A second issue that emerged was that of
individual versus relational conceptions of
autonomy. (Table 1) While many Western
societies are considered to be
individualistic, which influences the ethical
concepts that are perceived to be most
important, countries will typically have
residents from a variety of backgrounds.
Some patients may wish to delegate full
decision-making responsibility to another
family member for cultural, religious or
personal reasons, even if they have total
capacity. Some MCD participants -with the
background of an individual-oriented
society- reported ethical challenges
regarding understanding and accepting the
patient's decision and respecting the
choices of the proxy decision-maker if the
patient still had full capacity.
Healthcare professionals highlighted
additional ethical issues when they disagree
with the patient's or the family member's
decision, especially when the principle of
autonomy (including individual and
relational autonomy) is in conflict with the
principle of beneficence (defined by
healthcare professionals). (Table 1)
MCD participants found it particularly
important to consider the different
viewpoints of stakeholders in decisionmaking
regarding palliative sedation,
balancing
· The positive outcomes (e.g., the patient's
autonomy is respected, the patient receives
adequate medical care) and
· The negative consequences (e.g., conflict
may arise between the healthcare
professionals and family members if their
viewpoints differ, and decision-making may
be burdensome for the family) of who leads
the decision-making process in specific
clinical cases.
34 Healthcare professionals agreed that
optimal decision-making is shared decisionmaking,
a process involving the patient and
family members through open, honest
communication. Shared decision-making
was mentioned as a practice in some
countries, like Belgium, the Netherlands, the
United Kingdom, and Spain.
Although autonomy was considered
important, in some accounts of clinical
situations provided by participants, patient
autonomy (individual or relational) was
overridden by other moral considerations,
for example, in Germany, the value of
professional conscience (protecting the
family members from the burden of
decision-making). In other cases (e.g., in
Hungary), autonomy was not realized for
practical reasons: without established
institutional rules and practices, healthcare
professionals reported that they did not pay
enough attention to assessing patients' endof-life
care preferences.
Communication
Communication between the healthcare
professionals, the patient, and the family
was the other theme around which ethical
issues perceived by MCD participants were
centred, including the perceived quality of
information given, the role of
communication in decision-making, and
managing different opinions of family
members. (see Table 2)
Limited information giving was identified as
an ethical issue (e.g., in Hungary and Italy)
since the patient or family members make
important decisions based on the
information provided by healthcare
professionals. MCD participants agreed that
patients' and relatives' trust might be lost