Shared Decision Making for Caregivers

Shared decision making is an approach to health care that accounts for a patient’s values and goals when choosing a cancer treatment. This fact sheet will cover:

• The definition of shared decision making
• The benefits of shared decision making
• Ways to help as a caregiver
• How to discuss shared decision making with your provider

What Is Shared Decision Making?

Shared decision making is when patients work with any providers and caregivers to make treatment choices that meet their goals and values. These can include considerations about quality of life, ability to work, and personal beliefs.

This is different from the traditional approach where doctors often made decisions without much information from their patients. In addition to the person and their doctor, others can play a role in shared decision making, including other members of their health care team and other loved ones, including you.

What Are the Benefits of Shared Decision Making?

Shared decision making can help your loved one feel more confident in their choices and priorities. When there is more than one treatment to choose from, the patient can use their personal values to help them choose the treatment that most aligns with what they want. These values can include, but are not limited to:

• Choosing comfort and less pain versus continuing treatment
• The need to go back to work
• Cost of treatment, including medical co-payments
• Any possible changes in fertility
• The cultural value of changes to their body, such as losing hair or need for reconstruction

As a caregiver, you can make sure that your loved one’s wishes are a core part of any decisions made.

How You Can Help as a Caregiver

Your role as a caregiver can be very important as you help:

• Tell their story. You can help your loved one identify the things that are most important to them.
• Provide your own experiences. You can share events in your own life, if they give perspective to what they are going through.
• Advocate for them. You can attend appointments to support your loved one’s priorities and desires.
• Give emotional support. You can help your loved one deal with many strong emotions.

If you or your loved one look for additional information on their diagnosis and treatment, make sure you use only reliable and trustworthy websites. Ask your loved one’s provider for which websites to use.

Remember, all treatment decisions are for your loved one to make for themselves. As much as you share your experience and emotions, every decision they make must be their own.

How to Engage in Shared Decision Making

Although not every doctor practices shared decision making, the world of cancer care is changing. Open communication with your loved one about their treatment preferences will lead to further trust, sticking with treatment, and better quality of life. Below are some ideas for how to engage in shared decision making.

• Set up a time to have a thorough, honest discussion with your loved one.
• Advocate for your loved one with their medical team.
• Recognize what is not clear or understood and ask never be afraid to ask questions
• Write down each treatment option as well as pros and cons of each option.
• Support your loved one throughout the decision-making process.