Note: information on this page is based on content originated by the National Institute on Aging and published on their website at www.nia.nih.gov. Key points are summarized here, but we recommend you read the entire article at this link. Information added by Care is There is indicated by italics. Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences. These preferences are often put into an advance directive, a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want. It also allows you to express your values and desires related to end-of-life care. The Conversation Project provides resources for discussing end of life care with loved ones and physicians. Sometimes when doctors believe a cure is no longer possible and you are dying, decisions must be made about the use of emergency treatments to keep you alive. Doctors can use several artificial or mechanical ways to try to do this. Decisions that might come up at this time include the following: CPR CPR (cardiopulmonary resuscitation) might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. The heart of a young, otherwise healthy person might resume beating normally after CPR. An otherwise healthy older person, whose heart is beating erratically or not beating at all, might also be helped by CPR. CPR is less likely to work for an older person who is ill, can’t be successfully treated, and is already close to death. It involves repeatedly pushing on the chest with force, while putting air into the lungs. This force has to be quite strong, and sometimes ribs are broken or a lung collapses. Electric shocks known as defibrillation and medicines might also be used as part of the process. Ventilator use Ventilators are machines that help you breathe. A tube connected to the ventilator is put through the throat into the trachea (windpipe) so the machine can force air into the lungs. Putting the tube down the throat is called intubation. Because the tube is uncomfortable, medicines are used to keep you sedated (unconscious) while on a ventilator. If you can’t breathe on your own after a few days, a doctor may perform a tracheotomy or “trach” (rhymes with “make”). During this bedside surgery, the tube is inserted directly into the trachea through a hole in the neck. For long-term help with breathing, a trach is more comfortable, and sedation is not needed. People using such a breathing tube aren’t able to speak without special help because exhaled air goes out of the trach rather than past their vocal cords. Artificial nutrition or artificial hydration A feeding tube and/or intravenous (IV) liquids are sometimes used to provide nutrition when a person is not able to eat or drink. These measures can be helpful if you are recovering from an illness. However, if you are near death, these could actually make you more uncomfortable. For example, IV liquids, which are given through a plastic tube put into a vein, can increase the burden on failing kidneys. Or if the body is shutting down near death, it is not able to digest food properly, even when provided through a feeding tube. At first, the feeding tube is threaded through the nose down to the stomach. In time, if tube feeding is still needed, the tube is surgically inserted into the stomach. Comfort care Comfort care is anything that can be done to soothe you and relieve suffering while staying in line with your wishes. Comfort care includes managing shortness of breath; offering ice chips for dry mouth; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or constipation. Often this is done through hospice, which may be offered in the home, in a hospice facility, in a skilled nursing facility, or in a hospital. What to include in your advance directive is a very personal decision, based on your values and preferences. In addition to the discussion offered in the NIA article, you may consider the resources in the Toolkit for Advanced Care Planning from the American Bar Association. There are two main elements in an advance directive — a living will and a durable power of attorney for health care. There are also other documents that can supplement your advance directive, such as: Living will A living will is a written document that helps you tell doctors how you want to be treated if you are dying or permanently unconscious and cannot make decisions about emergency treatment. In a living will, you can say which of the procedures described you would want, which ones you wouldn’t want, and under which conditions each of your choices applies. Durable Power of Attorney for Health Care A durable power of attorney for health care is a legal document naming a healthcare proxy, someone to make medical decisions for you when you are unable to do so. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes. This means that he or she will be able to decide as you would when treatment decisions need to be made. A proxy can be chosen in addition to or instead of a living will. Having a healthcare proxy helps you plan for situations that cannot be foreseen, like a serious auto accident. If you decide to choose a proxy, think about people you know who share your views and values about life and medical decisions. Your proxy might be a family member, a friend, your lawyer, or someone with whom you worship. It’s a good idea to also name an alternate proxy. It is especially important to have a detailed living will if you choose not to name a proxy. You can decide how much authority your proxy has over your medical care—whether he or she is entitled to make a wide range of decisions or only a few specific ones. Try not to include guidelines that make it impossible for the proxy to fulfill his or her duties. For example, it’s probably not unusual for someone to say in conversation, “I don’t want to go to a nursing home,” but think carefully about whether you want a restriction like that in your advance directive. Sometimes, for financial or medical reasons, that may be the best choice for you. Of course, check with those you choose as your healthcare proxy and alternate before you name them officially. Make sure they are comfortable with this responsibility. Note: The American Bar Association Commission on Law and Aging offers a guide on How to Select Your Health Care Agent or Proxy. Once you have talked with your doctor and have an idea of the types of decisions that could come up in the future and whom you would like as a proxy, if you want one at all, the next step is to fill out the legal forms detailing your wishes. A lawyer can help but is not required. Many states have their own advance directive forms. The American Bar Association has a list of advance care planning forms by state. Your local Area Agency on Aging can help you locate the right forms. You can find your area agency phone number by calling the Eldercare Locator toll-free at 1-800-677-1116 or by visiting https://eldercare.acl.gov. Some states want your advance directive to be witnessed; some want your signature notarized. A notary is a person licensed by the state to witness signatures. For example, Virginia law requires two witnesses. The American Bar Association also provides a multi-state form that is accepted in almost all states. You can learn more at this link. Aging with Dignity offers the Five Wishes form, which is honored in almost every state and is written in everyday language. Some people spend a lot of time in more than one state—for example, visiting children and grandchildren. If that’s your situation also, you might consider preparing an advance directive using forms for each state—and keep a copy in each place, too. Give copies of your advance directive to your healthcare proxy and alternate proxy. Give your doctor a copy for your medical records. Tell key family members and friends where you keep a copy. If you have to go to the hospital, give staff there a copy to include in your records. Because you might change your advance directive in the future, it’s a good idea to keep track of who receives a copy. Charlottesville, Virginia: As of March 2019, you can mail your advance medical directives to the following addresses to have them on file with the two main hospitals: Note: You can add your advance directive to a registry that makes it easier for health care professionals to find it when needed. Review your advance care planning decisions from time to time—for example, every 10 years, if not more often. You might want to revise your preferences for care if your situation or your health changes. Or, you might want to make adjustments if you receive a serious diagnosis; if you get married, separated, or divorced; if your spouse dies; or if something happens to your proxy or alternate. If your preferences change, make sure your doctor, proxy, and family know about them. Note: In its Toolkit for Health Care Advance Planning, the American Bar Association emphasizes that “just having a written advance directive by itself does not ensure that your wishes will be understood and respected. Studies have shown that standard advance directive forms do little to influence end-of-life decisions without: (1) informed, thoughtful reflection about your wishes and values, and (2) personal communication between you and your likely decision-makers before a crisis occurs.” What happens if you have no advance directive or have made no plans and you become unable to speak for yourself? In such cases, the state where you live will assign someone to make medical decisions on your behalf. This will probably be your spouse, your parents if they are available, or your children if they are adults. If you have no family members, the state will choose someone to represent your best interests. For example: Planning health care decisions and choosing a health care agent are profoundly personal decisions. You will want to do your own careful consideration and make your own choices. But we can make that easier by:
Advance Health Care Directives
What is Advanced Care Planning?
Talking About Wishes for End of Life Care
Decisions That Could Come Up Near Death
Making Your Wishes Known
Selecting Your Healthcare Proxy
Advance Directive Documents
After You Set Up Your Advance Directive
What if You Don’t Have an Advance Directive?
How Care is There Can Help
Resources for Advance Health Care Directives
Next Steps
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