Advance Health Care Planning: Specifying Your Wishes

What is advance care planning? It's the process of thinking about and documenting the kind of medical care you do or do not want if you are unable to communicate your wishes. The main part of this plan is a health care directive, which may also be called an advance directive or living will, depending on your state.

When you plan your health care, you can share your wishes in as much detail as you want. Most people choose one of these options:

• leaving all health care decisions in the hands of a trusted person, usually called their health care agent
• making a general statement that they don't want life support when death is near
• making a general statement that they want to be kept alive as long as possible, or
• specifying different treatment wishes for different situations.

If you are unsure about your choices, this article introduces the basics of end-of-life health care planning and explains the types of medical treatments and choices you may face.

You Control Your Medical Choices

Many people know it is important to write down their health care wishes, but some worry about changing their minds or getting care they do not want. Remember, your written instructions only apply if you cannot speak for yourself, and you can change or cancel your health care documents at any time.

As long as you can express what you want, even with gestures, health care providers will follow your current wishes, not just what is written in your directive. Your health care plan is flexible, and you can update it whenever your feelings or needs change.

Understanding End-of-Life Health Care

In this section, we'll go over some medical procedures you should know about before making your advance care plan. While this may not be easy or enjoyable to read, it's important to at least look over the next sections so you understand:

• what "life-prolonging" means in a health care setting
• what "artificially provided food and water" means and when it's important, and
• what "palliative" or comfort care is about.

If you already know you want your health care agent to make all decisions for you, or if you are sure you want all treatments either given or withheld, you can probably skip this section.

Life-Prolonging Medical Care

When you make medical choices in advance, you will likely want to state your preferences about life-prolonging treatments. Here is some information to help you explain your wishes.

Life-prolonging procedures or treatments are used only to extend the dying process or maintain permanent unconsciousness. In simple terms, patients would die soon or never regain awareness, no matter if they get the treatment. This section describes the most common life-prolonging interventions, such as respirators, CPR, and surgery.

Keep in mind that medical procedures change over time. As technology improves, new treatments may become available, and some current ones may no longer be used. Treatment options can also vary by hospital or clinic.

Blood and blood products. Doctors may recommend partial or complete blood transfusions to treat blood-related diseases, promote healing following blood loss, or replace blood lost during surgery, illness, or injury.

Cardiopulmonary resuscitation. CPR is performed when someone's heart stops beating or breathing ceases. The procedure involves chest compressions and mouth-to-mouth resuscitation. When equipment is available, electrical shocks may also be administered. Intravenous medications are frequently given alongside CPR to stabilize vital body systems. In many cases, the final stage involves connecting the patient to a respirator.

Diagnostic tests. These tests check urine, blood, and other body fluids to assess how your body is working overall. These tests can be simple, such as X-rays, or more advanced, such as measuring brain activity. Some tests, including surgeries, can be expensive, painful, or invasive.

Dialysis. When the kidneys stop working well, a dialysis machine cleans the blood and returns important substances using tubes in the blood vessels or the belly. Each session takes at least three hours and usually happens two or three times a week. Some people can use portable dialysis machines at home instead of going to a hospital or advanced care facility.

Drugs. Antibiotics are often given to very sick or unconscious patients, either by mouth, feeding tube, or injection. They help fight infections, but very weak patients may not get better even with strong antibiotics.

Some health care providers believe that infections might help patients in the final stages of illness by causing unconsciousness, which could reduce pain, or by speeding up the dying process. Others think antibiotics should almost always be used if they can relieve symptoms.

Drugs can also be given to manage pain. Even if your health care directive says you do not want life-prolonging medicines, you will still get pain relief unless you clearly say you do not want it.

Respirator. A mechanical respirator or ventilator supports or completely takes over a patient's breathing by pumping air in and out of the lungs. Connection to the machine occurs through a tube inserted through the mouth and throat into the lungs, or through direct surgical attachment to the lungs.

Respirators are often used to help patients during emergencies or after serious injuries and are removed when no longer needed. But if a terminally ill or permanently unconscious person is on a respirator, most doctors will not remove it unless there are clear written instructions from the patient.

Surgery. Operations, including amputations, may be done to stop serious infections or keep organs working. Major surgeries, such as heart bypasses, can also be performed on terminally ill or unconscious patients. When thinking about surgery for your end-of-life care, consider the cost, recovery time, and whether it will affect the outcome.

Artificially Administered Food and Water

If you are in a permanent coma or close to death from a serious illness, you may not survive without artificial food and water. Doctors will give you nutrients and fluids through tubes in a vein, through your nose into your stomach, or directly into your stomach with surgery, unless you say you do not want this. The method depends on your condition.

Intravenous (IV) feeding delivers fluids through a vein in the arm or leg and is intended as a short-term solution. In contrast, tube feeding can continue indefinitely.

People who are permanently unconscious can live for years with artificial food and water, even if they never wake up. If food and water are stopped, death usually happens fairly quickly from dehydration, not starvation. Medication is usually given to keep the person comfortable.

When you make your medical care plan, you can choose to accept or refuse artificial food and water. Many people find this decision difficult. Remember, you will always receive food and water as long as you can ask for it in any way.

Palliative Care

If you choose a natural death without life-prolonging treatments, you do not have to refuse pain relief or comfort care. Your advance care plan can say you want all care needed to keep you pain-free, unless you say otherwise. This type of care is often called "comfort care" or "palliative care." Instead of trying to cure illness or extend life, palliative care focuses on quality of life and dignity, keeping patients comfortable and free from pain as life naturally ends.

Studies show that families of dying patients value palliative care, and you can find more information about it online. Still, palliative care is not used as often as it could be. Many hospitals do not have full programs, and not all doctors are familiar with it. Because of this, some patients die in pain in intensive care, not knowing their suffering could have been eased. Learn about palliative care and talk about your wishes with your health care agent and your doctors.

Other Options for Your Advance Care Plan

For some people, even detailed advance care plans do not address their biggest concerns, such as spiritual matters, cost of care, dying with dignity, quality of life, or the well-being of loved ones.

If you have these concerns, talk about them with your health care agent if you have named one. You can also write about your feelings on topics such as:

• the location of your care
• palliative care
• limits or exceptions for pain relief
• personal or religious values, and
• any additional wishes.

The following sections provide more information about each option.

Location of care. If it is important to you where you receive end-of-life care, you can state your preference. You might name a specific place, such as your home, a certain hospital, or a hospice, or simply ask to be somewhere you can be with loved ones. You can also say that getting the treatment you want matters more than the location. For example, if you need to be in a hospital ICU to get the care you want, you can say that living longer is your top priority.

You can also share your preferences about where you want to be cared for if you have conditions like Alzheimer's or severe dementia. This includes your wishes about nursing homes or other long-term care facilities.

Make sure your location preferences do not conflict with your other health care instructions. For example, if you want both life-prolonging treatment and to stay at home during a terminal illness, be clear about what matters most. Would you skip some treatments to stay home, or is getting life-sustaining care more important than your location?

Discuss your preferences with your primary care doctor, your health care agent if you have named one, and your loved ones.

Palliative or comfort care. No matter what you decide about life-prolonging treatments, your health care directive can state that you want comfort and pain relief. Comfort care, also called palliative care, helps with physical, emotional, and spiritual needs. You can describe exactly how you want this care, such as asking for certain pain medicines or treatments.

You can also include hospice care or other comfort care you want at the end of life, including anything that would help you feel better. For example, you might want certain music played, or favorite stories, poems, or passages read to you if you are too weak to speak. Discuss these wishes with your health care agent, doctor, and loved ones.

Exceptions to pain relief. Most health care directives allow doctors to give you any medicine needed to keep you pain-free, unless you say otherwise. For example, you might not want certain pain medicines because of addiction concerns or allergies. You could also ask for less pain medicine so you can stay alert around loved ones.

Doctors can see your allergies or past reactions in your medical records, but adding your preferences to your medical care plan ensures your agent knows and can speak up for your wishes.

Religious or personal beliefs. Sometimes end-of-life situations come up that are not covered by your instructions. Sharing your beliefs or philosophy about medical care and dying can help your care providers make decisions for you.

This can be hard to talk about, but think about sharing your main health care goals, any fears, your spiritual or religious beliefs, your thoughts on when life would not be worth living, and how your illness might affect your family. You don't have to write a lot, but mention anything you feel strongly about. Talk about these things with your health care agent and loved ones.

Any Other Wishes or Statements

You can also share any other feelings or wishes about your health care. You can write anything you want, as long as it does not conflict with your other instructions. Be sure to talk about these wishes with your health care agent or other caregivers.

If Your Wishes Are Simple

Once you understand common end-of-life medical treatments, it's time to document your preferences. If you do not want to specify detailed treatment choices, you have three straightforward options:

• delegate all decisions to your health care agent, who must follow any wishes you express
• request no life-prolonging treatment when death is near, or
• request all possible life-prolonging measures regardless of your condition.

Below, we explain each of these three options.

Letting your agent make all treatment decisions. The most reliable way to ensure you receive the care you want is to document your preferences explicitly. This becomes particularly important for decisions that may be sensitive or disputed. For example, refusing feeding tubes remains a topic of cultural and political debate. If you have strong feelings about declining artificial nutrition and hydration near the end of life, clearly stating this in your directive is essential.

However, if you are too ill or tired to specify detailed wishes, or if your main goal is to name a trusted decision-maker, you can give your agent full authority. This lets you finish your health care planning more quickly.

Declining life-prolonging treatment near death. Your medical care plan can state that you don't want any life-prolonging treatments when close to death from conditions defined by your state's law—typically, terminal illness or permanent unconsciousness. You should also specify whether you want artificially administered food and water in these situations. With this choice, you'll still receive comfort care to manage pain unless you state otherwise.

Requesting all life-prolonging measures. This is the opposite choice. You are free to state that you want your life prolonged as long as possible within accepted medical standards, including feeding tubes, even when terminally ill or permanently unconscious.

If you want to make a more detailed treatment plan, see Advance Health Care Planning for Different Medical Conditions.

More Information About Advance Health Care Planning

Making an advance health care plan is one of the most important choices you can make for yourself and your loved ones. By clearly documenting your wishes in health care directives, you make sure your values guide your care, even if you cannot speak for yourself. Take time to talk with your health care agent, family, and doctors about your preferences so everyone knows what you want and feels at ease.

For more information, see the following articles:

Advance Care Planning for Different Medical Conditions

Expressing Organ Donation Wishes in Your Health Care Directive

You can learn more about making health care directives valid in your state in WillMaker's Legal Manual.