Jenny van der Steen and Ida Korfage, chairs of the EAPC Task Force on Advance Care Planning in Dementia, which is a joint venture of two previous EAPC task forces, explain more.
Advance care planning can be seen as a complex activity. So is involving persons with dementia in this process … but anyone can see that it may be wise to do this-or attempt it-before capacity limits an individual’s active role. Our Task Force has set ourselves the challenge to provide good guidance on this topic, in the hope that people with dementia, their relatives and their healthcare providers will benefit.
Our first task was to design and develop a Delphi study. A Delphi study involves a process of arriving at a group decision by asking specific questions to a group of experts, over a series of rounds. We have spent many weekend days working on this. The work included analysing input from the panel of experts in practice and research on advance care planning and dementia, developing revised content and feedback for the next round, testing the survey, sending reminders and more. We decided not to do the usual two rounds, but instead plan for four to five rounds, concluding before summer 2022. This provides room to really dive into the matter exposing the ambiguities before we move on to a consensus, or to a conclusion there is no consensus. The personal comments which we receive (some included in the box below) suggest that the considerable time commitment we are asking from the panelists in participating and completing these surveys, will pay off.
| “Thank you for the opportunity. It was an enriching experience.” “Wow, I really enjoyed participating in the Delphi survey. Thank you for the invitation. I am excited to see this progress on developing specific definitions, recommendations, and graphic representations of the ACP progress.” “I have just completed the survey and appreciate the learning opportunity.” “I have completed round 2. I think there were some pretty tough questions.” “It is very interesting and informative work. I look forward to seeing round 3.” |
The data are rich, with numerous well-considered comments from the panel about advance care planning in dementia, which is helpful to us to improve it for subsequent rounds. Its richness may relate also to that fact that panelists from over 30 countries are participating. We purposefully sought for diversity among the panelists’ background, to ensure a breadth of views about how people might think and communicate about dementia, about planning to exert some control over the future, and wishes for family involvement, to name a few. We also sought for input from both those familiar with palliative care but not so much with dementia care, and vice versa.
In collaboration with the panel, we are developing models as part of this process. The panel is providing good overarching, thought-provoking and detailed suggestions to help us improve these. Which is what we need, because achieving a consensus on such a modelis so difficult! Some people do not like models. It is true that models never capture all complexities in daily life. Providing a clear abstraction is a puzzle that needs diverse input and takes many iterations. We knew this from developing the dementia EAPC White Paper care goals model a decade ago. Although this model achieved only moderate agreement, it is being reproduced over and over again and it has been appreciated.
We plan for a publication with guidance on advance care planning in dementia next year, but we are eager to present results for a palliative care and a dementia care audience earlier than this. A big thank you to the Delphi expert panel, to the EAPC for providing such a supportive platform and to Brenda Schakenbos, our assistant, for the joy and effort she puts in developing a great looking survey.
Notes:
EAPC Task Forces are formed by interested EAPC members from a range of disciplines and different countries, who work collaboratively on a specific time-limited project. Find out more here
Links and resources
- Piers R, Albers G, Gilissen J, De Lepeleire J, Steyaert J, Van Mechelen W, Steeman E, Dillen L, Vanden Berghe P, Van den Block L. Advance care planning in dementia: recommendations for healthcare professionals BMC Palliat Care 2018 June 21;17(1):88.
- EAPC Task force Advance Care Planning in Dementia
- Guidance on advance care planning in dementia: a European Association for Palliative Care (EAPC) Delphi study on conceptualisation and recommendations for practice, policy and research. Registered 7 September 2021
About the authors
Jenny T. van der Steen, an epidemiologist from the Netherlands, previously led the EAPC dementia palliative care Task Force which, in 2014, resulted in a White Paper defining palliative care in dementia based on a Delphi study. In 2009, she was the first to receive the EAPC Young Investigator Award (now called Early Researcher Award). The main funding for her research on end of life in dementia is currently provided by the European Research Council.
Ida J. Korfage is also an epidemiologist from the Netherlands. Her research and teaching focus on shared decision-making, advance care planning, e-health and quality of life. From 2016-19 she was elected member of the Board of Directors of the International Society of Quality of Life Research (ISOQOL). She previously co-chaired the EAPC Task Force on advance care planning with Judith Rietjens. This resulted in a White Paper defining advance care planning based on an international Delphi study.
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