A doctor and patient engage in shared decision making.

Why You Should Participate in Shared Decision-Making

Whether newly diagnosed, or you’ve been dealing with cancer for a while, it is important to be involved in all decisions related to your care. Fortunately, the days of doctors making choices without patient input are mostly in the past. Instead, most doctors now work with patients to make decisions together, called “shared decision-making.” These cooperative decisions blend the doctor’s clinical knowledge and experience with the patient’s values and preferences.

Why is it so important to participate in shared decision-making?

Research shows that patients who actively participate in decision-making are better informed and understand their care options better. Unsurprisingly, these patients tend to make better care decisions, choosing options they are more likely to adhere to.

Most importantly, this combination of informed choices, along with improved compliance with treatment regimens, improves the quality of care and lowers costs.

Who can benefit from shared decision-making?

Whether you are making treatment decisions in your doctor’s office, in the emergency room, or in a hospital, you can benefit from shared decision-making.

According to the Informed Medical Decisions Foundation, “shared decision-making is appropriate for any health decision where there is more than one medically reasonable option. And evidence shows that shared decision-making benefits all patients, regardless of age or education.”

Don’t let discomfort stop you from participating in shared decision-making.

Researchers found that although people have a “strong desire” to participate in decision-making, obstacles prevent patients from doing so.

The study identified some common reasons people are reluctant to speak up during a doctor’s visit:

  • Patients, even those who are well-educated and relatively affluent, feel they must defer to their doctors.
  • Doctors can be authoritarian – which can intimidate many patients.
  • Patients fear that doctors will label them as “difficult.”

Does your doctor include you in decision-making?

Certainly, doctors can, and should, foster shared decision-making. Doctors should understand they can be intimidating and should make every effort to put their patients at ease. Additionally, doctors should actively engage all patients in shared decision-making, even those who show reluctance.

Hopefully, you have a doctor who works with you to create a treatment plan. However, if your doctor ignores your concerns or opinions, it’s probably time for a new doctor who will respect your input and work with you collaboratively.

How can you participate in shared decision-making?

Since understanding your treatment options is critical to making a good decision, make sure you understand each option, including what is involved, the likelihood of success, and the potential side effects. Ask the following questions:

  1. What are all the available options? What are the advantages and disadvantages of each option?
  2. Are there any appropriate clinical trials available?
  3. Do other hospitals or doctors have different options?
  4. How long is the course of treatment?
  5. What are the expected results?
  6. What are the possible short-term and long-term side effects? How disruptive will the treatment be in my day-to-day life?
  7. How will we know if the treatment is working?
  8. What if we do nothing and “wait and see”?


Once you’ve received answers to the questions above, consider the following factors when making a treatment decision:

  1. Expected outcome.
  2. Type and length of treatment.
  3. Success of treatment in similar patients.
  4. Possible side effects and the potential impact on your life.
  5. Your likelihood of complying with treatment requirements.
  6. Location of treatment.
  7. Insurance coverage, or expected cost, for proposed treatment.

A few final thoughts.

Never feel afraid to get a second, or even third, opinion – you will not be insulting your doctor! And, throughout your cancer journey, if something doesn’t seem right, speak up!

Roberta Carson started Zaggo, a nonprofit organization, to help patients and family caregivers manage illnesses and injuries, after her experience as caregiver for her teenage son Zachary during his battle with terminal brain cancer.  The unique, award-winning ZaggoCare System provides patients and families with the educational information, tools, and resources they need to become empowered, engaged, effective members of their medical teams for the best possible care. Additionally, the Zaggo blog offers helpful advice for patient and family caregivers. 100% of the profits from the sale of ZaggoCare are donated to pediatric brain tumor research in memory of Zachary.

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About Triage Cancer

Triage Cancer is a national, nonprofit providing free education to people diagnosed with cancer, advocates, caregivers, and health care professionals on cancer-related legal and practical issues. Through eventsmaterials, and resources, Triage Cancer is dedicated to helping people move beyond diagnosis.

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