Specifying Your Health Care Wishes

In your health care directive, you can express your wishes and feelings about medical treatment in as much detail as you choose. For example, in most cases you can:

• leave all health care decisions in the hands of your agent, if you have named one
• make a general statement that you do not wish to receive life support when death is imminent
• make a general statement that you wish to be kept alive as long as possible, or
• specify different treatment wishes for different situations.

Types of Medical Care: What You Should Know

Here, we briefly discuss some medical procedures that you should be familiar with before you provide directions about your care. Dry or off-putting as it may seem, it's a good idea to at least read quickly through the sections below to gain a basic understanding of:

• what the term "life-prolonging" means from a medical perspective
• what "artificially provided food and water" is and when it may be necessary, and
• what constitutes comfort or "palliative" care.

However, you may not need to get into even that much detail if you are already certain of any of the following:

• You want your agent to make all decisions for you.
• You want all procedures to be withheld.
• You want all procedures to be provided.

Life-Prolonging Medical Care

When completing your health care instructions, consider your preferences about life-prolonging treatments or procedures. Many people need a little more information before answering these questions.

A life-prolonging procedure or treatment is one that would only prolong the process of dying or sustain a condition of permanent unconsciousness. In other words, the patient would die soon—or die without regaining meaningful consciousness—whether or not the treatment was administered. This section describes the most common life-prolonging treatments—a respirator, cardiopulmonary resuscitation (CPR), surgery and so on—in some detail.

Bear in mind that the types of medical procedures that are available will change over time. Technological advances mean that currently unfathomable procedures and treatments will become available and treatments that are now common will become obsolete. Also, the treatments that are available vary drastically depending on the sophistication of medical facilities.

Blood and blood products. Partial or full blood transfusions may be recommended to combat diseases that impair the blood system, to foster healing after a blood loss, or to replenish blood lost through surgery, disease or injury.

Cardiopulmonary resuscitation. CPR is used when a person's heart or breathing has stopped. CPR includes applying physical pressure and using mouth-to-mouth resuscitation. Electrical shocks are also used if available. CPR is often accompanied by intravenous drugs used to normalize body systems. A final step in CPR is often attaching the patient to a respirator.

Diagnostic tests. Diagnostic tests are commonly used to evaluate urine, blood, and other body fluids and to check on all bodily functions. Diagnostic tests can include X-rays and more sophisticated tests of brain waves or other body systems. Some tests—including surgery—can be expensive, painful and invasive.

Dialysis. A dialysis machine is used to clean and add essential substances to the blood—through tubes placed in blood vessels or into the abdomen— when kidneys do not function properly. The entire cleansing process takes three or more hours and is performed on most dialysis patients two or three times a week. With portable dialysis machines, it is possible for some patients to have the procedure performed at home rather than in a hospital or other advanced care facility.

Drugs. The most common and most controversial drugs given to seriously ill or comatose patients are antibiotics—administered by mouth, through a feeding tube, or by injection. Antibiotics are used to arrest and squelch infectious diseases. Patients in very weakened conditions may not respond even to massive doses of antibiotics.

Many health care providers argue that infectious diseases can actually be a benefit to those in advanced stages of an illness, since they may render a patient unconscious, and presumably not in pain, or help to speed up the dying process. Others contend that if an antibiotic can eliminate symptoms of an illness, it is almost always the proper medical treatment.

Drugs may also be used for pain. If, within your health care directive, you state that you do not want drugs to prolong your life, they will still be administered for pain control unless you specifically indicate that you do not want them.

Respirator. A mechanical respirator or ventilator assists or takes over breathing for a patient by pumping air in and out of the lungs. Patients are connected to respirators either by a tube that goes through the mouth and throat into the lung or attaches directly to the lung surgically.

Respirators are often used to stabilize patients who are suffering from an acute trauma or breathing crisis, and they are removed as soon as they are no longer needed. If a respirator has been attached to a person who is terminally ill or in a permanent coma, however, most doctors will resist removing the machinery unless there is clear written direction that this is what the patient would want.

Surgery. Surgical procedures, such as amputation, are often used to stem the spread of life-threatening infections or to keep vital organs functioning. Major surgery such as a heart bypass is also typically performed on patients who are terminally ill or comatose. You might want to consider the cost, time spent recovering from the invasive surgery, and inevitability of death when deciding whether to include surgery in your final medical treatment.

Artificially Administered Food and Water

If you are permanently comatose or close to death from a serious illness, you may not be able to survive without the administration of food and water. Unless you indicate that treatment should be withheld, doctors will provide you with a mix of nutrients and fluids through tubes inserted in a vein, into your stomach through your nose, or directly into your stomach through a surgical incision, depending on your condition.

Intravenous (IV) feeding, where fluids are introduced through a vein in an arm or a leg, is a short-term procedure. Tube feeding, however, can be carried on indefinitely.

Permanently unconscious patients can sometimes live for years with artificial feeding and hydration without regaining consciousness. If food and water are removed, death will occur in a relatively short time due to dehydration, rather than starvation. Such a course of action generally includes a plan of medication to keep the patient comfortable.

When you make your health care documents, you can indicate whether you want artificially administered food and water withheld or provided. This decision is difficult for many people. Keep in mind that as long as you are able to communicate your wishes, by whatever means, you will not be denied food and water if you want it.

Palliative Care

If you want death to occur naturally—without life-prolonging intervention—it does not mean you must forgo treatment to alleviate pain or keep you comfortable. In fact, in your health care directive, you can state that you wish to receive any care that is necessary to keep you pain-free, unless you specifically state otherwise.

This type of care, sometimes known as "comfort care," is now more commonly called "palliative care." Rather than focusing on a cure or prolonging life, palliative care emphasizes quality of life and dignity by helping a patient to remain comfortable and free from pain until life ends naturally. Studies have shown that palliative care services are greatly appreciated by the family and friends of dying patients. Numerous organizations promote public awareness of palliative care options, and information about treatment options is widely available on the Internet. (See "Where to Get More Help," below.) However, despite the wide recognition of the benefits of palliative care, a major nationwide study in 2002 revealed that relatively few people get the palliative care they should. Most hospitals do not have integrated palliative care plans among their treatment options. Very few doctors understand it well, and it is still not emphasized in medical training. More than a decade later, the benefits of palliative care have become more widely known and accepted, but it still does not get the attention it deserves. As a result, many people die in hospital intensive care units, sometimes in severe pain, not knowing their suffering could have been greatly eased. You may wish to spend some time educating yourself about palliative care so that you can discuss your wishes with your health care agent and your treatment providers. When you complete your health care directive, you will have the opportunity to express any particular wishes you have about palliative care.

Where to Get More Help

There are many resources to help you understand your options when it comes to palliative care. To learn more, you may want to start with Get Palliative Care (getpalliativecare.org), a comprehensive website developed and maintained by the Center to Advance Palliative Care (CAPC). The following books may also be useful:

• Care at the Close of Life: Evidence and Experience, by Stephen J. McPhee, Margaret A. Winker, Michael W. Rabow, Steven Z. Pantilat, and Amy J. Markowitz (McGraw-Hill Professional)
• Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying, by Maggie Callanan and Patricia Kelley (Bantam)
• Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, M.D., and Joan Harrold, M.D. (Oxford University Press), and
• The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter, by David Kessler (Harper Paperbacks).

It Does Not Get More Personal Than This

For many people, the desire to direct what kind of medical care they want to receive is driven by a very specific event—watching a loved one die, having an unsatisfactory brush with the medical establishment, or preparing for serious surgery. Your ultimate decisions are likely to be influenced by factors such as your medical history, your knowledge of other people's experiences with life-prolonging medical procedures, or your religious beliefs. If you are having great difficulty deciding about your preferences for medical care, take a few moments to figure out what's getting in your way. If you are unsure about the meaning or specifics of a particular medical treatment, turn to a doctor you trust for a more complete explanation. If the impediment is fear of sickness or death, talk over your feelings with family members and friends.

If Your Wishes Are Simple

After you've familiarized yourself with the types of medical treatment that are typically administered at the end of life, it is time to express your own wishes. To begin, the program offers several ways for you to indicate your preferences if you don't want to delve into the specifics of different types of treatments. These are:

• leaving all decisions in the hands of your health care agent, if you've named one
• making a general statement that you do not want your life prolonged when you are close to death, or
• making a general statement that you want your life to be prolonged as long as possible, no matter what your

Letting your agent make all treatment decisions. The first question you will be asked is whether you want to express specific wishes for medical treatment or whether you want your agent to make all decisions for you. If you specify your wishes for treatment, your agent will make decisions for you only on matters you do not specifically address.

Of course, the best way to be sure you'll get the medical care you want if you are someday unable to speak for yourself is to clearly state any preferences that you have. This is especially true if your choices could be considered in any way controversial. For instance, the withholding of artificially administered food and water (feeding tubes) has proved to be a culturally and politically contentious issue in recent years. If you know that you do not want to receive artificially administered food and water (feeding tubes) when you are close to death, it's wise to continue with the program so you can make that wish explicit.

However, if illness or exhaustion have left you feeling that it is too much to formulate and express specific wishes—or if the most important thing to you is simply to name a trusted agent who can act for you— you can leave all decision­making authority in the hands of your agent. If you do, the program won't ask for more information about your treatment wishes, and you can quickly finish up your documents.

On the other hand, if you indicate that you want to specify your wishes for medical treatment, you will first be given the opportunity to make one of the two simple statements below about your wishes.

Asking that your life not be prolonged when you are close to death. If you choose this option, your document will specify that you do not want to receive life­prolonging treatments when you are close to death from any of the conditions defined by your state's law. Usually, this means that your life will not be artificially prolonged if you are close to death from a terminal condition or are diagnosed as being permanently unconscious. (If you want more information about these specific medical conditions, see the next section.)

You will also be asked to specifically state whether or not you want to receive artificially administered food and water if you are in any of these conditions.

If you make this choice, you will still receive palliative care—that is, treatment to keep you comfortable—unless you specifically state that you do not want it.

Asking for all life-prolonging measures. This option is the opposite of the one just above. If you choose it, your document will state that you want your life to be prolonged for as long as possible within the limits of generally accepted health care standards. This includes receiving artificially administered food and water when you are close to death from a terminal condition or permanently unconscious.