and why it’s good to share

We’re proud that people from 168 countries followed the blog in 2018 – from Azerbaijan to Zimbabwe – proof that the EAPC really does have an impact that goes far beyond Europe. Over the past year we have watched a big increase in the number of followers from North America with the final results for 2018 showing: North America 40 per cent; Europe 39 per cent; Asia ten per cent; Latin America and the Caribbean five per cent; Oceania 4 per cent and Africa one per cent. Of course, viewing statistics can fluctuate for various reasons, especially how many times you share it, so please don’t keep a good post to yourself – share it with your co-workers – and friends and family too.

One thing’s certain –we can promise our contributors a truly international audience. Here’s what one of our contributors said:

It was great to see the interest [my post] generated. I had emails from people all over the world. Amazing the interest that’s out there in this topic.”

Congratulations to the 2018 winners and many thanks to everyone who has contributed to the blog. Whether you’re writing, reading, liking or sharing, you all play a big part in helping the EAPC to disseminate high-quality information and research and to play a part in the global hospice and palliative care community.

We really want, and value, your involvement – if you’d like to contribute in any way please follow the links below.  And do look out in July for the announcement of the winners of the Top Ten Most-viewed Posts for the second half of 2018.

Links

Find out more about the social media team here, and please visit the EAPC website for information on all EAPC activities and how to become a member. 

 

Posted in SOCIAL MEDIA | Tagged , | Leave a comment

Milestones: Fifty years of hospice and palliative care in Germany

ONLY 101 DAYS TO #EAPC2019 … AHEAD OF THE 16TH WORLD CONGRESS OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC) TO BE HELD IN BERLIN, GERMANY, 23 TO 25 MAY 2019, WE BRING YOU SOME SPECIAL POSTS TO WELCOME YOU TO BERLIN.

Today, Professor Dr H. Christof Müller-Busch, University Witten/Herdecke, Germany, describes some of the many milestones in the development of palliative care in Germany and welcomes you to Berlin.

Prof Dr H Christof Müller-Busch

Palliative care in Germany has experienced dynamic development during the past 50 years and is now widely recognized in society and politics. Since 2007, palliative care has been established by law in Germany as an integrated part of our complex healthcare system, with approximately 5,000 beds in 235 inpatient hospices and 304 palliative wards (2018 statistics). Outpatient palliative care comprises 300 contracts for specialized teams. Eleven thousand physicians have acquired a qualification in palliative care and 100,000 volunteers support hospice work in 1,400 outpatient hospice services. Palliative care is an integrated part of the curriculum for medical students with chairs for palliative medicine in 11 of the 36 universities.

Difficult birth and first steps

It was in 1969 and the early 70s that chaplains, physicians and medical students first encountered Cicely Saunders, resulting in a German television documentary about St Christopher’s Hospice: 16 Days to Go. Hospice Care for the Dying in London. The film led to controversial discussions about the need of special ‘Sterbekliniken’ (‘hospitals for the dying’), a concept mainly opposed by church leaders. Consequently, the development of palliative care in Germany was considerably delayed compared to other countries. The first palliative care unit was opened in Cologne University Hospital in 1983. At the same time, in both parts of the then divided Germany, pioneering homecare models for the care of the dying were introduced with very little public and financial support.

In the 90s, in a now united Germany, ‘Staying in motion’ was the drive from many committed people from different professions to develop palliative care qualifications and structures in different healthcare fields. The foundation of the German Hospice and Palliative Care Association in 1992 and the German Association for Palliative Medicine (DGP) in 1994 were important milestones. From 1997 onwards, came the implementation of various curricula in palliative care for different professions; the first hospice law was passed in 1996, and then in 2007 a law enabling everyone in need to have access to specialized outpatient palliative care (SAPV).

The Charter for the Care of the Critically Ill and the Dying launched in 2010.

Being there and pointing the way

This describes the development in the past 10 years. More than 3,000 hospice and palliative care services across the country are registered in a guide, which is available in nine different languages. A multicultural approach and the prevention of suffering by early integration of palliative care drives more than 5,700 DGP members involved in care services in varying areas. The ‘Charter for the Care of the Critically Ill and the Dying’ in Germany was launched in 2010 as part of the Budapest Commitments [a joint initiative of the EAPC, International Association for Hospice and Palliative Care (IAHPC) and Worldwide Hospice Palliative Care Alliance (WHPCA)], and formulated recommendations as the basis for a national strategy. The S3-Guideline Palliative Medicine (1st part 2015 and 2nd part 2019) – provides evidence and consensus-based recommendations for best practice in palliative care for patients with incurable cancer in 15 important topics, with more than 60 multi-professional and interdisciplinary institutions and 150 experts actively involved.

Deutsche Gesellschaft für Palliativmedizin’s booklet in the English language.

Better dying in Berlin

Many years ago, Better dying in Berlin was our statement to promote palliative care in Berlin. We’ve come a long way since then and it will be another milestone and an honour to host #EAPC2019 for the first time in Berlin, our exciting and, in many aspects, fascinating and reunited capital.

More about the author …

Prof Dr H Christof Müller-Busch, PhD, MD University Witten/Herdecke, was President of the German Association for Palliative Medicine (DGP) from 2006 to 2010. In 2008, he launched the ‘Charter for the Care of the Critically Ill and The Dying in Germany’.

Links

 

 

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Rían: The therapy dog who’s a leading member of the team at Our Lady’s Hospice

Contributing to our new series, ‘Palliative Care and Animals’, Noreen Holland, Assistant Director of Nursing at Our Lady’s Hospice & Care Services in Dublin, Ireland, introduces us to therapy dog, Rían.  

Noreen Holland

Pets provide companionship, love and devoted loyalty to their owners, giving purpose, connectedness and much joy. Our therapy dog, Rían,ticks these boxes and more. His presence brings an added dimension to the team that benefits not only the patients, but family, staff and volunteers alike.

A belief in the value of pets is evident in Our Lady’s Hospice & Care Services, over the years. Fish in tanks are commonplace. A chattering budgie has been known to subdue the assertions of a vocal ward manager. Visiting animals have provided therapeutic value for individuals and families in the hospice during times of grief and impending loss. Every request for a pet visit is considered and is supported once an acceptable plan is in place, ensuring that each visit is safe for all concerned. Cats, dogs, snakes and even a horse have visited for cuddles and hugs, and a farewell meeting with their owners. Some have even slept over, but not the horse. Organised pet visits can also be arranged via ‘Peata’, a voluntary organisation in Ireland whose main objectives are:

  • To provide a pet visiting service as a therapy to places of care.
  • To promote an awareness of the benefits people derive from pets.
  • To further the understanding of the relationship between people and pets.

Rían is a firm favourite with patients and staff alike. Photo with kind permission of Our Lady’s Hospice & Care Services.

How we prepared for Rían’s role at the hospice

Staff at the hospice believe that pet therapy is more than simply having time with a pet or a visiting animal. This opinion inspired negotiations for a resident therapy dog and so, just over three years ago our therapy dog Rían, a golden retriever, arrived. He was just a twelve-week-old puppy then. Having a therapy dog on the unit is exciting but it takes commitment and hard work to get it right. The goal was to bring comfort to patients and families and maybe enhance the value of the palliative care service and we are confident that we have succeeded on that front. However, there was some apprehension about having a therapy dog. A risk assessment was completed and a policy and guidelines were developed. However, much of the learning resulted from ‘reflection in action’. For example, we soon realised that a dog needs one master. Having several ‘mammies’ confused him and impaired his behavioural development in the early days. Formal guidance was provided by a recognised dog trainer – we had made a few mistakes in developing Rían. We also needed to establish a ‘poo patrol team’. We have fabulous garden spaces that are also highly therapeutic, so it is important that a balance is maintained.

What our patients and families think of Rían

There are many heart-warming stories of the joy that Rían brings to patients and families. Clearly, he provides companionship and pleasing diversion for many, though some are surprised and question the rationale of having a dog on the ward. All are accepting of his value, once they realise that he is well behaved and respectful of their personal space. Many have said that just meeting him helps allay anxiety about coming into the hospice. His presence, they claim, helps bring a sense of calm and some even say that they are less aware of their pain and distress when they are with him. Visiting children love to pat him and he has become one of the most photographed dogs in Dublin. There is some evidence in the literature supporting the value of a therapy dog but for the most part the evidence is anecdotal. Our evidence is a lived experience and it is positive but there are challenges.

For staff thinking about getting a therapy dog; there is general guidance available in the international literature. Obvious criteria such as being fully house trained, having no history of aggressive behaviour, having a friendly disposition and being able to obey simple commands are listed. Handlers are required to ensure that the dog is up to date with vaccinations, be mindful of the health and safety.

Rían and owner, Carol, meet HRH The Prince of Wales during his visit to Our Lady’s Hospice & Care Services. Photograph: Paul Sharp, Sharppix.

Rían has learned to embrace visiting celebrities and corporate donors with charm and cooperation. He is so familiar with camera attention, that he has perfected a ‘catwalk’ performance and he is happy to stand in for ‘selfies’. Evenings and at weekends (unless his master is on duty), Rían goes to the country where he lives a normal dog’s life with his two friends and their owner.

 

 

Links and resources

Next week on the blog, Dr Ingrid Payet will explain what animals bring to palliative care patients in Toulouse, France.

 

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