Bee Wee: Palliative Care
Palliative care is the care of people with a progressive, life-limiting illness. Since today people live longer with a cancer or another advanced progressive disease, they often experience fatigue. Research at the bedside aims to reduce symptoms and improve the quality of what is left of their life.
Q: What is palliative care?
BW: Palliative care is the care of people who have advanced progressive disease, a life limiting disease, where we look at the physical, psychological, social and spiritual aspects of how that affects them, and try to improve the quality of life for what there is left of their lives.
Q: Is palliative care different today than 5 or 10 years ago?
BW: Yes, when palliative care first started it was very much focusing on 'terminal care' if you like, the last few weeks of life. Then we got better at doing that and now we are involved at an earlier stage. But in the last 5 to 10 years, a lot of the patients that we look after are cancer related, and of course cancer has become a much more chronic disease - people are living longer with it but with symptoms and with psychological effects from it. We are also becoming much more involved with people with none cancer disease: people with heart failure, advanced chest diseases, liver disease, neurological diseases like multiple sclerosis and Parkinson's and so on. We are involved with basically anybody who is perhaps in their last year or years of life.
Q: What is the Sobell Study Centre?
BW: The Sobell Study Centre is the educational and research arm of the Sir Michael Sobell House, which is based on the Churchill Hospital site. Sobell House itself is a specialist palliative care service; it provides beds for patients who have specialist palliative care needs, and also has teams going out into the community and into the hospitals in order to support patients. The Study Centre provides the hub for education and research into palliative care.
Q: What are the major lines of research in palliative care?
BW: There are two particular areas where Oxford is concerned. One is in end of life care, so the experiences of people at the very end stage, but the other bigger area now is actually in fatigue.
Q: What is fatigue?
BW: Fatigue is the utter exhaustion that we have all experienced. The difference is that with this group of people, when they have had a rest it doesn't change their experience of fatigue, unlike you or I who will feel rested after we have had a good night's sleep for instance.
Q: Why does you line of research matter, why should we put money into it?
BW: Firstly fatigue is a very common problem; if we think that in the last year something like half a million people died in England, of whom a large proportion would have been living with disease for the last year of their life. Fatigue can be as common as anything up to 75% in people with cancer, if they are having chemotherapy and radiotherapy it is greater than that, about 60-80% in people with heart failure, same again in chest diseases.
For example, one of the patients I saw yesterday was a gentleman who had advanced liver disease and he has been trying to live a normal life. He went to visit his son as he does every weekend and I would like to quote to you what he said to me; "I felt very very tired. I couldn't keep awake and when I went to bed I couldn't sleep at all. And during the day time it was as if a cloud had come over me, I had to close my eyes and just fall asleep. I have got no energy; energy is completely sapped from me. I can't walk properly. I want to walk and I can do it with a stick but very very slowly and I am shattered at the end of that". Unlike you or I if we get fatigue we go to bed, we get up and we are rested. People with advanced disease don't. It is a very common problem and we don't have a lot of good ways of handling it.
Q: How does your research fit into translational medicine within the department?
BW: It is very much at the bedside. We have two projects going at the moment. One is a drug trial to try to develop a very simple and inexpensive drug to try and improve fatigue in these patients. We also have behavioural management, so with the help of an occupational therapist helping patients to find ways of managing the physical, psychological and emotional impact of fatigue on their lives. So that is, if you like, 'at the bedside' bit of it. But we are also interested in finding out the point at which fatigue becomes irreversible to see if we can come up with ways of stopping it from becoming irreversible. So unlike our usual 'bench to bedside', perhaps we are looking at 'bedside to bench' here.