How do I begin?

• Know that this will not be one conversation but the first of many.

• Start by asking exactly what you are dealing with. What is the name? Ask for plain language. It's OK to ask your provider to repeat things. Write them down or use your phone to record.

• Language is important - if you need an interpreter, ask someone to come with you or request interpretation at your appointment. 

Is your provider sure this is your diagnosis, could it be anything else?

Are there other tests that you're going to need to take to get further information?

Should you get a second opinion?

Is this illness curable or manageable? How does it progress? How will you know if things are going better? If things are worse?

You want to know your treatment options. What will care look like? What are the risks? What are the benefits? What does your provider recommend? What if you do nothing? When do you have to decide how you're going to move forward? How often will you need to come in? How often will you need to have labs?

 What are the side effects of the medications being recommended? What is your daily life going to look like? Will you be able to do your usual activities?

Are there resources, such as support groups, organizations – local or online -or people you can speak with - social worker, therapist, Palliative care team?

Who will help me navigate this system? Who can I call with questions?

What’s next?

This is an exhaustive list of questions that you will not likely get through in your first visit but in Palliative care discussions, this fuller conversation is very common. It is important to know that the questions you might have are not dumb. When you are advocating for yourself, you always have the option of asking questions.

You are also developing a relationship with a provider. The more trust you feel with your provider, the more confident you are as you move through treatment.

“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: what is your understanding of this situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you're willing to make and not willing to make? And what is the course of action that best serves this understanding?”   
— Dr. Atul Gawande