Patient Education: How to Stay Informed Following a Serious Illness Diagnosis

Make Your Wishes Known.
Your job is not to come up with a list of treatment options – that is your doctor’s job. Your role is to help your doctor understand what matters most to you. Then your doctor can discuss your options in the context of your situation and wishes. You can make the decision that is right for you. 

Know Your Audience.
You might feel unsure about when to ask your questions, or who to ask. You will probably be cared for by a multidisciplinary team. This is a group of different health care professionals who work together to coordinate your treatment and care. You might be seen by some of the people listed below and you can ask them questions.

• A physician, nurse practitioner or physician assistant (PA) specializing in your particular condition, such as cancer, lung or heart disease
• A nurse or specialty nurse like a chemotherapy nurse
• A surgeon
• A radiologist, who specializes in X-rays and scans
• Palliative care professionals to help you develop your personal goals of care and manage pain and other symptoms
• Your primary care physician 
• Psychologists or counselors
• Social workers
• A nutritionist or dietician
• Occupational therapists or physiotherapists

Tips for Talking to Your Health Care Team:

• You may be overwhelmed with your diagnosis at first. Ask for a follow-up appointment when your head clears.
• Make a list of questions beforehand and take notes during the appointment.
• It’s OK to say you don’t understand and ask for something to be explained in a different way. 
• Stop the conversation if you feel it is going too fast.

Questions to Ask about Your Diagnosis:

• What does my diagnosis mean and what can I expect?
• What is my outlook for the future, as you see it?
• How was my diagnosis made?
• Might my diagnosis change?
• How advanced is my illness?
• What are the symptoms I am likely to experience, both now and as my illness progresses?

Questions to Ask About Your Treatment:

•  Are there any ways to treat my illness?
•  Do I need more than one sort of treatment?
•  What are my treatment options? Can you explain the benefits and things I should consider for each one?
• Is my decision urgent or can I take more time to think about it? What will happen if the treatment is delayed?
•  What will the treatment be like? How long will it take? 
• How will the treatment make me feel? How will it affect my quality of life? What are all the side-effects?
• Where will I have this treatment? Will it be in the hospital? How long will I be there?