Last month, we published the start of an occasional series of posts from members of the ACTION Consortium about their European study that aims to support people with advanced cancer to discuss end-of-life wishes. Today, we hear from ACTION members, Caroline Arnfeldt Christensen, Anna Thit Johnsen and Mogens Groenvold.
In the past couple of months, a newly coined term, ‘Death Talks’, with the dramatic underlying theme “Doctors must learn to take away patients´ hope” has been up for vigorous debate in the Danish media.
The background to this debate was based on discussion about when to stop treatment and the need for greater involvement of incurably ill patients in their own treatment and care. Patient associations, The Danish Medical Association, The National Ethics´ Committee, as well as politicians, were represented in the debate.
As researchers in the ACTION project, a project to assess the effect of the Advance Care Planning programme Respecting Choices on European patients with advanced lung or colorectal cancer, we followed the debate closely. On one hand, we were happy about the debate, particularly the focus on the need for better end of life communication, but on the other hand, the focus on ‘Death Talks’ and “to take away hope” suggested a much too narrow perspective.
While Advance Care Planning (ACP) is relatively well known in several countries in and outside of Europe, it is still a new concept in Denmark. There are no national recommendations about formalised ACP, and at the informal level it is mainly practised in hospices and among staff who work within the specialised palliative field. We do have a so-called ‘Living Will’, where anybody can document their wishes in relation to life-prolonging treatment in two specific scenarios; however, this document is neither well known nor well used.
Having followed the debate about ‘Death Talks’ closely, we got increasingly worried as there seemed to be consensus that this was the way forward: the Secretary of Health and many others in the debate supported the idea. We decided to explain how the debate had focused on only a small part of a bigger picture. As a result, we wrote a feature article for Jyllands-Posten, one of the biggest newspapers in Denmark, which was published immediately. This article focused on describing the concept of ACP, how ACP has a much broader scope than the current debate and that ACP, importantly, has no agenda of taking away hope.
Our article was very well received and contributed to modifying the use of the term ‘death talks’. However, the debate about when to stop treatment and the need for greater involvement of incurably ill patients in their own treatment and care will, of course, continue. Our hope is that we have contributed to a change in how we think and talk about this topic and that the debate will continue with a focus on talks that can have an important effect on living, rather than ‘Death Talks’. One thing is for sure: the time seems more ready than ever for discussing Advance Care Planning in Denmark.
- Follow us on Twitter @ACPinScience
- Read the introductory post about ACTION on the EAPC Blog.
- Look out for more posts in this series in the coming months.
About the authors
Caroline Arnfeldt Christensen is a PhD student at the Department of Public Health, University of Copenhagen, and the Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, Denmark.
Anna Thit Johnsen, PhD, is an assistant professor at the University of Southern Denmark and senior researcher at the Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, Denmark.
Mogens Groenvold, MD, PhD, DMSc is a professor in palliative care and quality of life assessment at the Department of Public Health, University of Copenhagen, and Head of the Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, Denmark.