PALLIATIVE CARE FROM DIAGNOSIS TO DEATH


Cliquez ici pour la traduction française.

Klicken Sie hier für die deutsche Übersetzung.

CELEBRATING WORLD HEALTH DAY, 7 APRIL 2017 . . .

Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd, members of the EAPC Primary Care Reference Group, mark World Health Day with this post in English, German and French.

Left to right: Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd

Recently, the newly formed European Association for Palliative Care (EAPC) Primary Care Reference Group published an analysis in the British Medical Journal that has proven very popular in social media internationally.

We wanted to present an evidence-based rationale for early palliative care based on the fact that the last stage of life can start much earlier for some people than others and that dying is a four-dimensional experience with dynamic changes in all dimensions of need.

To get this message across, we made a four-minute video, which is freely available from the abstract of this article even if you cannot access the full text. The video summarises the article.

It shows that in the rapid trajectory (typically cancer), a palliative care approach might be triggered at diagnosis as there may well be considerable psychological or existential distress then, and that waiting until the terminal stage misses the point.

In the intermittent trajectory of organ failure, similarly it shows that there can be social and psychological needs at the times of the acute episodes of decompensation; hence early holistic planning to both prevent and treat these emergencies is indicated.

In the gradually declining trajectory typically of frailty, the video graphically illustrates that social, psychological and even existential distress can occur months before the final physical decline and that preventing such issues and promoting resilience and carer support is indicated.

We then summarise that for good early palliative care we have to:

  • Identify an early trigger when this approach might be started.
  • Chat with the patient and carer to explain the likely course or trajectory of the illness and understand their goals in the light of this.
  • Make a plan together with the patient and carer, hoping for the best, but planning for the worse, accepting the inherent uncertainty.
  • Communicate the plan with everyone who might be involved.

Do have a look at the video and feel free to show it to educate students, professionals or at any conferences. The BMJ also posted the video on Twitter and Facebook where it is getting many thousands of views.

As the purpose of our Primary Care Reference Group is to advocate for early palliative care in all settings, especially the community, we would be delighted if anyone would like to translate the video or do a voice-over in your own language. There are no copyright issues as we made the video – we especially thank Dr Jordi Amblas-Novellas, a geriatrician from Catalonia, for doing this in his spare time! We are proceeding to make a similar video for people with various life-threatening conditions to help them understand how their illnesses might progress, and thus how they might master them by knowing about them and planning ahead.

Links and references

 

Soins palliatifs : du diagnostic jusqu’au décès

Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd, membres du Groupe Référent EAPC sur les Soins Primaires.

Left to right: Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd

Le nouveau Groupe Référent EAPC sur les Soins Primaires a récemment publié une analyse dans le British Medical Journal, qui a rencontré une popularité internationale sur les réseaux sociaux.

Nous avons voulu présenter un aperçu des données probantes en faveur de l’intégration précoce des soins palliatifs, en nous appuyant sur le fait que la phase ultime de la vie peut commencer beaucoup plus tôt chez certaines personnes que chez d’autres, et que la trajectoire de fin de vie est une expérience quadridimensionnelle, avec des changements dynamiques affectant toutes les dimensions des besoins des personnes.

Afin de diffuser ce message, nous avons réalisé une vidéo de 4 minutes qui est disponible gratuitement sur la page de l’article, même si vous ne pouvez pas accéder à la totalité du texte. Cette vidéo constitue un résumé de l’article

On y voit que dans les trajectoires rapides (comme dans le cancer), la démarche palliative peut être mise en œuvre dès le diagnostic, car il peut alors déjà exister une souffrance psychologique ou existentielle considérable, et attendre jusqu’à la phase terminale représente une perte de chance.

Dans la trajectoire intermittente des insuffisances d’organe (insuffisance cardiaque, respiratoire, rénale…), nous voyons qu’il peut y avoir des besoins sociaux et psychologiques au moment des épisodes de décompensation aiguë, et par conséquent un plan de soin précoce et holistique visant à prévenir et traiter ces urgences est requis.

Dans la trajectoire à déclin progressif, typique du syndrome de fragilité gériatrique, la vidéo montre que les souffrances sociale, psychologique et même existentielle, peuvent survenir de nombreux mois avant la phase ultime de déclin physique, et que la prévention de ces problèmes, associée à une approche promouvant la résilience et le soutien des proches-aidant.e.s sont indiquées.

En résumé, la qualité des soins palliatifs précoces repose sur notre capacité à :

  • Identifier le moment où cette approche peut être débutée, et la démarrer précocement.
  • Discuter avec patient.e et proche-aidant.e.s de l’évolution probable de la trajectoire de maladie, afin de comprendre leurs objectifs à la lumière des explications fournies.
  • Etablir un plan de soin commun, en partenariat avec patient.e et proche-aidant.e.s. Ce plan vise à espérer le meilleur, tout en se préparant au pire ; il intègre l’incertitude inhérente aux différentes trajectoires.
  • Communiquer le plan à toutes les personnes pouvant être impliquées.

Visionnez la vidéo et n’hésitez pas à l’utiliser pour former étudiants et professionnels, ou à la projeter durant des conférences. Le BMJ a également posté la vidéo sur Twitter et Facebook, où elle comptabilise plusieurs milliers de vues.

L’objectif de notre Groupe Référent EAPC sur les Soins Primaires étant le plaidoyer en faveur de la mise en œuvre précoce des soins palliatifs dans tous les lieux de soin, et en particulier sur le lieu de vie des personnes (domicile, établissements sociaux et médico-sociaux, …), nous serions ravi.e.s si quelqu’un souhaitait traduire la vidéo ou bien passer le message dans la langue de son pays. Il n’y a pas de problèmes de droits car nous en sommes les auteurs — nous remercions spécialement le Dr Jordi Amblas-Novellas, gériatre en Catalogne, pour avoir conçu la vidéo sur son temps libre !

Nous travaillons sur une vidéo similaire, destinée aux personnes vivant avec une maladie menaçant le pronostic vital, afin de les aider à comprendre les modalités d’évolution de leur maladie, et leur fournir ainsi des moyens d’action et de préparation par le biais d’une meilleure connaissance des problèmes éventuels et d’un plan de soin anticipé.

Liens et références

Nous remercions Dr Sébastien Moine pour la traduction française de ce billet.

 

Palliativversorgung von der Diagnose bis zum Tod

Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd, members of the EAPC Primary Care Reference Group.

Left to right: Scott A Murray, Sébastien Moine, Jordi Amblàs-Novellas and Kirsty Boyd

Vor Kurzem hat die neu gegründete Referenzgruppe Allgemeinärztliche Versorgung der European Association for Palliative Care (EAPC) eine Analyse im British Medical Journal veröffentlicht, die derzeit sehr populär in den sozialen Medien kommuniziert wird.

Es war uns ein Anliegen in dieser Analyse eine Evidenz-basierte Rationale für die frühe Palliativversorgung zu präsentieren, basierend auf der Tatsache, dass die letzte Lebensphase für manche Menschen wesentlich früher beginnen kann als für andere Menschen. Zudem ist die Sterbephase ein vier-dimensionales Geschehen, in dem alle vier Dimensionen starken Veränderungen unterliegen können.

Um diese Botschaft weiter zu verbreiten haben wir ein 4-minütiges, Video gedreht, welches die Ergebnisse der Veröffentlichung beinhaltet. Das Video ist über die Zusammenfassung der Veröffentlichung frei verfügbar, auch wenn Sie keinen Zugang zum Volltext der Veröffentlichung in der Zeitschrift haben.

Es zeigt, dass die Palliativversorgung bei schnellen Krankheitsverläufen wie beispielsweise Krebs bereits mit dem Zeitpunkt der Diagnose gestartet werden kann, weil bereits dann maßgebliche psychologische Bedarfe oder existenzielle Fragen aufkommen können, die nicht bis zu einem Stadium der Unheilbarkeit aufgeschoben werden sollten.

Auch bei intermittierenden Krankheitsverläufen wie einem nicht-malignen Organversagen zeigt in ähnlicher Weise, dass soziale oder psychologische Bedürfnisse in Phasen akuter Krisen und Dekompensation auftreten, so dass eine frühzeitige und ganzheitliche Planung notwendig sein kann, um diesen Krisen vorzubeugen und sie angemessen zu behandeln.

Das Video zeigt auch, dass soziale, psychologische und existentielle Belastungen im Falle von Krankheitsverläufen mit eher langsamen, kontinuierlichen körperlichen Abbau wie bei Frailty (Gebrechlichkeit) sogar Monate vor der eigentlichen körperlichen Verschlechterung auftreten können. Hier wäre es ebenso angezeigt, diesen Belastungen vorzubeugen und die Resilienz und Unterstützung von Angehörigen zu fördern.

Wir kommen zu dem Schluss, dass seine gute frühzeitige Palliativversorgung:

  • einen frühzeitigen Auslöser definiert, wann diese Versorgungsform gestartet werden sollte.
  • das Gespräch mit Patienten und seinen Angehörigen sucht um den wahrscheinlichsten Verlauf der Erkrankung zu erklären und die darin begründeten Ziele der Palliativversorgung zu verdeutlichen.
  • zusammen mit Patienten und Angehörigen – hoffend auf den besten, aber vorsorgend für den schlechtesten Verlauf – Pläne macht und dabei die Unsicherheit des Verlaufs akzeptiert.
  • diese Pläne mit Allen bespricht, die involviert sein könnten.

Wir freuen uns, wenn Sie das Video ansehen, und geben Sie es gerne weiter an Studierende oder andere Interessierte. Das Video darf gerne weiterverbreitet werden. So hat das BMJ hat das Video auch auf Twitter und Facebook gepostet.

Da das Ziel der Referenzgruppe „Allgemeinärztliche Versorgung“ ist, frühzeitige Palliativversorgung in allen Settings der Gesellschaft zu befördern, insbesondere in der häuslichen Versorgung, wären wir sehr dankbar, wenn jemand das Video übersetzt oder in einer anderen Sprache vertont.

Es gibt keine Copyright-Auflagen, da wir das Video produziert haben und wir danken Dr. Jordi Amblas-Novellas, ein Geriater aus Catalonien, ganz besonders, dass er das in seiner raren Zeit gemacht hat!

Wir werden weiter daran arbeiten, dieses Video für Menschen mit unterschiedlichen lebenslimitierenden Erkrankungen zu produzieren, um ihnen zu helfen den zu erwartenden Verlauf ihrer Erkrankung und den Umgang damit durch vorausschauende Planung zu verstehen.

Links und Referenzen

Unser Dank gilt Prof Dr Nils Schneider & Dr Stephanie Stiel für die deutsche Übersetzung dieser Meldung.

Posted in EAPC ACTIVITIES, EAPC Taskforces/special projects, EDUCATION & TRAINING | Tagged | 1 Comment

New research opportunity on neuropathic pain in cancer patients at the National Cancer Institute of Milan

Dr Augusto Caraceni, European Palliative Care Research Centre, National Cancer Institute of Milan, Italy, describes an important new programme that offers an exciting opportunity for an early stage researcher.

Dr Augusto Caraceni (centre) with members of the research team at the Palliative Care, Pain Therapy and Rehabilitation Unit of the National Cancer Institute of Milan

The Palliative Care, Pain Therapy and Rehabilitation Unit of the National Cancer Institute of Milan is proud to announce its participation in a European Union-funded Marie Curie Programme on neuropathic pain. The PAIN-Net programme, based on a highly innovative platform of training-through-research and strongly committed to such objectives, will support talented and inspired early stage researchers. Their research projects, embedded in an advanced molecule-to-man pain network, will contribute to better understanding individual susceptibility to pain and analgesics responsiveness.

This project is based on a significant clinically unmet need. Neuropathic pain affects five per cent of the general population and 40 per cent of patients with neurological diseases, and has a key role in the pathophysiology of cancer pain that affects up to 50 per cent of patients and 30 per cent of survivors, causing an enormous social burden. Treatments are inadequate with less than 50 per cent of patients achieving 50 per cent of pain relief at best, while up to 30 per cent of cancer pain patients experience insufficient analgesia. Signatures of individual susceptibility to pain and analgesic responsiveness are urgently needed to improve patients’ management. Such advances are expected to originate from integrated clinical, basic science and entrepreneurial research readily translating scientific findings into benefits for patients. To consolidate these aims, a new generation of scientists with wide knowledge in neuropathic pain, focused research skills and experience in the interaction with biotechnology companies is needed.

An opportunity to get involved

Our team is currently looking for a young researcher to join us. We need a researcher to perform a thorough assessment of pain cancer patients to determine the definition and the impact of neuropathic pain in patients with cancer, including clinical and genetic factors associated with the degree of responsiveness to opioid analgesia.

The Early Stage Researcher (ESR) will become familiar with structured pain phenotyping using a validated set of tools for neuropathic pain (Edmonton Classification System for Cancer Pain, Douleur Neuropathique questionnaire, EORTC QLQ-C30, 11-point Lickert Numerical Rating Score, Brief Pain Inventory, Therapy Impact Questionnaire). Moreover, the ESR will learn to use tools for pain diagnosis and quantitative assessment of sensory function (Quantitative Sensory Testing QST).

The PAIN-Net programme will offer a young researcher a unique opportunity to enhance their scientific competency and to prepare for a high-level career in applied research in either an academic or commercial setting.

If you wish to learn more about this project, to apply to this programme, or to recommend the participation of other candidates, please check the vacancy advertisement.

Links

The Palliative Care, Pain Therapy and Rehabilitation Unit of the National Cancer Institute of Milan.

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Tuberculosis at the end of life

Dr Fiona Runacres, Palliative Care Specialist, Supportive and Palliative Care Unit, Monash Health, Melbourne, Victoria, Australia, explains the background to a longer article published in the January/February issue of the European Journal of Palliative Care.

Dr Fiona Runacres

Tuberculosis (TB) is not a common diagnosis for patients admitted to our inpatient palliative care unit in Melbourne, Australia. Which is why it came as a surprise when a patient with lung cancer, admitted for end-of-life care (EOLC), required urgent transfer back to the acute hospital based on a diagnosis of active TB from a sputum culture specimen taken six weeks earlier.

This lady was subsequently managed in a respiratory isolation room under the infectious disease unit in the tertiary hospital, which was quite a contrast to the hospice environment she and her family had become accustomed to. She was not considered well enough to benefit from TB treatment and died two weeks later in the acute setting.

Another patient with a recent history of lung cancer and active TB was subsequently referred to our unit during the same month. These admissions lead us to consider how we, as an inpatient and consultative specialist palliative care service, can manage the EOLC needs of these patients. Furthermore, how can community palliative care services best manage patients with potential or confirmed TB who wish to die at home? Questions were raised as to how other patients, staff and family members could be protected from possible TB exposure in the future.

A review of the literature found most evidence relates to palliative care needs for patients with drug-resistant TB, and is set in countries with a high prevalence of TB. Little is available to guide screening and management by palliative care services for patients in countries such as Australia or the UK, or to guide EOLC provision in hospices or community settings.

Our paper published in the January/February issue of the European Journal of Palliative Care raises several issues for palliative care clinicians and services, e.g. deciding who to screen and how; and managing the risk of infectivity for family and staff members while awaiting results of screening or diagnostic tests. Diagnosis of active TB is not straightforward either, as available screening tests lack sensitivity and specificity,1 and definitive tissue culture tests may take longer to return results (up to six weeks) than some patient prognoses. For patients with TB and other advanced illnesses, such as lung cancer or chronic obstructive pulmonary disease, deciding upon active treatment of their TB is difficult. There may be a benefit for symptom management or to minimise transmission, however balancing treatment with an otherwise palliative approach poses challenges for palliative care clinicians.

In summary, more consideration is needed in the best management of palliative care patients with possible or drug-sensitive TB; determining the care required in various palliative care settings; and the protection of families, staff and communities from a public health perspective.

Links

Reference

1. Dinnes J, Deeks J, Kunst H, Gibson A, Cummins E, Waugh N, et al. A systematic review of rapid diagnostic tests for the detection of tuberculosis infection. Health Technol Assess 2007 Jan; 11 (3) 1-196.

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Tuberculosis at the end of life’ by Runacres F, William L, Ingram A, Franco M, Yoong J and Poon P, published in the January/February 2017 edition of the European Journal of Palliative Care (vol. 24.1). If you have a web-based subscription to the journal, you’ll be able to download this issue, plus all articles in the journal archive – just choose the year ‘2017’. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Look out for more on tuberculosis and palliative care in the future . . .

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog

 

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care | Tagged | Leave a comment

Palliative care in Mainland China: Past, present and future

Dr Ping Guo, Project Manager and Research Associate, Cicely Saunders Institute, King’s College London, UK, explains the background to her longer article published in the January/February issue of the European Journal of Palliative Care.

Dr Ping Guo at the 2nd annual conference of the Chinese Association for Humanistic and Palliative Care

China faces a high demand for palliative care resulting from a rapidly aging population, increased chronic diseases and cancer. Aimed at enhancing quality of life for every patient and family, and ensuring dignified death, palliative care, however, still confronts many obstacles hindering its development in China.

Compared to the UK and other developed countries, palliative care in China is still in its infancy. The slow adoption of palliative care in China is associated with limited national policy and guidelines, lack of financial support and limited professional training. However, the most important reason is the public’s misunderstanding of death and palliative care.

Traditionally, most Chinese people believe that as long as there is a glimmer of hope for living a few days longer, it is worth paying a huge price, or even dignity, for it. This is reflected in a famous Chinese saying: To live is better than to die.

Once patients are diagnosed with advanced and end stage diseases, family members usually tend to conceal the patients’ real conditions. Lack of information about their own conditions will significantly increase the psychological burden of the patients, which leads to worse results. Some patients and families think that death is the result of treatment failure, rather than the natural life cycle. Palliative care is normally considered as giving up treatment, giving up hope for life, and not prolonging life.

Dr Ping Guo presenting ‘Measuring complexity of needs and outcomes in palliative care’ at the 2nd annual conference of the Chinese Association for Humanistic and Palliative Care (CAHPC) in Wuhan, China on 17-18 November 2016

Because of these misunderstandings, it becomes even more challenging to accept and implement palliative care in China. Many patients with advanced cancer still suffer from endless surgery, radiotherapy and chemotherapy. Overtreatment not only wastes resources, but it also increases the suffering of the patients, and significant financial burdens of the families. For this group of patients with advanced illness, including cancer and non-cancer conditions, palliative care is the best choice, which should be involved early and throughout the disease trajectory. It can help patients to manage their pain and other distressing symptoms, and also provides psychological, social, spiritual, and information support for patients and their families or carers.

To develop and implement palliative care in China, a key step is to raise public awareness of palliative care and to promote death education at all levels. Changing people’s minds, particularly about life and death, is not easy and takes a long time. In November 2016, I was invited to deliver a plenary talk at the 2nd annual conference of the Chinese Association for Humanistic and Palliative Care (CAHPC) in Wuhan, China. Raising public awareness and promoting death education was one of the main topics of discussion.

As reported in the 2015 quality of death index, China’s poor performance in palliative care provision has raised concern about its quality. China urgently needs palliative care leaders. With government support, I believe that more doctors, nurses, other allied health professionals and volunteers in China will be specially trained to work and research in the field of palliative care.

Exploring the appropriate models of palliative care applicable in China has a long way to go. Traditional Chinese medicines have unique advantages in reducing pain and improving quality of life, which could be integrated into routine palliative care practice. However, their effectiveness and cost-effectiveness need to be further investigated in future research.

Chinese colleagues should work collaboratively with colleagues across the world to achieve our common goal – helping patients to live as well as possible until they die, and to die with dignity.

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Exploring the challenges of implementing palliative care in China’ by Wei Liu and Ping Guo, published in the January/February 2017 edition of the European Journal of Palliative Care (vol. 24.1). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog

EJPC Palliative Care Development Award 2017 – Last chance to nominate before closing date on 31 March

Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Click here to nominate. Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. The 2017 Award will be presented at the 15th World Congress of the EAPC in Madrid, Spain (18–20 May 2017). Deadline for applications: 31 March 2017.

 

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care | Leave a comment

Impacto del mundo hispano hablante en cuidados paliativos: Una entrevista con Eduardo Bruera Impact of the Spanish-speaking World on Palliative Care: An interview with Eduardo Bruera


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL


NEW SERIES: Ahead of the 15th World Research Congress of the European Association for Palliative Care, we shall be publishing posts from our plenary speakers . . . 

Today, Professor Eduardo Bruera, Professor and FT McGraw Chair in the Treatment of Cancer, The University of Texas MD Anderson Cancer Centre, USA, tells us more about his work in palliative care. In this interview, he gives a glimpse of the speech he will give at the Opening Ceremony of the congress in Madrid on Thursday 18 May 2017.

Palliative care has been part of your life for many years now – can you tell us how, why and when you began to work in palliative care?

Professor Eduardo Bruera

Eduardo Bruera: I began working in palliative care in the early 1980s while I was training in medical oncology. I was disappointed with the strong emphasis on understanding and managing cancer with limited interest on developing new knowledge of how to care for the patient carrying that cancer. There has been considerable progress since then but there is still a long way to go before we can fully integrate palliative care into cancer care.

Given your personal links with Latin America and your strong links with the Spanish-speaking palliative care community, can you tell us about the countries that have surprised you most and the countries where you feel the most progress has been made in palliative care?

EB: There has been considerable progress in the establishment of programmes both institutional and community-based in Spain and Latin America, especially during the last 10 years. However, the majority of those programmes have been ‘bottom up’ rather than as a result of a ‘top down’ process for planning and execution at the government and/or university level. As a consequence, the development level is extremely variable. There are some highly recognised universities and hospitals with fully established clinical and academic palliative care programmes while others, similarly well recognised, have no palliative care at all. The Spanish Palliative Care Association (SECPAL) and the Latin American Palliative Care Association (ALCP) have made great progress in congregating many of these programs and individuals and they have also started with significant success the process of engaging both governments and universities.

Looking back on your career to date what has been your biggest achievement in palliative care?

EB: There are three aspects that are important:

  • Our team has helped develop the body of knowledge in palliative care through research and publications;
  • We established clinical programs of excellence that have served as templates for other clinical teams willing to develop palliative care;
  • We have mentored fellows, junior faculty, and visiting colleagues from around the world who then went on to become clinical and academic leaders in the field. This third aspect is the one that has been a particular source of satisfaction.

What do you see as the main challenges facing palliative care globally?

EB: Our discipline needs to complete its academic development. We are quite behind other medical and overall clinical disciplines in the United States, Canada, Europe, and in the Spanish-speaking world. We need to impress on our government and university authorities that while a considerable proportion of palliative care delivery can be done in the community or by primary care physicians there are also a significant number of situations that are extremely complex and require interdisciplinary tertiary teams to deliver care. These teams not only need access to resources to conduct the care of these very complex patients and family members, but they also need to have the resources to conduct research on new treatments and to educate the new generation of specialists and also transfer knowledge to other non-palliative specialties. Palliative care needs to have the same recognition and academic size as any of the other medical specialties in the world.

And what is your biggest hope for the future of palliative care?

EB: My biggest hope for the future of palliative care is that it will become part of the clinical repertoire of every clinician seeing seriously ill patients, and that ultimately all of us and our families will receive palliative care throughout the trajectory of our illness and especially near the end of our lives.

Outside of palliative care, what do you like to do to relax and unwind?

EB: My favourite activities outside of work are reading, classical music, running, and eating spicy food.

We know that you have been to Madrid before; do you have any tips on the ‘must-see sights’ for delegates attending the congress?

EB: I would advise our delegates to visit the museum El Prado, walk around the older part of Madrid, watch a soccer game in one of the two wonderful professional stadiums, and, if they speak Spanish, do not miss watching the extraordinary theatre offered on multiple occasions around downtown.

Read more posts from contributors to the 15th EAPC World Congress in the coming weeks.

Join us in Madrid for the 15th World Congress of the European Association for Palliative Care
Professor Bruera will be speaking on the Impact of the Spanish-speaking World on Palliative Care / Contribución del mundo hispanohablante a los Cuidados Paliativos in the Opening Ceremony at 9h20 to 9h35 on Thursday 18 May 2017. To view the full congress programme and to register, please visit the congress website.

 

 

Impacto del mundo hispanohablante en cuidados paliativos: una entrevista con Eduardo Bruera

NUEVA SERIE: Antes del XV Congreso Mundial de la Asociación Europea de Cuidados Paliativos, publicaremos posts de los conferenciantes de las sesiones plenarias . . . 

Hoy, el Profesor Eduardo Bruera, Profesor y Catedrático (FT McGraw) en el Tratamiento del Cáncer, de la Universidad de Texas MD Anderson Cancer Center, Estados Unidos, nos cuenta más sobre su trabajo en cuidados paliativos. En esta entrevista, nos ofrece un anticipo de los que será su discurso para la ceremonia de inauguración del Congreso de Madrid, el jueves 18 de mayo de 2017.

Professor Eduardo Bruera

Los cuidados paliativos han sido parte de su vida durante muchos años ya – nos podría contar; ¿cómo, porqué y cuando empezó a trabajar en cuidados paliativos?

Eduardo Bruera: Comencé a trabajar en cuidados paliativos a principios de los ochenta al tiempo que me formaba en oncología médica. Estaba decepcionado al ver el énfasis que se ponía en entender y manejar el cáncer como tal, y el escaso interés por desarrollar nuevos conocimientos sobre el como cuidar al paciente que sufría ese cáncer. Desde entonces ha habido un progreso considerable, pero queda un largo camino por recorrer para integrar plenamente cuidados paliativos en los cuidados oncológicos.

Dados sus vínculos personales con Latinoamérica y la comunidad paliativa hispanohablante; ¿nos podría decir algo sobre los países que más le han sorprendido y dónde entiende que ha existido un mayor progreso de los cuidados paliativos?

EB: Ha habido un progreso notable en el establecimiento de programas, tanto a nivel institucional como comunitario en España y Latino América, especialmente en los últimos diez años. Sin embargo, la mayoría de estos programas se han implementado de “abajo a arriba”, más que de “arriba a abajo” en lo que se refiere a planificación e implementación a nivel gubernamental y/o universitario. Como consecuencia, el nivel de desarrollo es extremadamente variable. Existen algunas universidades y hospitales muy reconocidos, con programas de cuidados paliativos perfectamente bien establecidos, mientras que otras, igualmente reconocidos, no tienen nada de cuidados paliativos. La Sociedad Española de Cuidados Paliativos (SECPAL) y la Asociación Latinoamericana de Cuidados Paliativos (ALCP) han realizado grandes avances en la congregación de muchos de estos programas e individuos, y han iniciado también de modo muy exitoso el proceso de implicar tanto a gobiernos como universidades.

Mirando atrás en su carrera hasta la fecha, ¿cuál diría que ha sido su mayor logro en cuidados paliativos?

EB: Hay tres aspectos que son importantes:

  • Nuestro equipo ha contribuido en el desarrollo de un cuerpo de conocimiento sobre cuidados paliativos a través de la investigación y las publicaciones;
  • Establecimos programas clínicos de excelencia que han servido como modelos para otros equipos clínicos cuyo deseo era también el desarrollo de cuidados paliativos;
  • Hemos formado estudiantes, profesores jóvenes y colegas visitantes de todo el mundo que luego se han convertido en líderes clínicos y académicos en el campo. Este tercer aspecto es el que ha sido una fuente particular de satisfacción.

¿Cúales cree que son los retos principales a los que se enfrenta cuidados paliativos a nivel global?

EB: Nuestra disciplina necesita completar su desarrollo académico. Estamos bastante por detrás de otras disciplinas médicas, especialmente en los Estados Unidos, Canadá, Europa, y el mundo hispanoparlante. Necesitamos persuadir a nuestras autoridades gubernamentales y universitarias de que si bien una proporción considerable de la atención paliativa puede ser realizada en la comunidad o por médicos de atención primaria, también hay un número significativo de situaciones que son extremadamente complejas y que requieren equipos terciarios interdisciplinarios para brindar esta atención. Estos equipos no sólo necesitan acceso a recursos para cuidar de estos pacientes y familiares complejos, sino también a recursos para realizar investigación en nuevos tratamientos y educar a las nuevas generaciones de especialistas, así como para transferir el conocimiento a las especialidades no paliativas. Los cuidados paliativos necesitan tener el mismo reconocimiento y peso académico como cualquier especialidad médica del mundo. 

Y ¿cuál es su mayor esperanza para el futuro de los cuidados paliativos?

EB: Mi mayor esperanza para el futuro de los cuidados paliativos es que éstos se conviertan en parte del repertorio clínico de cualquier clínico atendiendo pacientes seriamente enfermos, y que en última instancia todos nosotros y nuestras familias recibamos cuidados paliativos en la trayectoria de nuestra enfermedad, sobretodo en las etapas cercanas al fin de la vida.

Fuera de cuidados paliativos, ¿qué le gusta hacer para relajarse y evadirse?

EB: Mis actividades favoritas fuera del trabajo son la lectura, la música clásica, correr y la comida picante.

Sabemos que ha estado en Madrid antes; ¿tiene alguna recomendación sobre los sitios de “visita obligada” para los asistentes al congreso?

EB: Recomendaría a los asistentes que visiten el museo deI Prado, pasear por el la parte histórica de la ciudad, ver un partido de fútbol en uno de los dos maravillosos estadios profesionales y si hablan español, no se pierdan las obras de teatro que se ofertan constantemente por el centro de la ciudad.

 

Únase a nosotros en Madrid para el XV Congreso Mundial de la Asociación Europea de Cuidados Paliativos
El Profesor Bruera hablará sobre la Contribución del mundo hispanohablante a los Cuidados Paliativos en la ceremonia de apertura de 9h20 a 9h35 el Jueves 18 de mayo de 2017. Para ver el programa completo del congreso y para registrarse, por favor visite el sitio web del congreso.

Read more posts from contributors to the 15th EAPC World Congress in the coming weeks.

Nuestro agradecimiento a Eduardo Garralda, del equipo de investigación ATLANTES, Universidad of Navarra, España, por la traducción al español de este post.

 

 

 

 

 

 

 

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EAPC Board Matters: Board members of the European Association for Palliative Care meet in Barcelona

Professor David Oliver, University of Kent, UK, and a board member of the European Association for Palliative Care, describes key activities that were discussed at the latest board meeting held in Barcelona, Spain.

Sagrat Cor Church on Mount Tibidabo, Barcelona

The EAPC Board’s most recent meeting took place in Barcelona on 14 to 16 March 2017. The EAPC is currently in a period of transition. Last year, the board made a strategic decision to open an office in Belgium and therefore the meeting in Barcelona focused on this move and ensuring a smooth transition.

Membership

The board discussed ways that we might better engage with our members, both as individuals and also through the national associations. We would be interested to hear from members with ideas about how we can improve engagement.

EAPC congresses

Madrid 2017
The 15th EAPC World Congress will take place in Madrid from Thursday 18th to  Saturday 20th May 2017. The preparations are going well and more than 2,000 delegates have registered so far – join us in Madrid and register now! An EAPC Volunteering Charter will be launched in Madrid – further details of how to sign up to this charter will be available closer to the time of the congress.

Bern 2018
The 10th World EAPC Research Congress will be held in Bern, Switzerland from 23rd to 26th May 2018.

Berlin 2019
The 16th EAPC World Congress will be held in Berlin from 16th to 18th May 2019.

Please note these dates for your diary!

World Health Organization (WHO)

There is increasing contact and links with WHO in Europe, and over the coming months there will be further links and involvement in this important area of influence.

Board members in Barcelona. Front row left: Julie Ling (EAPC CEO), Paul Vanden Berghe, Danila Valenti, Catherine Walshe, Anne de la Tour, Irene Murphy, Phil Larkin (EAPC President).
Back row left: Christoph Ostgathe, Josep Porta Sales, David Oliver, Carlo Leget

European Union

Professor Phil Larkin, EAPC President, recently spoke at a meeting at the European Parliament on bioethics and human dignity. (Read the post on the EAPC Blog). This involved many Members of the European Parliament (MEPs) and he was able to speak on the role of palliative care. Phil Larkin is also visiting the Council of Europe in June at Strasbourg.

The EAPC is represented at the Civil Society Forum on Drugs – which considers the management of drug addiction, including rehabilitation and drug control. In various European Union documents, and in response to the United Nations General Assembly on the World Drug Problem, the need to ensure that opioids are readily accessible for people with pain has been stressed. This work continues, in collaboration with the Civil Society Forum. Read more about this on the UN Commission on Narcotic Drugs Blog.

Social media

Our social media team continue to keep our members and followers in touch with all of the latest news through our blogs, Facebook, LinkedIn and Twitter. The EAPC Blog has an average number of daily views of 231. Our number of Twitter followers continues to rise; currently we have almost 4,000 followers from 27 countries

Everyone is welcome to subscribe to our twice-weekly blog posts or to link with us through our social media streams. (See links below).

EAPC Taskforces

There are currently twelve active EAPC taskforces (all at various stages of their work) looking at various aspects of palliative care.

  • Spiritual care
  • Bereavement
  • Mapping in long-term care
  • Nurse education
  • Children’s palliative care
  • Social work
  • Occupational therapy
  • International Medical Education
  • National and international benchmarks to evaluate undergraduate training in palliative medicine
  • Call to action on undergraduate education
  • Development of core European Palliative Care Curriculum requirements
  • Undergraduate medical palliative care education

Two new taskforces were approved at this board meeting:

  • Palliative care provision for prisoners
  • International collaboration for the development of healthcare professional guidelines in palliative care.

A taskforce is a time-limited group looking at a specific area of care, with a clear planned outcome – such as a report or white paper. There’s a special section on the EAPC website with detailed information about each taskforce.

Reference Groups

There are now four EAPC Reference Groups:

These groups usually arise from a taskforce and are able to continue to look at developments within a specific area of palliative care. They will usually have links with other European organisations; for example, the Neurology group has close links with the European Academy of Neurology and the Intellectual Disabilities Group with the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSID). These groups will aim to develop these links further and seek joint projects, including policy and research interests. (View more information on EAPC Reference Groups here).

The board welcomes comments and suggestion from members and seeks to look at the development of palliative care throughout Europe, and in collaboration with other organisations across the world. This is the opportunity to become more involved – take it now and use the EAPC Blog, Twitter, Facebook and LinkedIn to contact us.

Everyone is welcome to contact the President, Professor Phil Larkin, or the Chief Executive Officer, Julie Ling. Please email us here.

Join the EAPC palliative care social media community

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A shorter average length of stay in a UK hospice – how is this happening?

Dr Carmen Chan, a GP in training, and Dr Michael Tapley, Medical Director and Palliative Care Consultant at Willow Wood Hospice, Ashton-under-Lyne, UK, explain the background to their longer article published in the January/February issue of the European Journal of Palliative Care.

Dr Carmen Chan

Being a GP (general practitioner) trainee has allowed me (Carmen Chan) to experience care from a number of different settings – from the first GP contact to admission through hospital Accident and Emergencies to the end of life care at home and in a hospice. I spent several months at Willow Wood Hospice, Ashton-under-Lyne, UK, as part of my GP training to gain experience in palliative care where I had the opportunity to work with and support the hospice team. I soon realised that many patients were here one week and gone the next, often dying within a few days of their inpatient hospice admission. I was already aware of the Hospice Transfer Project 1 and wondered if this had an impact on the length of stay.

Dr Mike Tapley

The Hospice Transfer Project was jointly established between Willow Wood Hospice and Tameside General Hospital back in 2011. The aim was to identify the dying patient in the acute hospital setting and giving them the option of being transferred to the hospice for end of life care. I had first-hand experience of this project whilst working at the hospital and recognise the importance of the close relations and how easy it is for hospital teams to liaise with the palliative care team to arrange transfer to the hospice. The aim is to treat patients at end of life in a setting other than a busy acute medical ward; be it at home or at the hospice if they preferred.

At the hospice, we wanted to review the Hospice Transfer Project and see if patients were being correctly identified as dying and being transferred appropriately. When the project first started in 2011, there were 19 referrals over one year from the acute medical wards and this has grown to 114 inpatient admissions from medical wards from July 2015 to December 2015. We found that patients were being identified correctly as dying, hence this led to the average length of stay at Willow Wood Hospice being much shorter than the UK national average.

We explore this further in our article ‘A shorter average length of stay in a UK hospice – how is this happening?’ and share the experience of the Hospice Transfer Project several years down the line. Despite most inpatients having a short length of stay at the hospice, the hospice transfer project gives them the opportunity to die in a preferred setting with holistic care. Feedback from patients relatives included:

“helps all of us to remember Mum’s last days in such a caring and beautiful place” and “you made [patient’s name] last days comfortable and peaceful with the utmost dignity and respect,” which shows, despite the short stay, it has a positive impact for the patient and family.

References

  1. Tapley M, Pilling L, Jolley D, Daniels AM, El-Mahmoudi B. Hospice transfer for patients at the end of life: Part 1. Nursing Standard 28, 8, 42-48. October 2013.

Read the full article in the European Journal of Palliative Care

This post relates to a longer article, ‘A shorter average length of stay in a UK hospice – how is this happening? by Carmen Chan, Michael Tapley, published in the January/February 2017 edition of the European Journal of Palliative Care (vol. 24.1). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

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

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog

 

EJPC Palliative Care Development Award 2017 – nominations form now online.

Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Click here to nominate. Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. The 2017 Award will be presented at the 15th World Congress of the EAPC in Madrid, Spain (18–20 May 2017). Deadline for applications: 31 March 2017.

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, RESEARCH | Tagged | Leave a comment