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This holiday season take the time to start this conversation.
Advance care planning is not just about old age. At any age, a medical crisis could leave you too ill to make your own healthcare decisions. Even if you are not sick now, planning for health care in the future is an important step toward making sure you get the medical care you would want, if you are unable to speak for yourself and doctors and family members are making the decisions for you.
Start by thinking about what kind of treatment you do or do not want in a medical emergency. It might help to talk with your doctor about how your current health conditions might influence your health in the future.
If you don't have any medical issues now, your family medical history might be a clue to help you think about the future.
In considering treatment decisions, your personal values are key. Is your main desire to have the most days of life? Or, would your focus be on quality of life, as you see it? What if an illness leaves you paralyzed or in a permanent coma and you need to be on a ventilator? Would you want that?
There are two main elements in an advance care directive:
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 your own decisions about emergency treatment. In a living will, you can say which of the procedures described in the Decisions That Could Come Up section 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 at times 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.
Some people are reluctant to put specific health decisions in writing. For them, naming a healthcare agent might be a good approach, especially if there is someone they feel comfortable talking with about their values and preferences. A named proxy can evaluate each situation or treatment option independently.
Other advance care planning documents. You might also want to prepare documents to express your wishes about a single medical issue or something not already covered in your advance directive. A living will usually covers only the specific life-sustaining treatments discussed earlier. You might want to give your healthcare proxy specific instructions about other issues, such as blood transfusion or kidney dialysis. This is especially important if your doctor suggests that, given your health condition, such treatments might be needed in the future.
Medical issues that might arise at the end of life include:
- DNR orders
- Organ and tissue donation
- POLST and MOLST forms
A DNR (do not resuscitate) order tells medical staff in a hospital or nursing facility that you do not want them to try to return your heart to a normal rhythm if it stops or is beating unsustainably using CPR or other life-support measures. Sometimes this document is referred to as a DNAR (do not attempt resuscitation) or an AND (allow natural death) order. Even though a living will might say CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your bed might avoid confusion in an emergency situation. Without a DNR order, medical staff will make every effort to restore your breathing and the normal rhythm of your heart.
A similar document, called a DNI (do not intubate) order,tells medical staff in a hospital or nursing facility that you do not want to be put on a breathing machine.
A non-hospital DNR order will alert emergency medical personnel to your wishes regarding measures to restore your heartbeat or breathing if you are not in the hospital.
Organ and tissue donation allows organs or body parts from a generally healthy person who has died to be transplanted into people who need them. Commonly, the heart, lungs, pancreas, kidneys, corneas, liver, and skin are donated. There is no age limit for organ and tissue donation. You can carry a donation card in your wallet. Some states allow you to add this decision to your driver's license. Some people also include organ donation in their advance care planning documents.
At the time of death, family members may be asked about organ donation. If those close to you, especially your proxy, know how you feel about organ donation, they will be ready to respond. There is no cost to the donor's family for this gift of life. If the person has requested a DNR order but wants to donate organs, he or she might have to indicate that the desire to donate supersedes the DNR. That is because it might be necessary to use machines to keep the heart beating until the medical staff is ready to remove the donated organs.
Learn more about organ and tissue donation.
POLST and MOLST forms provide guidance about your medical care preferences in the form of a doctor's orders. Typically you create a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) when you are near the end of life or critically ill and know the specific decisions that might need to be made on your behalf. These forms serve as a medical order in addition to your advance directive. They make it possible for you to provide guidance that healthcare professionals can act on immediately in an emergency.
A number of states use POLST and MOLST forms, which are filled out by your doctor or sometimes by a nurse practitioner or physician's assistant. The doctor fills out a POLST or MOLST after discussing your wishes with you and your family. Once signed by your doctor, this form has the same authority as any other medical order. Check with your state department of health to find out if these forms are available where you live.
What About Pacemakers and ICDs?
Some people have pacemakers to help their hearts beat regularly. If you have one and are near death, it may not necessarily keep you alive. But, you might have an ICD (implantable cardioverter-defibrillator) placed under your skin to shock your heart back into regular beatings if the rhythm becomes irregular. If you decline other life-sustaining measures, the ICD may be turned off. You need to state in your advance directive what you want done if the doctor suggests it is time to turn it off.
SELECTING YOUR HEALTHCARE PROXY
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 in your social or spiritual community. 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.
MAKING IT OFFICIAL
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. If you decide to use a lawyer, don't depend on him or her to help you understand different medical treatments. Start the planning process by talking with your doctor.
Many states have their own advance directive forms. 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 require your advance directive to be witnessed; a few require your signature to be notarized. A notary is a person licensed by the state to witness signatures. You might find a notary at your bank, post office, or local library, or call your insurance agent. Some notaries charge a fee.
Some states have registries that can store your advance directive for quick access by healthcare providers, your proxy, and anyone else to whom you have given permission. Private firms also will store your advance directive. There may be a fee for storing your form in a registry. If you store your advance directive in a registry and later make changes, you must replace the original with the updated version in the registry.
Some people spend a lot of time in more than one state—for example, visiting children and grandchildren. If that's your situation, consider preparing an advance directive using forms for each state—and keep a copy in each place, too.
AFTER YOU SET UP YOUR ADVANCE DIRECTIVE
Give copies of your advance directive to your healthcare proxy and alternate proxy. Give your doctor a copy for your medical records. Tell close 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.
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, you will want to make sure your doctor, proxy, and family know about them.
Talking About Your Wishes
It can be helpful to have conversations with the people close to you about how you want to be cared for in a medical emergency or at the end of life. These talks can help you think through the wishes you want to put in your advance directive.
It's especially helpful to talk about your thoughts, beliefs, and values with your healthcare proxy. This will help prepare him or her to make medical decisions that best reflect your values.
After you have completed your advance directive, talk about your decisions with your healthcare proxy, loved ones, and your doctor to explain what you have decided. This way, they are not surprised by your wishes if there is an emergency.
Another way to convey your wishes is to make a video of yourself talking about them. This lets you express your wishes in your own words. Videos do not replace an advance directive, but they can be helpful for your healthcare proxy and your loved ones.
BE PREPARED
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.
Always remember: an advance directive is only used if you are in danger of dying and need certain emergency or special measures to keep you alive, but you are not able to make those decisions on your own. An advance directive allows you to make your wishes about medical treatment known.
It is difficult to predict the future with certainty. You may never face a medical situation where you are unable to speak for yourself and make your wishes known. But having an advance directive may give you and those close to you some peace of mind.
Advance Directive Wallet Card
You might want to make a card to carry in your wallet indicating that you have an advance directive and where it is kept. Here is an example of the wallet card offered by the American Hospital Association. You might want to print this to fill out and carry with you. A PDF can be found online(PDF, 40 KB).
Read about this topic in Spanish. Lea sobre este tema en español.
FOR MORE INFORMATION ABOUT HEALTHCARE DIRECTIVES
CaringInfoNational Hospice and Palliative Care Organization1-800-658-8898 (toll-free)caringinfo@nhpco.orgwww.caringinfo.org
Center for Practical Bioethics1-800-344-3829 (toll-free)center@centerforbioethics.orgwww.practicalbioethics.org
OrganDonor.govHealth Resources & Services Administrationwww.organdonor.gov
National POLST Paradigm1-202-780-8352info@polst.orgwww.polst.org
Put It In WritingAmerican Hospital Association1-800-424-4301www.putitinwriting.org
Content reviewed: January 15, 2018