Serena Barello, Guendalina Graffigna
Engagement-sensitive Decision Making:
Training Doctors to Sustain Patient
Engagement in Medical Consultations
Abstract: Questioning about “how to talk with patients” and how to make them
engaged in healthcare decision making is currently a policy imperative for Western
healthcare systems. Making patients active participants of their care process is increas-
ingly advocated as an ideal model for medical consultations, as it has the potential to
deliver better health outcomes and a more efficient use of resources through retain-
ing patients’ autonomy and self-determination. However, beyond the evident benefits
of patient engagement in healthcare, it should be also considered that doctors – in
their daily practice– are commonly challenged by the diversity of situations that arise
when they attempt to engage health consumers in clinical decision making. Indeed,
consistently engaging patients in daily clinical practice asks doctors to be able to rec-
ognize that patients’ different clinical statuses and engagement dispositions might
require different relational styles. Clearly, different situations require different com-
munication approaches and doctors should be trained to adapt their relational style
according to the specificities of such situations. This chapter will be devoted to dis-
cussing the opportunities offered by an “engagement-sensitive decision making” in
order to orientate doctors’ relational skills and decisional style according to patients’
needs at each phase of the health engagement process. Insights for medical education
and the potential value of new technologies aimed at improving doctors’ relational
strategies to improve patient engagement will be also provided.
Keywords: Patient engagement; shared decision making, patient doctor relation;
medical education; medical communication
Patients and consumer advocacy groups are expressing increasing interest in real-
izing true partnerships with their clinicians and in being engaged across the care
process, with real-time access to their own medical records, to science-based com-
parative effectiveness information, and to health care delivery environments built to
enhance both safety and personalization of medical care (Barry et al., 2012). Patient
engagement in healthcare, as one of the six major initiatives of the National Priorities
Partnership of the National Quality Forum in the US, is recognized to sustain the cre-
ation of more informed and engaged patients as decision makers in the care process
(Cassel & Guest, 2012).
79 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
Doctors and managers are thus increasingly more committed to actively engag-
ing patients in the whole care process – thus favoring an effective and productive
exchange between the demand and supply of health services. In particular, if we
consider the setting of the clinical consultation, patient engagement finds its best
realization in a two-way active partnership between the patient and his/her doctor in
making decisions about treatments plans.
In this chapter, authors will discuss the usefulness of the People Health Engage-
ment (PHE) model (see Chapter 2) to orientate both clinicians and managers when
they relate with patients. We advocate the need for considering the engagement
phases the patients are passing through in order to successfully communicate with
them and to promote high-quality and satisfying clinical consultations and effective
treatment plans. This chapter also has the aim to show to the reader the relevance
of the PHE model for planning educational interventions for doctors to help them in
practicing communication models which are truly aligned with the patient’s engage-
ment needs and expectations.
2 PHE Model as a Road Map for Guiding Doctors
Engaging Patients in Decision Making
Although great efforts have been made to ensure that patients are informed and
actively engaged in decisions about their treatment options during medical consul-
tations (Kitson et al., 2013), patient passivity in this process has been neglected so
far. The focus has been often on supporting the process if and when a patient is just
engaged, rather than working out how to effectively engage patients and to accom-
pany them in understanding the features and the benefits of shared decision making
with their doctors (Oates et al., 2000; Tinetti & Fried, 2004; Tinetti et al., 2012). It is
as if the value and opportunities of being actively involved in decisions are taken
for granted without the possibility of a voluntary and beneficial patient passivity
in decisional situations. An active role in decision making could be unexpected for
many patients and may even be uncomfortable due to the high cognitive and emo-
tional burden requested. We cannot expect patients to change their desired decisional
behaviors just because they are given an opportunity to actively engage in their health
management. It is curious that the majority of educational interventions were sub-
stantially invested in shifting clinician’s attitudes, despite their not having invested
similar efforts in preparing patients for this new type of patient-doctor relation.
Beyond the demonstrated benefits of patient engagement in healthcare (Hibbard
et al., 2013), we should also consider that doctors – in their daily practice– are com-
monly challenged by the diversity of situations that arise when they attempt to engage
health consumers in clinical decision making. Indeed, engaging patients in daily
clinical practice consistently asks doctors to be able to recognize that patients’ dif-
PHE Model as a Road Map for Guiding Doctors Engaging Patients in Decision Making 80
ferent clinical statuses and engagement dispositions might require different ways of
interaction with them. Clearly, different situations require different communication
approaches and doctors should be trained to adapt their relational style according to
the specificities of such situations (Barello & Graffigna, 2014).
Let us consider that patients’ preferences for being actively involved in medical
consultations may be affected by demographic variables (Kaplan et al., 2005; Belcher
et al., 2006), their socioeconomic status (Fraenkel et al., 2007), their health literacy
level (Mistry et al., 2010), their illness and care experience (Barello et al., 2014), their
diagnosis and global health status (Barello et al., 2014), the type of decision they need
to take (Barello et al., 2014), the amount of knowledge they have acquired about their
condition, their attitude towards engagement, and the ways of interactions and rela-
tional styles they have experienced with their doctors (Fraenkel et al., 2007; Chewn-
ing et al., 2012). Moreover, it is matter of fact that patient’s attitudes towards engage-
ment in their health decision making are likely to change over time as they become
experienced in health management and may change at different stages of their illness
journey (van den Brink-Muinen et al., 2006; Mistry et al., 2010)
So, while patients’ preferences for being engaged in decision making are vari-
able, doctors– at the same time – should be prepared and skilled enough to adapt
their communicational behaviors and decisional style according to the patient’s psy-
chosocial, cultural, and medical condition. However, in contrast with this require-
ment, a growing body of research has showed that doctors often do not take into
account patients’ engagement preferences; rather, they often promote or recommend
specific treatments rather than consider the patients’ expectations of being involved
in their care decision making process (Floer et al., 2004; Fraenkel & McGraw, 2007;
Légaré & Thompson-Leduc, 2014). Thus, research in the medical education field high-
lighted the importance of designing medical training aimed at shaping doctors com-
munication and relational skills according to the principles of patient-centered care
(Bensing, 2000; Makoul, 2001; Stewart, 2003).
Active patient engagement in decision making about care, in which both phy-
sicians and patients exchange information, communicate expectations and prefer-
ences, share values, and make decisions together – more known as shared decision
making– has been widely recommended by clinical guidelines and embraced in aca-
demic literature (Barry & Edgman-Levitan, 2012; Berello & Graffigna, 2014). Also, the
Institute of Medicine (IOM) has recommended including it in medical school curricula
as a core strategy to improve care quality and delivery (Institute of Medicine, 2004).
However, if we observe daily clinical consultation we can easily notice how the picture
is more complex and varied than the one described by a handbook of communication
in medicine. It is a matter of fact that there are a wide variety of roles and communica-
tion preferences for doctors and patients when involved in clinical decision making
tasks. In the light of the PHE model, those preferences are strictly connected to the
patient engagement phase the individuals are in. Whilst research has consistently
shown that doctors underestimate the patients desired level of involvement in the
81 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
care process (Arora, & McHorney, 2000), it is less clear how much patients actually
want to be involved in making decisions about their treatment and what really affects
their preference for being engaged.
As previously shown in this book (see Chapter 3), the PHE model allows us to
map the journey of patient engagement in care and to highlight the specific mindsets
featuring in each phase. Due to the complex interactions existing among the patient’s
cognitive, emotional, and behavioral enactment towards their health – which changes
along the process – patients’ are characterized by specific needs depending on the
phase they are in. As a consequence, a patient-doctor relationship which would be
effective in creating a sustainable partnership between the actors should take into
account such specificities of the engagement process. Let us consider that the doctors
become a privileged interlocutor for the patient from the moment of the diagnosis
and along the whole care process. If doctor and patient fail in building a solid and
trusted relationship, the risk is that the patient could enact dysfunctional behavioral
responses, often ending with care dropout.
3 Promoting Patient Engagement in Shared Decision
Making: It Takes Two
Patient engagement in medical decision-making is described– at least in theory– as
the best philosophy and decisional style, whereby clinicians engage patients as equal
partners to make choices about healthcare, based on clinical evidence and patients’
informed preferences and care expectations (Cassel & Guest, 2012; Judson et al., 2013).
Today, both patients and health professionals recognize that patients themselves are
in the best position to evaluate the trade-offs between the pros and cons of alternative
medical courses (Makoul & Clayman, 2006). Moreover, patient expectations about
their role in care choices and treatment decision making have been influenced by
living in a society where patients more and more play the role of active and criti-
cal consumers of health services. Readily available access to health information and
treatment options via new technologies – such as the Internet– has increased over
time (Baker et al., 2003). Moreover, social movements– such as female rights move-
ments– have emphasized the primacy of patient’s autonomy and have actively chal-
lenged the medical class (Holmes-Rovner et al., 1996; Charles et al., 1999). Actively
engaging patients is also recognized as helping meet the demands for accountability,
as clinicians can be more open about decision making (O’Connor et al., 2007).
Furthermore, although evidence about the effects of engaging patients in deci-
sions on clinical outcomes is far from being conclusive, treatment compliance and
self-management of long-term chronic clinical conditions have been shown to be
greater when patients mutually agree decisions with their doctors (Barry & Edgman-
Levitan, 2012). The strongest evidence for patients’ engagement in decision making
Promoting Patient Engagement in Shared Decision Making: It Takes Two 82
also comes from studies on the use of decision support tools. An increasing body of
literature suggests that an enhanced participation of patients in decision making
leads to consistent improvements in patients’ health knowledge and more accurate
perceptions of clinical risks, leading to increased confidence when confronting deci-
sional tasks (Couët et al., 2014). Finally, patient engagement also reduces costs to the
healthcare system and clinicians are less involved in legal arguments (Duncan et al.,
Given these extraordinary premises about the positive implications of patient
engagement in decisions on their health, readers may ask why involving patients
in decision making is so challenging, and so difficult to make a routine practice? The
answer to this legitimate question is probably that beyond the uncountable and dem-
onstrated value of this decisional style, this model poses important challenges to cli-
nicians. Let us examine these challenges in more detail.
In order to be implemented, patient engagement in decision making requires
doctors to help their patients in understanding what the reasonable care options are,
then eliciting, informing, and integrating the patients’ informed preferences as they
relate to the available options. However, according to the PHE model and the speci-
ficities of each phase for the patients’ mindset towards their management, engaging
patients in decision making could be effective only if both patients and doctors are
committed to the process and when the patients’ emotional and cognitive status cor-
responds with the skills required by such an active decisional style. There are patients
that prefer not to be told too much about their illness, and patients’ own preferences
for joining in decision making have been found to be weak, showing even more
decline when they were asked to consider increasingly severe illnesses (Fraenkel &
McGraw 2007). Moreover, the emotional stress and anxiety of severe clinical diagnosis
or hospitalization may further affect patients’ judgment, cognitive functioning, and
emotional availability to participate as skilled and aware partners in shared decision
making (Gaston & Mitchell 2005). Considering all these aspects together is a complex
task for doctors in providing the best communication and relational style for each
patient, when also having to take a critical decision regarding the medical course.
Such a complexity, furthermore, makes patient engagement difficult to be translated
from theory into practice, and the lack of clarity about how to communicate appro-
priately according each patient’s features might contribute to clinicians’ documented
failure to apply a participatory approach in decision making.
In order to be effective in engaging patients in decision making, clinicians
should consider the overlap between the different relational and communicational
approaches and flexibly combine them in order to improve their patient-centered
practice along the unique patients’ illness journey.
83 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
4 Towards an “Engagement-sensitive” Decision
Making Style: the PHE Model as an Orienting
Framework for Doctors Communicational Behaviours
Patient engagement in medical decision making could be a challenging act as inter-
acting with the healthcare system can be understandably unsettling for patients, thus,
uncomfortable feelings may inhibit patients from accomplishing this task (Judson et
al., 2013). We would like to extend this reflection by relating it with the nuanced phe-
nomenon of patient engagement that is a process-like experience resulting from a
conjoint cognitive, emotional and conative enactment of individuals towards their
health (see Chapter 3). A lack of synergy between these dimensions may inhibit the
patients’ ability to engage in the whole process of care, and compromise the decision
making process. During this process, patients go through subsequent phases that are
strictly linked to the disease course and the patients’ elaboration of their illness expe-
rience. According to this process-like view of patient engagement, individuals may
be differently available to be engaged in shared decision making along their illness
journey and might require different decisional styles according to their emotional,
cognitive, and behavioral mindset (see Figure 7.1).
As discussed in Chapter 3, patient engagement is a dynamic and evolutionary
process featuring four experiential positions (blackout, arousal, adhesion, and eudai-
monic project) that involves peculiar ways of interaction, roles, and power dynam-
ics between the patient and the doctor that strongly dependent on the phase of the
process through which the patients is passing. To illustrate medical consultations in
which different decision making styles are appropriate, we will consider three clinical
cases that exemplify the situations of patients’ in different states of the PHE model
and their preferred role in decision making. Let us consider that in the early post-diag-
Figure 7.1: Engagement-sensitive decision making framework. Guidelines for doctors.
Towards an “Engagement-sensitive” Decision Making Style: the PHE Model as an Orienting 84
nosis phases– namely the phases of blackout and arousal of the PHE model– many
patients may be not ready to make decisions due to negative emotions and/or fatigued
cognitive functioning (see Figure 7.2).
In these phases paternalism should be the preferred patient-doctor relational
style. In line with the patients’ expectations, doctors are expected to perform infor-
mation management, assess options, and make treatment decisions for patients by
informing them and augmenting their health literacy and basic behavioral skills for
Regarding the patients’ role in decision making, this phase of the patient health
engagement process should require a mere information exchange: patients, in this
way, can acquire through the dialogue with clinicians basic knowledge and skills to
start navigating the healthcare systems without the responsibility of taking decisions
about care plans.
In a more advanced phase of the process – the “adhesion” phase– patients are
more available to be involved in decisions regarding their treatments, but still need to
be encouraged in taking part and require being empowered in regard to their ability
to co-produce their health (see Figure 7.3).
Figure 7.2: Decision making style with a patient in the blackout phase.
85 Engagement-sensitive Decision Making: Training Doctors to Sustain Patient Engagement
In this phase, a consumerist style of decision making seems to be the best
approach to patient doctor interaction. Doctors – considered as technical experts
that provide information and facilitate the patients’ decisions – are here expected to
give information to patients who then make their own decisions. In this phase, delib-
eration is the expected role for patients, who are now able to face formal discussion
about treatment options, care expectations, symptom management and monitoring,
and also share with doctors’ responsibilities about care plans.
A completely shared decision making process arrives when the patients are in the
phase of “eudaimonic project”, and have finally acquired the knowledge, skills, and
emotional balance necessary to effectively engage in their healthcare management,
thus devising renewed wellness plans for their future life (see Figure 7.4).
Doctors are here supposed to share decisional actions with the patients which
should be helped ‘on demand’ to construct, check, and prioritize their preferences,
thus encouraging reflection and the co-creation of decisions. In this phase patients
are able to take decisional control due to the fact that they feel they have power over
the final selection of treatments, and the ability to take most of the responsibility for
Figure 7.3: Decision making style with a patient in the adhesion phase.
Towards an “Engagement-sensitive” Decision Making Style: the PHE Model as an Orienting 86
As demonstrated by the the clinical cases provided, the PHE model might allow
for the highlighting of specificities in the relational dynamics that are feature of the
patient-doctor encounters along the care process, and may help doctors in orient-
ing their communicational behavior. This process-like modelling of patient engage-
ment potentially leads to the reshaping of medical encounters by posing the basis for
a true and sustainable partnership between patients and doctors along the natural
course of the patient’s illness experience. In this perspective, while the process of
patient engagement evolves, the patients’ expectation towards the relational style
of their doctors changes too, thus implying a continuous realignment of roles and
power dynamics (Rodriguez-Osorio & Dominguez-Cherit, 2008; Barello et al., 2014).
As shown, the last position of the engagement process (i.e., eudaimonic project) cul-
minates in the patients’ capacity to gain a positive approach to health management
and to adopt a more active role in medical decision making. In this position he/she
perceives him/herself as a person (not only as a patient) and are able to construct
an effective partnership with the clinician. This can be considered the actual shared
decision making zone, where the clinician may consider the patient a real partner in
Figure 7.4: Decision making style with a patient in the eudaimonic project phase.
87 Engagement-sensitive Decision Making: Training Doctors to Sustain Patient Engagement
Moreover, this broader conceptualization of patients’ engagement is suggestive
of richer guidelines to orientate patient-centered medical communication skills and
power dynamics in the patient-physician encounter. A real “patient-centered com-
munication” includes the sharing of information, but it also focuses on fostering rela-
tionships, managing uncertainty, favoring the patient’s awareness, acknowledging
and responding to the patient’s emotions, and enabling self-management practice.
The clinician who would embrace this perspective will align their relational style
and communicational behaviors with the patient’s agenda and engagement dispo-
sition well enough to encourage patients to get involved in active and shared deci-
sion making at the right moment. Thus, we suggest that clinical consultation which
would be effective in fostering patients’ engagement should not be reduced to the
mere enhancement of patients’ overall health knowledge. Rather, engaging patients
in medical consultations and decision making should also include specific communi-
cational actions aimed at scaffolding patients and passing on those behavioral skills
necessary to accommodate different models of decisional styles. Moreover, we suggest
that patients’ should be educated to participate in decision making and cannot be
pushed to be actively involved in decisions regarding their health if they are passing
through an engagement phase that is not suitable to that decisional style.
Based on this discussion, we suggest planning education for both patients and
clinicians in order to promote a shared enactment of participative decision-making
along the care process. According to this framework and in line with what discussed
in Chapter 4, new technologies (i.e. electronic medical records, web portals, telemon-
itoring…) may be particularly useful in improving patients understanding of their
medical condition. Consumers have access to a variety of sources for such informa-
tion, including physicians, friends and family, printed materials such as pamphlets
and journal articles, community centers, and the Internet. But the innovation in a
participatory decision-making is the use of interactive technology to inform patients
and better attune treatments to their needs. This method of informing patients may
be applied to a variety of medical conditions, as well as general preventive medicine.
Since this approach was first developed in the early 1980s, the use of technology
has been increasingly seen as an effective means of helping patients make informed
choices about their care. Interactive presentations can inform patients of treatment
options, promote health, and teach self-management skills. On this basis, we encour-
age healthcare innovation through the adoption of eHealth tools (i.e. online services,
mobile apps, or other health resources available on computers or smart phones) as
models of innovative ways that providers and patients could use health IT to select
the most appropriate decisional style and treatment options for the individual
patient. Health IT can communicate the individual’s choice to other providers (such
as specialists, pharmacists, and facilities where the individual receives care) so that
additional care sources recognize their preferences. This can avoid unnecessary or
unwanted tests and treatments.
Engaging Patients in Decision Making “from Theory into Practice”: Agenda Setting 88
5 Engaging Patients in Decision Making “from
Theory into Practice”: Agenda Setting for Medical
According to the insights provided by the PHE model, as far as it concerns the patient-
doctor relationship, we advocate the importance of preparing patients for a shared
decision making clinical encounter, partly by changing attitudes towards engage-
ment, and partly by recognizing the appropriateness of this decisional style based
on the patients’ mindset. We also suggest that interventions should be delivered in
two stages: firstly sensitizing patients, followed by to the enabling of shared decision
making (see Figure 7.5). Patients should attend a sensitizing intervention that clearly
explains to them the meaning of taking a shared decision and the effective ways to
do this. Once the patient has made an informed decision to be involved and has a
clear understanding of the benefits related to a shared decisional style, the focus
moves on to the patients’ enablement of shared decision making. This might be done
through helping patients take part in a two-person setting of health decision making,
by offering appropriate decision support tools and question prompt lists. Importantly,
the interventions need to be promoted from within the organization and the patient
should perceive that both the healthcare organization and the clinicians consider
patient engagement as a core value of their practice.
Many clinicians in their routine clinical practice may dismiss the above recom-
mendations as impractical, given the considerable time needed to complete the com-
munication processes outlined above. The diverse tasks of physicians involved in
chronic patient care might limit their capacity to conduct thorough prognostication,
communication, and decision making for different patient engagement preferences
Figure 7.5: Doctors’ communication priorities to engage patients in shared decision making.
89 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
and expectations. Yet, the unique role of clinicians demands that they assume the
primary responsibility for “diagnosing” the best relational style for each patient along
the care process, thus promoting what we called an “engagement-sensitive decisional
style”. As such, the routine conduct of these activities must be efficiently integrated
into routine care. The more clinicians perform patient engagement – in the ways and
time suggested by the PHE model – the better they will be at making it a natural part
of their routine care practices.
The promotion of patient engagement appears likely to continue both in clini-
cal practice and policy making initiatives. Doctors appear receptive to this practice,
and willing to acquire the relevant skills to enact it. However, strategies for the wider
implementation of patient engagement could address how consultations are sched-
uled in chronic patient care, and raise consumers’ expectations or desires for involve-
ment (or un-involvement) by assessing their level of engagement according to the
6 Conclusions: Direction for the Future
Consistently engaging patients in their health care across daily clinical practice
requires practitioners to be able to recognize that different clinical situations require
different approaches and to be skilled enough to adapt and, where needed, inte-
grate diverse methods and styles of patient-doctor communication. The biological
reality of chronic diseases makes communication and decision particularly difficult
since these clinical conditions are often characterized by unpredictable periods of
acute illness, followed by improvement in symptoms and function. Attending to this
uncertainty involves both acknowledging the cognitive aspect of the conversation
(e.g., explaining to patients and families the unpredictable nature of illness and
recognizing the inability of modern medicine to accurately predict life expectancy),
while simultaneously addressing the complex emotions associated with the “roller
coaster” of chronic conditions (e.g., fear, anxiety, and uncertainty). Second, the
chronic nature and unpredictability of clinical courses require that communication
be viewed as an evolving series of dynamic conversations that take into account the
overall health engagement of the patient, and the shifting balance between benefits
and burdens of any treatment or test that is either currently being used or that is
being considered. Patients’ preferences towards engagement in their health deci-
sions may change over time as their illness progresses and their health engagement
experience changes, which further highlights the relevance of an ongoing patient-
doctor dialogue and of the continuous attunement of doctors’ communicational
behaviors. Considering the specificities of each phase of the PHE model, a patient-
doctor relation merely oriented toward shared decision making alone could be inap-
propriate. Leading patients in being actively involved in decisions regarding their
health is monumentally difficult task for doctors. The PHE model, as demonstrated
in this chapter, might contribute to making this task easier both for clinicians and
policy makers. The PHE model may be a sort of “relational compass” able to detect
the patients communicational needs and priorities at each phase of the process. Dif-
ferent phases of the model call for different decision making styles and relational
attitudes. Identifying the appropriate application of those ways of patient-doctor
interaction according to the patient engagement phases, alone and in combination,
would assist clinicians in achieving a true patient-doctor partnership in clinical
It is equally possible, and in many cases desirable, to integrate different models
of patient engagement in decision making as an ongoing process along the patients’
illness journey. In line with this reflection, enhancing patient “engage-ability” in
medical daily practice would require educational interventions targeted at both cli-
nicians and patients. Patients need to believe that they can and should be engaged
in decision making and speak out, and clinicians should be trained to understand
what matters most to patients. Tackling structural and process barriers, such as the
appropriate time and place to do shared decision making and the tools to do it, is
amply suggested. Notwithstanding, unless we address the patient health engagement
phase and its implications for the patient’s availability to be engaged in decision
making through appropriate interventions, active patient engagement in healthcare
is unlikely to become a reality.
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