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

Is dying well as important as living well?

In response to the Salzburg Questions, a new series encouraging a global discussion about the key issues affecting palliative care, Dr Jonathan Koffman of the Cicely Saunders Institute, King’s College London, UK, explores the importance of addressing happiness at the end of life. It’s a timely post given that today, March 20, is the International Day of Happiness.

When did you last ask a patient, “What makes you happy?”

Dr Jonathan Koffman

At first glance happiness seems to be a little bit like love; if you have to ask whether you are in it or not, you probably aren’t. So what is happiness? The subjective, fuzzy, vague feeling of this concept has been neglected in psychology until relatively recently. Is it possible that psychologists weren’t particularly interested in the scholarly research of happiness? I’m not convinced. Achieving quality of life is considered to be one of the main goals of palliative and end-of-life care. A widely presumed component of quality of life is happiness, a concept considered to be so important to human existence that the World Health Organization now recognizes it as an integral component of health.

Given the importance of happiness in quality of life it is perhaps surprising how little research has examined its meanings among people living with advanced disease. Moreover, no research has attempted to understand the meaning of happiness among people living with advanced disease from diverse communities. Addressing this concern is important because increasing globalization has brought with it an unprecedented number of people who have migrated to developed countries.

We recently conducted a study to explore and compare, for the first time, the centrality and interpretations of happiness across two cultural groups. We interviewed 26 Black Caribbean and 19 White British cancer patients living with and, dying from, advanced cancer in London. Beyond providing detailed accounts of how they comprehended their cancer and symptoms, we also asked participants to tell us very simply, in their own words, what made them happy. This is a question that rarely appears in the clinical assessment of patients.

Nearly all participants volunteered views on happiness, which were related to four main themes:

  • Empty lives, a theme associated with lives devoid of contentment.
  • Happiness and the physical form, such as the effect of distressing symptoms on wellbeing.
  • Love and affection, which concerned relationships with family and friends.
  • Realising personal meaning in life, which related to God, prayer and the sacred world.

The findings provide a very evocative account of the presence of happiness even in the darkest moment of advanced disease. For example, we observed that black Caribbean participants often comprehended the inexplicability of their cancer through the lens of their strong religious beliefs, which enabled them to make the successful transition to a state of acceptance and happiness.

We recommend that health and social care professionals be aware that happiness is an important, complex and multidimensional human experience, which at times is also culturally shaped. They must therefore be sensitive and willing to ask the questions that, on the face of it, seem indulgent when compared to the task of treating physical symptoms. This will enable them to better understand their concerns and then to devise therapeutic responses that maximize moments of happiness and subsequent quality of life.

For more information about the study conducted into happiness amongst different cultural groups at the end of life, the full paper can be viewed here.

Links

  • Follow the EAPC Blog for more posts in the Salzburg Questions series.
  • Follow the global dialogue on Twitter. Using the hashtag #allmylifeQs the nine Salzburg Questions will be debated throughout 2017.
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Ethical issues in palliative care in heart failure

Manuel Martínez-Sélles is Head of Section of Cardiology of the Hospital General Universitario Gregorio Marañón, and Professor in the Universidad Europea and Universidad Complutense, Madrid, Spain. Here, he explains the background to a longer article published in the January/February issue of the European Journal of Palliative Care.

Professor Manuel Martínez-Sélles

The recent progress in the treatment of heart failure is outstanding (Ponikowski et al) but carries an increased ethical complexity in the care of these patients. As part of the work of the European Association for Palliative Care and Heart Failure Association of European Cardiac Society Joint Task Force on Palliative Care for People with Heart Disease, we present a review of the ethical issues in the palliative care of people with heart failure, with a multidisciplinary perspective, including cardiologists, palliative care experts, and ethicists from different European countries.

Advanced heart failure is a life-shortening condition and planning for adverse events and the end of life should be integrated during early phases of the illness. In our opinion, communication is essential to inform about benefits and burdens of interventions and to understand patient goals and values. The prognostication of the disease progression for individual patients with heart failure is difficult, as there is no ‘typical’ dying trajectory. A regular revisiting during the process of the disease is necessary to allow adjustment to changing circumstances. Loss of functional capacity or autonomy may occur gradually or abruptly and sudden death is a frequent event.

We think that the involvement of patients and families in different types of decision-making is essential and should include new treatment options, withdrawal of ongoing therapy, resuscitation status, use of palliative sedation, and other end-of-life decisions. Social and spiritual support is extremely important, as is legislation knowledge. Patients with implanted devices, including implantable cardioverter-defibrillators and ventricular assist devices, merit special attention and it is essential to identify situations in which the devices may need to be deactivated (Daeschler et al).

References

Ponikowski P, Voors AA, Anker SD, Bueno H, Cleland JG, Coats AJ, Falk V, González-Juanatey JR, Harjola VP, Jankowska EA, Jessup M, Linde C, Nihoyannopoulos P, Parissis JT, Pieske B, Riley JP, Rosano GM, Ruilope LM, Ruschitzka F, Rutten FH, van der Meer P; Authors/Task Force Members. 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. Eur J Heart Fail. 2016 Aug; 18 (8): 891-975.

Daeschler M, Verdino RJ, Kirkpatrick JN. The ethics of unilateral implantable cardioverter defibrillators and cardiac resynchronization therapy with defibrillator deactivation: patient perspectives. Europace. 2016 Dec 2. pii: euw227. [Epub ahead of print]

Read the full article in the European Journal of Palliative Care

Or download your free copy of this article from the EAPC website.

This post relates to a longer article, ‘Reflections on ethical issues in palliative care for patients with heart failure’ by Dr Manuel Martínez-Sélles, Pablo Díez Villanueva, Ruthmarijke Smeding, Bernd Alt-Epping, Daisy Janssen, Carlo Leget, Marta Albert, Agustin Losada, Piotr Sobanski, David Oliver 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 ACTIVITIES, EAPC Taskforces/special projects, EAPC-LINKED JOURNALS, European Journal of Palliative Care | Tagged | Leave a comment

Progressing palliative care: Current perspectives and future directions

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, Dr Diane Meier, Director of the Center to Advance Palliative Care, New York, USA, gives a glimpse of the plenary lecture that she will give at the congress in Madrid on Thursday 18 May 2017.

Dr Diane Meier

Unlike most of the rest of the world, the US has no ministry of health and no national health service to serve as a centralised governing body and standard-setter. Health care is paid for by a confusing and overlapping array of government insurance (Medicare for people over age 65 and some with disabilities), Medicaid (tied to means-testing and intended for the poor), commercial insurance (tied to employment), and individually purchased insurance. Thanks to the 2009 Affordable Care Act (ACA), the US now has the lowest rate of uninsured (11%) in our history,  though following the 2016 presidential election, the stability of this accomplishment is no longer clear.

Given this complexity, the work of scaling up access to palliative care for all seriously ill people who could benefit from it requires attention to multiple levers:  payment policies, regulatory and accreditation requirements and oversight, clinician training, public awareness campaigns, delivery model development and testing, and investment in research to inform the evidence base. The shift from paying for volume (so-called fee-for-service payments) to paying for value (the ratio of quality over cost) accelerated by the ACA, has heightened recent attention to, and investment in, palliative care services; not only in hospitals, but also in community settings such as nursing care facilities, the home,  office and clinic practices,  cancer centres, and dialysis units.

The growing payment requirement for clinicians and healthcare organisations to improve value by strengthening the quality of care, and in so doing reduce preventable crisis hospitalisations and emergency department visits, is the single largest force driving rapid growth in palliative care in the United States.

Attention to the characteristics of effective palliative care service models demonstrably linked to better quality and lower cost are essential to sustainable program design. The predictors of reliably high-value palliative care services include:

  • Screening and targeting of specialist-level palliative care services to the highest need subset of the patient population;
  • Comprehensive assessment, risk stratification, and matching of services to need over time;
  • Interdisciplinary teams not only skilled and knowledgeable in management of complex medical illness, but also in pain and symptom management, common co-occurring psychiatric disorders, and in expert communication about patient and family priorities and how best to honour them;
  • Recognition of the central role of family carers in patient-being and outcomes, requiring assessment of family needs, capacity, and willingness to serve in the carer role.
  • Reliable 24/7 access to competent help, since symptom and other crises rarely occur during working hours;
  • Attention to both the social and the medical determinants of poor health, such as safe housing, trauma and violence, food security, transportation, literacy, and poverty/financial challenges; and
  • Transparency and accountability for measurable outcomes including patient and family experience and health care utilization.

A central development in U.S. palliative care is the recognition that most people (and their families) with serious illness and palliative care needs are not dying, but living, often for years, with highly burdensome and chronic consequences. Moving towards need (and away from prognosis) as the key indicator of eligibility for palliative care services, with a focus on improving quality of life at the same time as all other beneficial treatments, represents a fundamental shift in self-concept for the field – a return to the originating impulses of the healing professions as the foundation for all that we do.

Links

Look out for more posts from plenary speakers on the EAPC Blog in the coming weeks. 

Join us in Madrid for the 15th World Congress of the European Association for Palliative Care

Dr Meier will give the first plenary lecture on Progressing palliative care: Current perspectives and future directions at 10h00 to 10h30 on Thursday 18 May 2017. (Simultaneous translation into Spanish will be provided for all plenary sessions). To view the full congress programme and to register, please visit the congress website.

 

 

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