Twenty years ago Congress passed the Federal Patient Self-Determination Act. One of the reasons for this act was to encourage Americans to prepare an advance directive. This document allows a person to communicate their wishes about how they want to be treated if they become unable to make medical decisions for themselves. Unfortunately most Americans have failed to take advantage of this right.
"The facts are that less than 20 percent of Americans have an advance directive in place. Of those who do have an advance directive, up to 75 percent of their physicians remain unaware of it. That means that only about one in 20 Americans are in position to feel secure that their wishes will be respected if they lose the ability to directly control their own care," says Archelle Georgiou, MD, a former health plan executive and advance directive proponent.
Why An Advance Directive?
Over 70 percent of Americans have thought about end-of-life medical decisions and would like their treatment preferences to be honored.
"It is not just about end-of-life, it is about controlling your heath care now."—Nathan Kottkamp, attorney, medical ethicist, and founder of National Healthcare Decision Day.
"Both Karen Ann Quinlan and Terri Schiavo were young women who were not thinking about end-of-life decisions when their lives suddenly changed. In both cases, an advance directive would have avoided the national controversy and the public suffering their loved ones had to endure," notes Kottkamp.
"When there is no advance directive, families are placed in the painful position of having to make decisions for their loved ones, and this often pits one side of a family against another. Doctors may be left having to institute invasive and aggressive treatments simple because they have no choice. You should make an advance directive not just for your sake, but also for your family," urges Dr. Georgiou.
Why Don’t People Have An Advance Directive?
"There are many reasons why people do not take advantage of this right," says Kottkamp. "One of the main reasons is that people don’t want to think about death or disability. These are uncomfortable topics, but they are important topics for all of us." Here are some of the other reasons people fail to complete an advance directive:
- The Federal Patient Self-Determination act states that institutions must ask you about these issues at the time of admission to the hospital. "That’s just really bad timing. When people are going into the hospital they are anxious and it is difficult to focus clearly on these important decisions," says Kottkamp.
- Physicians do not take the time to discuss these issues with their patients ahead of time. "Part of the problem is that many physicians are not comfortable with the discussion, and part of the problem is that they have such limited time and they are not compensated for end-of-life planning," notes Georgiou.
- People view the advance directive as complicated and burdensome. They may fear that the document is binding or difficult to change.
"Part of the problem is that so many states have different laws about what constitutes a legal advance directive," explains Kottkamp. “It is a legal document so it takes a commitment of time and effort to put it in place. But with something as important as controlling your own healthcare, isn’t it worth the effort? That is one of the reasons we picked April 16 for National Healthcare Decision Day. It is the day after we pay our taxes, another commitment that may be uncomfortable, but is necessary. We all know the old adage about the two things we all need to do."
What To Expect On April 16
The American Medical Association, American Hospital Association and the American Bar Association are just a few of the eighty national organizations that will be recognizing and participating in National Healthcare Decision Day. "We hope that people will use this day as an opportunity to get the discussion about end-of-life care started," says Georgiou.
"We hope doctors will take the opportunity to talk to every patient about their wishes for end-of-life care. Hospitals will set up information booths. Civic organizations may sponsor a luncheon and an informational talk. The media can take this opportunity to stimulate interest and discussion," says Kottkamp.
Here are some of the goals for National Healthcare Decision Day:
- Increase awareness of the benefits of advance care planning and having an advance directive in place.
- Encourage the national media to provide information and resources about advance care planning.
- Mobilize healthcare providers, community organizations and state organizations to do a better job of outreach and education.
"People need to know that this is not about rationing care. This is about deciding what kind of care you don’t want and what kind of care you do want."—Archelle Georgiou, MD
Resources For Seniors And Caregivers
"Use April 16 to start thinking about what kind of care you want and who you want to share this information with. That is the most important first step. If you already have an advance directive, take it out and look at it. It should be revised every two years and it should not be hidden away in a locked box," says Kottkamp.
Here are some resources you can use to get started now:
- Go to National Healthcare Decision Day’s official website to learn about advance directives, download and complete an advance directive, and join the discussion about future healthcare decisions. You can find them at www.nationalhealthcaredecisionsday.org.
"If you don’t have an advance directive now is the time to start the discussion. If you are a caregiver for someone without an advance directive, use April 16 as a reason to bring up the subject. Taking that first step can be one of the greatest gifts you can give to a loved one," says Kottkamp.