"The biggest challenge that we have in palliative care is making sure that we fit within the political agenda in the countries"

Philip Larkin, president of the European Association for Palliative Care, gave a lecture on ‘Compassion in palliative care' organized by the ATLANTES Resarch Program of the ICS

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FOTO: Macarena Izquierdo
09/02/16 19:10 Isabel Solana

The ATLANTES are talks on a central theme in palliative medicine that are held on an annual basis, inviting as the keynote speaker a member or representative of the international palliative care community. The lectures are organized by the ATLANTES Resarch Program of the Institute of Culture and Society.

"The Institute for Culture and Society has always sought and promoted interdisciplinarity and internationality. We have always believed that bringing different professionals and researchers from outside of our institution enriches our discourse, increases the level of our discussion and brings fresh ideas to expand our research", the Principal Investigator of the ATLANTES Program, Carlos Centeno, emphasizes.

Philip Larkin, president of the European Association for Palliative Care, gave an ATLANTES Lecture on ‘Compassion in Palliative Care. Bringing an abstract concept into professional daily practice and into academic publications'.

Why is compassion so important in palliative care?

The greatest thing that compassion does is that it opens the door to the human relation which is, in fact, the basis of palliative care. Often it's you as a human being with another human being. That is more important and makes the transformation in how people live their lives at the end of their life. So, something that doctors and nurses can learn is that it's not always about our qualifications and our skills, but it is about taking the time to share internal moments. We do that through a compassionate response.

How can compassion be enhanced in the practice of health professionals?

I think people expect at end of life particularly that we deal with them compassionately, but, unfortunately, in the last years, and particularly in the United Kingdom, there's been a lot of criticism of nurses and doctors that they have lost compassion in their practice, and this leds to inquiries into how to deliver care in the end of life. I believe very strongly that if you can define compassion, explain what compassion is and demonstrate that in practice, there would be better practitioners in palliative care.

As we know, the foundation of palliative care is based on the work of Cicely Saunders, a woman of a profound Christian value. If you read some of her books - particularly ‘Watch with me'- you get a very strong sense of the fact that Christian values underpin a lot of her initial thinking. To some degree, because palliative care is now well integrated into the standard delivering practice, sometimes I feel we have lost sight of those important spiritual values of care, respect, dignity, listening to others, sharing... So I believe that, through education, through demonstration in practice, people who expect palliative care can see those virtues and values underpin what we do, so that is not just an example of good clinical practice, it's something more.

Which is the biggest challenge in palliative care nowadays?

I think the biggest challenge that we have in palliative care is making sure that we fit within the political agenda in the countries. The problem is that palliative care is often seen as a subspecialty of clinical care; in some countries is a subspecialty of Medicine, in some countries is not even recognized. And the problem is, when you are trying to say to the Government and to politicians this is an important issue for our population, they don't know what it is.

I think we also have a problem ourselves in palliative care, because we're not always clear on the messages that we deliver. So I think one of the challenges we have across Europe is having a very clearly defined message about what palliative care is and about what it can bring to the general quality of life of the population at large. I think that if we do that, then people will see that it's not all about money; you can actually integrate palliative care without many additional costs, because often it's a way which you practice rather than a defined different practice itself.

Can you mention some examples of good practices in palliative care across Europe?

Fortunately, for my role of the president of the European Association of Palliative Care I've travelled to many countries and I've seen many good examples of practices.

One example could be the Netherlands. They have such a very good system of involving the public through volunteers, which are a very important part of the palliative care service delivery. They have what they call "the buddy system": in some cases, the first person that the patient sees is not a doctor or a nurse, it's the volunteer. The volunteer is the person who introduces the service, so what they're seeing is someone from the community who is engaged in the palliative care world. And then the fear that sometimes comes when they are referred to palliative care is lesser.

Also, in Spain I'm always very impressed by the quality of the education and training that they are able to provide. Particularly, I'm interested in the interdisciplinary approach, the idea of bringing people from different disciplines together.

And in my own country, one of the things that we develop is what it's called compassionate community, which means that you bring all the people of the village or all the people of the own community together to understand how can they support someone in their community.  So this isn't all about commissions doing delivery care, is about the community understanding what is this about.

How is it possible to engage the society with this issue?

One of the challenges is that many people in society need to understand what palliative care is and what palliative care isn't, so we need a process of public engagement. We can do that through surveys, through working with the media…

For example, in Portugal they did an interesting project using sugar packets. Like Spain, everybody in Portugal drinks coffee, and in the little sugar packet they would have a little thing about what palliative care is, and of course every time you look on the sugar, there is information on palliative care.  And so they found, by doing evaluation, the population got to know a lot more about palliative care. And they were also very good in delivering a clear message.

We need to find ways of bringing the public in, and a lot of that really is about listening people's fears. If you can open the doors to allow people to see what you're doing and then meet the needs fears they may have about medication or overtreatments that can hasten the end of their life, what you can get beyond those fears, then actually people will really understand what palliative care can do for them. 

Carlos Centeno: "We could not claim to be conducting research on palliative care without a point of contact with palliative care clinical practice, which is imbued with compassion"

Carlos Centeno, Principal Investigator of the ATLANTES Research Program of the ICS, stressed that "compassion is more important in practice than in research. However, we could not claim to be conducting research on palliative care without grounding in or a point of contact with palliative care clinical practice, which is imbued with compassion".

"It seems to me that even discussing palliative care without talking about compassion or researching palliative care without considering compassionate patient care would be meaningless," he emphasized.

"One of the issues the Atlantes research team works on is making a positive vision of palliative care reach society. We really do not intend to transmit a discourse to society; rather, we intend to show the value of what we think are palliative care's intrinsic properties. We want society to know the reality of palliative care, which goes hand in hand with compassion and professionalism. In a way, it is advanced medicine for the end of life", he said.

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