Research in palliative care: we’re making encouraging progress
Contribution by an IAHPC Board Member
I have just been completing the last chapter for the fourth edition of the Oxford Textbook of Palliative Medicine due to be published shortly. It is a joint chapter with Stein Kaasa and my colleague in Bristol, Karen Forbes. The chapter is entitled ‘Research in palliative care: getting started”, and it is one of the chapters that we have had in all previous editions of the book. One of the benefits of writing a textbook chapter and updating it every four or five years is that it is a very good way of documenting progress in the topic. I looked back at what we had written in the previous editions starting in 1993 and what is immediately obvious is that there has been a significant and substantial change in the last six years since the last edition of the textbook as compared with the last two or three decades. The most important changes are in funding and building research capacity; in applying newly acquired evidence in day-to-day-clinical practice; and recognising that we have actually a substantial and robust evidence base for palliative care; and in the scope of research in palliative care with translational research, connecting the laboratory bench to the patient’s bedside becoming an increasingly common feature of palliative care research programmes.
Funding In the last edition of the textbook in 2003 we wrote that “there are very few academic departments and fewer still that have sufficient core funding to allow the development of blue sky research programmes. Substantial investment in departments that have the critical mass and facilities to allow high quality research to be undertaken would take research in palliative care a quantum leap forward. But no such investment is on the horizon…” In fact, we couldn’t have been more wrong. In the last five years in different parts of the world, substantial new funding streams for palliative care research have become available. In the UK, as a result of a report on cancer research from the National Cancer Research Institute (NCRI) which drew attention to the very poor funding of palliative care research, the government has provided funds which have resulted in the setting up of two research collaboratives funded by the NCRI. The aim is to improve the quality and quantity of supportive and palliative care research and to develop research capacity. In Canada, in 2004, the Canadian Institute of Health Research (CIHR) announced funding of $16.5 million for palliative and end of life research. The European Union has provided substantial funds for palliative care and supportive care research and one of the latest initiatives is the European Palliative Care Research Collaboration (EPCRC). The aims of this project are, inter alia, to identify genes and genetic variation relevant to the response to opioid treatment and the development of cachexia.
The evidence base of palliative care We hear and read frequently of the particular difficulties of carrying out research in palliative care. Randomised controlled trials are particularly problematic and the major areas of difficulty are recruitment and accrual of patients, attrition and appropriate outcome measures. However, if we were to step back and take a broader view we would find that these difficult areas are also difficult in many other fields of clinical medicine. When we actually look at what evidence is being produced we find that the situation is actually much more encouraging than it has been. A recent paper from David Currow’s department analysed the quantity and level of evidence of palliative and hospice care literature over the last century. The data demonstrate a substantial increase in the volume of palliative care literature and that clinical trials in palliative care in particular account for an increasing proportion of this literature (Tieman J et al.JCO; 2008). An extensive review from the BMJ group “synthesizes the evidence supporting key elements of palliative care: the control of common symptoms, such as pain, dyspnoea, and fatigue; communication and goal settings; and effective, efficient transition management”. This publication (Putting evidence into practice: palliative care by Brunnhuber, Nash, Meier, Weissman and Woodcock) provides a very comprehensive and up-to-date review of the evidence base for palliative care.
There seems to be a clear message here for researchers in palliative care. We should stop berating ourselves that it is all too difficult and that we haven’t made good enough progress in accomplishing high quality clinical research using robust methodology. The message is much more encouraging. We clearly have been successful in completing research in this area and we do have a substantial body of evidence on which to base our day-to-day clinical practice. This doesn’t mean that we can step back and not bother anymore. There is still much to be done.
Professor Palliative Medicine
University of Bristol
Tieman J, Sladek R, Currow D. Changes in the quantity and level of evidence of palliative and hospice care literature: the last century. Journal of Clinical Oncology. Published ahead of print on November 10, 2008.
Brunnhuber K, Nash S, Meier DE, Weissman DE, Woodcock J. Putting evidence into practice: palliative care. BMJ group. www.unitedhealthfoundation.org
Dr. Hanks biography appears at the following URL: http://www.hospicecare.com/Bio/hanks.htm