Shared Decision Making: Protecting Patient Autonomy and Informed Consent

SDM is about patient autonomy and informed consent.

Shared decision making (SDM) is a collaborative model of clinical decision-making that ensures the patient’s values and priorities are centered during the decision making process. It represents a philosophy of clinical practice that restores and protects patient autonomy and informed consent, and it is one of the avenues by which clinicians can achieve their goal of providing patient-centered care.

What is patient-centered care?

In patient-centered care, the individual patient’s specific health needs and desired health outcomes are the driving force behind all health care decisions and quality measurements. Providers consider the patient’s emotional, mental, spiritual, social, and financial needs while providing optimal clinical care.

The proximal outcomes—the patient feeling known, respected, involved, engaged, and knowledgeable—are desirable in and of themselves and may mitigate a patient’s distress associated with illness and uncertainty.

The Values and Value of Patient-Centered Care ,” Epstein et. al., 2011

According to the NEJM Catalyst, patient centered care produces the following benefits for both patients and providers:

  • Improved satisfaction scores among patients and their families
  • Enhanced reputation of providers among health care consumers
  • Better morale and productivity among clinicians and ancillary staff
  • Improved resource allocation
  • Reduced expenses and increased financial margins throughout the continuum of care

Why do we need SDM?

At its core, SDM is about returning agency to the patient in the healthcare decision making process against a historical backdrop of paternalism in medicine. In SDM, the process is truly shared between the patient and the provider – the patient brings their individual needs and preferences to the table, the provider brings their medical expertise, and together they come to an optimal decision. This optimal decision serves both the patient’s specific personal needs and preferences, AND their medical needs.

For mastectomy patients facing the reconstruction decision, SDM is critical to improving patient outcomes. A 2017 study out of Ohio State University found that less than half of patients undergoing mastectomy made a “high-quality” reconstructive decision that was consistent with their values and priorities. And one of the contributing factors was that patients were not adequately informed about their options. Clearly, there is room for improvement in the decision making process.

Patients who choose flat have different priorities

Multiple studies have confirmed that the population of patients who choose to go flat from the outset has distinctly different values and priorities that lead them to this path, vs. the population who chooses breast mound reconstruction (BMR). For women going flat, it’s absolutely critical that we not only have full information about our options, but that our preferences guide our decision making process.

Patients who choose FLAT

About 45% of patients.

  • want to avoid additional surgery
  • do not consider a breasted appearance to be important
  • worry about health impact of implants
  • tend to be older (over age 60, 4/5 choose flat)

Patients who choose BMR

About 55% of patients.

  • accept the possibility of additional surgery
  • want to maintain a breasted appearance to “feel whole”
  • do not want to use prosthetics
  • tend to be younger

It’s clear that for mastectomy patients facing the reconstruction decision, the “right choice” will be completely different for different individual patients.

“The ideal approach to breast reconstruction for one patient may not be the ideal for another. Individual circumstances, values, goals and preferences vary… every patient’s needs are different, and the right approach for breast reconstruction is not just about what is medically appropriate and reasonable.”

Dr. David T. Greenspun, Plastic & Reconstructive Surgeon

SDM has proven benefits

According to Dr. Minas Chrysopoulo of PRMA Plastic Surgery in San Antonio, multiple studies across several medical and surgical specialties have shown that shared decision-making yields many benefits when compared with the traditional “doctor knows best” process (from his 2017 Doximity article):

  • Improved patient education
  • Decreased patient anxiety
  • Decreased decisional conflict
  • Appropriate patient expectations
  • Improved patient satisfaction
  • Improved patient outcomes

Sounds great! How do we get there?

Implementing SDM: the SHARE model

The US Department of Health and Human Services has developed a user-friendly model for clinicians called the SHARE Approach: Essential Steps of Shared Decision Making (SDM). This model outlines five steps health care professionals can take to ensure that they are effectively implementing SDM with patients during clinical encounters. The steps were designed to incorporate the essential elements that have been defined for SDM.

From Dr. Minas Chrysopoulo’s 2017 Doximity artlcle, ” The Importance of Shared Decision Making in Breast Reconstruction”

Step 1: Seek your patient’s participation. Communicate that a choice (or choices) exist and encourage your patients to become involved in the conversation, while also being sensitive to the fact that under stress (as with a cancer diagnosis), some patients may need more direction than others.

Step 2: Help your patient explore and compare treatment options. This step is about ensuring the patient is fully informed, by discussing the benefits and risks of each option. Patients will receive and process this information in a way that centers their preferences, and can use the clinician’s guidance to ensure they understand the medical situation to the maximum extent possible for them.

Step 3: Assess your patient’s values and preferences. As the discussion progresses, the patient will express their assessment of each treatment option. The clinician assesses the patient’s understanding and support their process.

Step 4: Reach a decision with your patient. Collaborative decision making will involve the clinician listening to the patient, and the patient listening to the clinician, with give and take and an eventual decision arising from that process.

Step 5: Evaluate your patient’s decision. In a final review of the decision, the clinician evaluates the plan from a medical standpoint.

Watch Dr. Chrysopoulo’s presentation on SDM at ASPS 2018:

Decision Aids

The existing literature suggests that decision aids reduce decisional conflict, improve self-reported satisfaction with information, and improve perceived involvement in the decision-making process for women considering breast reconstruction (Berlin et. al., 2019).

The Dartmouth-Hitchcock Center for Shared Decision Making has a great list of resources for implementing SDM in clinical practice, including decision aids, toolkits, e-learning resources, and more.

Some examples of decision aids for breast reconstruction: BRECONDA, Breast Advocate, EMMI, Nurse BEDI, Patient +, Healthwise, Kaiser’s Breast Reconstruction Guidebook, MD Anderson’s Breast Reconstruction Options, University of Michigan’s Decision Guide.

A note on barriers to adopting SDM

According to the National Institute for Healthcare Reform, barriers do exist that slow the widespread adoption of SDM in clinical practice, including lack of reimbursement for physicians to adopt SDM under the existing fee-for-service payment system that rewards higher service volume, as well as several other concerns (NIHCR Policy Analysis No. 5, 2011).

Change isn’t easy, and every clinician has reasons for the way they operate. However, the general principle of keeping an open mind and considering the possible benefits of making a change definitely apply. The benefits for both patients and providers of SDM and patient centered care more generally are well characterized.

“There is no doubt that this approach [SDM] can increase emotional effort and at least initially, may prolong the length of consultations. However, as with a new surgical technique, familiarity improves comfort level and efficiency. Regardless of reimbursement model, improved patient outcomes and satisfaction can only help your practice.”

Dr. Minas Chrysopoulo

A note on language

“Shared decision making”… shouldn’t the decision belong to the patient? The term grates for some women, especially given the history of paternalism women have faced (and sometimes continue to face, unfortunately) when facing mastectomy.

“The rejection of medical paternalism in favor of respect for patient autonomy transformed the patient-physician relationship. Historically, medicine and society subscribed to the ethical norm that the physician’s main duty was to promote the patient’s welfare, even at the expense of the latter’s autonomy. A central assumption of the paternalistic framework was that physicians, because of their medical expertise, knew best what was in the best interest of patients. Accordingly, physicians decided which interventions would promote patients’ welfare; patients, for their part, were expected to comply.”

Kilbride et. al., ” The New Age of Patient Autonomy – Implications for the Patient-Physician Relationship” (2018)

SDM is about returning agency to the patient in the healthcare decision making process against this historical backdrop. The patient always retains “veto power” in medical situations (unless they’re declared incompetent, which is rare and a court ordered process). The right to refuse medical treatment is sacrosanct because consent is the foundation of all medical treatment – it’s what distinguishes consensual treatment from battery. In this sense, treatment decisions do belong solely to the patient.

Further reading

The Importance of Shared Decision Making in Breast Reconstruction (Chrysopoulo, Doximity article, 2017)

Shared Decision Making Necessary For Breast Reconstruction (Courtney Floyd, PRMA blog)

What Is Patient-Centered Care? (NEJM Catalyst, 2017)

Quality of Patient Decisions About Breast Reconstruction After Mastectomy (Lee et. al., 2017)

The SHARE Approach—Essential Steps of Shared Decisionmaking: Expanded Reference Guide with Sample Conversation Starters (AHRQ)

Feasibility and Efficacy of Decision Aids to Improve Decision Making for Postmastectomy Breast Reconstruction: A Systematic Review and Meta-analysis. (Berlin et. al. 2019)

Policy Options to Encourage Patient-Physician Shared Decision Making
NIHCR Policy Analysis No. 5
(2011)

Stakeholders’ Perspectives on Postmastectomy Breast Reconstruction: Recognizing Ways to Improve Shared Decision Making (Hasak, 2017)

Helping Patients Make Better Treatment Choices with Decision Aids ( Hostetter & Klein, The Commonwealth Fund)

From informed consent to shared decision-making (Manyonga, Howarth, Dinwoodie & Nisselle, SAMJ Editorial, 2014)

SDM and Patient Centered Care Organizations


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Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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