Shared Decision Making

Shared Decision Making (SDM) is a key component of person-centered health care. It is the process in which clinicians and patients work together to make decisions.

SDM is not a “one time” or “one size fits all” event. Patients vary considerably in how they want to engage in a shared decision-making process, and these preferences change with time and individual circumstances.

Shared decision making occurs at multiple critical moments during the illness experience. It can involve choosing tests or treatment options, deciding on whether to enter a clinical trial, dealing with chronic illness, developing a survivorship plan, discussing palliative care or end of life issues and identifying and connecting patients and caregivers to resources.

Goals

  • Provide usable understandable information about the relative costs, benefits and risks of treatment throughout the care and treatment process
  • Provide the patient and family with a foundation for making decisions based on individual values, goals and preferences
  • Link to a clear and detailed goal-concordant plan for the delivery of services that support these decisions
  • Provide tools for making and assessing decisions that align with stated values and goals
  • Take action that is consistent with evidence based treatment and care
  • Link patient preferences to measurable outcomes

"Despite the acknowledged importance of shared decision making, there is not standard or established process for how this should occur. The focus is often on barriers, not opportunities."

— Alan Balch, PhD

BY THE NUMBERS

When asked whether their doctor spoke with them about how they would like to receive medical information and to what level they would like to be involved in their health-care related decisions:

  • 59 percent of respondents said their doctors initiated this conversation during a visit
  • 55 percent said they want to be partners in making their decisions with their providers
  • Only 10 percent said they wanted to make all their medical decisions by themselves
  • 2 percent said they wanted their doctors to make the decisions without their input.

Source: PAF Survey

“Physicians are always worried that asking patients about their preferences or individual goals will lead to long discussions. The truth is that doesn’t happen. Asking a couple of simple questions can really clarify the process, and patients really appreciate the fact that you asked them what matters.”

— Yousuf Zafar, MD, Duke University

TAKEAWAY: A routine set of questions asked at each visit allows the patient to walk into an appointment feeling prepared and provides the physician with a metric that can be tracked and evaluated over time.

“I think that asking these questions up front and understanding how patients want to get information saves time.”

— Lillie Shockney, M.A.S.

Case History

Blyth: The Value of Anticipatory Guidance in Decision Making

Blyth’s daughter, Cameron, was diagnosed with TaySachs disease, a fatal, genetic condition that results in progressive disability, seizures and death, usually in early childhood. Blyth and her husband had no illusions about the prognosis, and in fact, were familiar with TaySachs because their nephew had been diagnosed with the same condition a year before Cameron. Blyth was able to work closely with Cameron’s pediatrician, who served as the primary care provider and coordinated her care. Together they made decisions about Cameron’s care including the most difficult ones related to when to stop actively treating her.

Shared decision making and palliative care from the beginning of the process were critical in helping Blyth and her husband cope with this illness, its progression, and Cameron’s eventual death. “We always knew we were focused on quality of life. I mean, honestly, with her diagnosis, there was no treatment and no cure, so it was only about quality of life. We had to decide what quality of life means to us, what we think it means to her, and does quality of life equate with length of life.

There were choices we made that were not just about comfort care, that were about duration of life. “The most important component (of the relationship with the doctor) was one of trust. Just absolute and total trust in him and his respect for us. We trusted him to guide us and listen to us. He understands disease and symptom management in a way we do not. At the same time, we were the ones who were in control of what defines quality of life for our daughter.

“Anticipatory guidance is really helpful. We knew all the bad things that were coming. We weren’t living in fear of the other shoe dropping because we knew that eventually seizures were going to happen. We knew that she would get pneumonia, that we would have to decide about putting a feeding tube in. It’s unpleasant to wait for the seizures to start, but at least you know what to expect and I think that was very helpful. “Through my creation of Courageous Parents Network (www.courageousparentsnetwork.org) I have become an advocate for parents of seriously ill children. I tell them they want to have a doctor or care team that they trust, that listens to them and communicates honestly. I tell them they want to find a community of others who can help them feel less alone, which is typically other parents. And, I recommend that early in their child’s illness, they get a good palliative care team in place to provide an extra layer of support as a lifeline to quality of life.”

Understanding Shared Decision Making

Interview with Rachel Fournier

 

Asking People about their Goals

Interview with Kathy Foley

 

What Makes a Good Clinical Encounter

Interview with Ricki Fairley

 

 

“Consumer strategies that focus entirely on the cost component may actually run counter to the fundamental goal of trying to improve the patient’s health.”
— Alan Balch, PhD

"We are all in favor of shared decision making. The question is how we do that. What are the evidence based tools for teaching physicians how to have these conversations? How do you prime the patient population to use the available information? What tools are out there that have been vetted and demonstrated to work?”

— Kathy Foley, PhD

Decision Support Tools 

Studies show the use of patient decision aids for a range of preference-sensitive decisions lead to:

  • Increased knowledge
  • More accurate risk perceptions
  • A greater number of decisions consistent with patients’ values
  • A reduced level of internal decisional conflict for patients
  • Fewer patients remaining passive or undecided

The ideal DST would have the following characteristics:

  • Be easy to use and provide accurate information.
  • Allow consumers to understand their share of cost, the total cost, and their spending and utilization to date.
  • Identify preference-sensitive care options aligned with evidence.
  • Adjust for certain variables that may impact care selection including race/ethnicity, transportation, genetics, and financial toxicity.
  • Help navigate discussions about uncertainty.
  • Show quality ratings and feedback that are credible and matter to consumers.
  • Allow consumers to compare price and quality easily and side-by-side.
  • Help consumers identify and understand likely benefits and risks.
  • Contain information on pharmacy and ancillary services, as well as other information designed in particular to assist the elderly and chronically-ill.
  • Help consumers avoid unneeded care and identify less expensive but still appropriate care options.
  • Easily customize and integrate smoothly with other platforms and products.
  • Give employers reports on utilization and savings, and involve them in continuous quality improvement activities.
  • Include support for determining the right social support services.
  • Identify evidence-based quality measures that could be used to help track and score the success of the care plan.

Decision aids can be especially helpful when multiple scientifically valid options exist and each has different pros and cons depending upon the patient’s preferences.  Every care option will vary in its level of likely benefit and side effects as well as cost.  Similarly, patients are likely to vary in terms of their preferences in each of those areas and the tradeoffs they are willing to make between them.