Dr Marilyn Kendall and Professor Scott A Murray, Members of the Primary Palliative Care Group at the University of Edinburgh, Scotland, explain the background to their longer article published in the Journal of Pain and Symptom Management that looks at 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.
The idea of the danse macabre, the last dance that we must all perform when death steps up and taps us on the shoulder, is well established in Western Europe since medieval times. But what will that dance be like, and who will be there to help us through it? How can we provide good end-of-life care for people dying of all conditions, not just cancer? Perhaps part of the answer to this very complex question involves better understanding of what the experience of dying is like in conditions other than cancer.
We have worked together for more than 16 years as members of the Primary Palliative Care Group at the University of Edinburgh, a social scientist and a doctor. During that time we have conducted various serial interview studies looking at the experiences of patients, and their family and professional carers, as they approach the last year of their lives. The studies have spanned the three main trajectories of physical decline – cancer, organ failure and frailty. This has given us a large and unique data set of narrative accounts of living with, and dying from advanced cancers (lung, brain and bowel), chronic obstructive pulmonary disease (COPD), liver failure, heart failure, and frailty.
In 2014, we gathered together all the researchers who worked on these studies to synthesise their findings and reflect on what we have learned. In our paper, ‘Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients with Cancer, Organ Failure or Frailty and Their Family and Professional Carers’, we have integrated the findings by each trajectory of decline to understand if there are typical beginnings, middles or ends in the last year or so of life. We have shown that patients have very difference experiences, hopes and needs and that death as a character is more prevalent in cancer narratives than the other trajectories, where people tend to have other more pressing concerns, such as to avoid hospital admission or admission to a care home.
By comparing and contrasting these complete narratives, from diagnosis to death and beyond, we have shown that these experiences are so different that service providers could consider how hospices and palliative care can be remodelled in person-centred ways. This is different from the current rather formal configuration, and could provide support and reassurance for patients and families whatever form that final dance takes – whether it is a fast Highland reel, a rather syncopated up-and-down tango or a slow last waltz!
Scott Murray and friends have been taking part in this year’s Death on the Fringe, part of the Edinburgh Festival Fringe. Snippets from the dances were well received! See below for links.
Download a free copy of the full article
This post relates to a longer article, ‘Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients’, by Dr Marilyn Kendall et al, published in Journal of Pain and Symptom Management 50 (2015), pp. 216-224 DOI information: 10.1016/j.jpainsymman.2015.02.017. (You can download the full-text article for personal use until 22 September 2015 – it’s on the Primary Palliative Care Group website in the News and events – blog).
- Death on the Fringe – shows and events looking at death and dying which take place during the Edinburgh Festival Fringe. Some events are serious, some are comical – but they all make you think about what it means to live well and die well. Click here for information on upcoming events.
- Primary Palliative Care Group at the University of Edinburgh
- EAPC Taskforce in Primary Palliative Care.