I returned this week from the EAPC Palliative Care Congress in Lleida, Catalunya. It’s been a fantastic opportunity for meeting people, sparking ideas, debating and discussing issues with that peculiar, dysfunctional yet loveable extended family we call the palliative care world. But despite many positive experiences and hearing researchers talking about their inspirational and creative work, I am left with a nagging sense that palliative care research remains dominated by a tale of two paradigms. Attending a conference in palliative care, whose literature abounds with terms such as “holistic”, “integrated”, and “whole-person”, I was anticipating deepening my understanding of the complexity of the field. Yet what did I find? The opening address identified that despite over 800 submissions of abstracts, the number of studies focusing on pain and symptom management had substantially reduced since the previous conference; a plea was made to increase research in this area. Of those presented, the vast majority consisted of quantitative studies exploring the effectiveness of certain interventions, the prognostic power of tools. In short, the ability to simplify, predict and control.
One of the memorable conversations I had at the conference was with a Norwegian researcher who had undertaken her Masters dissertation exploring the idea of “preparedness” in family carers of people with life-limiting conditions. Her revelation whilst undertaken this research was that there is no such thing as “preparedness” as a static entity. One can be prepared for one eventuality and not another, or one’s own changing situation and resources can alter the degree to which one feels equipped with the various challenges that accompany caring for a dying loved one. So many such research seems to taper off into a subdued statements such as “more research is needed”, or “these issues are inextricably linked and the situation is complex”, or some conceptual model is created, with various boxes and arrows and contingencies described.
Just as it is impossible to simultaneously see the old and young woman in the image below, it may be equally impossible to believe at the same time that palliative care can be understood through both numbers and words. So-called “mixed-methods” appear to either be the use of qualitative data to pad out or provide perspective on the numbers, or the use of words generated by qualitative work to create ever more scales and measures.
Dualism refers to any system of thought that contains binary opposites; so just as numbers appear in some ways to be opposite to words here, so too are dark/light, good death/bad death, physical/psychological, mind/matter, subjective/objective. And despite several centuries of challenging Cartesian dualism, it appears that binary and reductionist thinking is alive and well. Experiences can be reduced to scales, words uttered in context within a narrative can be sliced and spliced and grouped together, line by line, until the identity of the utterer is dissolved and merged with that of other participants, in order to capture patterns and order.
Holistic perspectives of health such as those found in Chinese and Ayervedic medicine, and more recently in Western complementary and alternative medicine, allude to the complexity of the human condition. Studies in disciplines as disparate as neuroscience, theology, quantum physics and psychology have illustrated some of the ways in which mind, matter, consciousness, biology and wellbeing are inextricably linked. I am quite happy with numbers; this is not a story of yet another maths-shy nurse loving the fluffiness of narrative. But I do think there are some areas of palliative care where attempts to measure, quantify and compare are troublesome and potentially misleading for practitioners.
Listening in to a talk on the final day by Enric Benito on self-awareness in healthcare professionals, I was struck by the choice of methodology for researching this particular topic. Over 400 professionals completed a “validated” self-awareness scale. Significant results included identifying which professionals are more self-aware than others, as measured by a self-assessment of present-moment experience. But how aware are we of self-awareness? Does our present-moment awareness differ in different situations? It is one thing to complete a questionnaire in a quiet room with a friendly researcher; and quite another to remain present in a difficult clinical situation where anger, distress, suffering and fear may be witnessed. Add in to this the activation of various psychological defences in the face of threat, and I feel fairly certain that present-moment awareness could be greatly different.
There was a fascinating series of brief plenaries on narrative medicine, incorporating an articulate and creative presentation (without powerpoint) by Arthur Frank, arguing for the importance of hearing the whole story in research, rather than breaking up and reducing elements of quantitative data into manageable chunks or units, as in the tradition of grounded theory. This series also saw further discussion by Elena Semino, on the use of metaphor in palliative care, and the opportunity this provides us for understanding the experiences and expectations of patients, caregivers and professionals. One question by an audience member summed up the issue to me very clearly: he said “all this qualitative information is very messy: how is it possible to turn it into something useful and measurable?”
But that is the reality that we sit with. It is messy, complicated, irreducible, confusing. One person’s experience is not another person’s experience. But in saying that the world is impossibly complex, we are in danger of suggesting that it therefore cannot be researched or understood, and in doing so, to think ourselves out of a job. Although reality is contingent, there is benefit to be gained in viewing phenomena through different lenses. This opens windows into the world of people, places and systems. Effectiveness of simple interventions can me measured: efficacy of drugs, procedures, processes. Aspects of experiences can only ever hope to be represented: each research philosophy offers one window to peer through.
When palliative medicine was recognised as a speciality in the 1980s, a great many opportunities were created. Funding and resourcing of specialist provision was enhanced, networks were established, the control of difficult symptoms became more than a story of opiates and sedatives. However, alongside this were some changes in the discipline which could be argued were not as welcome. The development of palliative care heralded a reaction to the medicalisation of death, to models of care that are predominantly biomedical, interventionist and rescuing. There are huge benefits which have accompanied the development of the medical specialism of palliative medicine; the science of symptom control is rapidly advancing, the ability to make use of demographic data to plan and evaluate services, and the expansion of advanced practice roles and formation of sophisticated multidisciplinary teams have all contributed to enhancing the quality of end of life care.
Palliative care does not need to regress to a world of Brompton cocktails. But as the knowledge generated expands, it does require that researchers remain alert to the potential dangers of gradually medicalising all aspects of palliative care, not just those relating to the aspects of the discipline which are more readily measurable.
Perhaps we could do with a new set of 6 C’s relating relate to the role of researchers in palliative care.
Humans, particularly scientists, seem to feel the need to measure and label things. It provides a sense of predictability and safety. Knowledge of the natural world has given humans the ability to harness the natural world, largely to our own ends, by exploiting its riches and mitigating its dangers. We have classified the natural world such that every species has unwittingly acquired a name chosen on some naturalist’s whim. We have even identified the very building blocks of our own genomes, intent on calling to order the wildness of nature and working towards an ability to reliably predict who will develop what condition, at what age, in order that “plans” may be put in place. I do wonder to what extent this endeavour represents yet another “immortality project” – by trying to control the chaos of nature in general, and of death in particular, how much are we driven by our own deep-seated anxieties about our own mortality, and that of those whom we love?