Know Your Neighbors
Thursday, April 16, is National Healthcare Decisions Day—devoted to encouraging you to fill out an advance directive indicating who should speak for you if you can’t, and what end-of-life treatments you do and do not want.
If you’re someone who doesn’t want to think or talk about this … KEEP READING! Also, I’m not just talking to aging coots and crones—if you’re a legal adult, 18 or older, I’m talking to you!
National Healthcare Decisions Day is an “unofficial” national holiday—a collaborative national, state and community initiative to ensure that the information, opportunity and access needed to document end-of-life healthcare decisions are available to all adults capable of making informed decisions. It’s meant to educate and empower you about your rights and the importance of your wishes being respected.
Some quick background on the law: The first major decision about a constitutional right to refuse treatment was way back in 1891, when the U.S. Supreme Court recognized a common law right to “possession and control” of our own bodies. In that case, a guy had suffered injuries in a work-related accident, and his employer wanted to surgically “search” his injuries to see if his claim was justified. The court said no, and this became the precedent for many later decisions, including the right to privacy and the right to refuse unwanted treatment. In essence, the court said you “own” your own body, and you can exercise certain rights as a result—much like the ownership of land. Your body is yours, and it cannot be violated by others—even the state—unless there is a really good legal reason.
In 1914, Justice Benjamin Cardozo reconfirmed that notion, writing, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault.” That formed the basis for requiring “informed consent” for medical treatment—those pesky forms shoved at you right before surgery that list all the horrendous worst-case possibilities.
Two later cases gave additional constitutional support. In 1986, a California Appeals Court said that a “competent adult patient has the legal right to refuse medical treatment … and, whenever possible, the patient himself should then be the ultimate decision-maker.” In 1990, the U.S. Supreme Court said that “a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment.” Also in 1990, Congress got the message and passed the Patient Self-Determination Act, which instructed each state to develop forms for individuals so they could name someone to speak for them if they were unable and to document their own wishes about treatment. Free forms are available in each state and can easily be located online.
Unfortunately, the public-education portion of the Patient Self-Determination Act was never funded. Instead of an effective public-service announcement (“This is your brain on drugs …”), we got 50 different forms and laws. If you had an advance directive in one state saying you wanted no extraordinary measures taken to prolong your life—for example, after a severe auto accident—that didn’t mean it would apply in another.
Luckily, individuals and organizations have stepped in to fill the void. One group, Aging With Dignity, has designed “Five Wishes,” a booklet that is accepted in more than 40 states; in addition to the two legal questions (asking who will speak for you if you can’t, and what you do or don’t want regarding treatment), the form offers other questions that are not legally binding, but which may help open lines of communication.
If you were unconscious, and you loved classical music, would you want acid rock played in your room? Is there someone you absolutely do not want there? Is there something unsaid that you want someone to know? “Five Wishes” offers the opportunity to write down things that state forms don’t cover.
There are groups that facilitate discussions about end-of-life decisions, including those catering specifically to young people, who usually don’t think this is their issue because the end of life seems too far away. Just Google “Advance Directives,” and you’ll be amazed at the wealth of information and support you’ll find, much of it free.
Studies have consistently shown that more than 60 percent of us want our own choices respected, but only about 20-30 percent of us have ever filled out forms. Since forms are not valid if you’re incompetent to make a decision—for example, after a severe brain trauma or advancing dementia—it’s important to have these conversations and get forms completed before you’re facing a crisis. You don’t need an attorney or even a notary: Any two disinterested people (not family members or health-care providers) can witness your signature.
National Healthcare Decisions Day offers the opportunity to focus on doing something you should do anyway. What are you waiting for?