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—both your family and your health care providers—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.
An advance directive also allows you to express your values and desires related to end-of-life care. You might think of it as a living document—one that you can adjust as your situation changes because of new information or a change in your health.
Advance Care Planning Decisions
Sometimes 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 relate to:
- CPR (cardiopulmonary resuscitation)
- Ventilator use
- Artificial nutrition (tube feeding) and artificial hydration (IV, or intravenous, fluids)
- Comfort care
What is CPR? Cardiopulmonary resuscitation might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. 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. The heart of a young, otherwise healthy person might resume beating normally after CPR. Often, CPR does not succeed in older adults who have multiple chronic illnesses or who are already frail.
Using a ventilator as emergency treatment. 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 often used to keep you sedated while on a ventilator. If you are expected to remain on a ventilator for a long time, 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 are not able to speak without special help because exhaled air does not go past their vocal cords.
Using artificial nutrition and hydration near the end of life. If you are not able to eat, you may be fed through a feeding tube that is threaded through the nose down to your stomach. If tube feeding is still needed for an extended period, a feeding tube may be surgically inserted directly into your stomach. Hand feeding (sometimes called assisted oral feeding) is an alternative to tube feeding. This approach may have fewer risks, especially for people with dementia.
If you are not able to drink, you may be provided with IV fluids. These are delivered through a thin plastic tube inserted into a vein.
Artificial nutrition and hydration can be helpful if you are recovering from an illness. However, studies have shown that artificial nutrition toward the end of life does not meaningfully prolong life. Artificial nutrition and hydration may also be harmful if the dying body cannot use the nutrition properly.
What is comfort care at the end of life? 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; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or constipation.
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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. For example, what decisions would you or your family face if your high blood pressure leads to a stroke? You can ask your doctor to help you understand and think through your choices before you put them in writing. Discussing advance care planning decisions with your doctor is free through Medicare during your annual wellness visit. Private health insurance may also cover these discussions.
If you don’t have any medical issues now, your family medical history might be a clue to help you think about the future. Talk with your doctor about decisions that might come up if you develop health problems similar to those of other family members.
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 the 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?
What makes life meaningful to you? If your heart stops or you have trouble breathing, would you want to undergo life-saving measures if it meant that, in the future, you could be well enough to spend time with your family? Would you be content if the emergency leaves you simply able to spend your days listening to books on tape or gazing out the window?
But there are many other scenarios. Here are a few. What would you decide?
- If a stroke leaves you unable to move and then your heart stops, would you want CPR? What if you were also mentally impaired by a stroke—does your decision change?
- What if you are in pain at the end of life? Do you want medication to treat the pain, even if it will make you more drowsy and lethargic?
- What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics and to be placed on a ventilator?
For some people, staying alive as long as medically possible, or long enough to see an important event like a grandchild’s wedding, is the most important thing. An advance directive can help to make that possible. Others have a clear idea about when they would no longer want to prolong their life. An advance directive can help with that, too.
Your decisions about how to handle any of these situations could be different at age 40 than at age 85. Or they could be different if you have an incurable condition as opposed to being generally healthy. An advance directive allows you to provide instructions for these types of situations and then to change the instructions as you get older or if your viewpoint changes.
Making Your Advance Care Wishes Known
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. You can choose which documents to create, depending on how you want decisions to be made. These documents include:
- Living will
- Durable power of attorney for health care
- Other advance care planning documents
Making Your Health Care Directives 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. Don’t depend on your lawyer to help you understand different medical treatments. Start the planning process by talking with your doctor.
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.
—National Institute on Aging