It's never easy to ponder death, whether you're facing the demise of a loved one or the end of your own life. But taking some time to think and plan ahead for those final hours or days can be a future blessing for your family and others close to you. Most people want a say in all life's important decisions. The same should be true regarding decisions surrounding death, such as what kind of medical treatment you receive. But what if you're unable to make your decisions or wishes known? Say, for example, you are unconscious and can't speak or hear. Unless you have spoken with your loved ones and taken certain legal actions, there may be confusion and stress over what those decisions will be and who can make them for you.
Living wills and health care proxies — documents known as advance care directives — give you a voice in decisions about your medical care. Fewer than 30% of Americans have filled out advance directives. Yet without these documents, choices may be left up to a doctor or someone appointed by a judge — a person who may not know your values, beliefs, or preferences (that is, your health care philosophy). Or, a family member who doesn't know about your wishes may make decisions for you. For example, suppose a woman is unable to communicate because of a brain tumor and her only living relative is a brother with whom she hasn't spoken in 10 years. She and her best friend have talked frankly about her desire not to be put on life support or fed intravenously. Legally, her brother may get to make such decisions, although clearly he's not the person most familiar with her desires. But if that woman had taken the simple steps to legally name her friend as her health care agent, she would have lived her last days as she wanted.
You can hope your health will be sound for the rest of your life, but there are no guarantees. So take the time to learn about and complete the necessary forms — and the sooner the better. Even if you're in perfect health, you never know when life may throw a medical crisis your way. That's why everyone over age 18 should have a living will or health care proxy. As you get older, this becomes more crucial; half of hospital stays and 80% of deaths involve people over age 65.
Advance care directives enable you to choose someone to make health care decisions for you if you are unable to do so, let you specify what kinds of treatment or goals of treatment you'd like in different circumstances, and allow a consistent plan to emerge over all by providing a base upon which to build your health care philosophy. Some people worry that by filling out these documents, they're giving up control over their medical treatment. But in reality, advance care directives help you gain control over your health care. As long as you are able to make and communicate your decisions, your word supersedes anything you've written or said to others. It's only when you're unconscious or too ill to make your wishes known that any type of advance care directive goes into effect. If your medical condition improves and you can once again make and express your decisions, your oral statements again take precedence.
Although advance care directives are important forms to complete, they're not difficult to understand, and you don't need a lawyer's help. This report will explain the process, give you tips on talking about this difficult subject, and provide you with most of the forms you need. Keep in mind, though, that forms may vary from state to state. In those cases, we provide you with information on how to obtain the right document.
Privacy rules and health care proxies
Since 2003, U.S. hospitals, doctors, and health plans have had to follow federal rules to make sure that patients' personal health information is kept private. When you visit a new health care facility — for example, a doctor's office or hospital — you will most likely be given some information on these rules and asked to sign a paper stating that you understand them. These privacy rules are part of a larger piece of legislation known as the Health Insurance Portability and Accountability Act, commonly referred to by the acronym HIPAA (pronounced HIP-uh).
Lawyers, health care workers, and other people have voiced concern over whether these privacy rules will make health care proxies ineffective. After all, if your health care provider can't share your medical information with anyone else, how can he or she tell your agent that you are incapacitated and therefore need the agent to serve as your advocate? People have asked whether they need to include a HIPAA release form with their health care proxy form.
However, the government has stated that HIPAA does not affect heath care proxies. By signing the Health Care Proxy form in this report (or another similar form), you authorize your agent to have access to your medical records and to discuss your health care needs with your providers. If a health care provider or someone else tells you that he or she cannot share health information with an agent because of HIPAA, showing them the information from the HIPAA Web site may help. You can search different categories and questions online at the "HIPAA Frequent Questions" page, www.hhs.gov/hipaafaq, or you can call a toll-free hotline (see "Resources").
One common situation occurs when an adult patient has no health care proxy and a family member wants to talk to the doctor or nurse. The HIPAA rules give health care providers discretion as to what is appropriate to disclose in this situation. But in most instances, the doctor should be able to discuss a patient's health status, treatment, or payment arrangements with the patient's family or close friends. This is discussed on the HIPAA Web site at www.hhs.gov/hipaafaq/notice/488.html.
Nothing in the HIPAA Privacy Rule changes the way in which an individual grants another person power of attorney for health care decisions. State law (or other law) regarding health care powers of attorney continues to apply. The intent of the provisions regarding personal representatives was to complement, not interfere with or change, current practice regarding health care powers of attorney and the designation of other personal representatives. The Privacy Rule provisions regarding personal representatives generally grant persons who have authority to make health care decisions for an individual the ability to exercise the rights of that individual with respect to health information.