I have spent the day (at the generous invitation of Hazel Roddam) at Advancing Dysphagia Practice conference at UCLan, this year focusing on the theme of getting it right for the patient and hence on the application of person centred care. Three papers this morning addressed overlapping aspects of this general theme.
Heulwen Sheldrick asked “how, why, how?” for staying person centred. Using the difficult example of a relative of hers who had recently died and had refused to accept the agreed pessimistic clinical view of her prognosis, she asked how person centred care should address such apparent denial. Should one collude or deny such patient views? Her suggestions were, by her own view, familiar. We should practice empathy (whilst avoiding maudlin sympathy) and sitting alongside. Services should be co-designed, co-produced and co-commissioned wherever possible. And clinicians needed to reconcile their personal with their professional values in order to be authentic.
Hannah Crawford described her own small scale qualitative study of the lived experience of mealtimes and food for people with PIMD and dysphagia from the perspective of the family and carers, looking in depth at three families. Her research had examined meanings, roles, relationships and challenges. For me the key conclusion was that food played a very important role in mother (the primary carer in these cases) child relationships. (The mothers responded to the food-related wishes communicated by their non-verbal children.) Hence ‘messing about’ – as she put it – with food via clinical recommendations came at the potential cost of messing with crucial relationships. These should thus be weighed and understood alongside more narrowly clinical factors.
David Hamilton addressed the challenges of involving patients in complex team decisions using head and neck cancer as an example. Three aspects of his talk stood out. First there is evidence that patients and clinicians place different values on states of health and ill-health (eg living with a full laryngectomy or the consequences of chemo therapy) but further that there is widespread variation within both groups. Second, that typically patients are involved in a clinical decision only after a view / recommendation has been decided without them in a MDT. Often the suggestions / options are then presented to the patient framed in particular ways to elicit the clinically preferred outcome. There is even dispute among honourable clinicians about whether all options should be presented (because it reveals a lack of medical certainty). Third, he presented an example of a patient who had made a decision based on only partially relevant and partially understood prior experience of his patients’ deaths.
That third talk suggested to me a general worry: what is informed decision making? What is the difference between an ‘unwise decision’ based on good though divergent from clinical reasons and, on the other hand, making an ill-informed decision because based on bad reasons? Can reasons and outcomes be sufficiently independent to allow this distinction? This question seems to me particularly pregnant on a day in which the UK is voting in a referendum on whether to exit the EU.
