Dr Ebun Abarshi, an experienced researcher on the EUROIMPACT Project, provides the background to an internet-based survey that is reported in the March/April issue of the European Journal of Palliative Care.
Symptom management at the end of life can be very challenging both for patients and practitioners. Palliative sedation is a ‘last resort’ treatment option that can be used in selected cases of unbearable and refractory suffering. There have been a lot of debates about the correctness of this practice. In 2009, a European Association for Palliative Care (EAPC) White Paper recommended a framework for the use of sedation in palliative care to address widespread concerns. A lot of work went into the preparation of this paper especially since it addressed a topical issue that cut across cultures, professional expertise and international boundaries.
There is some evidence that formulating guidelines on issues that are unclear such as these, can help to underscore important and appropriate treatment policies; increasing awareness and encouraging adherence to proven methods, thereby improving practice. The EAPC has demonstrated that it values the dissemination of this White Paper by encouraging its translation into other languages, e.g. German and Romanian.
How did we ascertain members’ awareness of this White Paper?
In August 2012, I conducted an Internet survey; I emailed questionnaires to individual and collective members of the EAPC, asking if they were aware of the EAPC’s recommended framework for palliative sedation. I also asked them about their own institutional or national guidelines on the same subject, and solicited copies of these. I reckoned that if these members were ‘aware’ of the White Paper, it was likely they had read the White Paper and were at least familiar with its recommendations.
What did the survey tell us?
Almost 100 members from 37 nations responded to our survey: physicians, nurses, researchers, pharmacists, and psycho-spiritual care providers (see Figure 1). Over two-thirds of them were aware of the White Paper: 18% and 58% reported their country had and had not adopted the White Paper for use respectively, while 24% did not know if that had been the case.
Was the survey beneficial?
The survey provided fresh information on member awareness of an EAPC White Paper, and useful feedback on the practice of palliative sedation from end users. Besides, members submitted their own guidelines and /or referred me to their palliative care national representatives. This was especially useful because I conducted a study appraising existing guidelines on palliative sedation – many of which were not listed on any website or database.
Unfortunately, it was difficult to know the exact number of members who did /did not receive my questionnaire (or reminder). Despite advances in information technology, I could not tell how many questionnaires were lost in transit or landed in spam boxes! I observed that several members were aware of this White Paper and the ongoing debates on the use of palliative sedation and therefore my survey served as a useful pilot study for doing further research. However, I think that there is some room for improving awareness, especially among non-clinicians and policy makers.
Download a free copy of the longer article from the EAPC website…
This post relates to a longer article, ‘Awareness of the EAPC’s recommended framework for the use of sedation in palliative care: an internet-based survey’ by Ebun Abarshi and Sheila Payne, published in the March/April 2014 issue of the European Journal of Palliative Care (vol. 21.2). You can download a copy of the article here.
If you already have a web-based subscription to the European Journal of Palliative Care you will be able to download this issue, plus all articles in the EJPC archive.You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.
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