PERSPE C T I V E Shared Decision Making

Shared Decision Making — The Pinnacle of Patient-Centered Care

Michael J. Barry, M.D., and Susan Edgman-Levitan, P.A.

Nothing about me without me. tive of patients: respect for the for the rest of one’s life, and
patient’s values, preferences, and screening and diagnostic tests
— Valerie Billingham,
expressed needs; coordinated and that can trigger cascades of seri-
Through the Patient’s Eyes,
integrated care; clear, high-quality ous and stressful interventions.
Salzburg Seminar
information and education for the For some decisions, there is one
Session 356, 1998
patient and family; physical com- clearly superior path, and patient

C aring and compassion were fort, including pain management;

once often the only “treat- emotional support and alleviation
ment” available to clinicians. Over of fear and anxiety; involvement
preferences play little or no role
— a fractured hip needs repair,
acute appendicitis necessitates sur-
time, advances in medical science of family members and friends, gery, and bacterial meningitis re-
have provided new options that, as appropriate; continuity, includ- quires antibiotics. For most medi-
although often improving out- ing through care-site transitions; cal decisions, however, more than
comes, have inadvertently dis- and access to care.1 Successfully one reasonable path forward ex-
tanced physicians from their pa- addressing these dimensions re- ists (including the option of do-
tients. The result is a health care quires enlisting patients and ing nothing, when appropriate),
environment in which patients families as allies in designing, and different paths entail differ-
and their families are often ex- implementing, and evaluating ent combinations of possible ther-
cluded from important discus- care systems. apeutic effects and side effects.
sions and left feeling in the dark This concept was introduced Decisions about therapy for early-
about how their problems are in the landmark Institute of Med- stage breast cancer or prostate
An audio interview ­being managed and icine (IOM) report Crossing the cancer, lipid-lowering medication
with Dr. Barry is how to navigate the Quality Chasm2 as one of the fun- for the primary prevention of
available at NEJM.org
overwhelming array damental approaches to improv- coronary heart disease, and ge-
of diagnostic and treatment op- ing the quality of U.S. health netic and cancer screening tests
tions available to them. care. The IOM defined patient- are good examples. In such cases,
In 1988, the Picker/Common- centered care as “care that is re- patient involvement in decision
wealth Program for Patient-­ spectful of and responsive to making adds substantial value.
Centered Care (now the Picker individual patient preferences, In an influential article on
Institute) coined the term “patient- needs, and values” and that en- clinical practice guidelines, David
centered care” to call attention sures “that patient values guide Eddy argued that an intervention
to the need for clinicians, staff, all clinical decisions.” This defi- should be considered a “stan-
and health care systems to shift nition highlights the importance dard” only if there is “virtual
their focus away from diseases of clinicians and patients work- unanimity among patients about
and back to the patient and fam- ing together to produce the best the overall desirability . . . of the
ily.1 The term was meant to stress outcomes possible. outcomes.”3 For the vast majority
the importance of better under- As the definition implies, the of decisions in which there is no
standing the experience of illness most important attribute of intervention that meets this high
and of addressing patients’ needs ­patient-centered care is the active bar, patients need to be involved
within an increasingly complex engagement of patients when fate- in determining the management
and fragmented health care de- ful health care decisions must be strategy most consistent with
livery system. made — when an individual pa- their preferences and values.
The Picker Institute, in partner- tient arrives at a crossroads of The process by which the op-
ship with patients and families, medical options, where the di- timal decision may be reached for
conducted a multiyear research verging paths have different and a patient at a fateful health cross-
project and ultimately identified important consequences with last- roads is called shared decision
eight characteristics of care as the ing implications. Examples include making and involves, at mini-
most important indicators of qual- decisions about major surgery, mum, a clinician and the patient,
ity and safety, from the perspec- medications that must be taken although other members of the

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The New England Journal of Medicine

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Copyright © 2012 Massachusetts Medical Society. All rights reserved.
PERSPECTIVE Shared Decision Making

health care team or friends and choosing prostate-specific–antigen to become more effective coaches
family members may be invited tests for prostate-cancer screening or partners — learning, in other
to participate. In shared decision and major elective surgery less words, how to ask, “What mat-
making, both parties share infor- often, which suggests that ters to you?” as well as “What is
mation: the clinician offers op- shared decision making could be a the matter?” In addition, novel
tions and describes their risks tool to help address the problems patient-centered health informa-
and benefits, and the patient ex- of overdiagnosis and overtreat- tion technologies that deliver in-
presses his or her preferences and ment.5 formation in a more timely fash-
values. Each participant is thus Through shared decision mak- ion can help clinicians identify
armed with a better understand- ing, clinicians can help patients patients who are facing fateful
ing of the relevant factors and understand the importance of their health care decisions and to more
shares responsibility in the deci- values and preferences in making efficiently elicit their preferences.
sion about how to proceed.4 the decisions that are best for If we can view the health care
When more than one viable them. Experience has shown that experience through the patient’s
treatment or screening option when patients know they have eyes, we will become more respon-
exists, clinicians can facilitate options for the best treatment, sive to patients’ needs and, there-
shared decision making by en- screening test, or diagnostic pro- by, better clinicians. Recognition
couraging patients to let clini- cedure, most of them will want of shared decision making as the
cians know what they care about to participate with their clini- pinnacle of patient-centered care
and by providing decision aids cians in making the choice. This is overdue. We will have succeeded
that raise the patient’s awareness interest is shared by patients in building a truly patient-centered
and understanding of treatment worldwide, as demonstrated by health care system when an in-
options and possible outcomes. the recent release of the Salzburg formed woman can decide wheth-
Decision aids, which can be de- statement endorsing shared deci- er to have a screening mammo-
livered online, on paper, or on sion making, authored by repre- gram and an informed man can
video, can efficiently help patients sentatives from 18 countries. consider whether to have a screen-
absorb relevant clinical evidence Although talk about patient- ing prostate-specific–antigen test
and aid them in developing and centered care is ubiquitous in without their clinicians labeling
communicating informed prefer- modern health care, one of the the decision “wrong” on the basis
ences, particularly for possible greatest challenges of turning of different values and preferences.
outcomes that they have not yet the rhetoric into reality continues Disclosure forms provided by the authors
experienced. to be routinely engaging patients are available with the full text of this arti-
cle at NEJM.org.
Just as there are randomized in decision making. To success-
trials of tests and treatments, fully address this critical compo- From the Foundation for Informed Medical
Decision Making and the John D. Stoeckle
there have been randomized trials nent of quality and safety, we Center for Primary Care Innovation, Massa-
of shared decision making sup- must break down critical barriers chusetts General Hospital, Boston.
ported by patient decision aids. between clinicians and patients.
1. Gerteis M, Edgman-Levitan S, Daley J,
According to the latest Cochrane Patients should be educated about Delbanco T. Through the patient’s eyes. San
review of 86 trials published the essential role they play in de- Francisco: Jossey-Bass, 1993.
through 2009, the use of patient cision making and be given effec- 2. National Research Council. Crossing the
quality chasm: a new health system for the
decision aids for a range of pref- tive tools to help them understand 21st century. Washington, DC: National
erence-sensitive decisions led to their options and the conse- Academies Press, 2001.
increased knowledge, more accu- quences of their decisions. They 3. Eddy DM. Designing a practice policy:
standards, guidelines, and options. JAMA
rate risk perceptions, a greater should also receive the emotional 1990;263:3077-84.
number of decisions consistent support they need to express 4. Charles C, Gafni A, Whelan T. Shared de-
with patients’ values, a reduced their values and preferences and cision-making in the medical encounter:
what does it mean? (or it takes at least two to
level of internal decisional con- be able to ask questions without tango). Soc Sci Med 1997;44:681-92.
flict for patients, and fewer pa- censure from their clinicians. 5. Stacey D, Bennett CL, Barry MJ, et al. De-
tients remaining passive or unde- Clinicians, in turn, need to re- cision aids for people facing health treat-
ment or screening decisions. Cochrane Da-
cided.5 The use of decision aids is linquish their role as the single, tabase Syst Rev 2011;10:CD001431.
also associated with patients’ paternalistic authority and train Copyright © 2012 Massachusetts Medical Society.

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The New England Journal of Medicine
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Copyright © 2012 Massachusetts Medical Society. All rights reserved.