Theroleofpatients: Shared Decision-Making

Download as pdf or txt
Download as pdf or txt
You are on page 1of 20

T h e Role o f Pat i en t s

Shared Decision-Making

a b c,d,e,
Emily Beers, MD , Marci Lee Nilsen, PhD, RN , Jonas T. Johnson, MD *

KEYWORDS
 Shared decision-making  Autonomy  Bioethics  Patient-centered care
 Head and neck cancer  Physician-patient communication

KEY POINTS
 Treatment priorities between patients and clinicians may not be congruent.
 Most patients want to be offered choices.
 Treatment options need to be explained.
 Risks and benefits should be outlined and realistic.
 Clinical practice guidelines may facilitate these discussions.
 Decision aids, specifically patient education materials, support informed choices.
 Patient preferences vary.

INTRODUCTION

Most patients with squamous cell carcinoma of the head and neck present with
advanced disease (stage III or IV).1,2 They will face many decisions about their treat-
ment, which can be very difficult for patients and their families. For many patients, the
effects of their cancer and its treatment will persist for years and impact basic function
of everyday life, such as swallowing, speech, and cosmesis. The Institute of Medicine
now recognizes that shared decision-making (SDM) is a central component to
patient-centered care and is essential to improving quality of care, especially in
oncology.3 Sharing in this process with patients helps ensure that they are educated
and informed while incorporating their values and preferences into the decision process.

The authors have nothing to disclose.


a
Section of Palliative Care, Department of Plastic Surgery, 3600 Forbes Avenue, Suite 405, Pitts-
burgh, PA 15213, USA; b Department of Acute and Tertiary Care, School of Nursing, University
of Pittsburgh, 318A Victoria Building, 3500 Victoria Street, Pittsburgh, PA 15261, USA;
c
Department of Otolaryngology, University of Pittsburgh School of Medicine, Pittsburgh,
PA, USA; d Department of Radiation Oncology, University of Pittsburgh School of Medicine,
Pittsburgh, PA, USA; e Department of Oral and Maxillofacial Surgery, University of Pittsburgh
School of Dental Medicine, Pittsburgh, PA, USA
* Corresponding author. Department of Oral and Maxillofacial Surgery, University of Pitts-
burgh School of Dental Medicine, Pittsburgh, PA.
E-mail address: johnsonjt@upmc.edu

Otolaryngol Clin N Am 50 (2017) 689–708


http://dx.doi.org/10.1016/j.otc.2017.03.006 oto.theclinics.com
0030-6665/17/ª 2017 Elsevier Inc. All rights reserved.
690 Beers et al

EVOLUTION OF DECISION-MAKING MODELS

The American Medical Association’s 1847 original Code of Medical Ethics advised
doctors that “the obedience of a patient to the prescriptions of his physician should
be prompt and implicit. The patient should never permit his own crude opinions as
to their fitness to influence his attention to them.”4 This antique, authoritarian model
of patients as passive recipients of doctor’s orders is fortunately becoming a thing
of the past. Despite that slow fade, however, the normative values of that paradigm
that reigned for millennia have not entirely vanished. The increased emphasis on pa-
tient autonomy has in general been good; however, autonomy is itself a complex
concept that has great bearing on the physician-patient relationship.
In the paternalistic extreme, the physician provided a plan that patients obeyed,
removing agency from patients and giving all of the power to the physician. This model
spanned from the time of Hippocrates to the 1970s. In that decade, massive culture
shifts in America forever changed the roles of women, minorities, and society’s view
of authority. This change created a reactionary backlash to the paternalistic past on
many fronts, and medical case law evolved in parallel. The 1972 case of Canterbury
v Spence transformed our health culture by drastically changing standards for
informed consent. Until that point, informed consent for a treatment included a discus-
sion that met the standard of community disclosure, that is, whatever the most physi-
cians in a community would say about such treatment. Canterbury v Spence detailed a
patient who was advised to have a laminectomy for back pain; in his case the surgeon
did not disclose the 1% risk of paralysis for fear that it would cause the patient to reject
the beneficial treatment. When the patient suffered paralysis (either from surgery or a
postoperative fall), the court ruled that the lack of disclosure was a failure on the phy-
sician’s part. The court challenged the concept of community standard on grounds
that it incentivizes physicians to protect themselves by limiting standard disclosure,
which is not a practice aligned with patients’ best interests.5 In that ruling they noted
“.the test for determining whether a particular peril must be divulged is its materiality
to the patient’s decision: all risks potentially affecting the decision must be
unmasked.”6 This ruling resulted in legal codification of a physician’s duty to fully
inform, from which all current standards of informed consent have developed.
Bioethics also had a rapid evolution in that time, and the wave of antipaternalism
caused some to advocate for a cultural reversal of power in the patient-physician
dyad: in this version, patients dictated their preferences for treatment, and the physi-
cian’s role was simply to execute a logical plan that honored those preferences. This
version was the first stirring of patient-centered medicine, a model in which “the object
of our studies is.therapy: not an isolated or specialized medical skill, but the doctor’s
whole professional activity regardless of whether he is a specialist or general practi-
tioner.”7 As the pendulum swung from paternalism to physician as passive executor
of medical possibility, the current standard has settled somewhere in the middle of
those two margins.
In modern SDM, the physician provides the medical facts and treatment options,
patients provide their values, and together they form a plan that best matches the facts
to the values.8 Although this model is far superior to either of the extremes, troubles
remain with the way it is implemented. Firstly, this model presumes facts and values
can remain completely separate. When physicians are giving facts, the data show that
it is rare that they can provide these in completely value-neutral manner. In an analysis
of 1057 audiotaped conversations of medical and surgical outpatients containing 3552
clinical decisions, only 9.0% of basic and 0.5% of complex decisions made met the
criteria for informed decision-making.9 That is, when we deliver information to patients
The Role of Patients 691

we are not just conveying facts but overlaying a complex set of our own values and
symbolism about what is important.10,11 Much of current practice in SDM evolved
from the principles of informed consent. Unfortunately, modern informed consent
has become only more informed over time, as evidenced by medication package
inserts and exhaustive forms designed to protect the physician from liability. When
Canterbury v Spence ruled that all risks must be disclosed, we accelerated disclosure
without proportional increase in patient knowledge.
Secondly, this still deprives the physician of much input: patients’ values are always
seen as foremost; in the era of health care consumers, we are generally taught that the
customer is always right. As drug companies, insurance providers, and clinicians all
battle in the era of cost-containment, every side is scrambling to represent themselves
as patients’ biggest advocate.12 Although it is crucial to be our patients’ best sup-
porter, it is unfair to expect doctors to act as impartial fact-delivery agents without
their own moral systems and values to uphold. Additionally, patients who are ill are
often suffering from fear, anxiety, and uncertainty amid an ocean of freely available,
and sometimes inaccurate or misleading, medical information. They should not be ex-
pected to analyze this in such a state and claim sole responsibility as preference-agent
whom the doctor obeys.
In their pioneering 1979 book Principles of Biomedical Ethics, Beauchamp and
Childress13 outlined the 4 main principles of medical ethics: autonomy, beneficence,
nonmaleficence, and justice. Beneficence and nonmaleficence relate heavily to a phy-
sician’s performance/nonperformance of various treatments for a condition, and jus-
tice is frequently a broader principle of recognizing and overcoming health care
disparities. Autonomy, however, is the elemental core in a patient-provider relation-
ship. In modern medicine, patients’ right to self-determination is rightly considered
sacrosanct. The cutting edge of truly SDM is that it fully supports patients’ autonomy
while not neglecting the physician’s autonomy either. Both parties are seen as able to
provide facts and values. In complex treatment decisions, physicians have an obliga-
tion to explore the patients’ values while presenting the facts. The things that consti-
tute value in life vary significantly from person to person: one may think it is imperative
to be able to perform high-level cognitive tasks, whereas another may find value in
simply being present and aware for one’s family. When physicians make a recommen-
dation, we automatically incorporate our own system of values about quality of life
based on our experiences, which is not a bad thing but something we must remain
aware of. For patients to benefit from our expertise, we must guide them; but in order
to do that best, we must explore their values and goals to give us both a road map and
sense of direction.

COMPONENTS OF SHARED DECISION-MAKING

The increasing emphasis on patient involvement in treatment decisions represents a


new approach to improving the quality of care we provide to our patients. Although
research supports that SDM can improve patient satisfaction, treatment adherence,
and well-being when faced with long-term decisions specific to chronic illness,14
evidence is beginning to emerge regarding the benefits of SDM in oncologic care.15
In order to understand how to begin to implement SDM into clinical practice, it is
important to understand the components or steps that are involved. There are essen-
tially 4 steps to SDM: (1) informing patients that a decision needs to be made, (2)
explaining the treatment options, (3) identifying patients’ values and goals while sup-
porting the deliberation, and (4) making the decision and arranging the follow-up
(Box 1).16–18
692 Beers et al

Box 1
The essential components of shared decision-making

Four steps
1. Inform
2. Explain
3. Identify
4. Make

In order to help illustrate the components of SDM, the authors would like to present
the following case study:
Ms F is a 70-year-old woman. She has a history of multiple head and neck cancers and
has undergone several surgical procedures over the past 15 years, including a partial glos-
sectomy, partial maxillectomy, and resection of the buccal mucosa squamous cell carci-
noma. Ms F returned to the authors’ head and neck clinic as a routine follow-up. In addition
to her extensive head and neck cancer history, she has multiple comorbidities, including
rheumatoid arthritis, diabetes, heart disease, macular degeneration, and advanced
vasculopathy requiring bilateral below-the-knee amputations.
During her initial physical examination, an abrasion was noted on her chin. Ms F
reported that she had fallen several days ago and was going to follow-up with her gen-
eral practitioner about the abrasion. On further examination of her chin, Ms F was
informed that this could potentially be another cancer and she agreed to have a biopsy
done in the office. The authors acknowledged that if the biopsy proves that this can-
cer, it would be advanced cancer and we would need to discuss treatment options. In
asking about her support system, she requested that her niece, who was the durable
power of attorney, be present when the treatment options were discussed.
The pathology results confirmed that the lesion was invasive squamous cell carci-
noma. A follow-up visit was scheduled with the patient, and a computed tomography
(CT) scan was ordered. The CT scan demonstrated that lesion was extensive and
included the floor of mouth with erosion through the mandible into and through the
overlying skin. With her family present during the follow-up visit, all treatment options
were outlined with the benefits and potential side effects.
When asked about her thoughts on the treatment options, Ms F acknowledged that
surgery would be extensive with a lengthy recovery that could be very difficult for her,
especially knowing that the result may not be curative. She was also aware that radi-
ation with or without biochemotherapy was not likely to be curative and may present
additional side effects. During the discussion, Ms F stated that her preference was to
remain at home. With a life expectancy of 4 to 6 months without treatment, Ms F was
referred to hospice agency that was identified by the patient and her family.

Step 1: Informing Patients


Clinical decisions regarding the treatment of head and neck cancer can be complex,
and the best action may not always be clear. With current multimodality treatment,
only 60% of patients with head and neck cancer will be alive at 5 years after diag-
nosis19; for some patients, surgical and nonsurgical options may provide similar sur-
vival outcomes.20 Although preference for the degree of participation in medical
decision-making may vary, most people want to be offered choices and be given an
opportunity to voice their opinion.21 Therefore, the first step is to inform patients
that a decision needs to be made and seek their participation. As demonstrated in
The Role of Patients 693

the case study, Ms F was informed via telephone that her results did demonstrate can-
cer and that treatment decisions needed to be made. She expressed her interest in
having family present, and a follow-up appointment was set up.
Step 2: Explaining the Treatment Options
The treatment options need to be explained to patients in a neutral manner, including
open and honest communication regarding their prognosis and treatment outcomes.
Discussing the treatment options, including benefits and potential side effects of treat-
ment, can help build a trusting relationship between the physician and patients. The
risk and benefits need to be outlined for each treatment options in terms that are clear
and meaningful for patients. It is also important to assess what patients already know
because they may have existing knowledge from other sources (eg, Internet, word of
mouth) and verify patients’ understanding by asking them to explain what they
perceive the treatment options to be. In terms of the authors’ case study, all potential
treatment options, including the options of no active treatment but instead palliative
and supportive care, were presented.
Step 3: Identifying Patients’ Values and Goals
Although discussion of patient preferences and goals can be incorporated into discus-
sion of the treatment options, many patients may not have clear preferences at the
onset of the discussion. It is important that physicians help guide patients in identifying
their preference through asking open-ended questions that explore what matters to
patients. When discussing pros and cons of treatment, it is imperative that we explore
the relevance of the outcome to patients. When treatment priorities are compared be-
tween patients and clinicians, they are often not congruent.22–26 Ms F was allowed
time to express her thoughts on the treatment options. With her prior treatment his-
tory, Ms F was aware of the potential effect of the treatment options and the extent
of recovery that would be involved with surgery. She acknowledged that being
home and the avoidance of further toxicities of treatment were important to her.
Step 4: Making the Decision
Once we have established the treatment options and what outcomes are important to
patients, the actual decision-making can occur. The physician should summarize what
has been addressed and ask for patients’ input or opinion. Depending on the patient
and situation, patients may need time to think about the decision or may want to
discuss it with their loved ones. If not, the physician and patients can agree on how
to proceed. In this case, Ms F and family had an extended discussion in the treatment
room before making a decision. The treatment team worked with Ms F and her family
to find a hospice agency to help continue her care and symptom management.

STATE OF THE SCIENCE IN SHARED DECISION-MAKING


Multidisciplinary Team Management
Head and neck cancers represent a heterogeneous group of malignancies, which require
multimodality therapies; therefore, a multidisciplinary teams (MDTs) approach has
become the standard care. MDTs have been shown to have an impact on patient assess-
ment and management.27,28 Although overall there is limited evidence that MDT manage-
ment improves cancer survival,28,29 one report showed that for patients with stage IV head
and neck cancer, there was an improvement in survival when managed by an MDT.27
The focus of MDT management, such as tumor boards, is to make individualized
treatment decisions for patients based on their clinical presentation. Although treat-
ment plans are patient specific, there is emerging evidence to support that this
694 Beers et al

approach may not be patient centered. Instead, it may present a barrier to effective
SDM as patients’ values and preferences are not acknowledged during the MDT’s
treatment discussion; this has been described as health care “in absentia.”30–32
When patients’ wishes and values are not fully identified or considered during the
MDT meeting, a discordance between the MDT’s recommendations and treatment
implementation can occur.33

Clinical Practice Guidelines


Clinical practice guidelines (CPGs) are another way to help physicians structure dis-
cussions about treatment plans while incorporating the best possible evidence-
based medicine. CPGs can be a jumping off point when evidence does not yet give
us a clear direction,30 such as whether to consider primary chemoradiotherapy for
oral cavity carcinoma when surgery has been the historical standard of care.34 The Na-
tional Comprehensive Cancer Network (NCCN), American Society of Clinical
Oncology, and European Society of Medical Oncology have all released CPGs to
help providers guide patients in a world of an ever-expanding evidence base. Yet
despite the development of consensus-based treatment guidelines for cancer,
many physicians do not always routinely address the consensus topics in daily clinical
practice.35 In the case of patients with head and neck cancer, reduced compliance to
the NCCN’s guidelines has been shown to be correlated with lower overall survival.36

Decision Aids
One of the newest developments in the quest for better-informed patients in a busy
clinic is the use of decision aids (DA), specifically formulated patient education mate-
rials designed to improve patient knowledge and support informed choices. DAs for
both prevention and treatment decisions have just undergone their fifth Cochrane re-
view, which shows that the evidence continues to mount in favor of their use. Quality
evidence demonstrates DAs increase patient knowledge, reduce decisional conflict,
stimulate a more active role in SDM, and improve accuracy of risk perceptions of treat-
ments.37 Unfortunately, in the oncology world, DAs tend to be more common for pre-
vention and screening as opposed to treatment38 and DAs specific to patients with
head and neck cancer are surpassingly rare.39 The International Patient Decision
Aid Standards Collaboration has developed extensive criteria and guidelines to assist
practitioners in formulating such materials, clear information delivery, methods to elicit
patient values, providing structured guidance, peer review, and using plain language
(eighth-grade reading level).40,41 A successfully proven DA in oncology patients is the
question prompt list (QPL).42 The QPL is a booklet of questions about various dimen-
sions of care designed to assist patients when their doctor asks if they have any ques-
tions and they may struggle to respond to all of the information. The University of
Sydney has made this a printable booklet freely available online.43 New Web-based
DA platforms allow more rapid development of content that can be easily tailored to
specific patient demographics.44 The world of DAs in head and neck cancer is a
largely unexplored frontier but one that has promise to improve communication
without adding additional visit time.45,46

CHALLENGES
Patient Preferences Vary
Talking to patients about their desired role in decision-making is a critical part of treat-
ing physicians’ role to help assure patient satisfaction with the process. Over the
course of time, patients have tended to have an increasing preference for a more
The Role of Patients 695

active role in treatment decisions47–49; however, there are many factors that influence
patients’ decision-making preferences. In general, most patients want to be offered
choices and asked their opinion; none the less, a substantial portion may still prefer
to leave final treatment decisions to the physician.50–52 A critical part of the physician’s
duty is to ask about patients’ decisional preferences, which creates higher levels of
accord with patients’ goals. When patient decision-making preferences are met or
exceeded, patients have less conflict over the treatment decision, more satisfaction
with their ultimate decision, more satisfaction with the consultant’s communication,
and perceived higher levels of their oncologist’s use of SDM skills compared with
patients who were less involved than they hoped to be.53
Patients tend to fall into 3 broad categories of decision-making preference: active,
collaborative, and passive. Active patients wish to make the final decision about care
after hearing the doctor’s opinion; collaborative patients prefer to equally share re-
sponsibility for decision-making; passive patients wish the doctor to play the central
role in choosing a treatment.54 Although metrics somewhat vary, in general, approxi-
mately half of patients prefer a collaborative role, whereas the remainder are divided
fairly evenly between preference for an active or passive role.52,55–58 Patients who are
younger, more educated, and of higher income tend to prefer an active decision-
making role.51,54,59,60 Patients who are older, nonwhite, and with lower socioeconomic
status tend to have less satisfaction with decision information and are more likely to
have knowledge gaps when providing informed consent.61–65 Physicians must remain
vigilant for their own racial bias, as those with implicit bias were rated as less support-
ive, spent less time per patient, and caused less patient confidence in and adherence
to the treatment plan.65 Studies have shown inconsistent results in terms of sex trends
for SDM preferences, but it is worth noting that women are less likely to describe their
role as active despite expressing a preference for an active role.55
There has been much focus recently on active patients’ role, which is concordant
with the trend away from paternalism. Despite this movement, however, incongruity
between hoped-for and actual SDM outcomes persists. A meta-analysis of preferred
versus actual decision-making roles in patients with cancer indicated a significant de-
gree of discrepancy between the level of engagement patients preferred and what
actually occurred.66 Almost all patients in this review desired a higher level of engage-
ment than transpired. In a separate sample of oncology patients, those who described
physician-controlled decisions were less likely to report excellent quality of care,
regardless of their stated decision-making preference.67
Even as we work toward increasing concordance between patient and physician
decisional styles, there remains a substantial body of patients who still prefer passive
decision-making left to the physician’s judgment. Oncology patients who have a pas-
sive role tended to use less engagement in their coping strategies, that is, less active
coping, planning, humor, or positive reframing. In addition, they have less resilience
and higher levels of fatalism.59 Cognitive coping style is also associated with patients’
need for information, involvement, and satisfaction with SDM; importantly, even
patients with an avoidant/blunting coping mechanism still desire significant amounts
of information.45,68

Lack of Time and Training


Given the substantial evidence that exploring patient communication preferences and
individually tailoring information delivery is critical for satisfied, informed patients, why
does this not happen more consistently? Another pressing concern for head and neck
cancer clinicians is the perceived lack of time or training to have such conversations.
In busy surgery and oncology clinics, it can seem impossible to have the time to
696 Beers et al

complete necessary documentation, much less for complicated discussions about


difficult treatments decisions with no easy answers. This point is particularly true
when conversations must involve shifting treatment focus to palliation or hospice
care: we know clinicians often have these discussions poorly and too late.69,70 Doc-
tors ranging from trainees to senior clinicians often feel unprepared to have conversa-
tions that may include emotional reactions and address challenging treatment-related
side effects.70–72 Many providers fear that honest discussions with patients about diffi-
cult topics will take away their hope and reduce quality of life, but fortunately there is
little evidence to support this fear.72,73
As we consider various treatment options for patients with head and neck cancer,
clinicians must be aware of our tendency to err when discussing prognosis. We are
systematically overoptimistic; the closer our relationship with patients, the more likely
we are to overestimate survival74: the Lake Wobegon effect.75 A recent meta-
analysis indicated less than half of patients with advanced/terminal cancer under-
stood their prognosis accurately.76 Although most patients want to know specific in-
formation about prognosis, some remain more ambivalent.69 The best way to avoid
oversharing for those who find hope and data irreconcilable is to solicit preferences
for level of detail early in the discussion and to allow some ambiguity if patients or
caregivers eschew specifics.77 Clinicians sometimes do this instinctively when giving
bad news to soften the blow, such as saying: Average survival for people with this
disease is 6 to 9 months; but you never know, it is different for everyone. Often
when patients say they do not want to hear bad news, it is an emotional reaction;
they frequently need time to process before they are ready to hear it. Some patients
will want to know what to expect physically but will not want to know the specific
time prognosis. The only thing we ethically must avoid is therapeutic privilege,
wherein we decide to withhold specific information for fear the information itself
will harm patients. Asking permission to disclose serious news is the best way to
assure one does not give troubling news to patients. Having family present is also
helpful, as they can often serve as a buffer and be available to hear news that
patients may not be ready for.78
Although time is frequently a concern, satisfaction with treatment decisions can reli-
ably be achieved in a 30-minute consultation for patients with advanced cancer.56
Most clinicians worry about the more difficult discussions as being time consuming,
but it is reassuring to consider that only a certain portion of patients per day will
need the time resources potentially involved in more difficult discussions. Goldstein
and colleagues79 diagrammed the level of involvement in SDM required throughout
patients’ illness.
It is worth noting that the peak of the curve is where the benefits of SDM are
most critical and the physician is potentially most involved. For many patients, the out-
comes are much more predictable; in those cases, informational aids for the physician
and patients are the tools to help have efficient, effective discussions.

Barriers to Transitioning to Palliative Care


When patients with advanced head and neck cancer are reaching the end of their
curative treatment options, transitioning to a more palliative approach is warranted.
Despite the continued expansion of the field, many barriers to the implementation of
palliative care persist. A major barrier is the perception that palliative care is limited
to the time when curative treatment is forgone.80,81 In reality, palliative care has a
goal of high-quality symptom management and care planning in advanced illness,
both when aggressive curative treatment is being pursued and thereafter. Early palli-
ative care intervention has been shown in multiple meta-analyses to improve symptom
The Role of Patients 697

burden and reduce distress without detriment to caregivers82–85 and reduce cost,86,87
and randomized controlled trials have shown increased survival.88,89 The literature in
patients with head and neck cancer is far more limited. A recent review by Liao and
colleagues90 identified some common barriers to transitioning to palliative treatment
in this group of patients, including physician’s incorrect estimation of symptom
impact, lack of investigation into patients’ desire for family in SDM, lack of knowledge
of financial impact of treatments, and physician emotion related to giving up hope. Pa-
tients with head and neck cancer often have substantial symptom burden at the end of
life, but interestingly providers may overestimate the impact of these symptoms.90,91
Given the anatomic communication difficulties that arise in these patients, it is even
more imperative that we engage in a discussion of their preferences early in the treat-
ment course. As disease progresses beyond the possibility of curative treatment, palli-
ative and hospice care must eventually be discussed. Estimates have suggested that
at least 20% of patients would qualify for hospice referral at the time of diagnosis.92
Patients with head and neck cancer have a particularly challenging set of symptoms
that test the limits of the hospice benefit.93 Although hospice is an excellent care
plan that can improve quality of life and reduce costs,94,95 these are some of the
most challenging hospice patients. Patients at risk of catastrophic bleeding or sudden
airway collapse present the greatest challenge. Inpatient hospice is an excellent
resource for this demographic, but the precipitous nature of the condition can
make it hard to use these resources appropriately. The case that follows touches on
some of the principles discussed:
Mr G initially presented at 23 years of age (1985) with a small cell carcinoma of the
left maxilla while on active duty in the military. He was treated with conventional full-
course radiation therapy and remained disease free until 2013 when he began to
develop progressive dysplasia in the oropharynx. In January 2016, biopsy showed
invasive squamous cancer (human papillomavirus negative). At that time, the area
of involvement was circumferential in the oropharynx, with involvement of the base
of tongue and all 4 walls. He declined surgery, further radiation, and chemotherapy
at that time. In September 2016, he returned with stridor, at which time he initially
declined tracheostomy. However, when told there were no good alternatives, he indi-
cated he was not ready to die and tracheostomy and a percutaneous endoscopic
gastrostomy (PEG) tube were performed.
How could the authors have improved this patient’s care? He understood in January
that he had untreatable, incurable cancer and yet returned to the emergency depart-
ment 9 months later in distress. Introducing the topic of palliative surgery further
upstream in the discussion can help obviate emergency department admissions for
patients with no curative treatment available. When we know that patients are likely
to have airway compromise or terminal dysphagia, open and honest discussion of
the possibility of tracheostomy and PEG before they occur allows patients to consider
them in a nondistressed state. It also important to remember that patients will almost
always fluctuate in their level of acceptance of their illness. Although we tend to see
denial and acceptance as binary states, patients tend to fluctuate between them
and use each in various circumstances as a coping mechanism.96
Another major barrier to pursuing palliative treatment is intervention bias or the pro-
pensity to think that doing something is better than doing nothing. Intervention bias is a
complex phenomenon involving portions of self-interest, confirmation, and publication
biases.97 Physicians wrap up their moral identities in the curing of disease and triumph
over illness, and American physicians in particular are more apt to choose intervention
over observation in a broad variety of circumstances.98 This bias runs deep through
the heart of our existence as professionals and is not easily reconciled. The financial
698 Beers et al

incentives of the American health care system are deeply biased toward intervention;
although we all strive to provide just, responsible care, it is impossible to eradicate this
feature in the current health care environment. Increasing premiums and deductibles
attempt to increase cost-sharing incentives for patients but in fact can lead to poorer
compliance99,100: the model assumes that patients use health care services in the
same way they do traditional consumer goods. Even our much-vaunted evidence-
based medicine structure arises from a foundation of human researchers who spend
lifetimes invested in their work and whose very sense of self is bound up in success of
their work in a publication environment predisposed to report significant treatment
results. Studies with positive results of the intervention can be 2 to 3 times more likely
to be published,101 and positive-outcome studies were more favorably reviewed and
suggested for publication in the peer-review setting.102 Intervention bias is a hydra-
headed enemy that the treating clinician will confront in many arenas, and as we
look back to the core of medical ethics we must remember that the irreducible princi-
ple of nonmaleficence dictates that before all other things we “first do no harm.”13

Consequences of Treatment
There is a vast array of data published about head and neck cancer treatment compli-
cations and quality-of-life outcomes. Although dysphagia, xerostomia, dysphonia,
mucositis, fistula, and fatigue can all plague these patients,103 most of these symp-
toms have clinical algorithms for treatment. However, there is one silent symptom
that is often underreported unless specifically queried by the physician: depression.
Although patients generally feel comfortable talking about their physical symptoms,
depression and anxiety often carry stigma.104 In the context of SDM and improving
our communication with patients, being attentive to depression in this group can
substantially improve trust and influence treatment outcomes.
We know depression among the head and neck cancer population is a known
concern. Some studies have shown a risk as high as 20% to 40%, with depression
serving as a detriment to treatment adherence and functional outcome.105–107 There
are not enough data to definitively know if depression is linked to overall survival,
but the high incidence of pretreatment and posttreatment depression should make
clinicians watchful.108,109 The most frightening complication of unrecognized or un-
treated depression is suicide, which has been shown to be present at a substantially
higher incidence in this population. A general study of patients with cancer in Europe
revealed that patients with head and neck cancer were at highest risk of cancer sub-
types and were almost 5 times as likely to commit suicide as controls.110 A more
recent follow-up review of data from greater than 350,000 patients with head and
neck cancer showed an overall suicide risk of 3 times, with laryngeal and oropharyn-
geal at 5 times, and patients with hypopharyngeal cancer at a stunning 14 times in-
crease in risk.111 There are multiple different depression screening instruments,
many of which have been validated in the head and neck cancer population.112
Although far from perfect, even asking patients the single question of whether they
are depressed has a reasonable sensitivity and specificity in advanced illness.113 In
whatever fashion, the critical task of the clinician is to ask patients about depression
and aggressively pursue treatment if it is discovered.

If I Do Not Offer Treatment, Will They Just Find Someone Who Will?
One thing many academic surgeons fear is the complexities of the second opinion. This
role can come in many forms, from an elective office referral from a colleague to a patient
being helicoptered to your facility after being told “they will fix you there” by the outside
hospital emergency department. There is a small body of literature on the outcomes of
The Role of Patients 699

second opinions in cancer care. The number of patients who seek a second opinion after
cancer diagnosis can vary from 7% to 35%.114 Patients who were female, more
educated, or with more advanced disease at diagnosis were more likely to seek a second
opinion.115–117 Although many surgeons fear that if they do not operate someone else
will, variance in treatment plan is less common than we may fear. In patients with
head and neck cancer referred for a second opinion to a comprehensive center for
MDT evaluation, the treatment plan was modified only 10% of the time.118 Broader
studies of general surgical oncology patients confirmed a 12% to 16% rate of treatment
discrepancy and that, even when a second opinion was sought, 93% received surgery
from the first surgeon consulted.117,119 These data translate at the policy level: historical-
ly some states required mandatory surgical second opinions for elective Medicaid cases.
Review of the policy revealed the low discrepancy of opinion and minimal change in cost
to the system, leading to a program shift toward voluntary second opinions only.120

WHERE DO WE GO FROM HERE?


Improving Communication
The foundation of SDM is good communication. There is an epigram that best outlines
the difficulty with such a simple-sounding task: “The single biggest problem with
communication is the illusion that it has taken place.”121 Physicians, particularly sur-
geons, tend to think we are better communicators than either our colleagues or pa-
tients think.122,123 Although head and neck clinicians will spend decades on medical
education and advanced training to learn interventions, didactic sessions on commu-
nication skills are generally not thought to be of similar value. When talking about diffi-
cult topics, such as advanced cancer and possible end-of-life decision-making,
patients prefer that physicians bring up the topic and expect they will do so.124
When having difficult conversations, there are 2 critical skills that help these discus-
sions go more smoothly: intelligent asking and responding to emotion.
The first is the ask. A widely used teaching model for physician communication is
ask-tell- ask.125 The first ask is an open-ended question about patients’ understanding
of the issue and, if there is bad news, permission to talk about a serious topic. For
example, let us imagine you are a surgeon seeing a postoperative patient in clinic
whose disease has progressed on adjuvant therapy, as you note from the most recent
scans. A standard response to this is often something like the following: Unfortunately,
I have some bad news. The CT shows that your disease has progressed despite the
chemotherapy. This response is typically followed by a reassuring statement about
the other treatment options available and how quickly we can get patients to the rele-
vant specialist.126 In the ask-tell-ask model, the surgeon begins by asking patients a
question, such as the following: What brings you in today? or What have your other
doctors been telling you about your cancer since the last time we spoke? The
response to this question gives you critical information about patients’ level of under-
standing of their disease. In this scenario, imagine the patient responds to the question
of what brought he or she in today by saying the following: I don’t remember exactly, I
had the appointment on my calendar to have a checkup after surgery. This response
reveals that the patient is not likely prepared to hear the bad news about disease pro-
gression. Knowing this, the next ask is for permission: Unfortunately, I have some bad
news. Is it ok if we talk about what your most recent scans show? Asking for permis-
sion to talk about difficult topics serves 3 important purposes. First, it gives patients a
warning shot that the conversation is about to become more serious. This warning
helps patients reorient their expectations and prepare to discuss the news. Second,
asking for permission gives patients authority to choose how they receive the news.
700 Beers et al

They may wish to proceed alone or may wish to have another person present to sup-
port them and help talk about options. Third, and perhaps most importantly, it gives
them a measure of control in a situation that has suddenly become frightening and un-
controlled.127 After delivering the news, at the close of the discussion, there is a final
ask, which is to clarify understanding. Questions like the following can help guarantee
that patients understood the information correctly: Does that make sense? Just so I’m
sure I explained that well enough, could you tell me what you understand about what
we discussed?
The second major hazard in clinical communication is emotion. Dealing with bad
news brings up emotion in both patients and the physician.128 Physicians are trained
to deal with data and algorithms and procedures: emotion tends to feel disruptive and
unpredictable. All people process information in both an emotional channel and a
cognitive channel.129 These two channels relate to each other in complex ways, and
both are highly activated during the patient interview. When bad news about patients’
cancer is conveyed, one must expect emotion and be able to respond. When deliv-
ering bad news, it is best to keep the news to a few short sentences and then pause,
because emotional reactions happen almost instantaneously and irrespective of
cognitive input.130 The next reaction should be from patients; the physician tendency
to fill uncomfortable-seeming silence with more clinical information should be avoided,
as this activates the penchant of generating false optimism.131–133 Another thing to
remember is that highly emotional data can override the cognitive channel. When pa-
tients hear emotionally negative news, the negative affective experience can impair
working memory.134 This impairment leads to a decoupling of cognition after
emotional stimulus and poorer recall of the very data we try to use to console our pa-
tients and ourselves. VitalTalk, an organization devoted to improving physician-patient
communication, has created the acronym NURSE to give clinicians tools to help
respond to emotion (Table 1).135
And lastly when dealing with emotion, it is important for clinicians to pay attention to
body language. Maintaining eye contact and an open body posture (avoiding crossing

Table 1
Statements to help deal with and support emotion

NURSE Statements for Articulating Empathy


Example Notes
Naming It sounds like you are frustrated. In general, turn down the intensity a
notch when you name the
emotion.
Understanding This helps me understand what you Think of this as another kind of
are thinking. acknowledgment but stop short
of suggesting you understand
everything (you do not).
Respecting I can see you have really been trying Remember that praise also fits in
to follow our instructions. here (eg, I think you have done a
great job with this.).
Supporting I will do my best to make sure you Making this kind of commitment is a
have what you need. powerful statement.
Exploring Could you say more about what you Asking a focused question prevents
mean when you say that. this from seeming too obvious.

From VitalTalk. NURSE statements for articulating empathy. Available at: http://www.vitaltalk.org/
sites/default/files/quick-guides/NURSEforVitaltalkV1.0.pdf. Accessed March 28, 2017; with permission.
The Role of Patients 701

arms or placing computer screens between you and patients) are shown to improve
patient ratings of providers and foster empathy.136,137
The good news when considering all of the high-stakes components of patient
communication and emotion is that training programs can help providers learn to
manage this more expertly. Communication training interventions have been shown
to improve confidence, increase response to emotion, increase patient engagement
and trust,138–141 and in some cases even improve Hospital Consumer Assessment of
Healthcare Providers and Systems scores for doctor communication.142 Fortunately,
access to training programs is expanding as hospital systems and national organiza-
tions recognize the foundational nature of communication in our role as physicians.

SUMMARY

The evolution of SDM has been a gradual one, with a recent acceleration fueled by
massive cultural changes and an exponentially expanding volume of scientific knowl-
edge. Patients with head and neck cancer face a unique and steep set of challenges
spanning physical, social, emotional, and cultural dimensions. As clinicians, we are obli-
gated to provide the best care possible. Newer tools, such as DAs and multidisciplinary
conferences, are first steps toward improving the breadth of our care; but there are still far
more questions than answers about how to implement these best for patients with head
and neck cancer. Increasing access to palliative care services and using them earlier in
patients’ trajectory will help improve symptom management, decrease cost, and in-
crease the odds that patients’ time is spent the way they desire. As providers, we will
also have increasing access to continuing education opportunities to improve our
communication skills, which will be critical to hone as more of our performance evalua-
tion is linked to patient satisfaction. In total, the legal, ethical, and moral domains of SDM
represent our most current understanding of “the pinnacle of patient-centered care.”143

REFERENCES

1. Argiris A, Karamouzis MV, Raben D, et al. Head and neck cancer. Lancet 2008;
371(9625):1695–709.
2. Pulte D, Brenner H. Changes in survival in head and neck cancers in the late
20th and early 21st century: a period analysis. Oncologist 2010;15(9):994–1001.
3. Levit LA, IoM, Ganz PA, et al. Delivering high-quality cancer care: charting a
new course for a system in crisis. Washington, DC: National Academies Press;
2013.
4. American Medical Association. Code of ethics of the American Medical Associa-
tion, adopted 1847. Asa McFarland, Concord NH, 1850. Available at: https://
collections.nlm.nih.gov/catalog/nlm:nlmuid-63310420R-bk. Accessed September
16, 2016.
5. Murray B. Informed consent: what must a physician disclose to a patient? Virtual
Mentor 2012;14(7):563–6.
6. Canterbury v. Spence (464 F.2d 772) 1972.
7. Balint M. The doctor’s therapeutic function. Lancet 1965;1(7397):1177–80.
8. Brock DW. The ideal of shared decision making between physicians and pa-
tients. Kennedy Inst Ethics J 1991;1(1):28–47.
9. Braddock CH 3rd, Edwards KA, Hasenberg NM, et al. Informed decision mak-
ing in outpatient practice: time to get back to basics. JAMA 1999;282(24):
2313–20.
10. Metzl JM, Riba M. Understanding the symbolic value of medications: a brief re-
view. Prim Psychiatry 2003;10(7):45–8.
702 Beers et al

11. Lentacker A. The symbolic economy of drugs. Soc Stud Sci 2016;46(1):140–56.
12. Tomes N. Patient empowerment and the dilemmas of late-modern medicaliza-
tion. Lancet 2007;369(9562):698–700.
13. Beauchamp T, Childress J. Principles of biomedical ethics. Oxford University
Press; 2012.
14. Joosten EAG, DeFuentes-Merillas L, de Weert GH, et al. Systematic review of
the effects of shared decision-making on patient satisfaction, treatment adher-
ence and health status. Psychother Psychosom 2008;77(4):219–26.
15. Kehl KL, Landrum M, Arora NK, et al. Association of actual and preferred deci-
sion roles with patient-reported quality of care: shared decision making in can-
cer care. JAMA Oncol 2015;1(1):50–8.
16. Kane HL, Halpern MT, Squiers LB, et al. Implementing and evaluating shared de-
cision making in oncology practice. CA Cancer J Clinicians 2014;64(6):377–88.
17. Stiggelbout A, Pieterse A, De Haes J. Shared decision making: concepts, evi-
dence, and practice. Patient Educ Couns 2015;98(10):1172–9.
18. Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clin-
ical practice. J Gen Intern Med 2012;27(10):1361–7.
19. Surveillance Epidemiology and End Results (SEER) Program. SEER*Stat Data-
base: incidence - SEER 18 Regs research data 1 Hurricane Katrina impacted
Louisiana cases. 2016. Available at: http://seer.cancer.gov/canques/survival.
html. Accessed September 2016.
20. Lin CC, Fedewa SA, Prickett KK, et al. Comparative effectiveness of surgical
and nonsurgical therapy for advanced laryngeal cancer. Cancer 2016;
122(18):2845–56.
21. Levinson W, Kao A, Kuby A, et al. Not all patients want to participate in decision
making. A national study of public preferences. J Gen Intern Med 2005;20(6):
531–5.
22. Mohide EA, Archibald SD, Tew M, et al. Postlaryngectomy quality-of-life dimen-
sions identified by patients and health care professionals. Am J Surg 1992;
164(6):619–22.
23. Jalukar V, Funk GF, Christensen AJ, et al. Health states following head and neck
cancer treatment: patient, health-care professional, and public perspectives.
Head Neck 1998;20(7):600–8.
24. Grossman SA, Sheidler VR, Swedeen K, et al. Correlation of patient and care-
giver ratings of cancer pain. J Pain Symptom Manage 1991;6(2):53–7.
25. Otto RA, Lawrence V, Dobie RA, et al. Impact of a laryngectomy on quality of life:
perspective of the patient versus that of the health care provider. Ann Otol Rhi-
nol Laryngol 1997;106(8):693–9.
26. List MA, Rutherford JL, Stracks J, et al. Prioritizing treatment outcomes: head
and neck cancer patients versus nonpatients. Head Neck 2004;26(2):163–70.
27. Friedland PL, Bozic B, Dewar J, et al. Impact of multidisciplinary team manage-
ment in head and neck cancer patients. Br J Cancer 2011;104(8):1246–8.
28. Pillay B, Wootten AC, Crowe H, et al. The impact of multidisciplinary team meet-
ings on patient assessment, management and outcomes in oncology settings: a
systematic review of the literature. Cancer Treat Rev 2016;42:56–72.
29. Hong NJ, Wright FC, Gagliardi AR, et al. Examining the potential relationship be-
tween multidisciplinary cancer care and patient survival: an international litera-
ture review. J Surg Oncol 2010;102(2):125–34.
30. Hamilton D, Heaven B, Thomson R, et al. Multidisciplinary team decision-
making in cancer and the absent patient: a qualitative study. BMJ Open
2016;6(7):e012559.
The Role of Patients 703

31. Thornton S. Time to review utility of multidisciplinary team meetings. BMJ 2015;
351:h5295.
32. Hahlweg P, Hoffmann J, Härter M, et al. In absentia: an exploratory study of how
patients are considered in multidisciplinary cancer team meetings. PLoS One
2015;10(10):e0139921.
33. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision-making in
multi-disciplinary cancer teams. Ann Oncol 2006;17(3):457–60.
34. Chinn SB, Myers JN. Oral cavity carcinoma: current management, contro-
versies, and future directions. J Clin Oncol 2015;33(29):3269–76.
35. Kunneman M, Pieterse AH, Stiggelbout AM, et al. Which benefits and harms of
preoperative radiotherapy should be addressed? A Delphi consensus study
among rectal cancer patients and radiation oncologists. Radiother Oncol
2015;114(2):212–7.
36. Dronkers EA, Mes SW, Wieringa MH, et al. Noncompliance to guidelines in head
and neck cancer treatment; associated factors for both patient and physician.
BMC Cancer 2015;15:515.
37. Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treat-
ment or screening decisions. Cochrane Database Syst Rev 2014;(1):CD001431.
38. Herrmann A, Mansfield E, Hall AE, et al. Willfully out of sight? A literature review
on the effectiveness of cancer-related decision aids and implementation strate-
gies. BMC Med Inform Decis Mak 2016;16:36.
39. Sawka AM, Straus S, Rodin G, et al. Thyroid cancer patient perceptions of radio-
active iodine treatment choice: follow-up from a decision-aid randomized trial.
Cancer 2015;121(20):3717–26.
40. Holmes-Rovner M. International Patient Decision Aid Standards (IPDAS):
beyond decision aids to usual design of patient education materials. Health
Expect 2007;10(2):103–7.
41. Elwyn G, O’Connor A, Stacey D, et al, The International Patient Decision Aids
Standards (IPDAS) Collaboration. Developing a quality criteria framework for
patient decision aids: online international Delphi consensus process. Br Med
J 2006;333:417.
42. Clayton JM, Butow PN, Tattersall MH, et al. Randomized controlled trial of a
prompt list to help advanced cancer patients and their caregivers to ask ques-
tions about prognosis and end-of-life care. J Clin Oncol 2007;25(6):715–23.
43. Available at: http://www.psych.usyd.edu.au/cemped/com_question_prompt.shtml.
44. Hoffman AS, Llewellyn-Thomas HA, Tosteson AN, et al. Launching a virtual de-
cision lab: development and field-testing of a web-based patient decision sup-
port research platform. BMC Med Inform Decis Mak 2014;14:112.
45. Green MJ, Peterson SK, Baker MW, et al. Effect of a computer-based decision
aid on knowledge, perceptions, and intentions about genetic testing for breast
cancer susceptibility: a randomized controlled trial. JAMA 2004;292(4):442–52.
46. Green MJ, Peterson SK, Baker MW, et al. Use of an educational computer pro-
gram before genetic counseling for breast cancer susceptibility: effects on
duration and content of counseling sessions. Genet Med 2005;7(4):221–9.
47. Chewning B, Bylund CL, Shah B, et al. Patient preferences for shared decisions:
a systematic review. Patient Educ Couns 2012;86(1):9–18.
48. Rood JA, van Zuuren FJ, Stam F, et al. Perceived need for information among
patients with a haematological malignancy: associations with information satis-
faction and treatment decision-making preferences. Hematol Oncol 2015;33(2):
85–98.
704 Beers et al

49. van den Brink-Muinen A, van Dulmen SM, de Haes HC, et al. Has patients’
involvement in the decision-making process changed over time? Health Expect
2006;9(4):333–42.
50. Levinson W, Kao A, Kuby A, et al. Not all patients want to participate in decision
making. J Gen Intern Med 2005;20:531–5.
51. Flynn KE, Smith MA, Vanness D. A typology of preferences for participation in
healthcare decision making. Soc Sci Med 2006;63(5):1158–69.
52. Chawla N, Arora NK. Why do some patients prefer to leave decisions up to the
doctor: lack of self-efficacy or a matter of trust? J Cancer Surviv 2013;7(4):
592–601.
53. Brown R, Butow P, Wilson-Genderson M, et al. Meeting the decision-making
preferences of patients with breast cancer in oncology consultations: impact
on decision-related outcomes. J Clin Oncol 2012;30:857–62.
54. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional
preferences in women with breast cancer. JAMA 1997;277(18):1485–92.
55. Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision mak-
ing among patients with cancer: a pooled analysis of studies using the Control
Preferences Scale. Am J Manag Care 2010;16(9):688–96.
56. Hitz F, Ribi K, Li Q, et al. Predictors of satisfaction with treatment decision,
decision-making preferences, and main treatment goals in patients with
advanced cancer. Support Care Cancer 2013;21(11):3085–93.
57. Moth E, McLachlan SA, Veillard AS, et al. Patients’ preferred and perceived
roles in making decisions about adjuvant chemotherapy for non-small-cell
lung cancer. Lung Cancer 2016;95:8–14.
58. Noguera A, Yennurajalingam S, Torres-Vigil I, et al. Decisional control prefer-
ences, disclosure of information preferences, and satisfaction among Hispanic
patients with advanced cancer. J Pain Symptom Manage 2014;47(5):896–905.
59. Colley A, Halpern J, Paul S, et al. Factors associated with oncology patients’
involvement in shared decision-making during chemotherapy. Psychooncology
2016. http://dx.doi.org/10.1002/pon.4284.
60. Brom L, Hopmans W, Pasman HR, et al. Congruence between patients’
preferred and perceived participation in medical decision-making: a review of
the literature. BMC Med Inform Decis Mak 2014;14:25.
61. Sim JA, Shin JS, Park SM, et al. Association between information provision and
decisional conflict in cancer patients. Ann Oncol 2015;26(9):1974–80.
62. Cooper Z, Hevelone N, Sarhan M, et al. Identifying patient characteristics asso-
ciated with deficits in surgical decision making. J Patient Saf 2016. [Epub ahead
of print].
63. Kim SP, Knight SJ, Tomori C, et al. Health literacy and shared decision making
for prostate cancer patients with low socioeconomic status. Cancer Invest 2001;
19(7):684–91.
64. Polite BN, Cipriano-Steffens T, Hlubocky F, et al. An evaluation of psychosocial
and religious belief differences in a diverse racial and socioeconomic urban
cancer population. J Racial Ethn Health Disparities 2017;4(2):140–8.
65. Palmer NRA, Kent EE, Forsythe LP, et al. Racial and ethnic disparities in patient-
provider communication, quality-of-care ratings, and patient activation among
long-term cancer survivors. J Clin Oncol 2014;32:4087–94.
66. Tariman JD, Berry DL, Cochrane B, et al. Preferred and actual participation roles
during health care decision making in persons with cancer: a systematic review.
Ann Oncol 2010;21(6):1145–51.
The Role of Patients 705

67. Kehl KL, Landrum MB, Arora NK, et al. Association of actual and preferred de-
cision roles with patient-reported quality of care: shared decision making in can-
cer care. JAMA Oncol 2015;1(1):50–8.
68. Rood JA, Van Zuuren FJ, Stam F, et al. Cognitive coping style (monitoring and
blunting) and the need for information, information satisfaction and shared de-
cision making among patients with haematological malignancies. Psychooncol-
ogy 2015;24(5):564–71.
69. Cherlin E, Fried T, Prigerson HG, et al. Communication between physicians and
family caregivers about care at the end of life: when do discussions occur and
what is said? J Palliat Med 2005;8(6):1176–85.
70. Keating NL, Landrum MB, Rogers SO Jr, et al. Physician factors associated with
discussions about end-of-life care. Cancer 2010;116(4):998–1006.
71. Buss MK, Lessen DS, Sullivan AM, et al. Hematology/oncology fellows’ training
in palliative care: results of a national survey. Cancer 2011;117(18):4304–11.
72. Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more:
communication in palliative care. Palliat Med 2002;16(4):297–303.
73. Weissman DE. Decision making at a time of crisis near the end of life. JAMA
2004;292(14):1738–43.
74. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ progno-
ses in terminally ill patients: prospective cohort study. BMJ 2000;320(7233):
469–72.
75. Wolf JH, Wolf KS. The Lake Wobegon effect: are all cancer patients above
average? Milbank Q 2013;91(4):690–728.
76. Chen CH, Kuo SC, Tang ST. Current status of accurate prognostic awareness in
advanced/terminally ill cancer patients: systematic review and meta-regression
analysis. Palliat Med 2017;31(5):406–18.
77. Innes S, Payne S. Advanced cancer patients’ prognostic information prefer-
ences: a review. Palliat Med 2009;23(1):29–39.
78. Shin DW, Cho J, Roter DL, et al. Attitudes toward family involvement in cancer
treatment decision making: the perspectives of patients, family caregivers, and
their oncologists. Psychooncology 2016. http://dx.doi.org/10.1002/pon.4226.
79. Goldstein NE, Back AL, Morrison RS. Titrating guidance: a model to guide phy-
sicians in assisting patients and family members who are facing complex deci-
sions. Arch Intern Med 2008;168(16):1733–9.
80. Rodriguez KL, Barnato AE, Arnold RM. Perceptions and utilization of palliative
care services in acute care hospitals. J Palliat Med 2007;10(1):99–110.
81. Gomes B, Calanzani N, Curiale V, et al. Effectiveness and cost-effectiveness of
home palliative care services for adults with advanced illness and their care-
givers. Cochrane Database Syst Rev 2013;(6):CD007760.
82. Davis MP, Temel JS, Balboni T, et al. A review of the trials which examine early
integration of outpatient and home palliative care for patients with serious ill-
nesses. Ann Palliat Med 2015;4(3):99–121.
83. Howie L, Peppercorn J. Early palliative care in cancer treatment: rationale, evi-
dence and clinical implications. Ther Adv Med Oncol 2013;5(6):318–23.
84. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provi-
sional clinical opinion: the integration of palliative care into standard oncology
care. J Clin Oncol 2012;30(8):880–7.
85. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve
outcomes for cancer patients and their families? Cancer J 2010;16(5):423–35.
706 Beers et al

86. May P, Normand C, Morrison RS. Economic impact of hospital inpatient pallia-
tive care consultation: review of current evidence and directions for future
research. Palliat Med 2014;17(9):1054–63.
87. Tangeman JC, Rudra CB, Kerr CW, et al. A hospice-hospital partnership:
reducing hospitalization costs and 30-day readmissions among seriously ill
adults. J Palliat Med 2014;17(9):1005–10.
88. Temel J, Greer J, Muzikansky A, et al. Early palliative care for patients with met-
astatic non-small-cell lung cancer. N Engl J Med 2010;363:733–42.
89. Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent
palliative oncology care: patient outcomes in the ENABLE III randomized
controlled trial. J Clin Oncol 2015;33(13):1438–45.
90. Liao K, Blumenthal-Barby J, Sikora AG. Factors influencing head and neck sur-
gical oncologists’ transition from curative to palliative treatment goals. Otolar-
yngol Head Neck Surg 2017;156(1):46–51.
91. Parhar S, Rogers SN, Lowe D. Perspectives of the multidisciplinary team on the
quality of life of patients with cancer of the head and neck at 2 years. Br J Oral
Maxillofac Surg 2015;53(9):858–63.
92. Timon C, Reilly K. Head and neck mucosal squamous cell carcinoma: results of
palliative management. J Laryngol Otol 2006;120:389–92.
93. Lin YL, Lin IC, Liou JC. Symptom patterns of patients with head and neck cancer
in a palliative care unit. J Palliat Med 2011;14(5):556–9.
94. Enomoto LM, Schaefer EW, Goldenberg D, et al. The cost of hospice services in
terminally ill patients with head and neck cancer. JAMA Otolaryngol Head Neck
Surg 2015;141(12):1066–74.
95. Shuman AG, Yang Y, Taylor JM, et al. End-of-life care among head and neck
cancer patients. Otolaryngol Head Neck Surg 2011;144(5):733–9.
96. Copp G, Field D. Open awareness and dying: the use of denial and acceptance
as coping strategies by hospice patients. NT Res 2002;7:188–227.
97. Foy AJ, Filippone EJ. The case for intervention bias in the practice of medicine.
Yale J Biol Med 2013;86(2):271–80.
98. Payer L. Medicine & culture: varieties of treatment in the United States, England,
West Germany, and France. New York: H. Holt; 1988.
99. Jin J, Sklar GE, Min Sen Oh V. Factors affecting therapeutic compliance: a re-
view from the patient’s perspective. Ther Clin Risk Mana 2008;4(1):269–86.
100. Eaddy MT, Cook CL, O’Day K, et al. How patient cost-sharing trends affect
adherence and outcomes: a literature review. P T 2012;37(1):45–55.
101. Easterbrook PJ, Gopalan R, Berlin JA, et al. Publication bias in clinical research.
Lancet 1991;337(8746):867–72.
102. Emerson GB, Warme WJ, Wolf FM, et al. Testing for the presence of positive-
outcome bias in peer review: a randomized controlled trial. Arch Intern Med
2010;170(21):1934–9.
103. Sciubba JJ. End-of-life care in the head and neck cancer patient. Oral Dis 2016;
22(8):740–4.
104. Peluso Ede T, Blay SL. Public stigma in relation to individuals with depression.
J Affect Disord 2009;115(1–2):201–6.
105. Barber B, Dergousoff J, Nesbitt M, et al. Depression as a predictor of postoper-
ative functional performance status (PFPS) and treatment adherence in head
and neck cancer patients: a prospective study. J Otolaryngol Head Neck
Surg 2015;44:38.
The Role of Patients 707

106. Lin BM, Starmer HM, Gourin CG. The relationship between depressive symp-
toms, quality of life, and swallowing function in head and neck cancer patients
1 year after definitive therapy. Laryngoscope 2012;122(7):1518–25.
107. Laurence B, Mould-Millman NK, Nero KE Jr, et al. Depression and hospital
admission in older patients with head and neck cancer: analysis of a national
healthcare database. Gerodontology 2016;22(8):740–4.
108. Barber B, Dergousoff J, Slater L, et al. Depression and survival in patients with
head and neck cancer: a systematic review. JAMA Otolaryngol Head Neck Surg
2016;142(3):284–8.
109. Kim SA, Roh JL, Lee SA, et al. Pretreatment depression as a prognostic indica-
tor of survival and nutritional status in patients with head and neck cancer. Can-
cer 2016;122(1):131–40.
110. Oberaigner W, Sperner-Unterweger B, Fiegl M, et al. Increased suicide risk in
cancer patients in Tyrol/Austria. Gen Hosp Psychiatry 2014;36(5):483–7.
111. Kam D, Salib A, Gorgy G, et al. Incidence of suicide in patients with head and
neck cancer. JAMA Otolaryngol Head Neck Surg 2015;141(12):1075–81.
112. Singer S, Danker H, Dietz A, et al. Screening for mental disorders in laryngeal
cancer patients: a comparison of 6 methods. Psychooncology 2008;17(3):
280–6.
113. Lloyd-Williams M, Spiller J. Which depression screening tools should be used in
palliative care? Palliat Med 2003;17(1):40–3.
114. Ruetters D, Keinki C, Schroth S, et al. Is there evidence for a better health care
for cancer patients after a second opinion? A systematic review. J Cancer Res
Clin Oncol 2016;142(7):1521–8.
115. Chiou SJ, Wang SI, Liu CH, et al. Outpatient-shopping behavior and survival rates
in newly diagnosed cancer patients. Am J Manag Care 2012;18(9):488–96.
116. Tam KF, Cheng DK, Ng TY, et al. The behaviors of seeking a second opinion
from other health-care professionals and the utilization of complementary and
alternative medicine in gynecologic cancer patients. Support Care Cancer
2005;13(9):679–84.
117. Mellink WA, Henzen-Logmans SC, Bongaerts AH, et al. Discrepancy between
second and first opinion in surgical oncological patients. Eur J Surg Oncol
2006;32(1):108–12.
118. Bergamini C, Locati L, Bossi P, et al. Does a multidisciplinary team approach in
a tertiary referral centre impact on the initial management of head and neck can-
cer? Oral Oncol 2016;54:54–7.
119. Morrow M, Jagsi R, Alderman AK, et al. Surgeon recommendations and receipt
of mastectomy for treatment of breast cancer. JAMA 2009;302:1551–6.
120. Barton PL, Newhouse JP, Rand Corporation. Second surgical opinion programs:
a review of the literature. Santa Monica (CA): Rand; 1989.
121. Whyte WH. 1950 September, Fortune, “is anybody listening?” New York: Time,
Inc; p. 77, Quote Page 174. *often misattributed to George Bernard Shaw.
122. Aslakson RA, Wyskiel R, Shaeffer D, et al. Surgical intensive care unit clinician
estimates of the adequacy of communication regarding patient prognosis. Crit
Care 2010;14:R218.
123. Tongue JR, Epps HR, Forese LL. Communication skills for patient-centered care:
research-based, easily learned techniques for medical interviews that benefit or-
thopaedic surgeons and their patients. J Bone Joint Surg Am 2005;87:652–8.
124. Almack K, Cox K, Moghaddam N, et al. After you: conversations between pa-
tients and healthcare professionals in planning for end of life care. BMC Palliat
Care 2012;11:15.
708 Beers et al

125. Available at: http://www.vitaltalk.org/clinicians/establish-rapport?vtitle5ask-tell-


ask. Accesed September 21, 2016.
126. The AM, Hak T, Gerard Koëter G, et al. Collusion in doctor-patient communication
about imminent death: an ethnographic study. BMJ 2000;321(7273):1376–81.
127. Friedrichsen M, Milberg A. Concerns about losing control when breaking bad
news to terminally ill patients with cancer: physicians’ perspective. J Palliat
Med 2006;9(3):673–82.
128. Bousquet G, Orri M, Winterman S, et al. Breaking bad news in oncology: a meta-
synthesis. J Clin Oncol 2015;33(22):2437–43.
129. Geltner P. Emotional communication: countertransference analysis and the use
of feeling in psychoanalytic technique. Routledge; 2013.
130. Whalen PJ, Rauch SL, Etcoff NL, et al. Masked presentations of emotional facial
expressions modulate amygdala activity without explicit knowledge. J Neurosci
1998;18(1):411–8.
131. Ruddick W. Hope and deception. Bioethics 1999;13(3–4):343–57.
132. Winner M, Wilson A, Ronnekleiv-Kelly S, et al. A singular hope: how the discus-
sion around cancer surgery sometimes fails. Ann Surg Oncol 2016;24(1):31–7.
133. Portnoy DB, Paul K, Han J, et al. Physicians’ attitudes about communicating and
managing scientific uncertainty differ by perceived ambiguity aversion of their
patients. Health Expect 2013;16(4):362–72.
134. Perlstein WM, Elbert T, Stenger VA. Dissociation in human prefrontal cortex of
affective influences on working memory-related activity. Proc Natl Acad Sci
U S A 2002;99(3):1736–41.
135. Available at: http://www.vitaltalk.org/sites/default/files/quick-guides/NURSEfor
VitaltalkV1.0.pdf.
136. Hillen MA, de Haes HC, van Tienhoven G, et al. Oncologists’ non-verbal
behavior and analog patients’ recall of information. Acta Oncol 2016;55(6):
671–9.
137. Marschner L, Pannasch S, Schulz J, et al. Social communication with virtual
agents: the effects of body and gaze direction on attention and emotional re-
sponding in human observers. Int J Psychophysiol 2015;97(2):85–92.
138. Epstein RM, Duberstein PR, Fenton JJ, et al. Effect of a patient-centered
communication intervention on oncologist-patient communication, quality of
life, and health care utilization in advanced cancer: the VOICE randomized clin-
ical trial. JAMA Oncol 2017;3(1):92–100.
139. Dwamena F, Holmes-Rovner M, Gaulden CM, et al. Interventions for providers to
promote a patient-centred approach in clinical consultations. Cochrane Data-
base Syst Rev 2012;(12):CD003267.
140. Arnold RM, Back AL, Barnato AE, et al. The Critical Care Communication proj-
ect: improving fellows’ communication skills. J Crit Care 2015;30(2):250–4.
141. Tulsky JA, Arnold RM, Alexander SC, et al. Enhancing communication between
oncologists and patients with a computer-based training program: a random-
ized trial. Ann Intern Med 2011;155(9):593–601.
142. Raper SE, Gupta M, Okusanya O. Improving communication skills: a course for
academic medical center surgery residents and faculty. J Surg Educ 2015;
72(6):e202–11.
143. Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-
centered care. N Engl J Med 2012;366(9):780–1.

You might also like