Management of malignant bowel obstruction with Lanreotide for a community palliative care patient

Dr Kate Markham, Dr Shan Shan Vijeratnam and Dr Pia Amsler, Isabel Hospice, Welwyn Garden City, UK, explain the background to their longer article published in the November/December edition of the European Journal of Palliative Care.

Dr Kate Markham

Dr Kate Markham

We are doctors from Isabel Hospice, providing specialist palliative care in the community in southern England. We see many patients with malignant bowel obstruction and would like to present two case reports outlining the potential for treatment with three to four weekly depot injections of Lanreotide. This method of slow-release injections could be used for patients who are mobile, in order to allow freedom from having one or more syringe drivers, and potentially higher quality of life.

Malignant bowel obstruction is a common distressing complication in patients with advanced abdominal or pelvic carcinoma.(1) In most patients with advanced disease, surgical options such as a colostomy or venting gastrostomy may not be feasible due to peritoneal carcinomatosis, ascites, multiple co-morbidities and poor performance status.(2) This can pose a challenge in such cases with advanced disease to healthcare professionals. The medical management of bowel obstruction is complex. There is limited data to support Lanreotide, a long-acting somatostatin analogue, in this situation.(3) In our two case reports, we found that Lanreotide can significantly improve the symptoms and quality of life of the patients who were both ambulatory with an undetermined prognosis despite advanced intra-abdominal disease. We believe that Lanreotide can be an effective treatment in the community in this particular group of patients.

We would advise consideration of the use of somatostatin analogues for patients in the community with malignant bowel obstruction if other medical treatments fail. We recommend that a trial of Octreotide be given via a syringe driver for one week in order to assess whether a patient would respond to somatostatin analogues. Once proven to be effective, the drug can be switched to the longer-acting Lanreotide, which can then be administered every three to four weeks via depot injection (slow release muscular injection), depending on the clinical picture.

However, the expense of somatostatin analogues remains an issue. An injection of Octreotide acetate of 200microgram/ml costs GB£70 (79 Euros). A depot injection of Lanreotide 30mg costs around GB£320 (359 Euros), 60mg costs around £550 (618 Euros) and 90mg costs over £730 (820 Euros).(4) Depending on the Octreotide dose required, a single monthly Lanreotide injection can therefore be more cost-effective, both in terms of nursing time to attend to the syringe driver daily and for the medication itself.

We believe that Lanreotide can be an effective treatment in the community in this particular group of patients. Once-monthly injections of Lanreotide can offer patients more freedom with their activities of daily living, and improve quality of life, without having to use syringe drivers at all times. Wider use of such treatment may reduce the need for admission to hospice or hospitals for symptom management and should be tailored to patients’ individual needs and wishes.

Lanreotide has proven to be a viable alternative to Octreotide in both our patients. Although expensive, the use of Lanreotide should be considered in ambulatory patients with advanced disease who are not expected to die within a few weeks.

References

  1. Mercadante S. Assessment and management of mechanical bowel obstruction. In: Portenoy RK, Bruera E, eds, Topics in Palliative Care. Vol 1. New York, NY, Oxford University Press; 1997: 113-130
  2. NHS palliative care guidelines, 2015. Accessed March 2016
  3. Marini P, Blumbery J, Landau Q, et al. Symptomatic treatment with lanreotide microparticles in inoperable bowel obstruction due to peritoneal carcinomatosis, a randomized, double-blind, placebo-controlled phase 3 study. J Clin Oncology 2012: 30; 4337-4343.
  4. Twycross R, Wilcock A, Howard P. Palliative Care Formulary. 5th ed. Nottingham: Palliativedrugs.com Ltd, 2014.

4_cover_2-jpgRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Managing malignant bowel obstruction with lanreotide by K Markham, S Shan Vijeratnam and P Amsler, published in the November/December 2016 edition of the European Journal of Palliative Care (vol. 23.6). 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

ejpclinkedinEJPC 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, Medicine, SYMPTOM CONTROL | Tagged | Leave a comment

Caring for patients’ rooms and souls: How cleaning staff communicate and cope with seriously ill and dying patients

Professor Gerhild Becker, Chair of the Department of Palliative Care, University Medical Center Freiburg, Germany, explains the background to the longer article selected as ‘Editor’s choice’ in the January issue 2017 of Palliative Medicine.

gb-photo

Professor Gerhild Becker

The impulse for our study was a conversation between a patient and a cleaning woman. It’s a pleasure to talk to this lady, the patient told us during the ward round. She knows about life and she understands about listening.

Thus, the idea for a study arose.

Caring for seriously ill patients and especially those receiving palliative care advocates a multidisciplinary team approach. Not only are physicians and nursing staff confronted with the challenge of caring for dying patients, other hospital staff members also have frequent patient contact and feel a commitment to care for and comfort dying patients and their families.

But, what is the role of cleaning staff on a hospital ward apart from cleaning rooms? Research on this topic is lacking. How may cleaning stuff help to improve the overall care of patients? Are they providing something like ‘low-threshold soul care’ as a side effect of their job? And, if so, how do they manage it? How do they cope? Are they aware of their role?

To answer these questions we chose a sequential mixed methods design. At our University Medical Center in Southern Germany, we recruited cleaning staff and also cleaning management staff for interviews and focus group discussions. Interviews and focus group discussions were content analyzed and results were used to create a questionnaire which was given to all cleaning staff (n=240) working at our clinic.

In interviews and focus group discussions, cleaning staff described interactions with patients as an important and fulfilling aspect of their work. In total, 124 questionnaires were returned. About half of participants indicated that patients talk with them every day, on average for one to three minutes. Although the most common topics of conversation include small talk such as weather and family, patients also discussed their illness and, occasionally, thoughts regarding death. When patients addressed illness and death, cleaning staff often felt uncomfortable and helpless.

Results of our study showed that cleaning staff perceive that they have an important role in the clinic – not only to clean but also to support patients. Serious illness frightens patients and isolates them from their support communities when they need them most. Likewise, patients seem to appreciate being able to speak openly with cleaning staff. Yet, it appears that cleaning staff may benefit from additional training in how to communicate with patients about sensitive issues such as illness.

We hope that this research may help to make us all more aware that caring for seriously ill and dying patients is a challenge for various occupational groups within the hospital setting, who come into contact with dying patients during their day-to-day work.

pmja_31_1-coverRead the full article in Palliative Medicine

This blog post relates to the longer article, Tidying Rooms and Tending Hearts: An Explorative, Mixed-Methods Study of Hospital Cleaning Staff’s Experiences with Seriously Ill and Dying Patients’ by Karin Jors, Svenja Tietgen, Carola Xander, Felix Momm and Gerhild Becker, published in Palliative Medicine 2017, Vol. 31(1) 63–71. First published online: May 9, 2016. Article first published online: May 9, 2016; DOI: 10.1177/0269216316648071.

Download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog

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

Use of antibiotics in Singapore

mugshot-eng-koonDr Eng Koon, Division of Palliative Medicine, National Cancer Centre Singapore, explains the background to his longer article, published in the current edition of the European Journal of Palliative Care – a reminder that even common (and seemingly uncomplicated) treatments need to be carefully considered in palliative care.

Imagine yourself having the flu. You speak to your colleagues and all of them swear by having antibiotics as essential. Instinctively, (and with less than subtle probing by your anxious spouse), you ask your doctor for antibiotics although he says it is likely that it’s a viral infection. You recover within a week (albeit with some loose stools), and obviously you are glad that you asked for antibiotics in the first place.

Now imagine instead that you developed massive diarrhoea from your antibiotics requiring hospital admission and parenteral hydration. As you are discharged three days later you comfort yourself that the antibiotics may have aided your recovery from flu. But as you are walking out of the hospital your doctor tells you:

“You know, I wouldn’t recommend you take the same antibiotics again as they caused such a bad side effect. And to be honest, I think your flu might have resolved earlier if you hadn’t been so dehydrated.”

As your heart sinks, along with a part of your self-esteem, try to answer this question: “Would you want to take antibiotics for yourself (or your family) if someone develops flu again?”

It is common for patients and caregivers to struggle to understand exactly what medical intervention is being offered. For example, to ‘simplify’ matters, Cardiopulmonary Resuscitation (CPR) is commonly prescribed simply to facilitate chest compressions or endotracheal intubation – a tube in the windpipe to help one breathe. In contrast, the option of giving antibiotics is something I find relatively easy to offer and which is then usually accepted. I can almost imagine patients and family members having a thought bubble immediately after they hear the word ‘antibiotic’, containing phrases like “Ah yes, for infection,” and “Of course I would take it and kill the darn bacteria.”

As you attempt to answer the question above, imagine that now you are a hospice patient with a prognosis of less than three months. Your swallowing function is deteriorating and you will likely require intravenous antibiotics the next time you develop a fever. Your veins are burnt out from chemotherapy and you hate venepuncture. Would your answer differ?

The offer of antibiotics for hospice patients is thus not as straightforward as it seems, especially when the evidence supporting antibiotic use for hospice patients remains elusive with regards to mortality benefits, and at best weak for symptom alleviation. At the end of the day, clinical practice will have to be guided by the goals of care of the patient, balanced by the burdens of treatment.

Physicians should continue to be cognizant of their prescribing patterns and recognize the limitations of this powerful tool that was first presented to us more than 50 years ago.

4_cover_2-jpgRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Use of antibiotics in Singapore by Ong Eng Koon and Chong Poh Heng, published in the November/December 2016 edition of the European Journal of Palliative Care (vol. 23.6).

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

 

ejpclinkedinEJPC 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, SYMPTOM CONTROL | Tagged | Leave a comment

EJPC Palliative Care Policy Development Award welcomes nominations

Professor Julia Riley, Editor of the European Journal of Palliative Care, encourages nominations for this year’s EJPC Award. Professor Riley is also Clinical Lead, Coordinate My Care; Palliative Care Consultant, Royal Marsden and Royal Brompton Palliative Care Service, The Royal Marsden NHS Foundation Trust, London, UK.

Professor Julia Riley

Professor Julia Riley

The 15th World Congress of the European Association for Palliative Care in Madrid will mark the fourth time that the prestigious EJPC Palliative Care Policy Development Award acknowledges another champion in the field.

These champions have made substantial contributions to policy development through their research or clinical practice or as policy activists.

Now is your time to make a nomination for 2017’s award. In previous years it has been both humbling and exciting to read of the achievements of many of our colleagues all over the world, some of whom we knew and others who had quietly worked in the background, achieving great things. By making a nomination, you will highlight exemplars from whom we can all learn. Each nominee will be informed, which in itself is an acknowledgement and a way of raising the profile of those who are mentors, masters, teachers and gurus in palliative care. A winner will then be selected.

The winner will join a group of esteemed award recipients:

Dr Olga Usenko

Olga Usenko

2014 Dr Olga Usenko – Transformation of pain and palliative care in Russia. (You can read an interview with Olga here as well as her post on the EAPC Blog).

 

 

 

Dr Emilio Herrera

Emilio Herrera

2015 Dr Emilio Herrera – New models of care in Spain and Columbia. (Read Emilio’s post on the EAPC Blog about the work that led to his award).

 

 

 

dublincherny

Nathan Cherny

2016 Prof Nathan Cherny – A pioneer in the integration of oncology and palliative care. (Read an interview with Nathan here.)

Please make your nominations now
We all need to hear about these remarkable people and discover what work they are doing globally to enable more patients to die with dignity.

How to write a nomination
Try to convey in your nomination the passion that the person you are nominating has demonstrated for their cause. I hope to be awarding the prize to your colleague at the closing ceremony of the 15th World Congress of the EAPC in Madrid next May. But most of all I look forward to being inspired by the work of the nominees.

ejpclinkedinHow to apply for the EJPC Palliative Care Policy Development Award
Visit the nominations website and complete your nomination online. Deadline for nominations: 31 March 2017.

 

new-new-eapc17_header_960x211The EAPC wishes all our readers a very happy New Year . . .

We hope to see you at the 15th EAPC World Congress – Progressing Palliative Care – in Madrid. Take advantage of the Early Bird Registration rate offering significant savings for delegates. But hurry, Early Bird Registration closes on 15 February 2017. You can still register after this date on the congress website but at higher rates. You can also book your accommodation via the congress website.

 

 

 

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

A Christmas message from the EAPC Un mensaje de Navidad de la EAPC Un message de Noël de la part de l’association européenne de soins palliatifs (EAPC)


Haga clic aquí para obtener la versión en español


Cliquez ici pour la version en français

Professor Phil Larkin, President, and Dr Julie Ling, Chief Executive Officer, the European Association for Palliative Care

Phil Larkin with members of the EAPC Board. Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta-Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)

Phil Larkin with members of the EAPC Board.
Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta-Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)

Most organisations like to celebrate at Christmas with gifts, or parties – a token to thank everyone involved for their hard work and accomplishments in the year (memo to the EAPC team – don’t get hopeful – this is not announcing large, wrapped packages arriving at your door!). However, as turkeys tremble and the frantic search for that special present begins, Julie and I wanted to offer a few words of thanks as we move towards this festive season.

First of all, thank you for what you continue to do for the development of palliative care both nationally and internationally. Your work, whether clinical, academic or through research, makes the difference to people’s lives at critical moments when they need it most. Thank you especially to those of you who will spend time over the Christmas and New Year holiday away from your families, ensuring the best possible care for patients and families.

Thank you for your support and encouragement to the EAPC team as we make the important changes to the organisation which will help to secure our future in coming years. Our new Brussels office will be fully functioning in January and you will see that some of administration will move from Italy. This has taken a considerable amount of careful planning and special thanks to Julie and Paul Vanden Berghe, our Belgian board member, who ably assisted us in this.

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake running the stand at the 9th EAPC World Congress, Dublin

EAPC works because of the commitment and dedication of the people in the background who manage our day-to-day functions. We have had many levels of help in the past year (Silvana, Stella, Catherine and Eleanor – thank you). We would like to take this opportunity to offer special thanks to Amelia for her help throughout the year and for the many years that she has worked tirelessly for the EAPC. Amelia will retire in 2017 and we are ever grateful for her management and guidance. Thank you. In January, we will welcome Eleanor Blake as Amelia’s replacement. Eleanor joins us with a strong background in administration and will work with Amelia to ensure a smooth transition.

EAPC continues to be a world leader in palliative care. The success of the Dublin Research Congress earlier this year will no doubt be equalled by our 15th EAPC World Congress in Madrid which takes place 18 to 20 May. The abstracts are in and the juries are assessing. Again, thank you to the Madrid Scientific Committee – we know that this will be a wonderful event for the palliative care community. Please book early to get the ‘Early Bird’ rates (Early Bird ends 15 February 2017). We are also delighted to announce that we have simultaneous translation into Spanish for all plenary sessions throughout the congress.

When Julie and I set out on this journey at the EAPC congress in Copenhagen, we wanted to make sure that our legacy was one where members felt able to contribute to the work and were heard in terms of ideas, suggestions and feedback. As President, I intend to hold a meeting for the Chairs/Presidents of our collective member associations in Madrid (letters are on the way), but we encourage you to feel free to give us your views and opinions to enable us to make the EAPC stronger and more efficient.

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert Front row left to right: Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Missing from the photo: Eduardo Garralda and Julie Ling)

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert
Front row (l-r): Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Team members missing from the photo: Eduardo Garralda and Julie Ling)

As always, the Social Media team deserve special mention. They grow in strength and under Avril’s guiding hand, have in many ways become the ‘face’ of EAPC. We know they are taking a well-deserved break over the holiday but will be back in action on 9 January 2017.

I have heard it said that EAPC is a family and at this time of year, time spent with family is important. Like many families, we need someone to organise us and make sure that we keep on track, this is a role that Julie readily and efficiently takes on. With both Julie and I living and working in Dublin I can at least say thank you to her personally for her work on behalf of EAPC in the last year (still no shiny wrapped package, Julie!) but our heartfelt appreciation for all you do.

And finally the Board of Directors. Your contribution to the work we do makes all the hard work worth it. Being an EAPC board member requires commitment, vision and the ability to breathe deeply when yet another email comes with a request. We could not do it without you.

And so, wherever you are in the world this festive season, we wish you peace and happiness and we look forward to a New Year of work for EAPC and the making a meaningful contribution to the future of palliative care. And finally we really hope to see you in Madrid …

Acknowledgement: Our grateful thanks to Caroline Tête and Eduardo Garralda for translation of this post into French and Spanish respectively, and to Chris Jackson for the photographs.

The EAPC Blog is now taking a break until 9 January 2017.

 

new-new-eapc17_header_960x211Welcome to Madrid 2017. Visit the congress website for all the latest information. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #EAPC2017

 

Un mensaje de Navidad de la EAPC

El Profesor Phil Larkin, Presidente, y la Dra. Julie Ling, Directora Ejecutiva de la Asociación Europea de Cuidados Paliativos

A la mayoría de las organizaciones les gusta celebrar las Navidades con regalos, o fiestas; un obsequio de agradecimiento por el trabajo duro y los logros del año (nota para el equipo de la EAPC – ¡Ni lo soñéis, este no es el anuncio de un regalo gigante tocando a la puerta de vuestras casas!). Sin embargo, estando ya cerca la Navidad y nosotros inmersos en la búsqueda frenética de los regalos perfectos, Julie y yo queríamos dedicaros unas palabras de agradecimiento conforme nos acercamos a esta temporada festiva.

 Phil Larkin with members of the EAPC Board. Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta-Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)


Phil Larkin with members of the EAPC Board.
Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row (l-r): Josep Porta-Sales, Tiina Saarto. Third row (l-r): David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)

En primer lugar, gracias por lo que seguís haciendo tanto por el desarrollo nacional, como internacional de cuidados paliativos. Vuestro trabajo, bien sea clínico, académico, o de investigación, deja huella en momentos críticos de la vida de mucha gente precisamente cuando más lo necesita. Y gracias especialmente a aquellos de vosotros que pasáis las navidades lejos de vuestras familias, asegurando el mejor cuidado posible para pacientes y sus familias.

Gracias por vuestro apoyo y aliento al equipo de la EAPC mientras hacemos los cambios necesarios en la organización. Nuestra nueva oficina de Bruselas estará funcionando a pleno rendimiento en enero, e iréis viendo que parte de la administración dejará Italia. Esto nos ha exigido una planificación muy cuidadosa y debemos un agradecimiento muy especial a Julie y a Paul Vanden Berghe, nuestro miembro belga de la Junta, que tan bien nos ha asistido en todo este proceso.

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake on the stand at the 9th EAPC World Research Congress, Dublin

La EAPC funciona gracias al compromiso y la dedicación de aquellas personas que desempeñan las funciones del día a día. Hemos tenido ayuda en muchos niveles en el último año (Silvana, Stella, Catherine y Eleanor – ¡gracias!). Nos gustaría aprovechar esta ocasión especial para agradecer a Amelia toda la ayuda que nos ha brindado en este y todos los años en los que ha trabajado incansablemente para la EAPC. Amelia se retirará en 2017 y le estaremos eternamente agradecidos por su gestión y guía. Gracias. En enero, daremos la bienvenida a Eleanor Blake como sustituta de Amelia. Eleanor se suma al equipo con una gran experiencia como administrativa, y trabajará conjuntamente con Amelia para lograr una transición suave.

La EAPC sigue siendo líder en cuidados paliativos a nivel mundial. El éxito del Congreso de Investigación de Dublín de este pasado año será sin duda igualado por el XV Congreso Mundial de la EAPC en Madrid que tendrá lugar del 18 al 20 de mayo. Los resúmenes ya han sido entregados y están siendo evaluados por los jurados. De nuevo, gracias al Comité Científico de Madrid – sabemos que este será un evento maravilloso para la comunidad de cuidados paliativos. Por favor, reservad pronto para beneficiaros del precio anticipado (este descuento concluye el 15 de febrero de 2017). Nos complace también anunciar que contaremos con traducción simultánea (inglés-español) para todas las sesiones plenarias durante el congreso.

Cuando Julie y yo emprendimos este viaje, allá por el Congreso de la EAPC de Copenhague, queríamos asegurarnos de que nuestro legado fuese uno en el que los miembros se hubiesen sentido capaces de contribuir con su trabajo, de ser escuchados en sus propias ideas, sugerencias y opiniones. Como Presidente, presidiré una reunión de los directores de las asociaciones miembros de nuestro colectivo en Madrid (las cartas están en camino), pero os animamos a sentiros libres de expresar vuestras opiniones, aquellas que puedan fortalecer y hacer más eficiente la EAPC.

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert Front row left to right: Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Team members missing from the photo: Eduardo Garralda and Julie Ling)

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert
Front row left to right: Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Team members missing from the photo: Eduardo Garralda and Julie Ling)

Como de costumbre, el equipo de redes sociales merece una mención especial. Han crecido y ayudado en la difusión bajo la dirección de Avril y, de varias maneras, se han convertido en la cara visible de la EAPC. Sabemos que ahora se estarán tomando un descanso bien merecido, y estarán de vuelta a la acción a partir del 9 de enero de 2017.

He oído decir que la EAPC es una familia y, en esta época del año, pasar tiempo con la familia es muy importante. Como en muchas familias, necesitamos alguien que nos organice y asegure que seguimos el camino correcto, y este es el rol que Julie viene desempeñando de forma dispuesta y eficaz. Al menos, al estar Julie y yo viviendo y trabajando en Dublín, puedo agradecerle a ella, personalmente y de parte de la EAPC, su labor este último año (¡sigue sin ser un regalo gigante, Julie!). Es, de corazón, un agradecimiento sincero por todo lo que haces.

Y finalmente, la Junta Directiva. Vuestra contribución hace que valga la pena todo el trabajo duro. Ser un miembro de la Junta Directiva requiere compromiso, visión, y la capacidad o habilidad de respirar hondo cada vez que un correo llega reclamando algo. No podríamos hacerlo sin vosotros.

Así que, para concluir, donde sea que estéis en esta temporada festiva, os deseamos paz y felicidad, y esperamos un nuevo año lleno de éxitos y buen trabajo para la EAPC, todo con el fin de contribuir significativamente al futuro de los cuidados paliativos. Y finalmente, esperamos veros en Madrid …

Reconocimiento: Nuestro más sincero agradecimiento a Eduardo Garralda, Programa ATLANTES, Instituto Cultura y Sociedad, Universidad de Navarra, España, por la traducción al español de esta entrada, y Chris Jackson por las fotografías.

El blog de la EAPC se toma un descanso hasta el 9 de enero de 2017.

new-new-eapc17_header_960x211Bienvenido a Madrid 2017. Visita la web del Congreso para la información más reciente. Siguenos en Twitter @EAPCOnlus – Nuestro hashtag oficial del congreso es #EAPC2017

 

Un message de Noël de la part de l’association européenne de soins palliatifs (EAPC)

Professeur Phil Larkin, Président, et Docteur Julie Ling, Directrice générale, Association européenne des soins palliatifs (EAPC)

 Phil Larkin with members of the EAPC Board. Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta-Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)


Phil Larkin with members of the EAPC Board.
Front row: (l-r): Danila Valenti, Christoph Ostgathe, Philip Larkin, Irene Murphy, Mai-Britt Guldin. 2nd row: Josep Porta-Sales, Tiina Saarto. Third row: David Oliver, Anne de la Tour, Daniela Mosoiu, Catherine Walshe, Carlo Leget. (Board member Paul Vanden Berghe is missing from the picture)

La plupart des organisations aiment fêter Noël avec des cadeaux, ou des fêtes – un gage de remerciements pour l’ardeur et la réalisation du travail de chacun au cours de l’année passée (note pour l’équipe de l’EAPC – pas de faux espoirs – n’attendez pas de gros et beaux cadeaux sous votre sapin!). Toutefois, à l’heure où les dindes tremblent et où nous assistons à une course frénétique aux jouets, Julie et moi voulions vous offrir ces quelques mots de remerciements à mesure où nous avançons dans cette période festive.

Tout d’abord, merci pour ce que vous continuez à faire pour le développement des soins palliatifs tant au niveau national qu’international. Votre travail, qu’il soit clinique, académique ou dédié à la recherche, fait la différence dans la vie des gens à des moments critiques où ils en ont le plus besoin. Je remercie particulièrement ceux d’entre vous qui passeront le temps des fêtes de fin d’année loin de leur famille, assurant les meilleurs soins possibles aux patients et leurs proches.

Merci aussi de votre soutien et de vos encouragements à l’égard de l’équipe de l’EAPC suite aux importants changements effectués dans l’organisation de l’association qui contribueront à assurer notre avenir dans les prochaines années. Notre nouveau bureau de Bruxelles sera pleinement opérationnel en janvier et vous verrez que certaines administrations vont quitter l’Italie. Nous avons pris grand soin de planifier ces changements et je remercie tout particulièrement Julie et Paul Vanden Berghe, le membre belge de notre Bureau, qui nous ont aidés avec talent dans la réalisation de cet objectif.

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake

Julie Ling (left) with Stella Duwendag, Amelia Giordano and Eleanor Blake on the stand at the 9th EAPC World Congress, Dublin

L’EAPC fonctionne grâce à l’engagement et au dévouement de personnes en coulisse qui gèrent nos activités au quotidien. Nous avons eu de l’aide, à de nombreux niveaux, au cours de l’année écoulée (Silvana, Stella, Catherine et Eleanor – Merci). Nous voudrions saisir cette occasion pour remercier tout particulièrement Amelia pour son aide tout au long de l’année et pour les nombreuses années au cours desquelles elle a travaillé sans relâche pour l’EAPC. Amelia prendra sa retraite en 2017 et nous lui serons toujours reconnaissants pour son management et ses conseils. Merci ! En janvier, nous accueillerons Eleanor Blake qui succède à Amelia. Eleanor nous rejoint avec une solide expérience dans l’administration et travaillera avec Amelia pour assurer une transition en douceur.

L’EAPC continue d’être un leader mondial dans le domaine des soins palliatifs. Le succès du Congrès de recherche de Dublin en juin n’aura sans doute d’égal que notre 15ème Congrès mondial qui se tiendra à Madrid du 18 au 20 mai. Les résumés de communication sont arrivés et les jurys sont en train de les évaluer. De nouveau, merci au Comité scientifique de Madrid – nous savons que ce sera un merveilleux événement pour la communauté des soins palliatifs. Attention: penser à réserver tôt pour avoir le tarif préférentiel (avant le 15 février 2017). Nous sommes également ravis de vous annoncer que nous sommes en mesure de proposer une traduction simultanée à l’espagnol de toutes les plénières du Congrès.

Lorsque Julie et moi avons entrepris ce voyage lors 14ème Congrès mondial qui avait lieu à Copenhague, nous voulions nous assurer que notre association était un espace dans lequel ses membres se sentiraient capables de contribuer à ses missions et dans lequel ils seraient entendus en termes d’idées, de suggestions et de retours. En tant que Président, j’ai l’intention de tenir une réunion à Madrid avec les présidents des associations membres collectifs de l’EAPC (les courriers sont en cours d’acheminement), mais nous vous encourageons à nous manifester vos points de vue et vos opinions pour nous permettre de faire de l’EAPC une association plus forte et plus efficace.

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert Front row left to right: Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Team members missing from the photo: Eduardo Garralda and Julie Ling)

Social media team: Back row left to right: Carlo Leget, Lyn Silove, Lukas Radbruch, Mark Taubert
Front row left to right: Nicoleta Mitrea, Avril Jackson, Irene Murphy. (Team members missing from the photo: Eduardo Garralda and Julie Ling)

Comme toujours, l’équipe des Médias sociaux mérite une mention spéciale. L’équipe devient plus forte et est dirigée d’une main de maître par Avril. A bien des égards, elle devient le « visage » de l’EAPC. Nous savons que l’équipe prend une pause bien méritée pendant les vacances et qu’elle reviendra en forme le 9 janvier 2017.

On m’a dit que l’EAPC est une famille et, en cette période de l’année, le temps passé en famille est important. Comme dans beaucoup de familles, il lui faut un chef, quelqu’un qui organise tout et qui s’assure que la famille garde le cap: c’est le rôle que Julie tient facilement et efficacement. Julie et moi vivant et travaillant tous deux à Dublin, je peux au moins la remercier en personne pour son travail au sein de l’EAPC l’année dernière. Là aussi, pas de joli cadeau étincelant, Julie … mais notre sincère estime pour tout ce que vous faites.

Et enfin, le Conseil d’Administration (CA) de l’EAPC. Votre contribution au travail accompli fait que notre ardeur au travail vaut la peine. Être membre du CA de l’EAPC exige de l’engagement, une vision et une capacité à respirer profondément quand un autre mail reçu s’accompagne d’une nouvelle demande. Nous ne pourrions rien faire sans vous.

Ainsi, où que vous soyez dans le monde en cette période de fête, nous vous souhaitons la paix et le bonheur. Nous attendons avec impatience cette nouvelle année de travail au sein de l’EAPC et la contribution significative pour l’avenir des soins palliatifs qu’elle promet. Enfin, nous espérons vous voir tous à Madrid …

Remerciements: Nous remercions chaleureusement Caroline Tête du Centre national des soins palliatifs et de la fin de vie pour la traduction française de ce billet, et Chris Jackson pour les photos.

Prochains billets sur le blog de l’EAPC à partir du 9 janvier 2017.

new-new-eapc17_header_960x211Bienvenue à Madrid 2017. Visitez le site du Congrès pour toutes les dernières informations. Suivez-nous sur Twitter @EAPCOnlus – #EAPC2017, notre hashtag officiel pour le Congrès.

 

 

 

Posted in EAPC ACTIVITIES, EAPC Board Members, INTERVIEWS & TRIBUTES | Tagged | 2 Comments

WeCare chair: End of Life Care research group celebrates third anniversary

In June 2016, WeCare chair celebrated its achievements of the past three years with a special course led by Dr Keith Wilson from Canada. Josep Porta-Sales, Director, Cristina Monforte-Royo, Co-director, and Albert Balaguer, Coordinator, explain. 

WeCare chair: End of Life Care is a research group based at the International University of Catalonia (UIC Barcelona) in Barcelona, Spain. This year, we celebrated our third anniversary working in the field of palliative care. WeCare’s main lines of research include The Wish to Hasten Death, Meaning in Life, Dignity at the End of Life.

Dr Albert Balaguer (left), Dr Cristina Monforte-Royo (centre) and Dr Josep Porta-Sales (right)

Left to right: Dr Albert Balaguer, Dr Cristina Monforte-Royo and Dr Josep Porta-Sales

With a growing number of publications and conference communications to our name in just three years, we decided to round off our achievements since 2013 by organising a course with Dr Keith Wilson (The Ottawa Hospital Rehabilitation Centre, Canada).

Dr Wilson, who is renowned for his involvement in the first studies in palliative care alongside Dr Harvey Chochinov, spoke at WeCare’s annual conference in November last year. His communications entitled Screening for the Wish to Hasten Death at a Clinical level and Responding to Expressions of the Wish to Hasten Death covered the fundamental issues on which the course this June was based.

Given Dr Wilson’s clinical experience and well-recognised contribution to the field, the course offered valuable insights into the theoretical aspects of Cognitive Behaviour Therapy and a practical, case-centred approach to developing professional skills. Participants included doctors, nurses and psychologists who expressed particular gratitude for the tools and tips they were given from a psychologist’s perspective that they could use in their own contexts.

One participant said:

“In Spain, the role of the psychologist is not so easily available in palliative care as it is some other countries in the world. I gained some really useful insights to help communicate with my patients from my place as a nurse.”

The format of the course was also appreciated:

“It can be difficult to find the time to attend workshops and training sessions but the practical approach based on a simulated clinical interview meant we were really able to make the most of the time we had with Dr Wilson. I learnt a great deal that will be easily applicable to my day-to-day work; it was really valuable to get to discuss these issues which come up so often in clinical practice.”

Besides organising the course, Dr Wilson spent a month as a visiting researcher with the WeCare chair working on their projects and ongoing research.

To find out more

  • Please visit WeCare Chair website for information about our work, or upcoming courses.  (In Catalan, Spanish and English).

EAPC17_Header_254x71-2EARLY BIRD REGISTRATION DEADLINE: 15 FEBRUARY 2017

Welcome to Madrid – 15th EAPC World Congress, Madrid, Spain 18-20 May 2017. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #EAPC2017.

Take advantage of the Early Bird Registration rate until 15 February 2017. After this date, registration is still possible via the congress website at a higher fee. You can also book your accommodation via the congress website.

 

Posted in EDUCATION & TRAINING, NATIONAL & INTERNATIONAL REPORTS, RESEARCH | Tagged , | Leave a comment

Palliative care in dementia: Call for papers for a special issue of Palliative Medicine

Guest editors of the special issue, Julian C. Hughes, The RICE Centre, Bristol University, UK and Jenny T. van der Steen, Leiden University Medical Center and Radboud University Medical Center, Nijmegen, The Netherlands, invite you to contribute . . . 

Jenny T. van der Steen

Jenny T. van der Steen

Much of life is to do with relationships and things go better when relationships are good. Palliative care is about relationships too. Looking after people who live with dementia and their families involves specific challenges for which palliative care has a lot to offer. We want to talk about this in terms of relationships: they are important in palliative care, but also for research.

The field has made great strides since, in 1986, JAMA published a paper on the development and evaluation of the first dementia-specific hospice programme aimed at comfort in people with advanced dementia in the United States. The developer of the programme, Professor Ladislav Volicer, has been a great inspiration and friend to us both. For instance, he joined us and others to develop the European Association for Palliative Care (EAPC) dementia white paper, which, for the first time, defined optimal palliative care in dementia by its domains and recommendations.

Julian C. Hughes

Julian C. Hughes

In 1995, as an engineer with no clinical background, Jenny started research on palliative or curative treatment of pneumonia in nursing home residents with dementia. In essence, it was about whether or not to treat with antibiotics. Yet in 2004, at Jenny’s first EAPC congress, in Stresa, there was hardly anything about dementia. Julian’s first real engagement with palliative care came in about 1996 when, as a senior registrar in old age psychiatry, he spent a morning each week in the hospice in Oxford. In 2005, he was invited to write an editorial about palliative care in dementia for the BMJ. Of course, he turned to Ladislav Volicer for help!

A lot has happened since: palliative care has ’adopted‘ dementia as an incurable disease in which it can help. Observing symptoms, good symptom management, advance care planning: these are all being addressed from a more multidisciplinary and more holistic perspective. Those in the dementia field have also recognized the importance of palliative care.

Poor practice persists

Mr Cowley and his family had been known by the consultant psychiatrist for many years. As his dementia worsened there were attempts to talk about the future, but Mr Cowley and the family preferred to focus on the present: he was living well. Eventually, however, he became frailer and, following a fall, he was hospitalised. There, things went very wrong. When the psychiatrist went to see him on a general medical ward he was lying in bed, in pain, incontinent. Because of good relationships, the psychiatrist was able to arrange for the local palliative care team to intervene and Mr Cowley was moved to the hospice where he died peacefully a little while later. The story has a good ending, but shows that there is much more work to be done.

Over the past 10 to 15 years, research in the field of palliative care in dementia has burgeoned. Much of this work will eventually be relevant to many of us, as up to one in three people has dementia at the end of life. Yet, we need better evidence on what to do at different stages of the disease and how best to integrate palliative care principles into current practice on a large scale in a manner that is feasible and affordable.

To this end, Palliative Medicine recently launched a call for papers for a special issue on dementia. We are delighted to act as guest editors and look forward to reading about the rigorous research – whether based on empirical data or offering theoretical and conceptual perspectives – which we know is going on throughout the world.

The special issue will bring together top researchers and thinkers in the field. In a sense, it is also about relationships: it’s about our solidarity as researchers committed to improving palliative care in the field of dementia with those (and their families) who live with dementia every day.

pm-logoWould you like to submit a paper on palliative care in dementia?

If you are interested in submitting a paper for this special issue of Palliative Medicine, please view more information here.  Or, visit our website and click on ‘Call for Papers’. (If you have any problems, please email Debbie Ashby, Editorial Manager).  Deadline for submissions: 31 March 2017.  

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