Subthemes Ethical questions raised by MCD participants
(examples)
Perceived quality of
information given
Is the communication adequate to inform the patient
and family members?
Role of communication in
decision-making
Is the purpose of communication for the family to accept
the medical decision regarding palliative sedation, or is
communication a means of shared decision-making?
Managing different opinions of
family members
How should healthcare professionals communicate with
family members and manage their differing wishes?
due to insufficient communication, which
may have detrimental effects on the whole
treatment process. Ethical issues regarding
professional-family communication were
determined by what healthcare
professionals in each country think about
whether palliative sedation is
predominantly a medical decision (like in
Belgium, Germany, the Netherlands, and
the United Kingdom) or -if the patient is
incapacitated- primarily family members
should lead decision-making (e.g., in
Hungary and Italy). In the first case, the
purpose of communication is to understand
and accept the medical decision on
palliative sedation for the family members.
In the second case, communication is a
process for mutual understanding and
shared decision-making regarding palliative
sedation.
Healthcare professionals expressed that
sometimes communicating and going
through the process of palliative sedation is
more difficult with the family members than
Table 2. Ethical issues concerning communication
35 with the patient, questioning how to
communicate properly with family members
with different information needs and how
to consider their contradictory wishes if the
patient is incapacitated. Therefore, MCD
participants emphasized that the team
should communicate regularly and in a
unified way, ensuring that patients and all
family members are informed.
Differences between the countries
MCD participants agreed on the main
ethical priorities (respecting patient's
autonomy, open and honest communication
as part of a process, and providing support
for the family); however, the countries
appeared to differ in everyday clinical
practice. In Western European countries,
like Belgium, Germany, the Netherlands,
and the UK -where hospice and palliative
care are more developed- decision-making
on palliative sedation was considered to be
primarily based on medical opinion.
Healthcare professionals also highlighted