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Shared Decision Making

doctor with mother and child

Shared Decision Making

Shared Decision Making relies on mutual trust and understanding. The Patient and Family Advisors who have been working with Michigan's Pediatric Epilepsy Project recommend patients and families set the stage for partnership before the first visit by sharing key information about yourself or your child with your health care provider.

This information below is designed to improve communication between patients, families, and health providers. A downloadable PDF is also available: Patient and Family Guide to Shared Decision Making.

Picture of Shared Decision Making Guide

A Patient and Family Guide to Shared Decision Making

Taking care of special health care needs - for yourself or for a child - is a big job. Research has shown that the best health care outcomes happen when patients, their family members, and their providers work together to understand a patient's needs, consider what works best for each family situation, and make decisions together about treatment plans. This is called Shared Decision Making.

The Agency for Healthcare Research and Quality created the SHARE Approach to describe the provider role in Shared Decision Making. A group of parents and family members who have faced challenges dealing with special health care needs have modified the SHARE Approach to describe the role that patients and families play in Shared Decision Making.

The patients and family members who helped create this guide want you to know that you don't need to have all of the answers right now; you just need to know how to find the answers. Shared Decision Making means that health care providers, patients and families work together to choose the best treatment options, based on the provider's knowledge and experience, and the patient's and family's values and preferences. The role of patients and families might be the most important because, in the end, most health care happens at home and in communities.

This guide describes how you can use the SHARE Approach to improve communication with health care providers and make decisions that are best for you and your family. With Shared Decision Making, you are not alone.

5 Steps to Shared Decision-Making

  • SEEK To Participate

    Tell your provider you want to be involved in making decisions. Introduce yourself to a new provider by telling them what things you like to do and what is important to you. This will help your provider avoid making assumptions about you.
     
    Tips for seeking participation
    • Let your provider know you want to participate in making health care decisions.
    • Say, “I want to work with you on this.”
    • Share how you prefer to participate: Do you want paper or electronic copies of information? Do you use the patient portal or phone calls when you need advice?
    • Tell your provider which family members you would like to include in decision making.
    • Before your first appointment, send your provider a document that introduces yourself such as this Meet Me document.

     

     

  • HELP to Compare Treatments

    Many health care decisions have multiple treatment options, including the option of no treatment. Often there is no single option that is clearly better than the others. Ask your provider to explain the pros and cons of each treatment option, including what information is unknown and what would happen with no treatment. Repeat back to your provider what you heard about each treatment option and ask if what you heard is correct.
     
    Tips to help compare treatment options
    • Ask for information in plain language.
    • Keep a running list of questions. Ask as many questions as needed for you to feel like you fully understand the options.
    • Ask your provider, “What evidence do you have that this treatment will help?”
    • Ask if there are visual aids or decision tools to help compare the options.

  • ASSESS Your Values and Preferences

    Take time to think about what matters most to you: keeping pain under control? Being able to participate in a favorite activity or attend an upcoming event?

    Be honest about what will work for your family. Are family members willing and able to carry out treatment? Will medical equipment fit in the family home and vehicle? How will treatment options affect the day-to-day life of family members? Consider how each treatment option best matches your ability and what you prefer. Create a checklist to help identify which option comes closest to what you prefer.

    Tips for seeking participation:

    • Be honest with your provider about what matters most to you in choosing the best treatment option.
    • Be open about what can and cannot work in your family or home.
    • Check with your insurance plan about possible out-of-pocket costs.
    • If needed, check with school officials to make sure they are able to give medication or carry out other aspects of treatment.

    Think about aspects of day-to-day life that may be hard, such as childcare, shared custody, physical space at home and school, and parent work schedules.

  • REACH a Decision

    Find out the timeframe for making a decision. If possible, talk over your decision with trusted family and friends. 
     
    Decide together on the treatment option that best meets your values and what you prefer.
     
    Confirm your decision with your provider. Explain what you hope to gain from this treatment and why you think it’s the best option. Ask your provider if what you understand is correct.
     
    Tips for reaching a decision
    • Remember that patients and families have an important role in decision making. A recommendation is just that.
    • Ask for extra educational materials or decision tools.
    • Remind yourself that choices can be tough. Be open about your goals: Are you hoping for better quality of life or removing a problem?
    • Ask your provider what happens next: When will treatment begin? How long until benefits are seen?
    • What is the timeframe for follow-up visits?

  • EVALUATE Your Decision

    Agree on a “trial period” to see the impact of your treatment decision; at the end of that trial period, talk with your provider about whether to continue with that treatment option.
     
    Take notes on how well the treatment is working, including both medical and quality-of-life factors. Share this information with your provider at follow-up visits.
     
    Let your provider know if you have any problems with implementing your treatment decision.
     
    Tips for evaluating the decision
    • Ask about resources to support your treatment choices. Resources could include scholarships for activities, referrals to community agencies, mental health support, or connections to other families facing similar challenges.
    • Remember that mutual trust between patients, parents, and providers is the basis of a good working relationship. Be honest with your provider about what is and is not working.
    • In many cases, especially for the management of a chronic illness, treatment decisions can and should be revisited after a trial period.