Abstract
Research is what I’m doing when I don’t know what I’m doing.
Why is research in palliative care so difficult, after all it is not rocket science, is it? Yet the palliative care literature is replete with reports explaining the challenges of conducting research in our field. Such reports often explain why studies have been difficult to conduct, discussing a wide range of complex issues associated with research structure and process, such as access, recruitment, defining our populations of interest, consent, attrition, ethical issues, funding, research capacity and infrastructure. These are important issues that have had a real effect on the quality and quantity of palliative care research. As an illustration, Cochrane reviews on the pharmacological management of the common, debilitating symptoms such as nausea and vomiting in palliative care conclude that there are no sufficiently robust studies available to guide practice.1,2
I cannot help but think that we have made our point about the difficulties we face. Is it time for us to stop complaining about how difficult it is to conduct research in this field and instead to agitate for change and be increasingly confident in our knowledge about how to overcome these challenges? Three linked articles in this edition of Palliative Medicine might assist us. They originate from the MORECare project, set up to develop evidence-based guidance on the best methods for the design and conduct of research in end-of-life care to further knowledge in the field.
The first article is a meta-synthesis of 27 reviews of studies evaluating the effectiveness of palliative care services, 3 with an aim of exploring not only the methodological approaches and limitations but also the requirements for methodological advances. The synthesis first identifies four prominent methodological challenges: implementation as a continuum, active precise recruitment, addressing randomisation and economic evaluation beyond cost savings. However, clear solutions for many of these issues emerge from the synthesis, highlighting requirements for best practice. Two further articles report original research to develop research-method guidance on addressing ethical and statistical concerns.4,5 Each project developed a number of topic-specific recommendations, which have been synthesised together with other aspects from the MORECare project to create a statement providing best practice solutions for research evaluating services and treatments in end-of-life care. 6
Core to these recommendations is a tacit acknowledgement that we should not be apologetic about the measures we take to ensure we conduct robust research in this field, but be explicit about what is and is not possible and how we can best attain what is achievable. Researchers would be well advised to incorporate these best practice suggestions into their study protocols. This is, however, just the first step. These statements were developed in consultation with a relatively limited number of people, in comparison to you, the population of palliative care researchers. You work in different fields, draw from different epistemological traditions, in different cultures and contexts, ask a wide variety of research questions and face emerging challenges. We should strive to refine and develop these recommendations through critical adoption, feeding back experience in our study reports in a positive manner to challenge and develop knowledge. There is no need to continue to complain about how difficult research in palliative care is, but to come of age and be positive about how we can achieve better research within such known constraints. This does not mean complacency, we should continue to test boundaries, improve the research we conduct and proactively work to influence change in related issues, such as the funding available to conduct research in palliative care.
And Wernher Von Braun? As a scientist involved in the technology that helped get the first man to the moon, he proved that perhaps even rocket science is not that hard after all.