❦ HOW DO I TALK WITH MY DOCTOR ABOUT DISEASE MANAGEMENT? 1. Serious Illness Conversation Guide is a guide used by doctors when they have conversations with you about your illness and how it is managed. Referring to it will help you gain an understanding of your doctor’s ap- proach to helping you face your illness, learn what to expect going forward, and identify your health care goals.



“I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want — is this okay? ”

1. Set up the conversation • Introduce purpose • Prepare for future decisions • Ask permission

2. Assess understanding and preferences

“What is your understanding now of where you are with your illness?” “How much information about what is likely to be ahead with your illness would you like from me?” “I want to share with you my understanding of where things are with your illness...” Uncertain: “It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I’m worried that you could get sick quickly, and I think it is important to prepare for that possibility.” OR Time: “I wish we were not in this situation, but I am worried that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).” OR Function: “I hope that this is not the case, but I’m worried that this may be as strong as you will feel, and things are likely to get more difficult.” “What are your most important goals if your health situation worsens?” “What are your biggest fears and worries about the future with your health?” “What gives you strength as you think about the future with your illness?” “What abilities are so critical to your life that you can’t imagine living without them?” “If you become sicker, how much are you willing to go through for the Possibility of gaining more time?” “How much does your family know about your priorities and wishes?” “I’ve heard you say that ___ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you.” “How does this plan seem to you?” “I will do everything I can to help you through this.”

3. Share prognosis • Share prognosis • Frame as a “wish…worry”, “hope...worry” statement • Allow silence, explore emotion

4. Explore key topics • Goals • Fears and worries • Sources of strength • Critical abilities • Tradeoffs • Family

5. Close the conversation • Summarize • Make a recommendation

• Check in with patient • Affirm commitment

6. Document your conversation

7. Communicate with key clinicians

• Focus of care is on you and your family and your needs • Your responses may change with time, but the key is to keep the dialogue open and focused on your needs


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