Our healthcare system is complex, to say the least. As a patient with cancer, you will interact with many healthcare professionals, and sometimes you will need to make sense of conflicting information. You may need to go to a number of different clinics and possibly even to several healthcare facilities. Although it may seem trivial during a time of great change and distress, being organized can be one of the most effective strategies to get the care you deserve.
Prepare for Appointments
Cancer treatment requires a lot of appointments. Staying organized, showing up on time, and knowing what is expected of you as a patient are your responsibilities. Healthcare teams see dozens of patients each day, and although you are important and deserve individualized care, that does not mean you can show up late or unprepared.
It is your responsibility to show up for your appointments. If something unavoidable comes up that requires you to miss your scheduled appointment, it is your responsibility to let your doctor know right away, and to reschedule as soon as possible to ensure that you have the best health outcome possible.
If you are finding it challenging to keep track of your schedule or get to the doctor, let your healthcare team know, and work together to find solutions.
Create a Checklist
Checklists are a simple way to stay organized. In fact, surgeons are famous for relying on them to ensure smooth procedures. Likewise, when you have an appointment, create and review your checklist. Do you have your driver’s license or other identification card, insurance card, credit card, flexible spending card, healthcare history, preauthorizations, prescription list, test results, and any other items you need to ensure that you make the best use of your limited time at the clinic?
Assess Your Unique Needs
Do you feel the demands of life make it hard to get through your treatment? You might benefit from the services of a patient navigator or a social worker. Is the medical terminology overwhelming, or is English your second language? Did you know you have a right to language assistance?
Do you have a disability that complicates your needs? Be open and honest about what you are facing, and ask your healthcare team for help. They are there to help you get the care you need.
Recognize When You Need Help
Cancer treatment can be physically and emotionally exhausting. Many patients find it very helpful to have a loved one attend appointments with them to help them remember everything the doctor says.
If you need support and your loved ones cannot come with you, ask if a patient navigator or social worker can come to your appointment with you. This person can serve as an important support person and can help you make sense of your interactions with physicians. It can be challenging to remember everything that your healthcare providers tell you at appointments. You or your support person should take notes.
If a loved one, a navigator, or another team member cannot come with you to your appointment, ask your provider if you can record your discussion on your smartphone or an audio recorder.
Assess Your Interactions with Providers
Do you feel you are being heard? Are you getting the information you need? Do you have unanswered questions? Although we all get home and think of questions we should have asked, making a list of questions before the appointment, being present at your appointment—which means listening and asking questions during the appointment—and taking notes can limit these missed opportunities.
Information about your cancer and your treatment is a lot to understand and follow, so make sure you clarify what you need to make the best decisions about your care.
Remember That Your Health Is Your Responsibility
Although your healthcare team is your partner in care, it is ultimately your responsibility to keep track of your health history, understand your finances and pay your bills, make decisions about your care, and get to and through your treatment.
Ask for help when you need it. You can be the biggest champion for your health and well-being by being a prepared and engaged patient who works with your healthcare team to ensure you get the best care and the best outcome possible.
For daily information on being an engaged patient, follow us on Twitter @PreparedPatient.
Center for Advancing Health
Memorial Sloan Kettering