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.
- 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
Taking Steps for Shared Decision Making
1. Better preparation and training for patients and caregivers.
● Providing information in advance
● Helping patients and caregivers develop questions and identify issues in advance of their appointments
● Helping patients identify information resources that help rather than hinder the SDM process
● Educating patients and caregivers on how to be a more effective self-advocate
You can do this by:
● Developing or utilizing materials that help patients understand their condition and differentiate among their choices.
● Connecting patients and caregivers with tools that help them organize and understand information and options
● Providing navigation or care coordination utilizing both the health care team and patients who are trained to share experiences and insights
● Focusing the conversation by having physicians and health care team members ask key questions and initiate discussions that lead to SDM.
Taking Steps for Shared Decision Making
2. Better Training for Clinicians and health care providers
Physicians receive little or no training on how to hold SDM conversations with patients on treatment options and quality of life issues. Many physicians do not believe that it is their role to discuss issues related to direct or indirect costs of care. Evidence based communications skills training and resources are available to physicians. Better use of non-physician health care team members to talk to patients and caregivers about their goals and preferences. Many of these providers have more time and are more inclined to have these conversations
Taking Steps for Shared Decision Making
3. More time and opportunity for SDM
Crowded schedules, short appointment times and the lack of opportunity to have conversations with patients and caregivers are a major barrier to shared-decision making. You can:
● Provide longer appointments at key decision-making points, such as a first discussion of a new diagnosis, a major change in treatment or end of life discussions.
● Develop and use a short list of key questions that allow patients to articulate what is important to them at that time in making their treatment decisions.
● Make better use of the entire health care team to engage patients and caregivers in discussions about treatment and care decisions.
● Use digital and online tools to help patients identify and articulate their concerns and goals before appointments.
● Use clinical data decisions that track patient decisions throughout the process, allowing the health care team to have access to the outcomes of prior discussions.
● More direct discussion of the costs, benefits and risks of various treatment options.
“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.
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
Distinguishing Cost from Value
This is a critical distinction.
● Cost refers to both the direct costs of care—treatment, medication, procedures—born by the patient and to indirect costs that impact decision making or quality of life. These include everything from parking or transportation to lost time of the job or childcare. Any discussion of cost needs to include consideration of all these factors.
● Value includes both costs and benefits of a proposed treatment. Patients cannot be informed consumers unless they can compare costs to benefits and make their decisions in the context of what matters to them.
“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
Developing a Standardized Approach
Systems can be designed to accommodate both the wide range of individual variability and the need to standardize approaches to shared decision making. Steps include:
● Providing patients and caregivers with an explanation of the SDM process and the patient’s role in it before the engagement. This should include discussion about the role the patient wants to play in it, including that of caregivers, and the role that members of the health care team will play.
● This initial explanation should be followed by an assessment of the patient’s readiness and preferences related to SDM.
● Feedback from the pre-SDM work should be communicated to the provider so he/she has some information in advance about patient preferences and goals.
● Once initiated, there should be a standard set of prompts to guide the SDM process at key points in the illness experience. These need to be tailored to individual disease, cultures and health literacy levels.
● Providers should use a range of different decision support tools and options as part of the SDM process. These should cover prognosis, treatment benefits and harms, palliative care, psychosocial support and estimates of total and out of pocket costs. These tools can include both those available to consumers, such as online sites, and those for providers, such as clinical pathways and treatment guidelines.
"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.