Domhnall MacAuley: Palliative care

Domhnall MacauleyDying 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

  • Scott Murray

    The BMJ is to be congratulated on supporting this recent palliative care research conference, and for launching “BMJ Supportive & Palliative Care”. This is certainly the day and the hour to improve the lot of the dying, and there is going to be a lot of it about. But to suggest that the day of qualitative research is over may be premature. Yes we now understand what it is like to die with various different illnesses, and we must get on with intervention studies.

    But qualitative research may be necessary to really understand what happens in these interventions when traditional quality of life measures may fail to be sensitive enough to measure outcomes important to patients. Yes, we must progress on from describing to doing and improving services, but longitudinal qualitative work be best able to select and evaluate outcomes important to patients. After all at the conference, a user complained vociferously about a great delay in getting her scan result. There is no measurable outcome measure with this as a question. Only listening to the patient allows us to hear and identify their real concerns.
    Scott Murray

  • As a qualitative researcher in this field it's good to see an evolving body of research that I feel sheds great light on patient, carer and professional experience of provision of end of life care. It is somewhat more surprising to discover that we have been so successful that we have now reached data saturation and that there's nothing new to learn. Either the method is alarmingly superficial or amazingly productive.

    Qualitative vs quantitative research is, naturally, not a zero sum game and qualitative research is not simply a method for hearing views. More than anything else, qualitative research is about the uncovering complexity and contingency, about the critiquing of certainty and about “close contact with people at their most vulnerable.”

    There is clearly the need for research to step up a gear. Whether its to deepen the qualitative techniques through ethnographic methods or qualitative longitudinal studies, to conduct research in new cultural formations such as social media and to expand the current body of research to determine how we can possibly start defining outcomes and assessing interventions. I would personally expect qualitative research to play a full part in the process.

  • Amy Abernethy

    Our patients need us to ask “what works for whom and when”. This is the least that they can expect of us, and in response we must develop the systems, approaches, datasets, and dedication that will lead us to answering the most basic questions in palliative care. Qualitative research is a part of defining the story – and the answers; we cannot dismiss it, nor expect it to be conclusive. One of the things that the COMPASS meeting, and palliative care, reminds me of every day – is that the end game is collaborative, in spirit, intent and practice. We have to listen to the narrative while analyzing and understanding what the numbers are telling us. And we have got to do this quickly – because for the people sitting in front of us, the clock is ticking.

  • Barbara Kimbell

    I was interested to read about the idea of reaching saturation point on a whole research methodology, especially in a field that, as this blog highlights, is still a ‘developing speciality’. Qualitative research has an important contribution to make to any clinical endeavour, and in particular in the realm of supportive and palliative care where the focus should be first and foremost on the holistic needs of the patient and their family. These people are dying. As professionals, we tend to know how to take care of their physical symptoms to make them feel more at ease. What we are less good at is to acknowledge, and effectively respond to, the many other aspects of the dying process, that is, the many overwhelming psychological, social and existential challenges that come with the knowledge that one’s life is coming to an end. We do know however that these can have an important and direct bearing on a person’s illness progression and quality of life in their final months and weeks. They should therefore surely be of interest and concern to any professional involved in the care of that patient.

    I would argue that there is still much left to learn about supportive and palliative care, and in particular in relation to specific conditions. My own qualitative longitudinal research into end-stage liver disease responds to a very clear gap in our knowledge in that area. The blanket rejection of further qualitative research suggests that we should extrapolate and make inferences from what has been have learnt so far to any condition not yet fully explored. This must surely be considered an inappropriate move, taking us right back to the days when we thought all things palliative should just be done ‘the cancer way’. As was stated in the blog, clinical assessments cannot capture the essence of what it is like to be dying or what is important to the patient or their family at this time of great need. Similarly, relying on databases to guide practice effectively ignores the patient in favour of their illness, an approach clearly undesirable and unbefitting of a field which claims the promotion of quality of life as its primary aim. There is still much to be gained from qualitative research. Rather than dismiss it out of hand completely, we should surely evaluate each research endeavour on its own merit, and on the contribution it makes to our ability to more effectively help those in the final stages of their lives.