Dying is not much fun. As a GP I have seen a lot of it. Its not the very end bit that bothers me. The last breath is, paradoxically, often serene and peaceful. What I find most difficult is that wretched time that starts when hope is torn away and illness sates its unrelenting hunger. The Compass Collaborative conference in Edinburgh focused on supportive and palliative care – these folk know about dying.
In the past, palliative care was parked in oncology and dominated by cancer. This collaborative, coming from a National Cancer Research Initiative in 2006, has done a lot to widen our understanding. It is a difficult topic to study and this conference was a research benchmark in a developing speciality. There is no laboratory test for suffering and you cannot see pain, loneliness, or anxiety on a CT scan. Research is difficult.
Amy Abernethy described her work at Duke University illustrating how sophisticated databases can be used, not just for research, but in guiding clinical care and in establishing prognosis based on collective past patient records. It struck me that providing access to research databases worldwide seems the rational next step and, that the oft derided case report could be a powerful resource when collected in a searchable archive. Alex Jadad challenged us to respond to the opportunities provided by the new media, even in palliative care, at a time when a mobile phone has so many functions other than just as a phone. A patient in the audience interrupted and shamed us with her story of waiting weeks for her scan result in this immediate access technological age. Systems failure, but perhaps our professional failure too.
And, at a time when it is more common to forecast the death of medical journals, it was a pleasure to witness the birth of a new journal from the BMJ stable. “Supportive and Palliative care” was piped in, carried on a silver salver, and presented to the audience by a kilted Professor Scott Murray, chair of the conference.
In preparation for a workshop, I looked at research submissions to the BMJ. Using “palliative” as a key word, I identified 140 submissions in the last 5 years. Most of these studies were observational (e.g. surveys of attitudes), qualitative ( e.g. views of different professional groups, and of patients at different ages, and with different conditions, and in different environments) or descriptive studies. In general, the studies had very small numbers. Of the most recent 20 submissions, there were two fairly good quantitative research studies (but with method limitations), two qualitative papers, two low grade questionnaire studies, four descriptive/observational studies, one presenting a preliminary research idea, two that were much too specialist, five general discussion pieces, and one personal view. One of the 20 is currently under consideration for publication.
What is the message for future research? My first impression, and I risk a flood of angry rapid responses, is to ask how much more qualitative work we need in this field. While we do publish qualitative studies in the BMJ, we look for works that give particular insights that add significantly to current knowledge and are of importance to our general clinical readership. To use a term from the qualitative literature, I think we may have reached saturation. Qualitative research, in particular, has been very successful in raising awareness of suffering and helped our understanding of the human and personal dimension- there have been very important insights. We now need to look at what we can do about it-measuring the effectiveness of interventions. But, editors, too, need to appreciate how difficult it is to do this research and we may need to think differently. Research in this field is not comfortable work at a computer screen, this is close contact with people at their most vulnerable. These are not patients taking part in studies that may improve their own long term chronic disease outcomes, these patients do not have a long term. This is not about dialling in to a database, these patients are dying.
Domhnall MacAuley is primary care editor, BMJ