With a generous grant from the Fan Fox and Leslie R. Samuels Foundation (Samuels Foundation), FAIR Health has developed an educational platform on shared decision making (SDM) geared for providers and clinicians in New York City who serve older adults who are seriously ill. SDM, the discussion between patients and/or caregivers and healthcare providers regarding various treatment options, has been known to increase patient engagement and reduce healthcare costs.
The new initiative marks the next chapter of FAIR Health’s efforts to promote SDM to consumers. In March 2020, FAIR Health launched a groundbreaking SDM website feature on fairhealthconsumer.org, FAIR Health’s free, award-winning consumer website that enables consumers to estimate the typical costs of medical and dental procedures in their geographic areas and learn the fundamentals of health insurance. The SDM feature combines clinical and cost information to support seriously and chronically ill patients and their caregivers in the process of SDM with clinicians for the following scenarios:
This new online feature for providers and clinicians offers guidance on integrating SDM in discussions with patients and caregivers when making decisions related to the three scenarios above. FAIR Health collaborated with experts in the fields of palliative care medicine, geriatrics and shared decision making to create this offering.
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. Shared decision making (SDM)—a patient-clinician 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, generally involving the use of evidence-based strategies and patient materials called decision aids.
In March 2020 FAIR Health launched SDM tools for patients facing palliative care scenarios. The SDM feature on the FAIR Health Consumer website was designed to assist patients with serious illnesses and their caregivers to access decision aids in three distinct palliative care scenarios in order to make more informed decisions with their healthcare teams. FAIR Health’s efforts have revealed the appetite for SDM among consumers and patients. The three scenarios included: (i) staying on or stopping kidney dialysis for end-stage renal disease, (ii) pursuing different nutrition options when swallowing is difficult and (iii) staying on or removing a breathing machine.
See Resources for our brief on the program learnings entitled Cost Information Enhances Shared Decision Making: Lessons from FAIR Health’s Shared Decision-Making Initiative.
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 clinicians and patients. Since then, the concept has developed further through the creation of different care frameworks that stress the importance of active patient participation.
Gionfriddo et al. summarize SDM’s origins and evolution on the national and international stages, 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” 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. 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.
Legislation and other initiatives that support the use of SDM in the United States currently include:
SDM helps increase patient understanding of treatment options, risks and benefits. It also increases the inclusion of patients’ values in treatment decisions and has a positive effect on doctor-patient communication. A study in 2016 showed that when SDM was utilized, patients were twice as likely to be engaged with their physicians, knew more about their conditions and were less likely to have conflicts over treatment decisions with their medical providers. Studies have shown that when decision aids are used as part of SDM, patients may choose treatment plans that are less invasive 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.
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.
Shared decision making shows promise for reducing unnecessary spending and healthcare costs and for improving decision making without having an adverse effect on clinical outcomes. This is especially important considering the growing issue of “financial toxicity”—the financial, emotional and mental burden patients experience with medical costs that can lead to diminished access to care and a reduced quality of life which has emerged as a concern for patients, especially those receiving cancer treatment. In a study of 1,513 metastatic breast cancer patients, 98 percent of uninsured patients had forgone or postponed treatment due to cost concerns, whereas 41 percent of insured patients had. However, 53 percent of insured patients reported emotional hardship because of possible unknown treatment costs. In a similar study on breast cancer patients, although 79 percent of patients preferred to know the treatment’s cost before starting medical care, 78 percent said they had not discussed costs with their providers. Research suggests that open conversations about treatment costs strengthened trust between doctor and patient and decreased noncompliance with treatment plans due to financial distress. Research further suggests that using decision aids with information about treatment costs leads to cost discussions more often than using decision aids that do not contain cost information.
The COVID-19 pandemic underscored the importance of shared decision making, especially regarding ventilator use., In the United States between February 1 and April 30, 2020, the number of advance directives, a form that allows patients to indicate their end-of-life care preferences, nearly quintupled when compared to January 2020.
See Section 2 to learn about the general shared decision-making framework and considerations for shared decision making with seriously ill older adults and caregivers.
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).
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.
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
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:
An advance directive, e.g., living will and healthcare proxy documents, is a written statement that documents a person’s wishes for future medical care in case the patient becomes unable to express them later. Below are links to resources that you can use with patients and caregivers: