We often rely on our doctors to tell us what care we need. But to get the best care, you and your doctor (and your caregiver, if you have one) should make decisions together. This process is called “shared decision making.” Your doctor shares medical expertise, and you (and/or your caregiver) share what you want out of your care. Then, you make a decision together.
Shared decision making (SDM) is helpful if there’s more than one way to treat your health problem, and there’s no clear “right” choice. These situations, where the preference of the patient matters, are often called “preference-sensitive” conditions. In these cases, patients’ preferences are considered along with clinical evidence about the costs and benefits of different options.
Since patient (and/or caregiver) participation in SDM is a crucial part of treatment planning for preference-sensitive conditions, it is important for patients and family caregivers to be well informed about their options. Decision aids, like those on this website, can help patients and their caregivers discuss with their providers and understand the trade-offs involved in each medical choice, so they can choose the option that aligns with their priorities and values.
FAIR Health aims to equip patients and family caregivers with high-quality information about risks, benefits and costs of care. Thanks to generous grant funding, FAIR Health offers decision aids that combine clinical options from the Option Grid™ patient decision aids with FAIR Health cost data.
Conditions with preference-sensitive treatment options may include anything from uterine fibroids to type 2 diabetes. Decision aids, when discussed with healthcare providers, can help patients with a wide range of conditions understand what different medical options might mean for them. FAIR Health offers decision aids for patients with uterine fibroids, slow-growing prostate cancer and type 2 diabetes.
SDM also can help seriously ill patients and their caregivers make decisions surrounding palliative care. Palliative care is used to ease pain and discomfort in patients who are seriously ill. It treats the symptoms of an illness (like nausea or trouble sleeping), not the illness itself. Patients getting palliative care can still have medical treatments that might cure the illness. Palliative care is not the same as hospice care. Patients receiving hospice care are no longer receiving treatment for their illnesses. FAIR Health offers decision aids for seriously ill patients, and caregivers of seriously ill patients, who may be facing decisions related to dialysis, ventilator and nutrition options.
The decision aids are not intended to be medical advice, diagnosis or treatment. They are intended to provide information to help you engage in shared decision making with health professionals.
In 2021 The John A. Hartford Foundation awarded FAIR Health funding for its project “A National Initiative to Advance Cost Information in Shared Decision Making for Serious Health Conditions” with the goal of expanding FAIR Health’s repository of consumer-oriented tools, resources and educational content. As part of the initiative, FAIR Health created dedicated website sections with information, tools and resources for older patients, family caregivers and care partners. Through this grant FAIR Health developed new tools and resources that include the following:
FH® Total Treatment Cost scenarios
If you have a chronic illness or need a complex procedure, it’s a good idea to get an FH Total Treatment Cost estimate. It can show you the total cost involved in caring for conditions that affect older adults, like Alzheimer’s disease/dementia, heart failure and major depression. You also can find total costs for other procedures, like knee replacement and cataract surgery.
(e.g., provider and patient checklists pertaining to shared decision making and healthcare navigation)
This section describes SDM’s history, its impact and how cost conversations have become increasingly important when making healthcare decisions.
Although patients in the United States shoulder a significant portion of their healthcare costs, research suggests that they may not always receive the care they prefer.[1]. Shared decision making (SDM)—a patient-provider dialogue regarding treatment options—helps to assure that tests, treatment and care will be based on clinical evidence that balances risks and expected outcomes with patient preferences and values,[2] generally involving the use of evidence-based strategies and patient materials called decision aids.
The concept of SDM in medicine dates back to the mid-20th century, when SDM was first developed as the idea of mutual participation between health care providers and patients.[3] Since then, the concept has developed further through the creation of different care frameworks that stress the importance of active patient participation[4].
Gionfriddo et al. summarize SDM’s origins and evolution on the national and international stages,[5] including the pivotal 1982 Presidential Commission that recognized “shared decision making” as a concept and deemed it to be the “appropriate ideal for patient-professional relationships”[6] and the 2010 Salzburg Statement on Shared Decision Making, created by 18 countries including the United States, that called for the implementation of SDM frameworks in patient care.[7] In its 2001 report Crossing the Quality Chasm, the Institute of Medicine discussed the adoption of shared decision making within a patient-centered care model.[8]
SDM helps increase patient understanding of treatment options, risks and benefits. Research suggests that, on average, it increases the inclusion of patients’ values in treatment decisions and has a positive effect on provider-patient communication.[14] A study in 2016 showed that when SDM was utilized, patients were twice as likely to be engaged with their providers, knew more about their conditions and were less likely to have conflicts over treatment decisions with their providers.[15] Studies have shown that when decision aids are used as part of SDM, patients may choose treatment plans that are less invasive[16] and may be more likely to comply with treatment plans and have improved outcomes, as found in a study of asthma patients who participated in SDM discussions with their clinicians.[17]
Notably, studies have shown no significant differences in encounter times for practitioners who implemented SDM and those who did not.[18],[19]
Sensitive communication approaches that are responsive to different cultures can help mitigate challenges to shared decision making that arise due to lower literacy; racial, ethnic or religious differences; and language or cultural differences.[20] Productive SDM discussions may build patient trust and comfort when speaking about medical issues, and may be hampered by language barriers or cultural differences in autonomy and autonomous medical decision making.[21]
The shared decision-making process can occur over the course of one or more conversations. This section offers a general description of the process, including different models that are used to explain the process, and considerations for older adult patients who are seriously ill and their caregivers (e.g., triadic decision making, goal setting and risk communication). The section also offers information on shared decision making for preference-sensitive conditions, such as type 2 diabetes, uterine fibroids and slow-growing prostate cancer.
Shared decision making is a collaborative effort between you (the healthcare provider), the patient and the caregiver or family member. Shared decision making generally involves setting the stage for team-based decision making by supporting the patient when discussing choices, eliciting patients’ goals, discussing the risks and benefits of treatment options and, finally, making a decision with the patient and/or caregiver.
The three-talk model, developed by Dr. Glyn Elwyn of the Dartmouth Institute and modified by FAIR Health to reflect cost conversations (Figure 1), encapsulates the different steps for achieving shared decision making, collaboratively.
Another approach, developed by the Agency for Healthcare Research and Quality (AHRQ), is the SHARE approach, which includes the following five steps for shared decision making: Seek your patient’s participation; Help your patient explore and compare treatment options; Assess your patient’s values and preferences; Reach a decision with your patient; and Evaluate your patient’s decision.[50]
While shared decision-making models largely convey a similar process of collaborative decision making, patients and providers can choose to use the model that is most helpful to them.
Figure 1: Three-Talk Model of Shared Decision Making, Adapted for Cost Conversations[51]Shared decision making involves setting the stage for the decision-making process, discussing options for care and, finally, making the decision. This section offers a toolkit that can be downloaded for easy reference.
Refer patients and caregivers to the Shared Decision-Making Tools on the FAIR Health Consumer website before speaking about the different options. Patients and caregivers can refer to the decision tools beforehand.
Explain the potential risks associated with each treatment option using statistical information:
Take notes that you can refer to later and/or ask a family member or caregiver to join/attend and take notes.
Take notes that you can refer to later and/or ask a family member or caregiver to join/attend and take notes.
Ask a family member or caregiver to join/attend and take notes that you can refer to later.
An advance directive, e.g., living will and healthcare proxy documents,[43] is a written statement that documents a person’s wishes for future medical care in case the patient becomes unable to express them later.[44] Below are links to resources that you can use with patients and caregivers: