Care near the end of life can suddenly become complex and overwhelming, with no clear path as to what types of interventions (if any) are appropriate. There is only one person truly qualified to tell your health care providers how you feel about different issues—and that’s YOU.
Some people believe that doctors know best and therefore should make all the decisions. However, patients' values and goals are very important and should be the guiding force behind their care. Your health care providers have technical knowledge and years of experience, but without your help, they can't know what's best for you given your specific medical situation.
Two patients with the same condition can have very different ideas about what kind of treatment they want. Have you thought about what kinds of medical care you would choose if you couldn’t tell your providers what you wanted? Through advance care planning, you can help ensure that your wishes will guide future care.
The worksheets in this document will help you think about things, like:
If life-sustaining treatments were the only way to keep you alive, would you want your doctors to use them? For some people, the answer is “Of course.” For other people, the answer is “Never.” For others, the answer would depend on the situation.
Through advance care planning, you can help ensure that your wishes will guide your future health care.
about what you would want if you had to make difficult choices.
about your views with your spokesperson, loved ones, and health care providers.
a spokesperson who can speak for you if you can't speak for yourself.
an advance directive to document your preferences.
a personal letter or audio or video recording to share your wishes.
Carlos Ruiz has had severe heart disease for years. His doctor said, “Your heart is very weak, and it will keep getting weaker. Now we need to make some decisions about what you want for your care. One thing we could do is focus on supporting your heart, lungs, and other vital organs to extend your life for as long as possible. If you got sick, you would go to the hospital for treatment, possibly into the ICU (intensive care unit). If the treatment was successful, you would go home. But you would probably be weaker. The other thing we could do is make our top priority the relief of your shortness of breath and discomfort, even if it meant you might not live as long. Which of these options sounds right for you?
Mr. Ruiz said, “I’ve lived with this bad heart for a long time, but I’m not quite ready to give up. I’d like to try simple treatments, especially if I can receive them at home. I’d rather not leave my family and friends. I would prefer being comfortable at home. If you think going to the hospital would make a really big difference, I might consider it. But if going to the hospital only buys me a few extra days or weeks, I’d rather stay home, even if it means I don’t live as long.”
Mr. Ruiz’s doctor referred him to a nursing agency, and a nurse started visiting him at home. He got a few lung infections that made it hard for him to breathe, but they were cured by antibiotic pills that he took at home. Then he got another infection that didn’t get better, even though he was taking antibiotics. He had a high fever and was so sick that his wife had to decide what to do. His doctor and his nurse said that they could put him in the hospital to treat his infection. This would relieve his symptoms and might prolong his life, but he would be separated from many of his family members and friends. Or he could stay home and be treated for his pain and discomfort until he died from the infection.
Mrs. Ruiz sent him to the hospital because she thought he might get better and could return home for a little while longer.
If you were in this situation, would you have wanted to go to the hospital or stay home? Why?
A Durable Power of Attorney for Health Care document tells your health care providers who you want to make medical decisions for you if you get too sick to decide for yourself. It is included in most advance directive forms.
Do you want to appoint a spokesperson but aren't sure who that should be? The Choosing a Spokesperson worksheet can help you identify a competent adult who you feel would act upon your wishes.Start Worksheet
Use this worksheet to discuss your choices regarding what would be important to you at the very end of your life.
Use this worksheet to communicate your preferences for burial and funeral arrangements.
Use this worksheet to communicate your preferences regarding organ donation to others.
To appoint a spokesperson and complete an advance directive, choose a legal document in your state from the list below. (Please enable popups for this link to work.)
Share your wishes regarding life-sustaining medical treatments that would keep you alive for a period of time but would not cure you or make you better.Start Worksheet