A guide to help people and their loved ones prepare for medical decision making. Name:
For more information about PREPARE visit www.prepareforyourcare.org Copyright The Regents of the University of California, 2013. All rights reserved. Terms of Use The PREPARE content is copyrighted and its use is subject to the License terms listed below. PREPARE can be used freely for personal, clinical, non-commercial, non-research, and not-for-profit purposes. It cannot be used for profit. PREPARE cannot be copied or distributed. PREPARE cannot be used by healthcare organizations or other non-profit organizations or agencies or for research purposes, including studies, grants, quality improvement projects, or any form of publication, without express permission from the author. Author: Rebecca Sudore, M.D. (info@prepareforyourcare.org ) Page 2
Step 1 Step 1: Choose a Medical Decision Maker Can you think of any family or friends who MAY be able to make medical decisions for you if you become too sick to make your own decisions? Yes or Maybe Write down the person s name: There is no one to choose right now When do you want someone to make medical decisions for you? I ONLY want someone to make medical decisions for me if I become too sick to make my own decisions. I want someone else to make medical decisions for me now, EVEN if I can make my own decisions. I am not sure. Page 3
Step 2 Step 2: How to Decide What Matters Most in Life These 5 Questions will help you decide what matters most in your life and for your medical care. Question 1. What is most important in your life? Family or friends Religion Hobbies Pets Living on my own Caring for myself Not being a burden on my loved ones Something else: Knowing what is most important in life can help you decide on the medical care that is right for you. Page 4
Step 2 Question 2. What experience have you had with serious illness? Have you had your own experience with serious illness? Do you remember someone close to you who was very sick or dying? Do you remember seeing someone on TV who was very sick or dying? Think about what went well, what did not go well, and why. If you were in these situations, what would you want for yourself? You may change your mind about how you feel over time. Question 3. Can you imagine situations that would be worse than death? I feel that life is always worth living no matter what serious illness, disability or pain I am experiencing. I feel there are certain health situations that would make my life not worth living, such as... Never being able to wake up from a coma or get out of bed. Never being able to talk to my family and friends. Never being able to live on my own. Having to be kept alive on machines. Being in pain. I am not sure. Page 5
Step 2 Question 4. How do you balance quality of life with medical care? Sometimes illness and the treatments used to try to help people live longer can cause pain, side effects, and the inability to care for yourself. If you had serious illness, what would be important to you? I want treatments to try to live as long as possible. I would not want to stop treatment even if I was in pain, could not feed or care for myself, or needed machines to live. I want to try treatments for a period of time, but I would not want to suffer. If after a period of time the treatments do not help or I am suffering, I would want to stop. I want to focus on my quality of life and being comfortable, even if it means having a shorter life. Question 5. Have you changed your mind about what is important? You may change your mind about how you feel over time. Make sure to tell your decision maker, family or friends, and doctor if you change your mind. Page 6
Step 3 Step 3: Choose How Much Flexibility to Give Your Medical Decision Maker How much flexibility do you want to give your decision maker? TOTAL FLEXIBILITY: It is OK for my decision maker to change any of my prior medical decisions if the doctors think it is best for me at that time. SOME FLEXIBILITY: It is OK for my decision maker to change some of my decisions. But, some decisions I never want changed, even if the doctors recommend it. NO FLEXIBILITY: My decision maker must follow all of my medical wishes exactly, no matter what. It is NOT OK to change my decisions, even if the doctors recommend it. I am not sure. Page 7
Step 4 Step 4: Tell Others About Your Wishes Do you have other close family and friends in your life who are NOT your decision maker. Yes No These people may have strong opinions about your medical care. Their opinions may differ from what you or your decision maker want. Who have you talked to about your wishes for medical care? My medical decision maker My doctor My family or friends You can mark as many as you want, or none. Page 8
Step 5 Step 5: Ask Doctors the Right Questions Check the box for how you feel: I prefer to make medical decisions on my own. I prefer to share decision making with my doctor. I prefer that my doctors make all my decisions for me. It is important to know that your doctor cannot make your decisions for you. Your doctors can only give you or your family or friends information to make decisions. If you had serious illness, would you want your doctor to tell you this information? Check the box for how you feel: I would want to know this information I would NOT want to know this information Page 9
Action Plan Your Action Plan What step do you feel ready to work on? Step 1: Choose a Medical Decision Maker Step 2: Decide What Matters Most in Life Step 3: Choose Flexibility for Your Decision Maker Step 4: Tell Others About Your Wishes Step 5: Ask Doctors the Right Questions My is Action Plan is Step. I will I will do my Action Plan by. Date Page 10