Anna Lloyd, Research Fellow, St Columba’s Hospice, Edinburgh, and Scott A Murray, St Columba’s Hospice Chair of Primary Palliative, Primary Palliative Care Research Group, The Usher Institute, University of Edinburgh, UK, explain the background to a longer article published in the May/June edition of the European Journal of Palliative Care.
When people die at the end of a long life having lived with frailty for a number of years no one is surprised. They are often considered to have ‘had a good innings’. End of Story! However, this was the beginning of Anna’s story in academic research. She conducted serial interviews with frail, older people, their family members and, where possible, professionals involved in their care. “Where possible”, is a telling phrase as many frail, older people were unable to nominate a health or social care professional who was closely involved in their care, and certainly older people are underserved in terms of provision of palliative care services.
In the past few years we, at the Primary Palliative Care Research Group at Edinburgh University, have completed a number of longitudinal qualitative studies looking at the experiences of various people with cancer, organ failure and frailty in their last year of life. Bringing this work together, we first considered how people might tell different stories about their circumstances. We found that narratives were shaped according to whether someone was approaching the end of life with cancer, organ failure or frailty. The narratives brought to our minds the metaphor that one ‘dances with death’. However, the ‘dances’ seemed to be at a different pace. To put it another way, people with organ failure, cancer and frailty ‘danced with death’ but to different tunes (See a previous article on the EAPC Blog, where we discuss how we can provide good end-of-life care for everyone, whether their last dance is a fast Scottish reel, a tango or a slow waltz).
However, if we can relieve suffering through good palliative care, by metaphorically turning down the volume of the music accompanying the ‘dance of death’, why do we tend not to do this for older people? Why does the volume of the music remain high for them? Is this simply a question of ageism?
To consider this question, we obtained a small grant from Marie Curie to bring together the findings from four qualitative PhD studies. These studies considered if the experience of palliative care services of older people with glioma, bowel cancer, liver failure, and those living with frailty, differed from their younger counterparts.
Lack of palliative care seemed to relate less to ageism and more to difficulties in recognising when older persons might die. To illustrate, it was, in fact, younger people with liver failure who were less likely to receive palliative care input than older people with liver failure because healthcare professionals did not consider the possibility of their deaths. Palliative care, both generalist and specialist, was evident when dying was recognised by professionals regardless of age. Maybe we are so accustomed to the ‘normality’ of dying in old age that we do not notice when older people have begun to ‘dance with death’, so we do not think to look at palliative care as an approach to relieve suffering.
Read the full post in the European Journal of Palliative Care
This post relates to a longer article, Why do older people get less palliative care than younger people?, by A Lloyd, M Kendall, E Carduff, D Cavers, B Kimbell and S A Murray, published in the May/June 2016 edition of the European Journal of Palliative Care (EJPC). (vol. 23.3).
You can also now download the full article free of charge from the website of the Primary Palliative Care Research Group at Edinburgh University.
If you have a web-based subscription to the European Journal of Palliative Care you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online. click here to subscribe online.