Health care planning

Advance directives

Advance directives are legal documents that specify your health care wishes if you are unable to speak for yourself. Each state has its own approved form. Most forms describe several options for end-of-life care and can be used to provide any additional instructions a person may want to include. You may change your advance directive whenever you choose.

Advance directives usually include two major sections: the appointment of a health care representative and your instructions to your physician. The health care representative is the person you choose to make your health care decisions for situations in which you cannot speak for yourself. The directive to physicians states which life-sustaining measures you wish to be used, withheld, or withdrawn. These are the instructions the doctor is directed to follow if your body is unable to sustain itself without help.

Health care planning

Health care planning is the process of deciding what you want to include in your advance directive. Once you get past initial feelings of discomfort, you and the patient may find that it is a relief to talk about these matters and clarify your attitudes and beliefs. It is ideal to talk with friends, family, and health care providers about your end-of-life choices. It’s even better to put your wishes in writing. You can prepare for this process by following these steps:

• Reflect upon your current health, your future and life goals, and how you define quality of life. Are there situations that in fact would be worse than death?
• Gather information you need to make future health care decisions.
• Talk about end-of-life decisions with friends, family, clergy, your doctor, and anyone else who can help you clarify your eventual choices.
• Select someone to help you write down your wishes. Consider making this person your health care representative-the person who will make decisions for you if you become unable to do so on your own.
• Document your choices by completing our state’s official advance directive form.
• Inform others about your advance directive and the choices you have made.
• Ensure that your doctor and health care representatives can honor your wishes for end-of-life care.
• Provide copies of your advance directive to your doctor, hospital, health care representative, and others who should have a copy.

How do I decide?

The most difficult decisions a health representative must make involve those that may extend life when in the natural course of events the person would die. Decisions may have to be made about machinery or procedures that assist with breathing, digestion, or circulation. If a person has a curable condition, these procedures can be implemented temporarily until the body can manage on its own again. In the context of a terminal illness, however, they often prolong life and simply postpone a death that is inevitable. At this stage, the patient is usually unable to make his or her preferences known. Decisions to use or not use life support are difficult for family members to make on behalf of someone they love. Planning ahead and making your wishes known will help everyone involved.

As you make plans about specific forms of life support, gather the facts you need to make an informed decision. In particular, you must understand the benefits as well as the risks and alternatives that any treatment may include. A treatment may be beneficial if it relieves suffering, prompts the body to return to full functioning, or enhances quality of life. The same treatment may be considered burdensome if it causes pain, prolongs the inevitable dying process, or subtracts from quality of life. Facts about commonly used life-support measures are described in the next section of this article. They may sound rather grim and extremely final, but remember, you are considering these matters not in the context of the present moment, but in the context of the final days of life.

In addition to helping you investigate and understand the facts, making end-of-life decisions asks you to draw upon your values and ethics and any religious beliefs you may have. Some people find it difficult to put these considerations together and translate them into practical decisions.

To help you, we have included in italics the thoughts of individuals who have made decisions regarding when to stop life support. We don’t promote or discourage any one position; we simply provide these statements as a springboard to perspective and a way to help you clarify your own desires concerning various life-support measures. For example, read the following passage and see how you respond:

“If there is a chance that life support will actually get me back to where I was when I was healthy and enjoying life, then it would be OK for a limited time, say ten days. If I am so sick and miserable, and there is no reasonable chance of recovery to a quality of life I would accept, then I would like to have vigorous comfort measures but would not want my life extended beyond what my body will support on its own.”

Do you agree? Disagree? You can use these quotes to help clarify your own values and preferences.

Life support measures

Below are some commonly used methods of life support, along with a values statement you can use to help clarify your own thinking. (We do not support one decision over another. We offer these simply as a way to help you think about the issues and put your own feelings into words.)

• Cardiopulmonary resuscitation (CPR): Many of us have seen television dramas in which the health care team uses electric shock or pounding on the chest to stimulate the heart to resume beating. This is definitely a life-saving technique, and in the context of a generally healthy person who suddenly has a heart attack, it can result in years or even decades of healthy, active living. In the context of chronic or terminal illness, however, studies indicate that only about 15 percent of people advanced in age or illness leave the hospital alive after CPR. In other words, 85 percent die in spite of receiving CPR. Those people who do get CPR and survive often suffer from broken ribs as a result of the process. Although CPR could mean the difference between life and death, it is not a gentle procedure and could well be a traumatic way to die if a person is already near the end of life.

  “Given the statistics about CPR, I only want it if I have a reasonable chance of recovery to a healthy state. For instance, if I have a sudden heart attack but have been healthy enough to lead a fairly functional life, do CPR. If I am debilitated by cancer, however, and my heart stops, do not do CPR.”
  Do you agree? Disagree? How might you modify this statement for yourself?

• Ventilator (breathing machine): A ventilator is a machine that helps the body breathe by pushing air into the lungs through a tube inserted down the throat. A ventilator can keep a person alive when the lungs have stopped breathing on their own. Ventilators are commonly used for a short time after surgeries. They can also be used for long-term chronic conditions, although they severely restrict one’s ability to move or talk. They can be uncomfortable because their breathing rhythm may not be synchronized with a patient’s natural rhythm. Coughing or crying, for instance, is difficult on a ventilator because the machine forces a regular breathing pattern and cannot accommodate variation. The tubes themselves may cause pain or discomfort. Given the alternative, however, some people find that being on a ventilator is an acceptable quality of life. Bear in mind that ventilators used near the end of life rarely contribute to a full recovery. More often, they prolong the moment of death. Choosing this course may be appropriate if family members need time to arrive from far away. Depending on the condition, a person who needs a ventilator but goes without it usually dies within minutes or hours of its removal.

  “I would be willing to go on a ventilator for a limited time, say four days, if the doctors felt I just needed a little help, and there was more than an eighty percent chance that I would breathe on my own again. If it’s determined that my body will not breathe independently off the ventilator, I want to be taken off but sedated so I do not have to feel the panic of going from full oxygen to not being able to breathe.”
  Do you agree? Disagree? How might you modify this statement for yourself?

• Antibiotics: Antibiotics are drugs that are used to fight infection. They can be given either in pill form or intravenously. Although they are very effective at fighting disease, antibiotics can cause numerous side effects such as rashes and nausea. Certainly if a person has an infection that is causing pain, antibiotics are highly recommended for their ability to give comfort. Depending on a person’s general state of health, antibiotics may help him or her survive an infection. In some cases, without antibiotics a person who is seriously ill could die within a few hours to a few days.

  “If I have a terminal illness and get an additional infection that is causing me pain, give me antibiotics. I don’t want them as a means to prolong my life, but as a means to keep me pain free. On the other hand, if I have a terminal illness and also contract pneumonia or some other painless infection, do not give me antibiotics. Pneumonia is a reasonably painless way to die, and since I’m going to die anyway, let me go peacefully.”
  Do you agree? Disagree? How might you modify this statement for yourself?

• Tube feeding: Often called “artificial nutrition or hydration,” tube feeding can provide a balanced formula of nutrients in liquid form even if a person is unable to swallow. A tube either is placed down the nose and into the stomach or is inserted through a small hole in the abdomen. This procedure can be a short-term solution to a sudden illness, or it can be used to help people who are in a coma or have some other long-term condition that makes eating difficult. It can provide a quality of life acceptable to some people, but near the end of life, it often merely prolongs dying. Without artificial feeding, a seriously ill person will die in a matter of days or weeks. However, the process appears to be painless, and people report that the sensations of hunger go away after the first 24 hours. (For more information about tube feeding, see our article on Nutrition.)

  “I personally abhor the idea of being kept alive with a bunch of tubes sticking out of me. It strikes too deeply at my dignity. At some point we all need to go. If I am unconscious or am not eating for some other reason, do not prolong my life through artificial feeding. Let nature take its course.”
  Do you agree? Disagree? How might you modify this statement for yourself?

Other resources

Consumer’s Tool Kit for Health Care Advance Planning. This is a very thorough, yet readable, set of articles developed by the American Bar Association to help consumers consider the issues when preparing an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: “Proxy IQ Test” for Family and Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care

State-specific Advance Directives. Caring Connections, the consumer website of the National Hospice and Palliative Care Organization, offers free downloads of the approved advance directives of all 50 states.