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The ethical imperative for shared decision-making

Authors:

Abstract

The promotion of shared decision-making is a central policy initiative in the Patient Protection and Affordable Care Act and a key component of person-centered medicine. Yet, as interest increases, disturbing distortions of shared decision-making have occurred. Fueled by a desire to reduce healthcare costs, reduce litigation and improve cost-effectiveness, the underlying rationale for shared decision-making risks being overshadowed. Some portray shared decision-making as a method to bend the cost curve, but opponents claim it is a ploy to ration care to patients [1]. Both these positions misrepresent the underpinning principles. The imperative for shared decision-making rests on the principles of good clinical practice, respecting patients' right to know that their informed preferences should be the basis for professional actions. Technologic advances have led to the proliferation of multiple treatment options while evidence-based medicine has contributed to our understanding that many therapies have marginal benefits. Shared decision-making aims to make the trade-offs between harms and benefits evident to patients rather than ration care. Overutilization arguably arises out of undue corporate influence on the promotion of marginally efficacious therapies with distorted claims of benefit. Other methods should be used to tackle these wider challenges, while the practice of shared decision-making would help medical professionals realign themselves with patients' informed preferences and, in so doing, place patients, not making or saving money, at the center of care.
European Journal for Person Centered Healthcare Vol 1 Issue 1 pp 129-131
129
ARTICLE
The ethical imperative for shared decision-making
Glyn Elwyn BA MB BCh MSc PhD FRCGP
a
, Jon Tilburt MD
b
and Victor M. Montori MD
c
a Professor, The Dartmouth Center for Health Care Delivery Science, Hanover, New Hampshire, USA and Cochrane Institute
of Primary Care and Public Health, School of Medicine, Cardiff University, Cardiff, Wales, UK
b Associate Professor, Knowledge and Evaluation Research Unit, Mayo Clinic Center for the Science of Healthcare Delivery,
Departments of Medicine and Health Sciences Research, Mayo Clinic, Rochester, MN, USA
c Professor, Knowledge and Evaluation Research Unit, Mayo Clinic Center for the Science of Healthcare Delivery,
Departments of Medicine and Health Sciences Research, Mayo Clinic, Rochester, MN, USA
Abstract
The promotion of shared decision-making is a central policy initiative in the Patient Protection and Affordable Care Act and
a key component of person-centered medicine. Yet, as interest increases, disturbing distortions of shared decision-making
have occurred. Fueled by a desire to reduce healthcare costs, reduce litigation and improve cost-effectiveness, the
underlying rationale for shared decision-making risks being overshadowed. Some portray shared decision-making as a
method to bend the cost curve, but opponents claim it is a ploy to ration care to patients [1]. Both these positions
misrepresent the underpinning principles.
The imperative for shared decision-making rests on the principles of good clinical practice, respecting patients’ right to
know that their informed preferences should be the basis for professional actions. Technologic advances have led to the
proliferation of multiple treatment options while evidence-based medicine has contributed to our understanding that many
therapies have marginal benefits. Shared decision-making aims to make the trade-offs between harms and benefits evident
to patients rather than ration care. Overutilization arguably arises out of undue corporate influence on the promotion of
marginally efficacious therapies with distorted claims of benefit. Other methods should be used to tackle these wider
challenges, while the practice of shared decision-making would help medical professionals re-align themselves with
patients’ informed preferences and, in so doing, place patients, not making or saving money, at the center of care.
Keywords
Controversy, ethics, healthcare reform, individual patient, patient involvement, patient preference, person-centered
medicine, shared decision-making
Correspondence address
Professor Glyn Elwyn, Cochrane Institute of Primary Care and Public Health, School of Medicine, Cardiff University,
Heath Park, Cardiff, Wales, CF14 4YS, United Kingdom. E-mail: glynelwyn@gmail.com
Accepted for publication: 19 June 2012
Introduction
The promotion of shared decision-making (SDM) is a
central policy initiative in the Patient Protection and
Affordable Care Act of the US Federal Government [2].
Shared decision-making came about to counter the concern
that professionals might over-reach their roles as agents: it
respects self-determination, the rights of individuals to
make their own decisions. Yet as interest has surged, some
disturbing distortions of shared decision-making have
occurred. Some advocates portray shared decision-making
as a method to bend the cost curve. Opponents claim it is a
ploy to deny care to patients [1]. Both positions
misrepresent the underpinning principles. To argue, as
some now do, that shared decision-making erodes
individual rights is incompatible with its origins and
principles.
Shared decision-making has emerged out of a long-
established movement to respect individual patients. It
stresses an approach to practice where clinicians and
patients make decisions together using the best available
evidence. The patient receives information about the
available screening and treatment options and their
relevant differences, including the associated benefits and
harms. The clinicians and patient then consider these
options in light of the patient’s circumstances, goals and
preferences. Working together, they then select the best
course of action.
Shared decision-making has achieved prominence over
the last decade, to support individual patients to arrive at
informed preferences [3] while preserving the stewardship
role of the profession. Our aim is to counter the charge that
shared decision-making is another name for rationing: the
accusation is so far removed from the underpinning
principles and, despite it having no substance, there is a
danger that it could be amplified and used to de-rail one of
the most important recent developments in medicine.
Multiple arguments can be made in support of shared
Elwyn, Tilburt and Victor
Ethics and SDM
130
decision-making. The Institute of Medicine defined
patient-centered care as a core component of a high quality
healthcare system. Wennberg has argued that shared
decision-making could correct some of the supply-induced
demand that explains small-area practice variation [4].
Evidence-based medicine now requires shared decision-
making to ensure that the application of research evidence
fits the patient’s values and circumstances. But these
arguments appeared after the foundational one.
Misrepresentation of the identity of
SDM
Shared decision-making has recently been presented as a
servant of healthcare efficiency. Fueled by a widespread
and urgent desire to reduce healthcare costs, reduce
litigation and improve the cost-effectiveness of care, the
underlying rationale for shared decision-making risks
being overshadowed. There is a risk that its identity as a
respectful, empathic and patient-focused approach may
become less visible to policymakers, professionals and the
populace, much in the same way that the end-of-life
discussions became derailed by accusations of “death
panels” during the healthcare reform debate in the United
States.
The recent polemical attacks on the shared decision-
making initiatives included in the Affordable Care Act [2],
although seemingly alarmist [1], do pick up on a real and
seductive shift in how SDM has come to be justified and
even marketed in policy and practice circles. Some
advocates have justified SDM as a strategy to improve the
value of care, believing that a more cost-effective
healthcare system meets an obligation of medicine to
distribute the goods of society more fairly. For others,
promoting SDM on the promise of reducing costs indicates
that that the original ethical rationale has been lost
altogether. In sum, the efficiency argument denigrates the
intrinsic respect for individual patients and uses them as
“means”, rather than as “ends in themselves”. For political
advantage, politically right-wing groups have equated
SDM as ‘rationing’; indeed, as “exhibit A” in their case
against so-called “Obamacare”. This extreme portrayal,
albeit incorrect, may find support among health
professionals and patients who may come to regard SDM
as no more than a covert strategy to shift the responsibility
for making difficult decisions away from health
professionals and onto sick and vulnerable patients.
Reclaiming the ethical imperative
of SDM
Although it was perhaps predictable that shared decision-
making would be painted into this ‘rationing’ corner, such
portrayals need to be unequivocally quashed. Whether
SDM can systematically provide efficiency gains is, in
fact, unclear. Randomized trials of SDM tools fail to show
a consistent effect on costs. Despite this, a Lewin Group
analysis that the Commonwealth Fund commissioned and
disseminated [5] and which undoubtedly influenced the
healthcare reform debate, suggested savings in the order of
billions of dollars. Certainly, randomized trials do show
that use of SDM tools often reduce the uptake of some
elective procedures [6], but whether these can be translated
into cost-reductions in routine care has not been
established. Even if we were to accept the tantalizing
promise of cost-reduction - because, more often than not,
informed patients make more conservative choices -
justifying shared decision-making in this way, is
unnecessary, divisive and counterproductive. Reducing
healthcare utilization is not, and ought not to be, a
sufficient rationale: any reduction in utilization should be
viewed as a consequence of achieving shared decision-
making - not the imperative itself.
The imperative for SDM must rest on the principles of
good clinical practice, respecting patients’ right to know:
that their informed preferences should be the basis for
professional actions. Evidence-based medicine has
contributed to our understanding that many therapies have
marginal benefits. Shared decision-making aims primarily
to make the inevitable trade-offs between harms and
benefits evident to patients rather than to impose
restrictions on the distribution of resources. Over-
utilization arguably arises out of undue corporate influence
on the profession, supplying expensive and marginally
efficacious therapies with distorted claims of benefit.
Rather than using SDM to curb these trends, we should
tackle the corruption of healthcare head on. To that end,
the practice of SDM helps medical professionals re-align
themselves with patients’ informed preferences and, in so
doing, place patients, not making or saving money, at the
center of care.
Conclusion
The benefits of shared decision-making to Society will
accrue by the accumulated trust that the profession
engenders through daily interactions that demonstrate
unequivocal fidelity to the dignity and values of informed
patients. We do not advocate the abrogation of professional
roles: it will remain necessary for physicians to disagree,
even argue, respectfully, with patients, provided patients
views are taken seriously. But, as clinicians invite and
welcome patient involvement, it is also essential to share in
the work of making difficult decisions, not to abandon
patients at the fork in the road. This give-and-take
scenario, sensitive to individual patient needs, calls for
skillful and empathic clinicians. Staking a claim to this
ethical imperative, the high moral ground, is the only
viable professional strategy in a politically charged and
polarized healthcare environment. We cannot and must not
allow shared decision-making to be portrayed as rationing,
when the true aim is to place the patient at the heart of
every decision and at the very center of care itself.
European Journal for Person Centered Healthcare
131
Acknowledgements
Dr. Tilburt is supported by the Faculty Scholars Program
of the Greenwall Foundation.
References
[1] The Robert Powell Center for Medical Ethics. “Shared
Decision making:” How the Obama Health Care Law Tries
To Persuade Patients They’re Better Off Without
Treatment. (Accessed 17 Aug 2011); available from:
http://www.nrlc.org/healthcarerationing/SharedDecisionma
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[2] Senate and House of Representatives. (2010). Patient
Protection and Affordable Care Act. HR 3590.Washington.
[3] Katz, J. (1984). The silent world of doctor and patient.
Baltimore: The Free Press.
[4] Wennberg, J.E. (2010). Tracking Medicine. Oxford:
Oxford University Press.
[5] Sheils, J. & Haugh, R. (2009). Cost and Coverage
Impacts of the American Affordable Health Choices Act of
2009: The July 15th draft Staff Working Paper #8.
Washington DC.
[6] Stacey, D., Bennett, C., Barry, M., Col, N., Eden, K.,
Holmes-Rovner, M., Llewellyn-Thomas, H., Lyddiatt, A.
et al. (2011). Decision aids for people facing health
treatment or screening decisions. Cochrane Database of
Systematic Reviews. (10):CD001431.
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Shared Decision making How the Obama Health Care Law Tries To Persuade Patients They're Better Off Without Treatment
  • The Robert
  • Powell Center
  • Ethics
The Robert Powell Center for Medical Ethics. " Shared Decision making: " How the Obama Health Care Law Tries To Persuade Patients They're Better Off Without Treatment. (Accessed 17 Aug 2011); available from: http://www.nrlc.org/healthcarerationing/SharedDecisionma king.html
Cost and Coverage Impacts of the American Affordable Health Choices Act of 2009: The July 15th draft Staff Working Paper #8
  • J Sheils
  • R Haugh
Sheils, J. & Haugh, R. (2009). Cost and Coverage Impacts of the American Affordable Health Choices Act of 2009: The July 15th draft Staff Working Paper #8. Washington DC.
The silent world of doctor and patient
  • J Katz
Katz, J. (1984). The silent world of doctor and patient. Baltimore: The Free Press.