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About Shared Decision Making

Shared Decision Making

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:

  • Dialysis for People Who Are Seriously Ill;
  • Nutrition Options for People Who Are Seriously Ill; and
  • Ventilator for People Who Are Seriously Ill.

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.

Section 1: Introduction to Shared Decision Making

This section describes SDM’s history, its impact and how cost conversations have become increasingly important when making healthcare decisions.

Section 1 Executive Summary:
  • Shared decision making, the discussion between patients and/or caregivers and healthcare providers regarding various treatment options, has been known to increase patient engagement and shows promise for reducing healthcare costs and helping to address financial toxicity.
  • Shared decision-making tools that are designed to be easy to understand can be useful for patient populations with low levels of health literacy and health insurance literacy.
  • Encounter times have not been shown to take longer when shared decision making is conducted.
  • FAIR Health offers shared decision-making tools for your reference on the website here, and for patients, on the FAIR Health Consumer website. The tools are for seriously ill patients facing three life-sustaining scenarios: breathing with a ventilator (whether to continue or remove), kidney dialysis for patients with end-stage renal disease (whether to stay on or stop) and nutrition options.
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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-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[2], 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.

History of Shared Decision Making

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[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].

Legislation and other initiatives that support the use of SDM in the United States currently include:

  • A Washington State law (2007) supports the use of SDM and decision aids in medical care to advance doctor-patient communication and certifies specific decision aids to assist SDM.[9]
  • The Affordable Care Act of 2010 mentions and supports the use of SDM and decision aids in medical encounters.[10]
  • In 2018, the Centers for Medicare & Medicaid Services (CMS) required the use of decision aids in at least one encounter specifically geared toward shared decision making when considering the use of implantable cardioverter defibrillators (ICDs) for certain patients.[11] CMS also requires the use of decision aids in the following clinical scenarios: percutaneous left atrial closure for non-valvular atrial fibrillation[12] and lung cancer screening for beneficiaries who meet certain criteria.[13]
Impact of SDM

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.[14] 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.[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]

Shared Decision Making, Costs and Financial Toxicity

Shared decision making shows promise for reducing unnecessary spending[21] and healthcare costs[22] and for improving decision making without having an adverse effect on clinical outcomes[23]. 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[24] 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.[25] 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.[26] Research suggests that open conversations about treatment costs strengthened trust between doctor and patient and decreased noncompliance with treatment plans due to financial distress.[27] 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.[28]

COVID-19

The COVID-19 pandemic underscored the importance of shared decision making, especially regarding ventilator use.[29],[30] 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.[31]

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.

Section 2: Shared Decision Making for Life-Sustaining Technologies—What Is Involved?

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).

Section 2 Executive Summary:
  • Shared decision making is a collaborative effort between you (the healthcare provider), the patient and the caregiver or family member.
  • Define the caregiver’s role in the decision-making process early on.
  • Actively encourage caregiver and family member participation in decision making; keep older adult patients involved.
  • Eliciting the patient’s goals is an important aspect of shared decision making.
  • Risk communication is key in shared decision making. See: Communicating Numbers to Your Patients: A Reference Guide for Health Care Providers
  • Make sure the patient and caregiver understand the options you described using the teach-back method. See: Using the Teach-Back Technique: A Reference Guide for Health Care Providers.
  • If discussing healthcare costs, refer patients to the FAIR Health Consumer website, fairhealthconsumer.org. You can similarly use the FAIR Health tools available on this site.
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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.[32]

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[33]
Figure: Adapted with permission from Dr. Glyn Elwyn, Dartmouth Institute of Health Policy and Clinical Practice.
Figure: Adapted with permission from Dr. Glyn Elwyn, Dartmouth Institute of Health Policy and Clinical Practice.

Shared Decision Making at a Glance

Setting the Stage for a Team-Based Decision (Team Talk)
Over one, or a series, of appointments, you, the healthcare professional, can set the stage for shared decision making. Early on, establish who is involved in the decision-making process, e.g., patient, caregiver and/or other family member. Emphasize that working collaboratively, you, the patient and caregiver can make a decision that accounts for the patient’s goals. Elicit the patient’s goals[35] and use them to help guide the discussion.
Click here for a full description and examples. When Caring for Seriously Ill Older Adults
When caring for seriously ill older adult patients and their caregivers, it is helpful to establish how involved the caregiver and patient will be in the shared decision-making process early on. Research suggests that older adults may find shared decision making valuable and largely prefer an active role in the decision-making process, though this preference seems to be lower among those with multiple comorbidities.[36] When caregivers and family members are involved, “triadic decision making” may be a valuable approach. Involving the healthcare team, caregiver and patient,[37] it helps assure that all sides are heard, as preferences of older patients and their caregivers may differ.[38]

Caregivers may play myriad roles in the treatment and decision-making process (e.g., participating in decision making and providing care during treatment), so defining the caregiver’s role early on can make it easier to engage both the patient and caregiver early on and minimize discordance during the decision-making process.[39] Caregivers may naturally take on a more involved decision-making role when a patient is cognitively impaired.[40] If so, it may be useful to assess the patient’s cognitive abilities to determine the level of involvement of the patient and the caregiver.[41]

Prior to discussing options, you can refer patients to decision tools and advise the patient and caregiver to review them before the options are discussed. If you have a patient with end-stage renal disease on dialysis, nutritional options when swallowing is difficult and/or breathing assistance with a ventilator, you can refer to the SDM tools that FAIR Health offers here.

Throughout the process, active listening to the patient and caregiver, along with deliberation, can support the decision-making process.

Discussion Prompts:
  • “Let’s work as a team to make a decision that suits you best.”∞
  • “What are your goals for this decision?”∞
  • “What are you hoping for in life?”*
  • “What are you most afraid of losing in life?”*
  • “To what extent are costs of treatment a factor in this decision?”
  • “What is most important to you for this decision?”∞
∞Glyn Elwyn et al., 2017. *Neeltje Vermunt et al., 2019.
Using Shared Decision-Making Tools to Discuss Options (Option Talk)
During this stage, you discuss the different treatment options with decision tools that show the risks and benefits of each of the options; this is called risk communication.[34] You also may discuss the costs of the options when the information is available and if the patient and caregiver would like the information. You also may use shared decision-making tools, such as those from FAIR Health, if applicable.
Making the Decision Together (Decision Talk)
Healthcare providers, patients and/or caregivers reach a decision about care based on the patient’s values, goals and preferences (and based on the knowledge of the healthcare team).
Click here for a full description and examples.
Prompts for Decision Talk:
  • “Tell me what matters most to you for this decision.”∞
  • “What additional questions do you have for me to help you make a decision?”
  • “Would you like more time to think about the options or are you ready to decide?”
∞Glyn Elwyn et al., 2017.

Section 3: Using Shared Decision-Making Tools for Life-Sustaining Technologies

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.

Setting the Stage for a Team-Based Decision (“Team Talk”)
WHAT YOU CAN DO
  • Invite your patient and caregiver to participate in decision making.
  • Discuss the roles of the patient and caregiver(s) in the decision-making process.
  • If caregivers are part of the decision-making team, encourage their participation.
  • Assess the patient’s cognitive abilities if indicated.
  • Discuss the patient’s goals and preferences for treatment. Are costs an important consideration?
  • Ask open-ended questions.
  • 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.

WHAT YOU CAN SAY
  • “Let’s work as a team to make a decision that suits you best.”∞
  • “What are your goals for this decision?”∞
  • “What are you hoping for in life?”*
  • “What are you most afraid of losing in life?”*
  • “How important are costs for this decision?”
  • “To what extent are costs of treatment a factor in this decision?”
  • “What is most important to you for this decision?”
∞Glyn Elwyn et al., 2017. *Neeltje Vermunt et al., 2019.
RESOURCES
On this site:
Shared Decision-Making Tools
Refer patients to
Patient Educational Content
Using Shared Decision-Making Tools to Discuss Risks and Benefits of Options (“Option Talk”)
WHAT YOU CAN DO
  • Where possible, refer to shared decision-making tools when discussing options.
  • Use familiar, easy-to-understand language when explaining options.
  • Ask whether costs matter to the patient/caregiver for the decision. If so, discuss using the decision tools on FAIR Health Consumer, or the medical cost lookup on the site.
WHAT YOU CAN SAY
  • “Let’s compare the possible options.”∞
  • “These options may have different effects for you compared with others, so I want to describe the options and their effects.”
  • “We can discuss related costs if you feel they are important for this decision.”
  • “Some people may find that cost may matter more to them. If that is the case, we can go over how the costs compare for the clinical options. If you would like to know the costs, we can do that here, or I can refer you to someone who can discuss this with you.”
∞Glyn Elwyn et al., 2017.
Use Risk Communication Principles
WHAT YOU CAN DO

Explain the potential risks associated with each treatment option using statistical information:

  • Describe the estimated risk using numbers and not descriptive words, e.g., “low risk.” Patients may have a different definition of risk.
  • Use standardized vocabulary consistent with national guidelines.
  • Use a consistent denominator when explaining statistical risk (e.g., out of 100 people).
  • Present an equal balance of positive and negative outcomes.
  • Provide absolute numbers rather than relative risks.
  • Use visual aids where appropriate. [42]
Check for Understanding: Did the patient and/or caregiver understand the options?
WHAT YOU CAN DO
  • Watch for trouble making the decision.
  • You can use the “teach-back” method to determine whether patients and caregivers understand the options and to help clarify any uncertainty.
WHAT YOU CAN SAY
  • “Could you tell me how you understand the treatment choices I’ve presented to you for your [condition]?”
  • “We have discussed different options for [your condition]. So that I make sure I explained them clearly, can you tell me how they are different?”
  • I would like to know how well I explained the options for treatment. Could you tell me how you understand the treatment choices I’ve presented [for your condition]?”
  • “We talk about [name the options]. Would you be able to tell me how you would explain them to someone?”
  • “When you think about these options, what matters most to you?”
  • “Comparing the possible risks, what matters most to you? What worries you the most?”
(Based on: AHRQ SHARE Approach to Shared Decision Making)
Make the Decision Together (“Decision Talk”)
WHAT YOU CAN DO
  • Reach a decision about care based on the patient’s values, goals and preferences (and based on your expertise).
WHAT YOU CAN SAY
  • “Tell me what matters most to you for this decision.”∞
  • “What additional questions do you have for me to help you make a decision?”*
  • “Would you like more time to think about the options or are you ready to decide?”*
∞Glyn Elwyn et al., 2017. (Based on: AHRQ SHARE Approach to Shared Decision Making)
References:
  1. AHRQ SHARE Approach to Shared Decision Making
  2. AHRQ, Using the Teach-Back Technique: A Reference Guide for Health Care Providers
  3. AHRQ, Communicating Numbers to Your Patients: A Reference Guide for Health Care Providers
  4. Neeltje Vermunt et al. “Goal Setting Is Insufficiently Recognised as an Essential Part of Shared Decision-Making in the Complex Care of Older Patients: A Framework Analysis.” BMC Family Practice 20, no. 76 (June 2019), https://doi.org/10.1186/s12875-019-0966-z.
  5. Glyn Elwyn et al., “A Three-Talk Model for Shared Decision Making: Multistage Consultation Process,” BMJ 359 (November 2017): j4891, https://doi.org/10.1136/bmj.j4891.
  6. John Paling, “Strategies to Help Patients Understand Risks,” BMJ 327, no. 7417 (September 27): 745-748, https://doi.org/10.1136/bmj.327.7417.745.

Section 4: Further Reading and Additional Resources

SDM Implementation Resources
Advance Directives

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:

  • PREPARE for Your Care: https://prepareforyourcare.org/advance-directive
    PREPARE for Your Care is a resource provided by the Institute for Healthcare Advancement that helps individuals learn about Medical Decision Making, determine their wishes and prepare to make and discuss those decisions with their care team, family and friends. The website contains pamphlets and tools to assist people in decision making, as well as legally binding advance directives in both English and Spanish.
  • Five Wishes: https://fivewishes.org/
    Five Wishes, a resource by Aging with Dignity, is a legal advance directive, or living will, written in user-friendly language to assist individuals in thinking about and recording their end-of-life wishes. The resource is meant to help individuals consider all aspects of their potential end-of-life needs, including medical, personal, emotional and spiritual needs, and contemplate how they would like to discuss their wishes with family, friends and medical professionals.
  • Clarify Code Status: It is helpful to clarify with patients beforehand whether they would want everything done to prolong their life if their condition gets worse. AHRQ offers helpful case studies of speaking about code status with patients: https://psnet.ahrq.gov/web-mm/do-you-want-everything-done-clarifying-code-status.
COVID-19-Related Resources
Health Literacy, Health Insurance Literacy and Patient Communication