Current State of the Art and Science of Patient-Clinician Communication in Progressive Disease: Patients' Need to Know and Need to Feel Known
- Corresponding author: L.M. van Vliet, King's College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Rd, London SE5 9PJ, United Kingdom; e-mail: liesbeth.van_vliet@kcl.ac.uk.
+ Author Affiliations
Effective communication rests at the core of
medicine, especially when patients are confronted with progressive
disease and
death. Communication can mitigate the distress of
receiving bad news and influence patients' psychological functioning and
adaptation to a new situation.1–3
Whereas the benefits of good communication might seem clear, the costs
of its failure are perhaps even clearer. Especially
in progressive disease (which we define as entailing
palliative and end-of-life care in worsening serious illness) with
guarded
prognoses and significant psychosocial stressors, the
stakes are high in most if not every clinical encounter with patients
and families. Communication deficits cause unnecessary
distress not only for patients but also their loved ones.4 It is not surprising that most formal complaints in health care are believed to be related to communication.5,6 Herein, we therefore tackle the central question that remains: what is good, effective communication in progressive disease
and how can it be taught, evaluated, and implemented to improve patient outcomes?
In medical consultations, patients experience a double-need: to know and understand and to feel known and understood.7–9
These simultaneously present needs can be roughly seen as a need for
information and for empathy. The need to know can be
satisfied by explanations of test results, treatment
options, or prognosis. The need to feel known can be satisfied by both
verbal (eg, reassurance) and nonverbal (eg, eye
contact) empathic behavior.
Data speak to the importance of empathy (or synonyms such as caring10 or compassion11) on patient outcomes. Receiving empathic communication is of the utmost importance for patients confronted with a (potentially)
life-limiting diagnosis.3,12–15 Even empathic remarks of 30 to 40 seconds (eg, expressing reassurance about nonabandonment) can positively influence patient
evaluations of consultations wherein bad news was delivered.16,17
In a series of articles, Back et al have, after delineating the importance of empathy for patients,18–20 recently taken this one step further by describing ways to make the connection between the patient's emotional and rational
mind,21
uniting the dual needs to know and feel known. According to them, a
preoccupation with empathic responses can decrease attention
for cognitive needs, thereby hindering a sometimes
necessary transition from empathy to action. The opposite situation
(sole
information provision that overlooks responding to
emotion) also occurs,22 leading to suboptimal outcomes, such as impaired recall.23,24 This underlines the importance—despite its difficulty21—of linking and responding to patients' cognitive and emotional needs simultaneously.
To achieve this, we propose that
communication skills should be taught within a framework that entails
approaches for both
cognitive and emotional data, which patients and
families present clinicians with daily. Two models fit this framework
well
and, when integrated, have the potential to meet
patients' double need. SPIKES25
proposes six steps in delivering any bad news with empathy: setting up
the encounter; assessing patients' perceptions; querying
informational receipt style/obtaining invitation to
share the news; delivering the news (knowledge); exploring emotions with
empathy; strategizing/summarizing next steps.25 Although the E
is for empathy, embedding an additional and empathy-specific model,
NURSE (name the emotion, express statements of understanding,
respect, and support; and explore emotion)26–28 might help to integrate empathy in information provision.
Although the two models are not new, by combining them, clinicians can maximally address, simultaneously, the cognitive and
emotional needs of patients.29 If physicians solely use SPIKES in challenging consultations, concrete steps and examples on navigating empathy are often
missing, despite it being perceived as the most challenging step.25
If solely NURSE is used, the focus could be too much on empathy,
eliciting fewer positive responses than a combined
empathy/information-provision
focus.30 This integrated framework can help clinicians switch from empathy to summarizing and discussing future strategies, as Back
et al21 advise. Table 1
links the theoretical model of patients' need to know and need to feel
known to concrete examples of a combined SPIKES/NURSE
model, which can help clinicians navigate challenging
consultations. In an increasingly complex medical world, we believe
this model can be used in challenging situations that
encompass critically important discussions such as illness recurrence
and re-evaluating goals of care among others. It can
serve as a useful addition to current communication trainings, which
seem varied,33,34 and sometimes seem to teach information-provision and empathy as distinct building blocks (eg, Oncotalk via www.oncotalk.info/). Lastly, the use of communication mnemonics fits into the emphasis on mnemonics in medical teaching and practice and might
ease its recall.
Table 1.
Patients' Need to Know and to Feel Known: An integrated SPIKES Model of Breaking Bad News* and NURSE† Model of Empathy Expression
When proposing this framework for teaching
medical communication, it is important to note the recent challenges to
the notion
that training communication skills and frameworks
improve patients' outcomes. Despite literature that the use of
communication
skills increases after learning them,35–37 a recent Cochrane review concluded that there is little evidence that communication trainings in oncology improve patient
outcomes.38
A recent randomized controlled trial (RCT) found that teaching
communication skills (including the SPIKES model and a focus
on empathic responses) did not increase patients'
evaluations of quality of communication or quality of end-of-life care,39 although a similar study in oncology suggested positive effects on patient depression amid other nonsignificant outcomes.40 Other studies have found that, among patients receiving palliative chemotherapy, those who were more aware of the incurability
of their disease reported lower scores on physician quality of communication41 and lower overall quality of life and psychosocial functioning.42
Instead of taking these overall results as
indicative that communication trainings and challenging discussions
might need
to be avoided, a more plausible conclusion seems that
teaching clinicians communication skills leads to more honest
discussions,
which will inevitably evoke emotional distress. It
would then be hasty to eliminate communication trainings, given that
patients
expect oncologists to be honest with them.14,43,44
The crux seems to be striking a balance between communicating the
reality of the situation to patients with progressive illness,
all the while maximizing empathic responses when these
emotions come to the fore. This is where empathy alongside information
provision becomes critical, including the need to
teach and practice both sides of the communication coin.
At the same time, building the evidence for
the effect of communication elements and trainings by conducting
high-quality
studies—especially RCTs—in progressive disease is
needed but presents challenges as well. Such studies are almost always
complex
interventions with inherent challenges including
threats to standardization and contamination and requiring large sample
sizes
to account for clustering at the clinician and
institution levels. Other difficulties include a lack of research
funding,45 difficulties obtaining ethical approval, gate-keeping by clinicians for patient recruitment, high anticipated patient dropout,
choosing the right end points, and a reliance on proxy reports.46
Although acknowledging these and other
limitations, we propose key (albeit nonexhaustive) improvements in the
composition
and evaluation of communication trainings and studies
(additional recommendations on this end-of-life research arena can be
found elsewhere46).
First, for trainings to have a true impact, it might be necessary that
patients and family caregivers are involved in their
creation and delivery. There would be feasibility and
ethical issues to consider when applying this approach (eg, careful
selection and preparation of patients/families would
be essential), but successful examples have been described in the
literature.47 The aforementioned RCT showing some positive effects on patient outcomes indeed used the patient perspective literature to
build their communication training.40 Moreover, early patient involvement is increasingly a focal point of research funding bodies (eg, the Patient-Centered Outcomes
Research Institute48 in the United States and the National Institute for Health Research49 or the Medical Research Council50 in the United Kingdom) and might ease obtaining ethical approval.46
It might also increase incorporation of the true patient perspective in
trainings, increase clinicians' involvement (opposed
to working with simulated patients) and improve
patient outcomes. In the end, communication is as effective as the
influence
it has on patients' perceptions.
This makes patient-reported outcomes among the important outcomes to study; however, the trial by Curtis et al39
suggests that these outcomes are complicated. Coming to terms with an
incurable diagnosis inevitably makes people sad, whether
or not the information has been provided in an
empathic and comprehensive manner. Outcomes might, however, be worse
when patients
are aware of their situation without having received
empathic communication or the chance to discuss their situation with
their medical team. There is evidence that patients
accepting a terminal prognosis feel less depressed, anxious, or hopeless
than nonaccepting patients.51 The recent evidence base demonstrating the beneficial effects of palliative care interventions52–55 and end-of-life discussions56,57 also indirectly supports this notion.
In addition, outcome measures would ideally
be collected at several time points, to determine direct and indirect
effect of
communication trainings. Because more downstream
outcomes (eg, quality of life) are influenced by many other factors than
communication, longitudinal studies could examine the
effect of communication within the context of other
(confounding/mediating/moderating)
variables. The idea of pathways in which communication
influences subsequent variables and outcomes has been proposed58,59
and also takes into account the reality of context when building the
evidence base of communication. Notorious challenges
for such longitudinal model-driven studies are the
need for a large sample size and an expert research team to deliver and
analyze this complex intervention. However, recent
studies (eg, the studies by Prigerson et al57 and Temel et al52) have shown that this is feasible and can influence care and policy recommendations.60
Lastly, to achieve implementation of
evidence-based interventions and findings, we believe several
investments should be considered.
Standardizing and disseminating mandated communication
training would be a significant but promising undertaking that has
increasingly been supported34,61,62 and fits the notion that a lack of training hampers effective communication.63,64
Such initiatives would also be in line with core competencies and
associated milestones set forth by national educational
bodies, such as the US Accreditation Council for
Graduate Medical Education and the American Board of Internal Medicine.65
Mandated trainings would address the current problem of the
self-selection of participants that hampers broad implementation
and demonstration of training effects. With the
growing evidence base regarding the effect of communication, we believe
such
trainings need to be considered beyond medical school
for established physicians as modules of continuing medical education
credits.
In addition, although effective communication is not always time-consuming (eg,16,17,23), we do appreciate the time commitment these sensitive conversations often entail and plea for providing clinicians with
sufficient time for doing this. Next to improving patient outcomes (eg,52,55), recent literature has documented the resource-saving nature of palliative care consultations,66–68 of which communication is a major part. It is promising to see a renewed US push for reimbursement of discussing patients'
advanced treatment preferences.69 A third investment, in line with the trend of specialist versus generalist palliative care,70
is the former sharing their expertise with the latter group, which is
likely to improve dissemination of knowledge. Lastly,
the increase in interactive dissemination (eg, the
Center to Advance Palliative Care's getpalliativecare initiative) and
learning
tools via Internet (eg, www.vitaltalk.org) likely will enhance dissemination of communication skills.
In conclusion, good communication will
always rest at the heart of medicine, serving the patients' needs for
both information
and empathy. As the recognition of empathy as a core
clinical skill grows, we propose a theory-based framework integrating
SPIKES and NURSE to serve patients' double needs in
progressive disease and challenging situations. Although indirect
support
exists for this approach, more evidence is needed
regarding its effect on patient outcomes. Conducting sound research in
this
arena is difficult but might be achieved by involving
patients/families in the development of communication courses, by
measuring
optimal patient-reported outcomes in longitudinal
studies run by expert teams, and by working within the real world, in
which
outcomes are influenced by numerous other variables.
New knowledge should be implemented in clinical care by mandating
communication
trainings, allowing time for communication,
transferring knowledge from experts to generalists, and through
interactive dissemination.
Serious illness and death are challenging for all
involved. Further examination and improvement in the way we train
current
and future clinicians to help patients and families
navigate these choppy waters is therefore essential.
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Manuscript writing: All authors
Final approval of manuscript: All authors
Acknowledgment
We thank Jozien Bensing, PhD, Elsken van der Wall, PhD, and Nicole Plum, MSc, for previous collaborations (with L.V.) that
helped to shape ideas expressed in this article.
REFERENCES
- 1.↵
- 2.
- 3.↵
- 4.↵
- 5.↵
- 6.↵
- 7.↵
- 8.
- 9.↵
- 10.↵
- 11.↵
- 12.↵
- 13.
- 14.↵
- 15.↵
- 16.↵
- 17.↵
- 18.↵
- 19.
- 20.↵
- 21.↵
- 22.↵
- 23.↵
- 24.↵
- 25.↵
- 26.↵
- 27.
- 28.↵
- 29.↵
- 30.↵
- 31.
- 32.
- 33.↵
- 34.↵
- 35.↵
- 36.
- 37.↵
- 38.↵
- 39.↵
- 40.↵
- 41.↵
- 42.↵
- 43.↵
- 44.↵
- 45.↵
- 46.↵
- 47.↵
- 48.↵
- 49.↵
- 50.↵
- 51.↵
- 52.↵
- 53.
- 54.
- 55.↵
- 56.↵
- 57.↵
- 58.↵
- 59.↵
- 60.↵
- 61.↵
- 62.↵
- 63.↵
- 64.↵
- 65.↵
- 66.↵
- 67.
- 68.↵
- 69.↵
- 70.↵
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