Supporting patients to make the best decisions
BMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d2117 (Published 07 April 2011) Cite this as: BMJ 2011;342:d2117
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The Salzburg statement aimed to establish shared decision making
(SDM) as the absolute must [1]. This "co-production of health" model [2]
is responding to a growing demand from patients to be informed and
involved in decisions about their health, and the evidence in favour is
considered robust [3]. However, a major issue might be underestimated
about the validity of such evidence.
It appears consensual that SDM must
be tailored to each patient [4], depending on numerous factors (social,
cognitive, chronology... and probably many others remaining to be
identified). Thus, one might wonder whether randomization is a relevant
method for assessing the efficacy of such an approach. For example,
assuming that half of the population will prefer SDM and that the other
half will favour clinician decision making (CDM), a randomized trial will
equally allocate both approaches to each group of patients. It might in
the end show that half patients were satisfied in each group, thus masking
the real benefit of SDM in patients that otherwise would have been good
"applicants" for it.
The more the proportions of SDM versus CDM patients
are close to 50%, the lower the power of such trials will be. It is very
unlikely that such trials would answer the question initially asked.
Clinical trials should rather aim to show that SDM is beneficial for
patients who embrace it (therefore restricting the inclusion to such
patients), to develop and validate tools for encountered clinical
situations and to identify predictive factors of success for appropriately
selecting patients.
JD Zeitoun, P Blanchard, D Dupagne
JD Zeitoun, gastroenterologist, consultant for health communication
agencies, Paris
P Blanchard, radiation oncologist, Institut Gustave Roussy, Villejuif
D Dupagne, general practitioner, designer and webmaster a French website
of discussion forums dedicated to patients, Paris
1. Gulland A. Welcome to the century of the patient. BMJ 2011; 342:
d2057.
2. Marshall M, Bibby J. Supporting patients to make the best decisions.
BMJ 2011; 342: d2117.
3. O'Connor A, Bennet C, Stacey D, Barry M, Cole N, Eden K, et al.
Decision aids for people facing health treatment or screening decisions.
Cochrane Database Syst Rev 2009; 3: CD001431.
4. Kon A. The shared decision-making continuum. JAMA 2010; 304(8): 3597-8.
Competing interests: No competing interests
Sir,
Marshall and Bibby [1] ask us to imagine, "... an intervention
designed to improve patient care that a systematic review has shown to be
effective, does not seem to have any unwanted effects, has been a central
component of health policy for more than a decade, is popular with
patients, and which in principle is embraced by most clinicians." They
then go on to identify this remarkable development - namely, shared
decision-making. This, we are told, "... is a concrete manifestation of a
more substantial social process, the re-conceptualisation of the roles and
responsibilities of patients and health professionals..."
As it turns out, despite numerous RCTs, there is no evidence that
shared decision-making improves clinical outcomes. [1] But this, it seems,
is of no consequence. Instead, we are to focus on rejecting the belief
that, "... patients are not able to understand complex information..."
Nowadays, it appears that they are "experts." However, when we look at the
complexity of statistics-based research - in other words, the kind that
influences much of medical practice today - we find that it is extremely
unlikely that all but a small minority of patients would find the data
accessible. [2] This is not to say that patients should not be fully
informed about their illness but it does argue against the notion that
somehow they can have sufficient knowledge to decide on the best medical
management for their condition.
Perhaps we should ask the authors to imagine an institution treasured
by the nation that is teetering on the brink of collapse, to imagine that
it is facing severe financial constraints that threaten its ability to
deliver adequate health care, and to imagine that its staff - overworked,
stressed and confronted by imminent job losses - are demoralised. Amidst
all this chaos, we have articles and editorials in the BMJ asking for
doctors and other health-care professionals to spend considerable time and
effort in pursuit of something which, as far as is known, is unlikely to
affect their clinical outcome. Maybe it is time to "re-conceptualise" the
role of organisations like The Health Foundation in the formulation of
policies related to clinical practice.
James Penston
References
1. Marshall M, Bibby J. Supporting patients to make the best
decisions. BMJ 2011;342;d2117.
2. Penston J. Stats.con - How we've been fooled by statistics-based
research in medicine.
Competing interests: No competing interests
The editorial "Supporting patients to make the best decisions" (BMJ
2011;342:d2117) raises interesting areas of debate about the relationship
between a physician-expert and a patient seeking his advice. The authors
use the term "shared decision making". This term is ambiguous. I have
always favoured a full (non-technical) explanation (to the patient) of the
various treatments I am offering, giving the pros and cons of each, citing
the evidence base and finally making a recommendation. Some may
misconstrue the last step to be reflective of paternalism ("doctor knows
best"). However, the element of paternalism is almost eliminated by the
explanations preceding the recommendations. That is to say the latter is
the physician's interpretation of the evidence base applied to the
particular patient seated in front of him. With the ubiquitous
availability of computers allowing easy demonstration of all aspects of
medical care using all media (text, art, video etc), it is nonsense to
suggest that this approach, essentially the sharing of information, is
"counter cultural".
The expert does indeed know best. That is why his opinion was sought in
the first place. That is his raison-d'etre - to deliver an expert opinion.
A "lay-person" cannot, ipso facto, be in the equivalent position. When we
employ a professional such as a lawyer or an accountant we take her advice
in good faith. That doesn't prevent us from asking as many questions as we
like and being part of the process but in the end we defer to the expert's
advice. That does not mean that the process whereby the decision has been
reached is not shared. The evidence-base, which is the gold standard, has
been explained and interpreted for the patient. There is another reason
why the term "shared decision" is misleading. It does not imply shared
responsibility. If things do not turn out as satisfactorily as either the
expert or the patient/client expected - which of course is a possibility
which should have been covered in the explication stage - the experts will
be the ones who take the blame. So they should precisely because they are
the experts - and often the exponents too. It is the sharing of
information that is uppermost, followed by appropriate guidance and a
mutually agreed treatment; this process can easily be documented. It is
not the same as a shared decision which cannot.
Competing interests: No competing interests
A missing point in the excellent and important Salzburg Statement is
a call to medical teachers to participate in the paradigm shift of shared
decision making.
Current teaching emphasizes and promotes among students the need for
certainty in a dichotomous (right/wrong) view of the world.
As we recently wrote (Medical Care, April 2010), overconfidence bias,
already apparent during preclinical training, may later challenges
physician's communication about values with patients and families.
It is a special challenge for medical teaching to educate for uncertainty:
How can we make sure, at the final exam, that the student is ready to
admit that she/he doesn't know?
Competing interests: No competing interests
We agree that system change is needed if the benefits of shared
decision making are to manifest in better outcomes (1). However, it was
not long ago that a very similar concept, that of 'patient centredness,'
was introduced into the clinical consultation (2, 3). There has been
considerable difficulty in defining patient-centredness (4) and it is
likely that the concept of shared-decision making has arisen as a
consequence. The recognition that mutual participation is a facet of the
entire medical consultation dates back many years (5) and suggests that
the concepts should not be addressed separately.
We believe that patient-centredness and shared decision making are
inextricably linked and it may be difficult to nurture a culture for the
latter without the former. Indeed, evidence suggests that patients with
long-term illness, whom would benefit the most from involvement in their
decisions (6), also benefit from patient-centred clinical consultations
(7).
It may therefore be appropriate to suggest using existing resources
to encourage research into methods of nurturing a culture of patient-
centredness amongst clinicians, Conversely, if the shared decision making
movement, embodied by the Salzburg Statement (8), can encourage a greater
degree of patient-centred practice it should be welcomed by all.
References
1) Marshall M., Bibby J., Supporting patients to make the best
decisions. BMJ 2011; 342:d2117
2) Levenstein J., McCracken E., et al. The patient-centred clinical
method 1: a model for the doctor-patient interaction in family medicine.
Family Practice. 1986; 3: 24-30. (Accessed on 07 April 2011)
3) Stewart M. "Effective physician-patient communication and health
outcomes: a review." CMAJ. 1985; 152(9): 1423-33. (Accessed on 07 April
2011)
4) Mead N., Bower P. Patient-centredness: a conceptual framework and
review of the empirical literature. Soc Sci Med. 2000; 51(7): 1087-110.
(Accessed on 07 April 2011)
5) Szasz T., Hollender H. The basic models of doctor-patient
relationship. Ann Intern Med. 1976; 125:763-69. (Accessed on 07 April
2011)
6) Gulland A. Welcome to the century of the patient. BMJ. 2011;
342:d2057
7) Michie S., J. Miles., et al. Patient-centredness in chronic
illness: what is it and does it matter? Patient Educ Couns. 2003; 51(3):
197-206. (Accessed on 07 April 2011)
8) Salzburg Global Seminar. Salzburg statement on shared decision
making. BMJ 2011; 342:d1745 (Accessed on 07 April 2011)
Competing interests: No competing interests
Obstacles to shared decision making in France
Marshall and Bibby [1] report that recent systematic review has
demonstrated the advantages of shared decision making and clear
directives have been issued in the UK promoting more involvement in
medical decisions for patients at the NHS constitution level [2], yet
results we have obtained in France indicate that shared decision making
here is not yet common practice, nor generally considered to be a
necessary step in patient treatment for cancer.
In 2008, we were commissioned to design and construct a tool for
shared decision making in adjuvant chemotherapy for breast cancer in a two
-step project funded by the French National Cancer Institute (INCa). The
first step involved researching the existing decision-making aides,
opinions and practices in the field. We were, in this initial observation
phase, to collect information from around 50 consultations between
patients and cancer specialists where the cancer specialist judged that
shared decision making took place and to interview 50 clinicians to
provide data for the construction of a decision making tool. However, over
a period of 2 years, we were only able to observe 32 consultations across
5 cancer centres due to a perceived shortage of consultations where shared
decision making occurred. We supplemented these observations with 41
interviews with oncologists that expressed a real reluctance to engage in
shared decision making with their cancer patients for a number of patient-
, practitioner- and process-related reasons.
Practitioners indicated that the application of national and
international clinical practice guidelines (CPG) and the mandatory
multidisciplinary committee meeting (RCP) seem to dominate over the
process of patient input into treatment decisions. This finding is set
within a particular culture of risk management in France where the main
priority documented in different domains across medicine, anthropology and
sociology [3] is to remove risk via reference to objectified guidelines.
This has been documented previously as the 'French social idea of zero
risk' [4]. In essence, we put forward that the statement of the Salzburg
declaration that "much of the care patients receive is based on the
ability and readiness of individual clinicians to provide it, rather than
on widely agreed standards of best practice or patients' preferences for
treatment" is of less relevance in France. While this lack of shared
decision making in France has already been noted in passing in some
reports [5], the cultural and organisational reasons behind this have not
yet been brought to light.
Overall, our experience indicates that the paternalistic approach to
oncology care dominates in France and patient involvement in decision
making is not seen as a requirement by both the medical profession, nor by
patients. This finding contrasts with recent results in the USA regarding
over 10 000 lung or colorectal cancer patient decisions (including
approximately 4000 chemotherapy decisions) indicating that only 17.5% were
'physician controlled'[6] and also with the recent consensus on the
importance of shared decision making [7] and the recent systematic review
demonstrating the advantages of shared decision making [1]. Conversely,
there is little mention of patient involvement in the recent consensus for
breast carcinoma [8].
It is clear that in France, medical practices are different to in
other countries, especially USA and UK, and that these medical practices
are based on cultural models that go beyond the realm of medicine. A
recent comparison of differences and similarities between CPG for breast
cancer across five countries did not include patient involvement as a
factor [9]. A similar large inter-country survey focussing on the ways
patients are involved in medical decisions across countries would provide
rich results.
References
[1] Marshall M, Bibby J. Supporting patients to make the best
decisions. BMJ 2011;342:d2117.
[2] Department of Health. The NHS Constitution for England. www dh
gov
uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113613
2010.
[3] Castel P. La gestion de l'incertitude medicale : approche
collective et controle lateral en cancerologie. Sciences Sociales et
Sante, Avril; 2008.
[4] Peretti-Watel P. Sociologie du risque. Paris: 2000.
[5] Nguyen F, Moumjid N, Bremond A, Carrere MO. La participation
des patients a la decision medicale vue par les medecins - le cas des
chirurgiens dans un reseau. In: John Libbey Eurotext, editor. Soins en
reseau, pratiques, acteurs et regulation en cancerologie. 2007. p. 63-74.
[6] Keating NL, Beth LM, Arora NK, Malin JL, Ganz PA, van RM, et al.
Cancer patients' roles in treatment decisions: do characteristics of the
decision influence roles? J Clin Oncol 2010;28:4364-70.
[7] Salzburg statement on shared decision making. BMJ
2011;342:d1745.
[8] Goldhirsch A, Wood WC, Coates AS, Gelber RD, Thurlimann B, Senn
HJ. Strategies for subtypes--dealing with the diversity of breast cancer:
highlights of the St Gallen International Expert Consensus on the Primary
Therapy of Early Breast Cancer 2011. Ann Oncol 2011.
[9] Wolters R, Regierer AC, Schwentner L, Geyer V, Possinger K,
Kreienberg R, et al. A comparison of international breast cancer
guidelines - Do the national guidelines differ in treatment
recommendations? Eur J Cancer 2011.
Competing interests: No competing interests