During the past ten years guidelines for
palliative sedation have been increasingly
developed in order to guide medically
appropriate and ethically acceptable
practices for palliative sedation. However,
the quality of these guidelines varies,
updates are often slow or absent, and the
practice implementation remains unclear.
Until now, guidelines for palliative sedation
are mostly based on expert consensus
because data from prospective clinical
studies are scarce. (4) Therefore, the PalSed
project aimed to provide more research data
about palliative sedation practice in Europe.
Part of these results have been published
and will be summarized in this eBook. Other
parts are still forthcoming. Firstly, a
literature review was performed. The results
of this review can be read in the next
chapter. In addition, a survey was sent out to
contact persons in European countries
covering several topics surrounding palliative
sedation like the use of guidelines, and
medication use. Secondly, prospective
patient research has been performed in
clinical centres across five European
countries. This will be reported on in the
near future.
Additionally, an adjacent interview study has
been performed with relatives and
caregivers to investigate their experiences
with palliative care and palliative sedation in
particular. This interview study is still
ongoing. Thirdly, a moral case study has
been executed in eight European countries.
In these moral case deliberations, caregivers
discuss palliative sedation cases from an
ethical perspective. This study will be
described in Chapter 2.
Finally, an update of the 2009 EAPC guideline
has been given using a Delphi panel. This will
be described in Chapter 4. Future results of
the project include policy workshops to
inform a broad public including policymakers
on the subject of palliative sedation and the
findings of the project, as well as a closing
congress that will be planned for the end of
2023, spring of 2024. Therefore, this eBook is
not a complete report on the EU project, but
it highlights important topics that can be
further deepened in the concomitant online
course.
There is always a project behind the project.
Apart from performing studies and delivering
milestones, there is also an important
objective to collaborate in a European
context. A context, we have learned, that is
diverse. Countries and cultures vary in the
way palliative care is organised, how
communication at the end of life takes
shape, and how much experience there is
about palliative sedation. An important part
of this project, before any study could start,
was therefore to explore the common
ground. For example, discuss clinical cases
during consortium meetings and agree on
work definitions and terminology. The Covid19 outbreak
had us -and many othersmoving from
partly live to online-only
meetings. On a monthly base, executive
board meetings were held to keep progress,
even in difficult circumstances.
This European project provides a lot of new
research data about palliative sedation. The
aim however is not only to enrich the
research literature but also to have an
impact on clinical practice. With this aim in
mind, we hope that this eBook will be used
as useful supportive material for the Massive
Open Online Course.
The Palliative Sedation
Research Project
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