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Leukemia

Participating in Shared Decision-Making

In shared decision-making, patients communicate their preferences and values to their healthcare team when treatment decisions are made. Patients who take an active role in the process tend to be more satisfied with their quality of care.
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In 2001, the Institute of Medicine, a nonprofit organization that provides health policy advice, suggested that the quality of cancer care improves when people who have been diagnosed with cancer share in decisions related to their treatment. Since that time, surveys of patients with cancer have shown that most patients prefer to play an active role in their treatment choices. Patients with cancer are less satisfied with the quality of their care when physicians determine their treatment without their input.

So, patients with cancer are happier with their care when they participate in decisions about their treatment. But how do you do this? Who should you talk with to make sure that your voice is heard as treatment choices are being made? Where can you find the information that you need to contribute effectively? It may seem daunting at first, but there are people and resources available to help you take an active role in your medical care as you begin the leukemia treatment process.

In addition to you, your caregiver(s), and your hematologist/oncologist(s), several other healthcare professionals, including your nurse practitioner, physician assistant, clinic nurse, nurse or patient navigator, social worker, and financial advocate, may all provide valuable input into treatment decisions based on their knowledge and experience in working with patients.

The hematologist/oncologist typically outlines and explains your treatment options and other clinical team members, such as the nurse practitioner, physician assistant, nurse, and navigator, will then follow up with you to further clarify this often-complex information. The information that you receive and discuss with your treatment team is likely to include the following:

  • Understanding your type of leukemia
  • Evaluating your overall health status and comorbidities
  • Discussing your treatment options
  • Discussing clinical trial participation as an option

There are also important non-medical considerations to consider when making treatment decisions. For example:

  • Are you working? As you begin the treatment process, a nurse navigator or social worker may help you prepare to discuss your leukemia diagnosis with your employer.
  • Do you have one or more caregivers? You may need transportation assistance to and from appointments, so it’s important to communicate your needs with your personal support team.
  • What other things are important to you? When speaking with your treatment team, tell them about the hobbies and activities that matter most to you, so they can recommend a treatment plan that minimizes the amount of disruption to your life. 

Everyone is different. Some patients are very proactive and have a ton of questions listed in their diary when they come into the office. They are ready for that dialogue with their doctors and nurses, and feel very comfortable with it. Although other patients are less comfortable with the idea of participating in treatment decisions, no one has a greater stake in their cancer care than you and your loved ones, so it is important to ask questions and participate in the process.

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Last modified: January 15, 2020

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