Subthemes Ethical questions raised by MCD participants
(examples )
Mental capacity
• Fluctuating capacity
• Lack of capacity
How to consider the patient's preferences if his or her capacity
fluctuates?
How to decide and respect patient autonomy if the patient is
incapacitated and his or her preferences are unknown?
Individual versus
relational autonomy
How should healthcare professionals deal with a case if a
patient with the total mental capacity to delegate their
decision-making responsibility to another person?
Conflict between
autonomy and
beneficence
How should we make decisions in case of a conflict between
the patient's (or family members') wishes and beneficence?
Autonomy
Healthcare professionals identified respect
for patient autonomy as the most
prominent principle in all countries when
deciding on palliative sedation; however,
they reported that it was not fully put into
practice, regardless of the circumstances of
the case. The main ethical challenges
related to autonomy were identified as
Table 1. Ethical issues concerning autonomy
33
The main ethical issues concerning palliative
sedation perceived by MCD participants
were centred around two main themes in all
countries: respect for patient autonomy,
especially in the context of decision-making,
and ethical aspects of communication
between the healthcare professionals, the
patient and the family.
having to do with mental capacity, different
concepts of autonomy, and conflicts
between competing moral considerations
(see Table 1).
MCD participants discussed the problem of
fluctuating capacity, questioning how
patients can be correctly assessed as their
awareness and decision-making ability
changes with the progress of the disease
and whether healthcare professionals can
adequately understand such patients' real
intentions (for example, the patient
expresses approval if they nod their head or
could this be an involuntary movement?).
Lack of patient capacity was a further
ethical challenge reported by participants:
they experienced the problem of respecting
patient autonomy if the patient lacked the
capacity to express their wishes. Who
should decide on behalf of the patient and
according to what principles should the
decision be made? (Table 1)
Main ethical issues identified
by healthcare professionals