Demoralisation has been described as a form of psychological distress that is associated with hopelessness, helplessness, and a loss of meaning and purpose. It has been explored across a number of settings, but is thought to be particularly important in palliative care settings, where it may affect up to 20% of patients who face end-stage disease.
Such a pattern of distress goes to the core of our identity, and presents challenges to well-being and the often-cited idea of ‘living well until we die’. It also has important implications for decision-making and consent in relation to medical treatments.
Practitioners in palliative care understand the far-reaching impact of demoralisation, and Professor David Kissane, along with colleagues at Monash University have been advancing our understanding of this concept
In a recent review article for the American Journal of Hospice & Palliative Medicine authored by Sophie Robinson, this group of authors argue that a better understanding of demoralisation is a key part of developing a targeted response that can be applied in palliative care settings.
A number of bedside psychotherapy techniques have been developed, including meaning-centred therapy, which has been found to be effective for patients in both individual and group contexts. However the authors also acknowledge the inevitable ‘insolvability’ of the key factors that trigger demoralisation, and thus counsel practitioners to nurture their ability to ‘suffer with’ patients, rather than focusing solely on cognitive techniques aimed at restoring a sense of purpose.
This point further suggests that while alleviation of distress may be a meaningful short-term goal, there is also important work for patients, carers and practitioners to undertake, which resides at a more existential level. Such work would require a focus on understanding those core beliefs and schemas, which are incessantly challenged by progressive illness.
For palliative care practitioners, it may be that the syndrome of demoralisation is one in which there is a key choice on offer – to attempt to ‘cure’ the syndrome or to instead ‘be with’ and ‘suffer with’. Further research is certainly needed to better understand this emerging concept, and enable informed clinical decision-making about optimal responses.
Professor David Kissane is presenting on the recognition and treatment of demoralisation at this year’s Australia and New Zealand Society of Palliative Medicine Conference in Perth, September 8-11th (#ANZSPM16).
@csinclair28 on behalf of @palliverse