Only 30 days to #EAPC2019 … The 16th World Congress of the European Association for Palliative Care (EAPC): ‘Global Palliative Care – Shaping the future’ will explore how palliative care fits with the current global health and identify areas where more needs to be done.
Ahead of his plenary lecture at #EAPC2019 in Berlin, Professor Scott Murray, (University of Edinburgh, UK, and Co-chair of the EAPC Primary Palliative Care Research Group), asks us to consider the final dances all our patients will make, and when we should start helping them to bow out in style.
Every death is different. But there are three typical patterns of physical decline that most people follow in their last years, months or weeks of life. These final steps have been known throughout Europe for centuries as the ‘Danse Macabre’ or dance of death. There were paintings and pamphlets illustrating this phase of life as a final dance. This allowed people to consider their final days.However, nowadays death is rarely mentioned, and the general public and clinicians are not so well equipped to deal with it.
So which dances do your patients perform?
We have produced a short, light-hearted video to match the three archetypal illness trajectories to dances, ‘Strictly Come Dying’. (The title is a play on words on ‘Strictly Come Dancing’, a popular UK television series that revived interest in ballroom dancing spawning similar programmes internationally). Watch the video below and hear the dance music.
The relatively short cancer trajectory can be compared to doing a short fast dance. There is a clear beginning and end, and most people (at least in Scotland) know how to do a reel or a jig.
The intermittent course of organ failure with lots of ups and downs is like dancing a tango – which few people know how to do. And the more prolonged trajectory of frailty, or dementia, is like a slow waltz, hopefully in our partner’s arms, but we may slip, or indeed our partner may have died before us. People with multimorbidity may end up at a disco!
Just as knowing the dance steps helps someone dance well, understanding the typical sequence of physical and emotional experiences will help all concerned toward the end of life.
Early palliative care: When and how for generalists?
So how can we know when to start helping our patients to dance as well as possible? How can we best identify triggers for starting an approach to care that include the principles of palliative care, as well as continuing disease management? How can we integrate palliative care in primary care and in routine hospital practice – so that palliative care might go viral like a progressive dance where partners spin off to find new partners from the floor until everyone is dancing?
Learning from more than 1,000 in-depth interviews of people dying from various diseases in all settings, we know that most people want to learn about the experiences of people with illnesses like their own. Understanding typical four-dimensional trajectories allows a nuanced understanding of what early palliative care might look like – ranging from dealing with fears of hospital or care-home admission, being a burden, “losing my marbles” and sometimes about dying. See video in English and four other languages to help train generalists start early palliative care made by the EAPC reference group:
Many tools are available to help generalists screen for palliative care needs, from the simple ‘surprise question’ to more specific tools, such as the Supportive & Palliative Care Indicators Tool (SPICT): (https://www.spict.org.uk), with guidance on how these may be used in different patient groups and settings.
Based on studies with groups in family practice and also in patients with lung, heart, liver and brain failure, we propose how specialist teams might train and support generalists to integrate early palliative care in their standard care. This will allow palliative care to be delivered both at scale and earlier. And remembering just how different the dances can be, we must try to provide care that meets the needs of these different patterns, from start to finish.
Launch of the new 2019 EAPC Toolkit (updated by EAPC Primary Care Reference Group)
Finally, the lecture will call for further development of palliative care in primary care in each European country. Four domains are necessary: supportive policies, education, services and medicines available. Attendees will be challenged to undertake next steps in their countries to form national groups working across all disciplines.
The newly updated EAPC Toolkit will be unveiled, with input from primary and palliative care enthusiasts from 30 countries to support this campaign to reach all in need. By working together to integrate palliative care in primary care, we can support our patients to prepare for their final steps before the curtain closes.
Links and resources
- Contact Professor Scott Murray by email.
- Mitchell S, Tan A, Moine S, Dale J, Murray SA. Primary palliative care needs urgent attention, BMJ 2019; 365:doi: https://doi.org/10.1136/bmj.l1827
- EAPC Primary Care Reference Group website.
- Prof. Scott Murray’s plenary lecture: ‘Early Palliative Care: When and How for Generalists?’ Thursday, 23 May 2019, Convention Hall II at 14:30-15:00, and launch of the new 2019 EAPC toolkit.
- EAPC Primary Care Reference Group Open Meeting: Friday 24 May, Room 4, second floor, 12:55-14:15.
View the congress programme for all other congress presentations and posters. View more posts about #EAPC2019 on the EAPC blog. The abstract for this lecture, and all other abstracts for the 16th EAPC World Congress, will be published on 22 May 2019.