Involving Patients in

Shared Decision Making

David R Grube MD

Shared-Decision Making (SDM)• What is it and why is important; when should it

occur; does it make a difference, and how can we do it better?

• A little history….• The Doctor-Patient Relationship • Barriers to SDM• My provocative suggestion for a new model: the “CJ-K/Q”

What?

Shared decision making (SDM) is a collaborative process that allows patients

and their providers to make health care decisions together, taking into account the

best scientific evidence available, as well as the patient’s values and preferences.

Why?

SDM honors both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential

harms and benefits. This process provides patients with the support they need to make the best individualized care decisions, while

allowing providers to feel confident in the care they prescribe.

Why?Core Competencies of ABMS MOC#5: The competency Interpersonal & Communication Skills refers to the demonstration of skills that result in

effective information exchange and partnering with patients, their families, and professional associates (e.g.,

fostering a therapeutic relationship that is ethically sound, using effective listening skills with nonverbal and verbal communication; being mindful of health literacy; and working effectively in a team both as a team member

and as a team leader).

Institute of Medicine, 2001

Six Aims for Improvement in health care:• Safety • Effective• Timely• Efficient:• Equitable and……

IOM

• Patient-centered: providing care that is respectful of and responsive to

individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.

When?

SDM is particularly important when it comes to preference-sensitive care, where there is more

than one clinically appropriate treatment option for the condition, each with benefits and drawbacks, and in which the patient’s values and preferences

should be critical in determining the chosen intervention.

The Medical Authority Model is no longer tenable

The traditional style of medical decision-making in which doctors take sole responsibility for

treatment decisions is no longer tenable . Shared decision-making, in which patients are

given the opportunity to express their values and preferences and to participate in decisions about

their care, is now the standard of care.

Critics of shared decision-making argue that most patients do not want to participate in decisions;

that revealing the uncertainties inherent in medical care could be harmful; that it is not feasible to provide information about the potential risks and

benefits of all treatment options; and that increasing patient involvement in decision-making

will lead to greater demand for unnecessary, costly or harmful procedures which could

undermine the equitable allocation of health care resources.

SDM studies have shown that most patients:

• Do want to participate in decisions• Do want informed consent • Perceive an improvement in their care, in their

comfort, and in the satisfaction with their care, and

• Do not request unnecessary care, but rather, can express their desires to prevent unwanted care

History

Medical dominance of health care has traditionally been the organizing principle in

health care delivery. Medical power has been manifested through the professional autonomy of

doctors, through their pivotal role in the economics of health services, through dominance

over allied health occupational groups, and through administrative influence.

History

With the advent of increasing medical knowledge and technology, sub-specialization, increased responsibility of the entire health care team

(RN’s, PA’s, PT’s, RT’s, etc.), administrative and fiscal restraints, and especially with the

recognition of the value of patient autonomy, the concept of paternalistic medical authority as a

standard has eroded.

Patient Self-Determination Act1991

The purpose of the Patient Self-Determination Act (PSDA) was/is to inform patients of their rights regarding decisions toward their own medical

care, and ensure that these rights are communicated by the health care provider.

Specifically, the rights ensured are those of the patient to dictate their future care (by means such

as a living will), should they become incapacitated.

PSDA

• Patients are given written notice upon admission to the health care facility of their decision-making rights: Patient rights include:• The right to facilitate their own health care

decisions• The right to accept or refuse medical treatment• The right to make an advance health care directive

Informed Consent

• Developed over many years, but is relatively new

• 19th C. England – surgeons accused of assault and battery

• 20th C. – legal decisions have swung the pendulum from the paternalistic “standard of care” model to the “patient-centered” decision making approach

INSTITUTE OF MEDICINE“Dying in America” (2014)

Survival (historical)

Survival (present)

Our survival fantasy (DRG)

Being Mortal

• “We want autonomy for ourselves and safety for those we love.”

• ODTAA• “Perspective is all that matters.”• The “rectangularization” of survival

Another Dichotomy

•Only 30% of US Citizens have completed an AD • 80% of patients want to discuss

their wishes about End of Life Care (EOLC) with their doctor

Health Care - Communication

• The relationship between the health care provider and the patient is complex. It is often an interaction between people that is:• NON-VOLUNTARY• ADDRESSING VITALLY CRITICAL ISSUES• EMOTIONALLY LADEN and• REQUIRES CLOSE CO-OPERATION

Doctor Patient Relationship

Doctor – Patient Relationship• Numerous studies have dissected it

• (ad nauseum)• Issues:

• The importance of ‘sick role’ of the patient• Doctor centered behaviors, and how this attenuates

therapeutic possibilities• Acceptance (or not) of medical authority• Severity of illness• Treatment options vs self-treatment

Doctor – Patient RelationshipModels

• Default• Paternalistic• Consumerism• Mutualistic

Roter and Hall, 1992

Doctor Patient Relationships

Of course, in reality, no doctor patient relationship or encounter is a pure example of any

of these models, but rather, they can be used to identify ways to improve our interactions with our

patients, and thus, to improve medical care.

Doctor – Patient RelationshipForms

• Default• Lack of control on either side• Doctor passive• Patient passive• Doc Martin

Doctor – Patient RelationshipModels

• Paternalistic• Historical model based upon medical authority• Dominant Doctor (expert)• Passive Patient (“whatever you think is best”)• Love and Mercy

Doctor – Patient RelationshipModels

• Consumerism• Patient autonomy• Patient rights• Patient control• Patient independence

Doctor – Patient RelationshipModels

• Mutualistic• Focus on co-operation• Shared decision making• Collaberation• Ideal to strive for; difficult to achieve

The Medical EncounterShared – Decision Making

• Features:• Active involvement of doctor AND patient• Sharing of information by both parties• Both parties acting to achieve consensus about the

preferred treatment plan• Agreeing on which treatment plan to implement

Charles et al, 1997

The Medical Encounter

• The extent to which the agenda is set by the doctor, patient, or both in:• Negotiation• The status of the patient’s values (assumed vs

explored vs unexamined)• The doctor’s functional role as guardian, advisor, and

technician

Shared Decision Making

• Often difficult to achieve in practice• “An ideal” that is often far from reality• But SDM improves outcomes vs other models:

• Improved quality of care• Improved satisfaction (both in patients and staff)• Improved comfort (self esteem) of patients• Reduces ‘overuse’ options

• Murray et al, 2006; O’Connor et al 2003

Barriers to SDM

•Patient•Provider• Institution•Other

Barriers - Patient

• Lack of Trust in the doctor• Fear / Anger / Stress / Depression / Anxiety• Difficulty understanding complex medical

information• Family Dynamics• Cultural / religious differences• Time constraints• Disagreement with health care team

Barriers - Providers

• Time constraints• Communications skills• Inadequate history• Disagreement (with patient, with co-workers)• Personal beliefs confused with personal

integrity

Barriers – Institutional

• Inadequate clinical information systems• Insufficient provider training• Religious restrictions• Fiscal concerns (insurance)• Medical errors

Witnessing barriers - DRG

• OMB • 2001-2008• 2013, 2014 Medical Director Pro Tem• 2010 – present Consultant

• “What does it mean to be a professional?”

Shared Decision Making:Is it really possible?

• It is an ideal to strive for• It is valuable (evidence based)• It is difficult• It is professional• ….and we can all do better

Implementation

“The nature of life, m’lady, is not permanence but flux. ...”

Shared Decision MakingAndrew Lazris MD

www.doc-patient-talk.com

The Importance of VisualizationThe Benefit Risk Characterization Theater

(BRCT).

Implementing SDM• Another model of the doctor patient

relationship: The Court Jester – King/Queen

• A jester was not just a dimwit or a buffoon, but was a ‘licensed fool’ who had many roles in the medieval world, all of which were discerning

HIPPOCRATES

“Some patients, though conscious that their

condition is perilous, recover their health

simply through their contentment

with the goodness of their physician.”

The Court Jesterand the King/Queen

• To discern the noble(wo)man’s dilemma, the jester employed:

• Inquiry (medical history)• Knowledge (medical school, CME)• Experience (internship, residency)• Astuteness (context)• Compassion (compassion)

The Court Jester

The jester then prescribed:• Riddles (the treatment plan)• Humor (to relax the king)• Story telling (anecdotes for illustration)• Music (as therapy)• Analysis (to stimulate critical thinking)• ….and Magic (drugs, surgery, placebos, etc.)

….and he’s in the theater

The ‘licensed fool’• History: paternalism on a pedestal / the patient

subordinate• Future: the court jester at the base / the patient

autonomous

Fool: The root of the word "fool" is from the Latin follis, which means "bag of wind" or that which contains air or breath.

FRESH AIR AND BREATH!

“In literature, the jester is symbolic of common sense and of honesty, notably in King Lear, the jester is a character used for insight and advice

(treatment plan) on the part of the monarch (patient), taking advantage of his license (sic) to

speak freely and dispense frank observations (evidence based outcomes). This presents a

clashing irony. Only as the lowliest member of the court can the jester be the monarch’s most

useful advisor!” WIKIPEDIA

Being able to laugh (at oneself)

Summary

Although talk about patient-centered care is ubiquitous in modern health care, one of the greatest challenges of

turning the rhetoric into reality continues to be routinely engaging patients in decision making. To successfully

address this critical component of quality and safety, we must break down critical barriers between clinicians

and patients. Patients should be educated about the essential role they play in decision making and be given effective tools to help them understand their options and

the consequences of their decisions. They should also receive the emotional support they need to express their

values and preferences and be able to ask questions without censure from their clinicians.

“Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners — learning, in other words, how to ask, “What matters to you?” as well as “What is the

matter?” In addition, novel patient-centered health information technologies that deliver information

in a more timely fashion can help clinicians identify patients who are facing fateful health care

decisions and to more efficiently elicit their preferences.” BARRY et al, 2012, NEJM

“The most important intervention in medicine today happens to be its

least technological: time and comprehensive discussions with

patients …..”

ANGELO VOLANDES“The Conversation”

Success“Recognition of shared decision making as the pinnacle of patient-centered care is overdue. We will have succeeded in building a truly patient-centered health care system when an informed woman can decide whether to have a screening mammogram and an informed man can consider whether to have a screening prostate-specific–antigen test without their clinicians labeling the decision “wrong” on the basis of different values and preferences.” BARRY et al

Tools for Shared Decision Making

• http://shareddecisions.mayoclinic.org/resources/sharing-with-others/

• http://med.dartmouth-hitchcock.org/csdm_toolkits.html

• http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/tools/tool-9/share-tool9.pdf

Overcoming Barriers / Implementation

ResourcesAndrew Lazris MD, Interpreting Health Benefits

and Risks: A Practical Guide to Facilitate Doctor-Patient Communication 2015 Atul Gawande MD, “Being Mortal,” 2014Roz Chast, “Can’t We Talk About Something More Pleasant” 2014Angelo Volandes MD, “The Conversation,” 2015

Institute of Medicine: Crossing the Quality Chasm, 2001Dying In America, 2014

Katy Butler, “Knocking on Heaven’s Door,” 2013Roter, Hall, “Doctors Talking With Patients/Patients Talking With Doctors: Improving Communication in Medical Visits” 1992: Auburn House, Charles, 1997, “Shared Decision Making in the Medical Encounter,” Social Science & Medicine, Vol 44, #5 2005Murray, “Shared Decision Making in Primary Care,” Patient Ed. and Counseling, Vol. 62, #2, 2006O’Connor, “A Survey of Decision Making Needs…” Health Expectations, Vol 6, #2, pp 97-109 June 2003Barry, “Shared Decision Making: The Pinnacle of Patient Care,” NEJM, 2012; 366:780-781