The Blog of the European Association for Palliative Care
Speaking to someone known personally to me, who had recently been unexpectedly diagnosed with a life-threatening illness and who was facing a difficult treatment regime and discussions about future care, I was aware how suddenly his world had contracted and was defined by the stark realities of his physical condition. His eyes showed the compliant absence of one at the mercy of life-threatening illness and healthcare plans. When it was possible to step behind those circumstances and spend time talking about experiences and people in his life, a light returned to his eyes and he was even able to smile.
This raises the question, how do we retain a connectedness to the person who exists behind the ‘patient’ label? How might reaching that person not only give them more respectful space to reveal who they are but also enable them to talk about the fears and uncertainties that come with changes in their health?
The Attitude to Health Change scale
A person-centred approach increases an appreciation of what contributes to a patient’s vulnerability and what contributes to their resilience; factors crucial to assessing support needs. The Attitude to Health Change scale (AHC) is a nine-item self-report measure designed to explore the impact of changing health on a patient. The scale provides a way of looking at how changes in health can be emotionally overwhelming or can prompt emotional suppression/control, and appraises how these reactions are mediated by varied degrees of vulnerability and resilience. It is important to recognise that while identifying vulnerability is crucial, the characteristics of resilience are evident in many people who are coping with the realities of deteriorating health. There is a parallel version of the AHC for use with carers.
The AHC is derived from a validated scale used in bereavement – the Adult Attitude to Grief scale (AAG). Like the AAG scale, the AHC provides an indication of levels of vulnerability through the quantitative scores. Of equal importance, the themes in the scale provide patients, their carers and professional practitioners with a way to explore sensitive issues, both at the point of diagnosis and at significant stages as an illness progresses, through conversations which are focused and facilitate good caring relationships. A practitioner who uses the AHC says:
“The AHC questionnaire has proved to be a highly valuable tool when exploring how patients feel about their changing health. It helps to open up many important avenues of conversation and it helps to create a focus for therapeutic work at a stage in someone’s life when they may have many worries and fears as well as sadness about what is happening to them.”
Evaluation of practitioners’experience of using the AHC scales is currently being undertaken in a number of palliative care settings and data collected by the International Observatory on End of Life Care at Lancaster University. Discussions are also taking place with academics and practitioners in Spain and France who are interested in the possibilities of using the AHC within their palliative care work.
To find out more please contact Linda: Linda@mapping-grief.care