I’ve heard the question of what should we be doing in future research many times. But are there things we should not be doing in palliative care research? I’ve only heard this question asked once in a formal conference setting, and it elicited mostly stunned silence, followed by varying levels of opposition and attempts to reframe the question.
Why is this?
Are we overly tentative in agreeing that a scientific fact has been adequately established, or an area of research adequately covered? Are we concerned that contextual differences between countries, healthcare settings or patient groups require that findings be continually re-validated?
Or is it perhaps that in a world of competitive grant-based research funding, in which we are all forced to be focused on the ongoing white noise of seeking funding, publishing work and translating findings, it is actually the question itself that is taboo? That by suggesting a particular topic has been adequately covered we may actually be suggesting that the researchers who mark that area as their ‘territory’ do somewhat less important work, or that the work never really was very helpful in the first place.
Of course this is not true. While such questions can raise sensitivities, we should remind ourselves that the goal of our research is to use evidence and theory to build generalizable knowledge, and translate this knowledge in ways that will help patients receive the best care. If we are very smart, or very fortunate, we may find that our research in a particular area has achieved its initial aims. In these situations, I believe that the theory developed from the data collected to this point is a critical factor in being able to generate the new hypotheses that will drive our research into the future, and prevent redundancy or needless duplication.
Jenny van der Steen and Claire Goodman explore this question in a recent editorial of Palliative Medicine, taking the context of end-of-life research in dementia as a case example (Palliat Med. 2015 Mar;29(3):189-92. doi: 10.1177/0269216315569998).
At a practical level, how can researchers ensure that this perspective has a positive influence on their research at a day-to-day level? In my view, the first step would be to ensure that the ‘bread and butter’ of the research philosophy is given careful attention. In our rush to demonstrate benefits and translate findings into practice, we should also give careful attention to situating our research questions in the existing literature (before writing the protocol or submitting an ethics application), being aware of existing measurement tools, and understanding the contribution of our data to broader theory – which may generalize beyond the palliative care world.
Researchers in palliative care may sometimes have cause to ask questions of clinicians – why this endless buzzing of tests and treatments focused on cure for a patient who is clearly in the terminal phase of a terminal illness? Shouldn’t we perhaps stop, take a breath, and refocus our efforts if necessary? Perhaps as researchers we can also occasionally stop for a moment, and follow our own advice.
Craig Sinclair is a palliative care researcher based in rural Western Australia