Living with a chronic or significant medical condition is not easy. But making sure your values, goals and wishes are reflected in your care can ease some of the burden. 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.
Every patient is different. 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.
about what you would want if you had to make difficult choice.
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.
Dad’s health had been declining for years. He had been a heavy smoker and had a lot of trouble catching his breath. He needed to wear oxygen all the time. His doctors called his condition chronic obstructive pulmonary disease, or COPD. Recently, he developed severe pneumonia. It got worse and caused an infection in his bloodstream. As a result, he needed a breathing machine and medicines to keep his blood pressure normal. He was so sick he couldn’t communicate for himself. Then he slipped into a coma. This continued for three weeks.
The doctors told us that Dad’s COPD was so severe he would eventually die from it. But they didn’t know when that might happen. They said that patients who are very sick like Dad could get better for a while and then get sick again. The fact that Dad was so sick meant that this time might be his last. Also, if he got well enough to leave the hospital, he would probably be in worse shape than before. He would have even more trouble breathing and might even have some permanent brain damage. The doctors asked us whether Dad would want to stay on the breathing machine or to be taken off the machine, which would mean he would die.
I felt terrible. I didn’t think Dad would want to be kept alive like this. But I knew Mom would feel guilty for the rest of her life if we told the doctors to stop the machine while there was still even the slightest hope. We weren’t sure what we should do because Dad had never told us what he would have wanted. I really wish we’d talked about this before
Flora Parks woke up one day and couldn’t move her left arm. Her vision was blurred and she was having a hard time talking. Al, her husband of 50 years, called Mrs. Parks’ doctor. The doctor thought Mrs. Parks had had a stroke and told Al to take his wife to the hospital. After a long day of tests, the hospital doctors agreed it was a stroke.
Mrs. Parks’ stroke was caused by a blocked blood vessel. The doctors started her on medication and rehabilitation therapy. After a few more days, her sight improved, and she was talking clearly again. After two months, she could move her arm, but it was still a little clumsy and weak. Her physical therapist taught her how to make the most of her weak arm. She adjusted to her new situation, but she worried constantly about what would happen if she had a more serious stroke.
She talked about this with Al and their children. She said,
“This stroke has made me think long and hard about what’s important to me. The doctor said that even with my medications, I could have another stroke. If this happens, I might not be able to tell you what I want. So, I’m telling you now. I love life and don’t want to give up. That’s why I’d be willing to go to the hospital and start rehab again to see whether I can get better. But if I get to a point where I’ll never be able to communicate with you, then I don’t want anything done to prolong my life. That means no CPR if my heart stops and no machines. My biggest concern is that I won’t be able to talk with you or enjoy your company. So if that happens, I’d rather let my illness take its course than risk suffering a prolonged decline.”
“I understand how you feel,” Al replied, “but I think you’re only looking at the negative. Let’s think about what the children, the doctors, and I could do to make your quality of life as good as it could be, if another stroke does happen.”
If you were you in Mrs. Parks’ situation, how would you feel about your husband’s reply?
Are there things you would want your loved ones to do to improve your quality of life if you suffered a severe stroke?
Would they know what things are most important to you?
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
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.)
To include your preferences about the use of life-sustaining treatments in an advance directiveStart Worksheet