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.
When and how to change your directives
The American Bar Association Commission on Law and Aging suggests that you re-examine your health care wishes whenever any of the following "five D's" occurs:
Decade: When you start each new decade of your life.
Death: When you experience the death of a loved one.
Divorce: When you experience a divorce or other major family change. (In many states, a divorce will automatically revoke the authority of a spouse who was named as agent.)
Diagnosis: When you are diagnosed with a serious health condition.
Decline: When you experience a significant decline or deterioration of an existing health condition, especially when it diminishes your ability to live independently.
If you decide to change something in either your living will or your health care proxy, the best thing to do is create a new one. Once this new document is signed and dated (in front of the appropriate witnesses), it supersedes your old directive. To avoid confusion, make sure anyone who had a copy of your old directive gives it back to you so you can destroy it (see the Advance Care Directives Tracking Sheet, Form 4 in the "Forms" section of this report). Then give the new one to whomever you choose. Take the time to discuss these changes with your doctor and your health care agent to be sure everyone is on the same page. If you enter a nursing home or assisted living facility, make sure your advance care directive gets filed in your medical records. A growing number of states are creating electronic registries in which you may record your directive, so that it will be directly available to health care providers when needed.
If you move to another state, check that your living will is still valid. Although states may be legally required to honor any advance care directive that clearly conveys your wishes, it's best to fill out a form specific to that state.
Commonly held myths about end-of-life issues
Myth: Refusing life support invalidates your life insurance.
Truth: Refusing life support does not mean that you are committing suicide, which often invalidates life insurance policies. The underlying medical problem would be the cause of death.
Myth: If medical treatment is started, it cannot be stopped.
Truth: Withholding medical treatment and stopping treatment are the same in the eyes of the law. So you or your health care agent can approve a treatment that you think may be helpful without fear that you can't change your mind later. However, be aware that stopping treatment can be more emotionally difficult than not starting it in the first place.
Myth: If you refuse life support, you're refusing all treatments.
Truth: No matter what treatments you refuse, you can still expect to receive any other care you need — including pain management.
Myth: It's painful to stop or refuse artificial nutrition and hydration.
Truth: Unlike keeping food or water from a healthy person, declining tube-feeding does not cause pain (see "Artificial nutrition and hydration").