Tips for Discussing Your Diagnosis with Your Doctor
By Andrew Esch, MD
When you are diagnosed with a serious illness, it’s normal for you and your family to have a lot of questions. You may need help understanding the illness, treatment options and what the future holds. You may have concerns that you don’t know how to put into words yet. It can be very hard to think clearly, and even the best doctors don’t always explain things well.
Here are four simple questions that can help you talk to your doctor about your illness. Try to write down what your doctor says, or ask a family member to take notes. You’ll probably have more questions when you get home; write those down too and bring them to your next visit.
Can you tell me that again?
Doctors often believe they have explained a diagnosis clearly, while the patient hasn’t understood the information or only partly understood. It’s completely normal not to take it all in the first time you hear it. You can and should ask your doctor to tell you again – and ask him or her to explain it in a different way. You may also find it helpful to repeat back what you heard in your own words. That way your doctor will know for sure if you have understood.
What do we do next?
There are often good treatments that can cure diseases or slow them down and your doctor can tell you about them. Ask your doctor to explain the plan step by step. Ask what the different treatment options involve, including possible side effects. Find out when you should see the doctor next and what tests need to be done before the next visit.
How serious is this?
Not everyone wants to know the answer to this question, so many doctors will not offer this information unless you ask for it. If you are accompanying a family member who is learning about their own diagnosis, be careful to check with your loved one how much they want to know before you ask this question.
What else should I ask you at this point?
This open-ended question will let your doctor explain anything that you might not have thought of.
If you need more in-depth communication than you are getting from your doctor, or you begin to suffer from unmanageable symptoms, side effects or stress, palliative care can help.
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with serious illness. This type of care focuses on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Communication is at the heart of palliative care. Your palliative care team will take the time to help you and your family understand your illness and what the future holds. They will get to know you and learn about your goals, and they will help you make informed decisions about your treatment options. They will also talk to all your other doctors to help coordinate your care and communicate your decisions, so that everyone is on the same page.
Palliative care is available in most hospitals and it is growing quickly in outpatient clinics. In some areas, palliative care teams are available for home visits. Ask your doctor about a palliative care referral. You can also look for palliative care resources in this Provider Directory. To learn more about palliative care, visit GetPalliativeCare.org, an online resource that provides clear, comprehensive palliative care information for people coping with serious illness. The site is provided by the Center to Advance Palliative Care (CAPC).
Dr. Esch is medical education consultant to the Center to Advance Palliative Care. A palliative care specialist, Dr. Esch focuses on improving quality of life for patients and their families as they face serious illness. Dr. Esch earned his medical degree from the University of Buffalo.