Received: 1 March 2019 Revised: 29 August 2019
DOI: 10.1111/jep.13300
SPECIAL ISSUE
Overview of the main challenges in shared decision making in a
multicultural and diverse society in the intensive and critical
care setting
Enrico Giuliani MD PhD1
Alberto Barbieri Prof MD3
1
Department of Biomedical, Metabolic and
Neurosciences, University of Modena and
Reggio Emilia, Modena, Italy
2
Department of Anesthesia and Intensive
Care, AOU Policlinico, Modena, Italy
3
School of Anesthesia, University of Modena
and Reggio Emilia, Modena, Italy
Correspondence
Alberto Barbieri, Largo del Pozzo 71, 41125
Modena, Italy.
Email: alberto.barbieri@unimore.it
J Eval Clin Pract. 2019;1–4.
Accepted: 2 October 2019
| Gabriele Melegari MD2 | Francesca Carrieri MD3 |
Abstract
Background: In shared decision making, health care professionals and patients col-
laborate in making health‐related choices. This process is based on autonomy and
constitutes one to the elements of patient‐centered care. However, there are situa-
tions where shared decision making is more difficult, if not impossible, due to barriers,
which may be related to language, culture, education, or mental capacity and external
factors like the state of emergency or the availability of alternative sources of
information.
Aim: The aim of this paper is to identify some of the main obstacles to the adoption
of shared decision making in an intensive and critical care scenario and discuss poten-
tial ways to facilitate its implementation.
Methods: We conducted a literature review on shared decision making from the
perspective of intensive and critical care specialists.
Discussion: Although the health care context is complex and the variety of situation
that can arise makes it impossible to prepare professionals for every occurrence,
shared decision making process should be structured at an organization level, engag-
ing health care professionals, experts of communication, and patient representatives
coming from different cultural backgrounds, languages, and education to assemble
for all the main procedures, where shared decision making is involved, the specific
information packages health care professionals will use in order to guide them
through the process and ensuring all patients receive a comparable level of engage-
ment. Shared decision making should not become a hindrance for the health care pro-
fessional but on the contrary a way to strengthen their relationship with the patient.
Conclusion: The implementation of the shared decision making approach at an
organization‐wide level improves its quality and effectiveness.
K E YW O RD S
explanation, intensive care, patient‐centered care, shared decision making
wileyonlinelibrary.com/journal/jep © 2019 John Wiley & Sons, Ltd. 1
2 GIULIANI
1 | BACKGROUND
In shared decision making, health care professionals and patients col-
laborate in making health‐related choices. This process is based on
informed consent and constitute the basis for patient‐centered care.
We have witnessed a steep rise in publications dealing with this topic
over the last decade, and in several countries, with different health
care models, the importance of shared decision making has been
stressed in relevant policies.1
Shared decision making has become a fundamental approach in
modern health care that will permeate all decision processes involving
every patient. However, there are situations where shared decision
making is more difficult, if not impossible, due to barriers, which may
be related to language, culture, education, or mental capacity and
external factors like the state of emergency or the availability of alter-
native sources of information.2
Evidence‐based medicine was defined by Sacket et al as “the inte-
gration of best research evidence with clinical expertise and patient
values,” which implies that decisions in clinical practice are made by
the care provider and the patient together based on clinical evi-
dence.3,4 Only a shared decision making model can fit to this
approach where there is a two‐way exchange of information as
highlighted by Charles et al in their definition of shared decision
making.
In order to better define shared decision making, we can focus on
the main aspects of the caregiver‐patient relationship: good communi-
cation, patient's autonomy, active participation to the decision making
process, and patient‐centered approach, customized on the patient's
personal values and preferences.5
Shared decision making is an approach where in the framework of
a good caregiver‐patient relationship, information regarding a medical
decision is shared between the caregiver and the patient so that the
patient, having understood the situation and the options at hand, can
make a decision autonomously. The caregiver has to present the
patient the situation as concisely and clearly as possible based on
the best evidences summarizing the pros and cons of each option.
For an effective shared decision making implementation, personal
characteristics of the patient, such as language, culture, and health lit-
eracy, should be taken into account as they may deeply affect the
4,5
quality of the outcome.
In an intensive and critical care setting, patients and often their
next of kin or legal representatives are faced with complex medical
decisions in a time‐sensitive context that makes the adoption of
shared decision making a challenge.
2 | AI M
The aim of this paper is to identify some of the main obstacles to
the adoption of shared decision making in an intensive and
critical care scenario and discuss potential ways to facilitate its
implementation.
ET AL.
3 | M E T H O DS
We conducted a literature review on shared decision making to iden-
tify some of the key areas of challenge for the intensive and critical
care specialist when implementing shared decision making. Conse-
quently, we selected papers relevant to these specific issues to sup-
port the discussion and draw possible conclusions.
4 | DISCUSSION
It would be unethical to deprive these patients of a founding element
in the patient‐health care professional relationship, so the process has
to be adapted to a changed cultural and communication background to
ensure that critical information for decision making is shared with
patients or their next of kin, when incapacitated.6
Living in a multicultural society, health care professionals have
often to deal with people that have a different cultural heritage: This
may affect not only the way a situation is explained or understood
but also how a problem is perceived and what are the critical decision
making arguments. Cultural diversity affects all aspects of life, and it
could prove disastrous for the patient/health care professional rela-
tionship to ignore these specificities.
The divide can become even greater when patient and health care
professional do not share a common language, as the communicative
nuances that facilitate understanding are lost or severely impaired.7
Cultural mediators can be part of the solution, but they have to receive
a specific training for the medical context they are operating into and
shared decision making strategies. The presence of a mediator, while
necessary, has to be dealt with in the shared decision making relation-
ship, to ensure the highest possible level of trust. Cultural mediators
act as interlinks between health care professionals and patients: Their
role is complex as they have to not only provide language support
making sure the communication between the stakeholders is effective
but also successfully convey the cultural aspects relevant to the
context.8
Moreover, it is important to develop a framework for creating deci-
sion aids tailored to specific cultural groups as this improves the effec-
tiveness of communication.9
Health literacy plays an important role in how patients analyse
information that is shared with them, understand it, and act on it. It
would be unwise to assume that a standard, one‐size‐fits‐all approach
can be used in shared decision making with every patient.10 Health lit-
eracy can affect what a patient perceives as harmful or fearsome and
its consequences: In particular, a higher degree of health literacy is
helpful in establishing a more effective shared decision making
approach.11 However, we should not automatically think that higher
degrees of education correspond to an easier shared decision making
process.
Finally, mental capacity is the single greatest obstacle to the
shared decision making process as it has the potential to remove
the patient, the most critical element from the process. Health is a
deeply personal issue and not always seeking counsel from a next of
GIULIANI ET AL. 3

kin may be the best approach to respect the true will of the patient. has to be structured at an organization level, engaging health care pro-
However, in the absence of clear indications from the patient regard- fessionals, experts of communication, and patient representatives
ing their decision on a specific issue related to health, a next of kin, coming from different cultural backgrounds, languages, and education
tutor, or legally authorized representative are the only options to try to assemble for all the main procedures, where shared decision making
to act in accordance to the will of the patient2. The focus of shared is involved, the specific information packages health care professionals
decision making in this case shifts from addressing the person directly will use in order to guide them through the process and ensuring all
involved to a third subject, who has legal or moral ties with the patients receive a comparable level of engagement. Health care pro-
patient. The set of information required to make a choice is different, fessionals should be trained at an organization level to implement a
and especially for the most difficult choices, external ethical counsel shared decision making approach in accordance to the guidance docu-
may be needed. ments provided to maximize the beneficial effect a better patient/
It is extremely likely that patients have sought information before health care professional engagement can have.2,5
engaging with health care professionals, which on one side is beneficial
as it may help the patient clear out some doubts in advance and take a
more mindful decision, and on the other side, the unfiltered access to 5 | CONCLUSIONS
sources that may not be reliable or clear for a layperson can interfere
In conclusion, shared decision making has become a fundamental prac-
with the patient/health care professional relationship adding a layer of
tice in health care for all procedures involving a patient. It would be
confounding data that has to be dealt with before tackling the main
unethical to use this approach only in selected cases, but there are bar-
issue.
riers that may render this approach impractical and ineffective. Cul-
Moreover, some of the situations where shared decision making is
ture, education, language, mental capacity, and state of emergency
more critical are emergencies, when there is often no time for the
are all factors that make engaging the patient in a meaningful, proac-
proper involvement of patients or their next of kin. The patient can
tive way more difficult if not impossible. Although the health care con-
be incapacitated, due to the severity of the medical condition (ie, trau-
text is complex and the variety of situation that can arise makes it
matic brain injury), with no contact to be consulted, or there simply
impossible to prepare professionals for every occurrence: Organiza-
can be no time. Shared decision making is very important and should
tions should try to create information packages for all the procedures
be pursued during emergencies if possible. The health care profes-
where shared decision making is used as tool to aid the health care
sionals involved in the management of the patient during the emer-
professional in communicating effectively all the relevant pieces of
gency should identify the most effective and relevant set of
information to allow the patient or their next of kin to reach an
information to be shared with the patient or their next of kin/tutor/
informed decision. Leppin and colleagues have explored this approach
legally authorized representative to allow them to reach a decision in
with a toolkit to facilitate the cross‐organizational spread and scale of
a time frame compatible with the management of the emergency. A
a shared decision making intervention called the Statin Choice Conver-
specifically appointed professional within the care team can be trained
sation Aid to support the recommended shared decision making
and dedicated to shared decision making, which can make the process
approach in determining whether to use statins to prevent cardiovas-
more effective, allowing it to be more seamlessly integrated into the
cular events in at‐risk patients.14 Training and capacity building, sup-
emergency management of the patient.
ported by specifically designed aids, in both health care professionals
A combination of these impeding factors is not only possible, in an
and patient has the potential to improve shared decision making and
emergency and critical care setting, but also quite likely, making shared
the patient‐reported quality of care.15 Shared decision making is about
decision making more challenging especially when the care team is fac-
autonomy, relational autonomy, patient‐centered care, communica-
ing a time‐sensitive issue, like, for example, having to start an invasive
tion, and interpersonal relationship, so these information packages
treatment in a patient lacking the capacity to consent, with nobody to
are a support to capacitate health care professionals to communicate
contact to ascertain their will.12
effectively, mentioning all relevant details, act ethically, guaranteeing
Finally, there are barriers to adoption of a shared decision making–
that patients and their families are adequately involved in the deci-
based approach also from the stakeholders involved. Physicians and
sions that pertain to their health, and develop intercultural compe-
other members of the care team have little time to dedicate to shared
tences, by facilitating the understanding of cultural differences and
decision making and often have not received a proper training;
suggesting more inclusive strategies. The effectiveness of the
patients on the other side may not wish to be involved in the decision
approach is greatly improved by an organization‐wide adoption, with
making process due to specific characteristics of the disease, like can-
the aid of specific training for the providers.
cer, fear, anxiety, and lack of information.
Shared decision making should not become a hindrance for the
Shared decision making is a fundamental process of modern health
health care professional but on the contrary a way to strengthen their
care, which presents several challenges due to specific aspect of the
relationship with the patient.
patient, the health care professional, or the context in which the rela-
tionship is taking place.13 It has profound impacts on the trust
between the patient and the care team, the quality of the service, CONFLICT OF INTERE ST
and ultimately even on the level of litigation. Therefore, this process The authors declare no conflict of interest.
4 GIULIANI
OR CI D
Enrico Giuliani https://orcid.org/0000-0001-7140-7850
Gabriele Melegari https://orcid.org/0000-0003-4512-4835
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How to cite this article: Giuliani E, Melegari G, Carrieri F,
Barbieri A. Overview of the main challenges in shared decision
making in a multicultural and diverse society in the intensive
and critical care setting. J Eval Clin Pract. 2019;1–4. https://
doi.org/10.1111/jep.13300