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About Shared Decision Making

Shared Decision Making

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.

Treatment Options

Treatment Options

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.

Palliative Care Options for Seriously Ill Patients

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.

Shared Decision Making for Older Adults and Caregivers and Care Partners

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.

Learn More:
FH Total Treatment Cost
Managing Costs of Chronic Conditions

Select a Treatment

Patient Resources

  • Links to Insurance Basics articles on relevant topics such as dental coverage for retirees, telehealth and healthcare costs for different facilities (e.g., medical office, hospital and ambulatory care center)
  • Caregiver support groups, mental health information and resources for those with disabilities
  • Links to palliative care and serious illness resources

Shared decision-making tools

Tools, Checklists and Articles

(e.g., provider and patient checklists pertaining to shared decision making and healthcare navigation)

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. While time has been cited as a provider concern, encounter times have not been shown to take longer when shared decision making is conducted.
  • 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.
  • 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 were designed 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.
  • FAIR Health also offers shared decision-making tools for preference-sensitive conditions, such as uterine fibroids, type 2 diabetes and slow-growing prostate cancer—conditions that most commonly affect patients of color.

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.

Option Grid™ Decision Aids for Seriously Ill Patients
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. 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.
Option GridTM Decision Aids for Conditions that Affect Patients of Color
In spring 2022, with a generous grant from the New York State Health Foundation, FAIR Health expanded its offerings of SDM tools for non-palliative care scenarios related to conditions that more commonly affect patients of color. These tools can be found on the FAIR Health Consumer Website Shared Decision-Making feature and on this website here.
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 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]

    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 provider-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. 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]

Shared Decision Making, Costs and Financial Toxicity
Shared decision making shows promise for reducing unnecessary spending[22] and healthcare costs[23] and for improving decision making without having an adverse effect on clinical outcomes.[24] This is especially important considering the growing issue of “financial toxicity”—the financial, emotional and mental burden patients experience with medical costs, which can lead to diminished access to care and a reduced quality of life.[25] Such costs have 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, as had 41 percent of insured patients. However, 53 percent of insured patients reported emotional hardship because of possible unknown treatment costs.[26] 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.[27] Research suggests that open conversations about treatment costs strengthened trust between provider and patient and decreased noncompliance with treatment plans due to financial distress.[28] 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.[29]
COVID-19
The COVID-19 pandemic underscored the importance of shared decision making, especially regarding ventilator use.[30],[31] 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.[32]
Preference-Sensitive Conditions and Chronic Conditions
In addition to its efficacy in scenarios pertaining to serious illnesses, shared decision making has been shown to be effective for certain preference-sensitive conditions—those “for which the clinical evidence does not clearly support one treatment option and the appropriate course of treatment depends on the values or preferences of the patient regarding the benefits, harms and scientific evidence for each treatment.” [33]A shared decision-making study from 2013 found that, of a group of patients with such conditions who were followed over a year, those with enhanced support from their physicians and other health experts had 5.3 percent lower overall medical costs, 12.5 percent fewer hospital admissions and 9.9 percent fewer preference-sensitive surgeries.[34]
Patients with chronic conditions may face challenges in managing their chronic diseases, and as such, may especially benefit from shared decision-making conversations while managing their conditions. Patients may minimize the impact of their condition on their lives, and their symptoms may not directly affect their daily activities.[35] Because action plans for managing chronic conditions may vary based on patients’ preferences, and because shared decision making may enhance self-efficacy, discussions that involve shared decision making may be an important determinant for engaging patients in their health decisions and enabling them to better manage their chronic conditions.[36],[37] In the context of chronic disease management, shared decision making may not be a one-time discussion, but rather a longer-term conversation over the course of a disease. A systematic review of 50 shared decision-making studies revealed overall patient satisfaction, reduced costs and positive results in behavioral measures (such as reaching a decision).[38],[39],[40] With shared decision making, especially concerning chronic conditions, patients may have more understanding of risks and benefits and less decisional conflict.[41]
Advancing Shared Decision Making among Patients of Color—An Initiative Funded by the New York State Health Foundation
Patients of color experience less focused care, less empathy and poorer outcomes, and report perceived discrimination in healthcare settings due to race, ethnicity or English proficiency.[42] In addition, Blacks or African Americans have reported disrespect and discrimination in healthcare[43] and distrust of providers.[44] Shared decision making shows promise for engaging patients of color in their healthcare decisions, promoting communication between patients of color and their providers and building more trust in providers by patients of color.
A systematic review showed that using decision aids (DAs) improved communication between providers and minority patients and decision quality outcomes, e.g., decision satisfaction.[45] Decision support via telephone about prostate cancer for Black, predominantly immigrant men led to less conflict in decision making, greater likelihood of speaking with a provider about testing and greater knowledge about prostate cancer.[45] After a study of clinical outcomes for uterine fibroid treatments,[46] the Patient-Centered Outcomes Research Institute (PCORI) is conducting a follow-up study to measure the use of DAs in decision making among patients with uterine fibroids.[47] Since no statistical difference in outcomes between the treatment methods was found, PCORI intends to promote shared decision making as part of routine care for patients with fibroids because it allows patients to choose a treatment option that aligns with their preferences.
Research suggests that patients of color may not experience shared decision making with their providers as frequently as white patients.[48] To help address this, FAIR Health, in collaboration with Dr. Chima Ndumele, an associate professor of health policy at the Yale School of Public Health and a faculty associate at the Institute for Social and Policy Studies at Yale University, undertook an initiative to advance shared decision making in clinical areas relevant to patients of color, including African Americans and other minority populations, in New York State. As a result, this website offers Option GridTM decision aids with added FAIR Health cost data that pertain to conditions that most affect patients of color: uterine fibroids, slow-growing prostate cancer and type 2 diabetes. Conditions for which tools would be offered were selected following feedback sessions with patients and public health experts.
References

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). 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.

Key Aspects of Shared Decision-Making

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]
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/or caregiver can make a decision that accounts for the patient’s goals. Elicit the patient’s goals[53] 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.[54] When caregivers and family members are involved, “triadic decision making” may be a valuable approach. Involving the healthcare team, caregiver and patient,[55] it helps assure that all sides are heard, as preferences of older patients and their caregivers may differ.[56]

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.[57] Caregivers may naturally take on a more involved decision-making role when a patient is cognitively impaired.[58] 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.[59]

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.
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.[[52] You also may discuss the costs of the options when the information is available and if the patient and/or 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.
References

Section 3: Using Shared Decision-Making Tools

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.





Shared Decision Making - Palliative Care Toolkit

Reference this toolkit – download and print a copy.

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.
RESOURCES
Communicating Numbers to Your Patients: A Reference Guide for Health Care Providers
Shared Decision Making Tools on the FAIR Health Consumer website.
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.
RESOURCES
Using the Teach-Back Technique: A Reference Guide for Health Care Providers
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.

Shared Decision Making - Uterine Fibroids Toolkit

Reference this toolkit – download and print a copy.

Before Your Appointment/Discussion: Think about What Matters to You and Write it Down

  • What would you like to ask and know about uterine fibroids and treatment options?
  • What matters most to you in life? What are your goals for treatment—for example, to manage symptoms or to be able to do things you are currently unable to do? Think about your goals for treatment, what matters to you. A clinician (e.g., nurse or primary care provider) may also be able to help you discuss your goals and wishes.
  • Is cost an important part of your decision?
  • Refer to recommended resources.

During Your Appointment/Discussion: Ask Questions; Express Your Goals and What Matters to You

Take notes that you can refer to later and/or ask a family member or caregiver to join/attend and take notes.

  • I would like to make this decision together with you based on my goals and what matters most to me and on your expertise.
    What I would like most from life is…
    What matters most to me is…
    What I am most afraid of is…
    Are there decision tools we can use to make this decision together? How can I learn more about my condition and my options?
  • What are my options for treatment?
  • What are the benefits of the options?
  • What are the risks to me if I choose this option?
  • What if I don’t want to do anything?
  • What are the costs associated with each of the options? Whom can I speak with to learn more about the treatments and how I can pay for them?
  • For my specific goals and condition, what would be my best options?
  • For specific treatment options, do I have to adhere to certain rules or procedures?
  • I don’t understand. Can you explain this to me a different way?
  • Can I contact you with questions?
  • Can you give this information to me in writing?
  • What are the next steps?

After Your Appointment

  • Keep the notes in a handy place so that you can refer to them later.
  • If you are unclear on next steps, ask!
  • If you need more time to make a decision, let your healthcare team (and caregiver if applicable) know.

Shared Decision Making - Slow-growing Prostate Cancer Toolkit

Reference this toolkit – download and print a copy.

Before Your Appointment/Discussion: Think about What Matters to You and Write it Down

  • What would you like to ask and know about your condition and treatment options?
  • What matters most to you in life? What are your goals for treatment? Think about your goals for treatment, what matters to you. A clinician (e.g., nurse or primary care provider) may also be able to help you discuss your goals and wishes.
  • Is cost an important part of your decision?
  • If a caregiver or family member is involved in your care, does he or she know your goals and wishes? If not, discuss them.
  • What are you comfortable doing to manage your condition?
  • What don’t you like about your current treatment (if applicable)?
  • Do you have coexisting conditions (e.g., heart disease, metabolic illness, mental health conditions, musculoskeletal conditions) your provider should know about when it comes to treatment?

During Your Appointment/Discussion: Ask Questions; Express Your Goals and What Matters to You

Take notes that you can refer to later and/or ask a family member or caregiver to join/attend and take notes.

  • I would like to make this decision together with you based on my goals and what matters most to me and on your expertise.
    What I would like most from life is…
    What matters most to me is…
    What I am most afraid of is…
    Are there decision tools we can use to make this decision together? How can I learn more about my condition and my options?
  • Will these treatments cure my disease or manage it?
  • What are the benefits of each option?
  • What are the risks if I choose this option?
  • What are the potential side effects of each treatment option?
  • What might I have to change about my lifestyle if I choose any of these treatment options?
  • What sort of time commitment will each of these treatments require? How often will I have to come in for tests and/or procedures?
  • Am I eligible for nonsurgical procedures? What are they?
  • If I choose to do chemotherapy, how long will it take to complete treatment?
  • If I have surgery, how will it affect my life?
  • If I have surgery, how soon will I be able to return to work?
  • What is the healing process like after surgery?
  • If a family member also had cancer, does that affect my prognosis?
  • What is my prognosis with each of these options?
  • What if I don’t want to do anything?
  • What are the costs associated with each of the options? Whom can I speak with to learn more about the treatments and how I can pay for them?
  • For my specific condition, what would be my best options?
  • Are there support groups I can join for people with prostate cancer?
  • I don’t understand. Can you explain this to me a different way?
  • Can I contact you with questions?
  • Can you give this information to me in writing?
  • Is my decision between treatment options time-sensitive, or can I wait and think it over?
  • What are the next steps?

After Your Appointment

  • Keep the notes in a handy place so that you can refer to them later.
  • Do you want to seek a second opinion to confirm your diagnosis?
  • Consider what your provider said, and how each option would affect your life.
  • If cost is a concern, are there assistance programs that might be able to help?
  • If you are unclear on next steps, ask!
  • If you need more time to make a decision, let your healthcare team (and caregiver if applicable) know.

Shared Decision Making - Type 2 Diabetes Toolkit

Reference this toolkit – download and print a copy.

Before Your Appointment/Discussion: Think about What Matters to You and Write it Down

  • What would you like to ask and know about your condition and treatment options?
  • What matters most to you in life? What are your goals for treatment? Think about your goals for treatment, what matters to you. A clinician (e.g., nurse or primary care provider) may also be able to help you discuss your goals and wishes.
  • Is cost an important part of your decision?
  • If a caregiver or family member is involved in your care, does he or she know your goals and wishes? If not, discuss them.
  • What are you comfortable doing to manage your condition?
  • What don’t you like about your current treatment (if applicable)?
  • Are there limitations (such as mobility) your doctor should know about when it comes to implementing lifestyle habits such as exercise?

During Your Appointment/Discussion: Ask Questions; Express Your Goals and What Matters to You

Ask a family member or caregiver to join/attend and take notes that you can refer to later.

  • I would like to make this decision together with you based on my goals and what matters most to me and on your expertise.
    What I would like most from life is…
    What matters most to me is…
    What I am most afraid of is…
    Are there decision tools we can use to make this decision together? How can I learn more about my condition and my options?
  • Will these treatments cure my problem, or just manage it?
  • What are the benefits of each option?
  • What are the risks to me if I choose this option?
  • What will I have to change about my lifestyle if I choose each of these treatment options?
  • What sort of time commitment will each of these treatments require? How often will I have to come in for tests and/or procedures?
  • What if I don’t want to do anything?
  • What are the costs associated with each of the options? Whom can I speak with to learn more about the treatments and how I can pay for them?
  • For my specific goals and condition, what would be my best options?
  • Are there lifestyle habits that you recommend (nutritional changes, exercise)?
  • Is exercise good for my condition? How can I still exercise if I don’t have time/money for a gym or if my joints hurt?
  • How much exercise is “enough” to reduce symptoms?
  • Will my insurance pay for or subsidize a gym membership?
  • Can I use a gym safely even with COVID-19?
  • How often do I need to take insulin? How much insulin do I need to take per dose? Where can I buy insulin? How much does insulin cost?
  • Are there any less invasive ways to administer insulin?
  • Are there any other medications that help treat diabetes other than/instead of insulin?
  • Are there support groups I can join for people with diabetes?
  • I don’t understand. Can you explain this to me a different way?
  • Can I contact you with questions?
  • Can you give this information to me in writing?
  • Is my decision between treatment options time-sensitive, or can I wait and think it over?
  • What are the next steps?

After Your Appointment

  • Keep the notes in a handy place so that you can refer to them later.
  • Consider what your provider said, and how each option would affect your life.
  • Are the lifestyle changes or treatment options ones you can commit to?
  • If cost is a concern, are there assistance programs that might be able to help?
  • If you are unclear on next steps, ask!
  • If you need more time to make a decision, let your healthcare team (and caregiver if applicable) know.

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

Resources for Preference-Sensitive Conditions

Type 2 Diabetes Resources
  • Patient checklist
  • The Centers for Disease Control and Prevention (CDC) offers comprehensive resources about diabetes, treatment, education, support and more. The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) helps people and communities prevent chronic disease and promotes health and wellness for all.
  • Diabetes Type 2 Today offers a wealth of information about risk factors, prevention and how to live with type 2 diabetes.
  • The American Diabetes Association (ADA), which is dedicated to preventing, curing and managing diabetes, offers resources for anyone who might be affected by diabetes, including women, men, seniors and children. The ADA’s website offer links to medication assistance programs and advice for healthy living.
  • The American Heart Association, the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke, offers specific information and tools regarding how type 2 diabetes can increase the risk of heart disease and stroke.
Diabetes Support Groups
Uterine Fibroids Resources
  • Patient checklist
  • Healthy Women is a nonprofit whose mission is to educate women to make informed health choices through fact-based, expert-sourced content, and creative evidence-based programming. The website offers resources related to managing uterine fibroids.
  • This blog from Johns Hopkins Medicine also has more information surrounding the symptoms of fibroids, treatment, diagnosis and more. The mission of Johns Hopkins Medicine is to improve the health of the community and the world by setting the standard of excellence in medical education, research and clinical care.
  • This Mayo Clinic article on uterine fibroids has information about the symptoms and treatment of fibroids. The Mayo Clinic is a nonprofit organization, which provides information and tools for a healthy lifestyle.
  • The New York State Department of Health has a page on uterine fibroids, which details what happens with fibroids during pregnancy, as well as current and developing treatments for fibroids.
  • The National Institutes of Health (NIH) has a list with find-a-provider resources. The NIH is the part of the Department of Health & Human Services (HHS) that is the nation’s medical research agency, making important discoveries that improve health and save lives.
  • MedLine Plus provides information about treatments and therapies for fibroids. MedlinePlus is a service of the National Library of Medicine (NLM), the world's largest medical library, which is part of the NIH. MedLine Plus’s mission is to present high-quality, relevant health and wellness information that is trusted, easy to understand, and free of advertising.
Slow-Growing Prostate Cancer Resources
Additional information on prostate cancer:
  • This article on prostate cancer from St. Luke's Health has more information about diagnostic criteria and symptoms as well as other helpful resources.
  • This book delves deeper into the science behind prostate cancer and how it’s treated.
  • CancerCare provides free professional support services, including resources specifically regarding prostate cancer. Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer.
  • ZERO Cancer is a national nonprofit with the mission to end prostate cancer. ZERO Cancer advances research, improves the lives of men and families and inspires action. ZERO Cancer’s website contains toolkits, webinars, fact sheets and more for the newly diagnosed.