Prof Sheila Payne on research, learning and leaving Lancaster

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Professor Sheila Payne has been a key figure in driving forward the research agenda in hospice, palliative and end of life care. Prof Payne will soon be leaving her post as director of the International End-of-Life Observatory at the University of Lancaster, a position she has held for seven years, to concentrate on her work with the European Association of Palliative Care. ehospice caught up with her via Skype:

What brought you to work in the field of palliative care?

I worked in the clinical field originally. I trained as a nurse and my clinical specialty wasn’t palliative care, it was the operating theatre. I worked in London and in Auckland, New Zealand, before moving back to the UK. Then as a mature student, I did a degree in psychology at the University of Exeter, then a PhD.

The focus of my research was quality of life in women with advanced cancer. I didn’t really regard that work as palliative care, I regarded it as psycho-oncology, which was just emerging at that time. And it was only after I got my first lecturing post which was at the University of Southampton, and I was developing my research area, I started to research palliative care. I had really naively assumed that there was lots of research in that area, because we have hospices in the UK and I thought that lots of people must be doing research. So I came to palliative care research by a rather roundabout route.

What changes have you witnessed in hospice and palliative care since you started your work in the field?

The nice thing is the continued growth internationally, the development and the interest. At a public health level, it’s not always linear progress. I’m aware of that in some parts of the world, and some parts of Europe have had major problems following the recession.  

Overall there is a growing awareness of what palliative care can contribute. Also, I feel a growing awareness amongst the public which I think is really important. Because I think that the only people that politicians really listen to are the voters.

I think that the evidence base is improving. I think it’s got a long way to go, but the quality and the quantity of publications, conference papers and research is growing slowly but surely.

I think the good thing is that there is more education and training available. I think there are some really good leaders emerging internationally and I think that’s really exciting and important. I think that’s worth investing in, so I’m really, really keen that we build this capacity, because that is what will allow this area of health care and social care to develop.  

We need really good leaders who are not just advocates for palliative care. I think advocacy is important, but there is a danger of advocacy leaning towards propaganda. I think it needs to be intellectually and evidence-based, engaged advocacy. Not just saying: ‘This is fantastic, we know it works!’ It needs to be a bit more than that to be convincing.

Do you see research being incorporated into the daily work of hospices?

Sadly not, I and my colleagues wrote a report in the UK about the lack of involvement of hospices in research. It was some work that was commissioned by the Commission into the Future of Hospice Care published by Help the Hospices. The title is: Research in Hospices: Can hospices afford not to be involved. I think there are pockets of understanding in that there are individuals and individual hospices doing research. But overall, the average hospice in the UK does not engage sufficiently in research. I think that this is a terrible mistake. If we draw a parallel with a commercial organisation, as a company, you would invest at least a proportion of your money in research and development activities so that you stay up to date and that you drive forward your product. If hospices in the UK don’t do that, particularly because many of them need contracts with the NHS, that means that they don’t have the evidence base for what they do.

Hospices are often quite small organisations, run by trustees who perhaps don’t understand the importance of research. Also, there’s lot of reinventing the wheel, so there are a lot people doing small-scale research that is not publishable and doesn’t contribute to the body of knowledge. There needs to be much more concerted action in this area.

In the report I proposed a three tier model where 1) all hospice professionals should be aware of and use research in their clinical practice 2) that hospices should enable research to happen, and 3) at the top level there should be at least some hospices leading and developing research. I absolutely acknowledge that not every hospice can do that but I think we need at least a proportion of hospices to lead this.

If we look back within the history of cancer care before they started doing clinical trials and developing new techniques and new drugs, before that people were fairly despondent about cancer and nothing was developed very much. But now cancer clinicians do an enormous amount of research.

So I think things can change. They do need to come from the top of the organisation down. Everyone needs to realise that this is a really important part of what hospices do.

I would like to see an award, for instance for a ‘Research-active hospice’, something that you could put up on your front door and show to visitors. Hospices should be proud of this. I think that relevant, published research would help to make hospices much stronger in arguing for their work with their government and whoever funds the work, wherever they are in the world.  

They don’t all have to be enormously expensive studies. It’s just asking questions about the practices or care that is provided and asking it in a critical way, a research-based way.

In your opinion, what should be the research priorities for hospice and palliative care in the near future?

I think that will depend where they are in the world. One of the things they need to do is ask critical questions about what works and what does not.

There needs to be a testing and questioning of new innovations. And some of them will work and some of them won’t. Even the ones that don’t work will give really useful information.

The big thing is that people keep reinventing the wheel. They develop, for instance, a group for family carers in one place and this doesn’t work, but because they never publish those findings and don’t share that information, another hospice up the road will do something very similar and once again it doesn’t work very well. What a waste of resource and effort! So not only should we be sharing what works really well but especially what doesn’t work so well.

Also, we tend to make an assumption that hospices are really good and palliative care is really good. We need to be doing research with people who say: ‘Thanks but no thanks.’ Are they somehow missing out, or are there other resources and other services that fit their needs much better? I think we could learn a lot from these people, and we don’t currently include them in our research.

In your work with the EAPC, what opportunities do you see for sharing learning between countries in Europe?

There is huge disparity in Europe, as in other parts of the world. I also think we can share learning in many different ways. There is always an assumption that the information flows one way (from West to East), while actually it flows both ways. For example, in the use of resources, how do some countries that are very resource constrained still manage to do things effectively? What is the role of volunteers? Are there more cost-effective ways to do things? I think there can certainly be shared information.

There is a new organisation: The European Palliative Care Academy, which is funded by the Bosch Foundation in Germany, that is really looking to bring professionals together from many different parts of Europe to do leadership training. So I think there are some really interesting things we can do about sharing leadership and asking: ‘What does leadership mean in different environments?’

The EAPC does a lot of work with taskforces. The education taskforces are particularly helpful. Obviously we do not tell individual countries what they should or shouldn’t be doing, but what we can do is offer guidelines or frameworks for them, and I think that helps to drive up standards.

There is a new White Paper coming out in 2014 on core education and roles of social workers in Europe. I think that doing that kind of thing is useful across countries, because it allows different countries to understand the diversity of the roles, even within their own country.

Also, there are a lot of things in the EAPC that we have not grappled with. I think we have not run out of questions, but the models that we have to do it are working.

Also the congresses, such as the EAPC World Research Congress in Lleida next year, are clearly working at the moment to provide a good platform for international exchange. I think there were people from 87 countries at the last EAPC Congress in Prague. So you meet many different people and learn about many different ways of approaching palliative care.  

Is there anything else you would like to add?

Just a big thank-you to my colleagues. I’ve worked with fantastic colleagues here in the Observatory and in the other places that I’ve worked, and also with the EAPC and I am humbled by the contribution that people make, not just in Europe, but round the world. I think that community of effort is fantastic.   

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