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Advanced Directives

An Advance Directive, also called a living will, is a legal document that lets you give directions to your family and doctors in advance regarding the kind of medical treatment you would want in the event you are diagnosed with a terminal condition and enter a progressive vegetative state due to illness or injury or ever become unable to communicate such wishes. For example, you may wish to refuse certain medical treatments that might have been desirable in other situations. An Advanced Directive also allows you to appoint someone else (a health care proxy) to make medical decisions for you if you become unable to communicate these decisions yourself.

Making decisions about end of life treatments and wishes can be very stressful and confusing. This page provides a basic description of the most commonly used forms of life support. It does not cover every type of life-sustaining treatment, but includes those that are most likely to raise questions between patients, families, and their health care providers. It is very important to speak with your doctor about these matters, particularly if you have a serious medical condition. A doctor should be able to tell you about life-sustaining treatments that would be especially relevant to your condition.

Medical Treatments

Cardiopulmonary Resuscitation (CPR)

CPR is the effort to restore circulation and breathing when the heart or lungs have ceased to work well enough to sustain life. It consists of repetitive chest compressions, intravenous medications, and assisted breathing. In most cases, electrical shock ("defibrillation") and placement of breathing tube ("intubation") are performed. CPR can continue to send blood to vital organs until more specific treatment can be given. It is important that CPR be started as soon as possible in the event of a cardiac or respiratory arrest to try to prevent permanent brain or organ damage. It can be lifesaving, if performed promptly. However, the majority of patients do not survive due to underlying medical problems, even if CPR is performed rapidly and correctly.

Mechanical Respiration (Ventilation)

A machine called a respirator or ventilator can take over breathing if the lungs fail. The ventilator provides oxygen through a tube inserted into the windpipe. Though mechanical ventilation can cause discomfort, it may actually relieve the discomfort that severe breathing difficulties may cause. Sometimes ventilation can help to pull a person through a serious illness, such as pneumonia, and restore that person to his or her previous level of functioning. However, in some cases normal breathing cannot be restored, and the patient may become dependent on the ventilator.

What happens when a respirator is removed from a dying patient?

Typically, a patient quickly becomes unconscious when removed from a respirator. If there is any sign of discomfort, a variety of measures can be taken to ease discomfort, such as use of an oxygen mask, muscle relaxants and pain medication.

Tube Feeding (Artificial Nutrition)

Tube feeding involves administration of liquids and nutrients through a tube to patients who are unable to swallow food and fluids on their own. The tube can be placed through the nose ("nasogastric tube") or through the wall of the abdomen ("gastrostomy" or "jejunostomy" tube). It can be used permanently or temporarily, until the person is able to swallow safely.

Many people regard tube feeding for ill patients as a disruption and artificial prolongation of the dying process. However, others view artificial feeding differently and would want it continued under all circumstances. Therefore, it is important to state your personal views about tube feeding in your Advance Directives.

What happens when tube feedings are withheld from those dying or permanently unconsciouses?

Permanently unconscious and severely brain-damaged people can often be maintained for many years on tube feeding if other medical problems are treated. Without liquids, death occurs in approximately three days to two weeks as a result of dehydration or infection. Most evidence indicates that people who are unconscious or who have severe brain damage do not experience discomfort from this process.

Antibiotics

Antibiotics are a group of medications used to fight infections. They can be administered by mouth, through an intravenous line, or by injection. Antibiotics can give comfort particularly if the infection itself causes discomfort. Fever and other symptoms caused by infection can often be treated without antibiotics. Antibiotics do not usually cause serious side effects, but allergic reactions, diarrhea, and nausea are examples of problems that can occur.

Dialysis

Dialysis involves a machine (a dialysis unit) that can be used to cleanse the blood when the kidneys fail to do so. The blood can be cleansed directly, through tubes inserted into blood vessels ("hemodialysis") or indirectly, through tubes placed into the abdomen ("peritoneal dialysis"). Dialysis is usually performed two or three times a week. Each dialysis treatment takes three hours or longer.

Dialysis is an option that patients may choose when their kidneys fail. Though a patient may choose to start dialysis at one point, he or she can choose to stop it if medical conditions change and/or if the patient later changes his or her mind. A patient who chooses to not start dialysis should understand that he or she might die without it.

Surgical Procedures

Surgical procedures may be recommended even for patients who are terminally ill. They may be used to relieve pain, prevent spread of infection, or to place tubes or catheters.

THE FOLLOWING TREATMENTS ARE LESS LIKELY TO BE THE SUBJECT OF CONFUSION BETWEEN PATIENTS AND PHYSICIANS. HOWEVER, THEY DO COME UP OCCASIONALLY.

Diagnostic Tests

Diagnostic tests or procedures that are safe and simple to perform include blood tests, x-rays, examination of the urine, and sophisticated scans such as CT ("CAT" scan). Some procedures, particularly invasive ones, may produce discomfort and/or carry the risk of side effects.

You have the right to refuse or restrict any testing or procedure. You should always talk with your doctor about the risks and benefits any testing offers, and discuss if the testing will alter your treatment course or the outcome of your illness. You also have the right to expect that your doctor will do everything possible to relieve any pain or discomfort that such testing can cause.

Intravenous (I.V.) Line

An intravenous line is a tube that is placed into a vein for the purpose of administering fluids, blood or medication. Veins in the arm are usually used, but sometimes the intravenous line is inserted into a vein in the neck area or leg. Although inflammation, clotting, or damage to the vein can sometimes cause pain, an intravenous line is usually not uncomfortable once it is in place. Some types of lines are removed every three days, and replaced in a different vein; other kinds are kept in place and flushed regularly. You can refuse an intravenous line if its burden it creates is greater than its benefit.

Chemotherapy and Radiation

Chemotherapy is drug treatment for cancer. Chemotherapy can reduce the discomforts of a cancer, even if it does not cure it. In most cases it is well tolerated. However, it can cause nausea, vomiting and serious complications.

Radiation therapy uses radiation to shrink or eliminate a tumor. Although it may sometimes produce side effects, radiation therapy is generally well tolerated and is often given to help relieve symptoms of cancer.

There are some instances where the cancer is incurable. This may be the case when the cancer recurs following a series of chemotherapy and radiation treatments. A patient with cancer can state that he or she does not want ongoing chemotherapy or radiation at any stage of his or her illness.

Comfort Care

Comfort care is any kind of treatment that increases a person's physical or emotional comfort. It generally does not require advanced technology. Comfort care includes oxygen, food and fluids by mouth, moistening of the lips, cleaning, turning and touching a person, or simply sitting with someone who is in need.

Pain management is a right of the patient. There are many medications and other treatments that can make a person more comfortable. Oncologists and anesthesiologists are physicians who specialize in pain control.

You may use an Advance Directive to state what medication or treatment you may or may not want.

This page provides basic descriptions of various life-sustaining treatments and procedures to, and hopefully will assist you in deciding what you would want for yourself should you become terminally ill and unable to communicate.

It is important that you discuss these treatments with your physician to get a better understanding of their benefits and burdens and to determine which of these may be most appropriate for your medical condition.

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