Classifying the invisible: Building a taxonomy of integrated palliative care initiatives

Dr Benjamin Ewert, Research Assistant, University Hospital Bonn, Germany, was one of the speakers in a ‘Meet the expert’ session at the 14th World Congress of the European Association for Palliative Care (May 2015). Here he explains the background to his presentation.

For patients, effective Integrated Palliative Care (IPC) seems almost invisible in practice. Every time I ask study patients how they recognise whether their caregivers work together in a seamless and well-coordinated manner, responses are quite brief and to the point.

‘Building a Taxonomy of Integrated Palliative Care Initiatives’: Dr Benjamin Ewert (centre) sharing some of the results from an expert focus group in the ‘Meet the expert’ session at the 14th EAPC World Congress

‘Building a Taxonomy of Integrated Palliative Care Initiatives’: Dr Benjamin Ewert (centre) sharing some of the results from an expert focus group in the ‘Meet the expert’ session at the 14th EAPC World Congress

“I don’t have to repeat my patient history all over again.” “Services are available just in time,” or “They [professional caregivers] were already informed,” are typical answers from patients acknowledging that different IPC caregivers adapt, apparently smoothly, to their physical and spiritual needs. Thus, integrated care – a term that is not used by patients and their relatives – saves patients from worrying about the organisation and appropriate tailoring of services. In short: Most of them feel, as one patient put it, “comfortable and well cared for”.

This is good news. Evidently, IPC makes a perceptible difference for patients, especially for those who personally experienced fractured and disjointed care in the past. Yet, the major question remains how do we identify IPC initiatives? What are its indispensable features and when is it truly integrated? Within the InSuP-C project we tried to tackle this problem by building a taxonomy (ie a classification scheme) of IPC initiatives across Europe (figure 1).

Figure 1

Figure 1

Our taxonomy, developed under the supervision of a multidisciplinary and international expert group, consists of eight categories, such as level of care and time frame of intervention, including two to four items each, such as primary or early integration. Taken together, the taxonomy encompasses the process of IPC including structure, interaction and time of integration. Integrated palliative care is provided if all categories can be applied and if in at least one of these categories more than one item can be ticked (figure 2); for instance, if an IPC intervention focuses not only on treating patients but also on consulting and advising their care networks.

Figure 2

Figure 2

Does the taxonomy help to compare an IPC initiative in, say, Hungary, to one, in, say, Spain? The scheme was recently tested during a ‘Meet the expert’ session at the 14th EAPC World Congress in Copenhagen. Three groups were tasked to apply the taxonomy on the backdrop of different patient vignettes to IPC initiatives in one country. Results were mixed: On the one hand, facing the variety of existing IPC interventions in Europe participants confirmed the need for a taxonomy. On the other hand, it became clear that the taxonomy might become at best a yardstick against which different IPC concepts and principles could be presented.

The expert session taught us that the template could be used as a toolkit for policymakers and professional caregivers to enhance their knowledge of IPC and to think about their own services. But a refinement of the taxonomy – based on practical experience – needs further attention in the future.

Links and resources

  • More about InSuP-C on the InSuP-C project website.
  • Read more posts on the EAPC Blog about Integrated Palliative Care and InSuP-C.
  • Click here for more pictures of the 14th EAPC World Congress and to view or download the Book of Abstracts.


This entry was posted in 14th World Congress Copenhagen, EAPC ACTIVITIES, EAPC World Congresses, InSup-C (integrated palliative care) and tagged , . Bookmark the permalink.

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