4.

Decisions about end-of-life medical treatment are deeply personal and based on a person's values and beliefs. Use this information to educate yourself about the different types of treatments that might be offered under certain medical conditions. Although it is impossible to foresee every type of circumstance or illness, use this information also to examine your thoughts and feelings about some of the most common types of end-of-life medical treatments. Think about the quality of life that is important to you. Use the questionnaire at the end of this chapter to help you think about some of the quality-of-life issues that should be considered when you make end-of-life decisions. Include these issues in your discussions with your doctor, agent and loved ones.

What is life support?

Life support or life-sustaining treatments replace or support a failing bodily function. When patients have curable or treatable conditions, the support is used temporarily until the emergency, illness or disease can be stabilized and the body can resume normal functioning. At times, however, the body never regains the ability to function without life support. This frequently is the case when life support is used in incurable illness.

It is ethically and legally appropriate to honor the decision of a person or his or her health care agent to remove life support, even when doing so results in the person's death. A decision to withdraw or withhold treatment based on your wishes is not considered euthanasia or assisting a suicide. Death is due to the underlying disease process. However, these decisions must be informed decisions. It is essential that you and your agent understand and discuss life support and the quality of life that is important to you.

It also is essential that you talk to your physician and confirm that your instructions will be followed, because the law does not force doctors to act in a manner that they believe to be morally or ethically objectionable based on their own beliefs.

What is cardiopulmonary resuscitation (CPR)?

CPR is a group of procedures performed on a person whose heart stops beating (cardiac arrest) or someone who stops breathing (respiratory arrest). Cardiac arrest may occur suddenly, due to lack of blood flow to the heart (heart attack), or electrical disturbances in the heart's conduction system. It also can be the end result of a long, debilitating illness such as cancer, AIDS or failure of vital organs such as the liver, kidney or lungs. Respiratory arrest may result from accidents such as drowning or choking, or can be the end result of chronic lung disease such as emphysema. The heart and lungs work together. If the heart stops, respiratory arrest will occur. Likewise, if breathing is not restarted after respiratory arrest, cardiac arrest inevitably will result.

Performing CPR involves pressing on the chest to mimic the heart's function causing blood to circulate. At the same time, air is forced into the lungs, usually through an artificial airway or tube inserted through the mouth into the lungs (intubations). Electrical paddles may be used to "jump start" the heart (defibrillation), along with various types of drugs that are injected into the veins.

CPR was developed for people in generally good health who suffer sudden unexpected cardiac or respiratory arrest. When initiated quickly in response to a heart attack, drowning, drug overdose or reaction to anesthesia, CPR can be life-saving and is likely to restore a person to his or her previous state of health. However, the success rate is extremely low for people who are at the end of a terminal disease or incurable illness. In advanced cancer, AIDS or multiple organ failure, cardiac arrest marks the moments when the body is shutting down. Research indicates that very ill patients who suffer cardiac arrest and are resuscitated have only a very small chance of recovering and leaving the hospital.

It is especially important to tell your health care agent, family and doctor about the circumstances under which you might or might not want CPR. If you do not wish to be resuscitated under defined circumstances and you are in the hospital, your doctor must write a separate "Do-Not-Resuscitate" (DNR) order on the chart. Even if you have an advance directive stating you do not want CPR, without a DNR order CPR will be administered in the event that your heart stops beating or you stop breathing.

Remember, the "Do-Not-Resuscitate" order is not a "Do-Not-Treat" order. You will continue to receive other types of care and treatment.

What is mechanical ventilation?

Mechanical ventilation is used to support or replace the function of the lungs. A machine called a ventilator (respirator) forces oxygen into the lungs. The ventilator is attached to a tube that is inserted through the mouth or nose down into the windpipe (trachea). For people who are dependent on a ventilator for an extended period of time, the tube may be placed directly into the trachea by creating an opening in the front of the neck. This procedure is called a tracheotomy.

Mechanical ventilation often is used to assist a person through a short-term problem. For example, mechanical ventilation may be used in surgery requiring general anesthesia. In this case, most patients return to breathing on their own after the anesthesia wears off. Mechanical ventilation also is used to maintain adequate breathing after a serious accident or during an illness such as severe pneumonia. Mechanical ventilation can be used for prolonged periods as well, sometimes permanently in cases of irreversible respiratory failure due to injuries to the upper spinal cord or progressive neurological or pulmonary disease. Some people on long-term mechanical ventilation are able to carry out many activities of daily living.

For a patient who is dying, however, mechanical ventilation merely prolongs the dying process until some other body system fails. It may supply oxygen, but it cannot cure the underlying disease process. When completing your advance directives, you may wish to state that you do not want mechanical ventilation in the event you will never regain the ability to breathe on your own or return to a quality of life that is important to you.

What are artificial nutrition and hydration?

Artificial nutrition and hydration are forms of life-sustaining treatment used to supplement or replace ordinary eating and drinking. Artificial feeding is a chemically balanced mix of nutrients and fluids given through a tube placed directly into the stomach, the upper intestine or a vein.

Artificial nutrition and hydration may be used for a variety of conditions that cause a person to be unable or unwilling to eat. Short-term artificial nutrition and hydration often are given to patients recovering from surgery or burns, greatly improving the healing process. Long-term artificial nutrition and hydration may be given to people with serious intestinal disorders which impair their ability to digest food, thereby helping them to live relatively normal lives. But long-term artificial nutrition and hydration frequently are given to people with irreversible neurological disorders, such as advanced Alzheimer's disease or severe strokes, who are unable to swallow. The treatment will not reverse or improve the course of the disease itself in these situations.

Courts and the majority of professional medical organizations consider artificial nutrition and hydration forms of life support that can be withdrawn or withheld, according to a patient's wishes. Some doctors and nurses might personally believe that it is never appropriate to withhold or stop artificial nutrition and hydration. It therefore is important to clearly state your wishes regarding artificial nutrition and hydration on an advance directive.

According to the most recent medical studies of patients at the end of life, death occurs within three to 14 days after removal of artificial nutrition and hydration, depending upon the underlying disease process. Avoiding artificial nutrition and hydration allows death to occur naturally. Reports from caregivers and conscious dying patients indicate that those who are dying experience a lack of appetite and thirst. There is no evidence that artificial nutrition and hydration provide comfort to people who are near death. In some cases, symptoms such as nausea, vomiting, abdominal pain, incontinence, congestion and shortness of breath might decrease when artificial nutrition and hydration are discontinued.

What is kidney dialysis?

Kidney or renal dialysis is a system of filtration used to cleanse the blood of waste and toxins when the kidneys no longer filter the blood adequately. With dialysis, the blood can be cleansed directly, through tubes placed into blood vessels (hemodialysis) or indirectly, through tubes placed into the abdomen (peritoneal dialysis). The procedure usually is performed two or three times a week and takes three hours or longer. Peritoneal dialysis can be performed daily, often during sleep.

Dialysis can be used in response to sudden illness or injury that may have caused temporary damage to the kidneys. Dialysis also is used when there is permanent damage to the kidneys, and dialysis is needed until a transplant becomes available. Some people with kidney failure undergo dialysis for many years while leading relatively normal lives.

However, kidney dialysis for people dying from other illnesses does not cure the underlying disease process and might not significantly improve a dying person's physical condition. Kidney failure at the end of life generally signals the failure of multiple body systems. In some cases, dialysis may provide the dying person time to recognize or interact with loved ones, if only for a short time. Otherwise, the treatment might simply prolong the dying process. It is important to know what benefit dialysis will provide at the end-stage of a terminal condition or during permanent unconsciousness.

Death from kidney failure occurs from the build up of waste and toxins in the blood. This build up may produce symptoms such as confusion, lethargy or shortness of breath that cannot be managed by other medical means and eventually produces a state of unconsciousness. Dying patients who wish to forego dialysis can receive sedation to relieve these symptoms.

What other medical treatments should I discuss with my doctor?

Although it is impossible to consider every type of procedure or treatment, you might wish to discuss the following treatments in the event you are suffering from an incurable or irreversible condition.

Surgical Procedures. A variety of surgical procedures might be offered to you at the end of life. For example, surgery might be needed to relieve pain, repair broken bones or stop the spread of infection. Every type of surgery has its risks and benefits. Major surgery in very sick people can result in serious complications that require aggressive medical treatment, mechanical ventilation or prolonged hospitalization, but simple procedures may pose few problems. You, your health care agent and loved ones should consider the risks and benefits of the surgery in light of any underlying disease process.

Diagnostic Studies. Numerous tests and procedures can be performed in the hospital setting. Some are simple, such as X-rays, blood tests, EKGs or ultrasound. Some tests, such as angiograms, are more invasive and may produce complications. You, your health care agent and loved ones should understand why each test is being performed and whether it will benefit your care.

Intravenous Lines (IVs). "IVs" or IV lines commonly are used in the hospital setting to give fluids, blood, nutrition and medication. An IV line is created by inserting a needle, or a thin plastic tube called a catheter into the vein. IV lines commonly are inserted in arm veins, although occasionally an IV line will be placed in one of the larger veins in the neck. An IV line usually is not uncomfortable once it is in place. However, the line must be changed at regular intervals to prevent painful inflammation, clotting, or serious infection.

Remember that IV fluids are a source of artificial hydration and may provide at least partial nutrition. If you wish to refuse artificial nutrition and hydration at the end of life, you have the right to refuse even an IV line.

Antibiotics. Antibiotics are medications used to fight infections. They can be given by mouth, through a feeding tube, through IV lines or by injection. Antibiotics might relieve the discomfort associated with fever and chills. However, for patients who are at the end of life, symptoms from infection, such as fever and sweating, can be controlled through comfort measures without the use of antibiotics. Generally, antibiotics do not produce serious side effects. However, antibiotics can cause rashes or other allergic reactions, diarrhea and occasionally more serious problems such as kidney failure. Although antibiotics might cure the infection, they will not reverse the underlying condition of a terminally ill or permanently unconscious person.

Blood Transfusions. An adequate volume of blood is needed to ensure that all of the body's organs are getting enough oxygen and blood components such as plasma or platelets needed for other vital functions. Blood loss can be caused by an underlying disease process or a sudden occurrence or injury. Transfusions frequently are given to people who have had surgery or who have lost blood or blood components because of an illness or medical treatment. Blood transfusions are administered through an IV line and must be monitored closely.

People who have a decreased amount of red blood cells (anemia) often feel listless and tired. If the blood supply drops too low, unconsciousness and failure of body systems will occur.

The expected benefits and burdens for a patient should be weighed in each case and the decision to discontinue transfusion can be made at any time.

Chemotherapy and Radiation Therapy. Chemotherapy and radiation are treatments used to cure or slow the growth of cancer. Radiation therapy uses high levels of radiation to shrink or eliminate a tumor. Chemotherapy is the name given to various medications used to treat cancer. There are a number of ways to give chemotherapy, depending upon the drug and the type of cancer it is intended to fight.

Chemotherapy and radiation treatments can produce side effects. Chemotherapy often causes nausea, vomiting, hair loss, weight loss and deficiencies in blood cells. Radiation generally is better tolerated but can damage tissues near the tumor under attack, causing mild to serious problems. These side effects may be tolerable if the treatment offers the best hope for a cure or remission. Radiation can be very effective in controlling pain. The rationale for continuing either series of treatments should be reevaluated when a patient has entered the end stage of a disease.

What should I know about pain management?

Pain must be investigated seriously and treated aggressively like any other medical problem regardless of the patient's underlying condition. The intensity of the pain, how long it lasts, what brings it on and what seems to relieve it are all matters that should be explored. While measures such as applying heat or cold or avoiding certain movements might help relieve pain for short periods of time, pain medications including narcotics should be used when necessary. People dying from painful diseases can and should receive doses of medication sufficient to ease their pain.

Some doctors are reluctant to medicate heavily when patients are close to death because they fear that potent pain medications will depress respiration or decrease blood pressure and hasten death. However, medical and legal authorities agree that it is permissible to give medication if it is given with the intent of relieving pain even if doing so may hasten death. This is known as "double effect." As long as the intent is to provide pain relief, the action is not considered assisting in a suicide or euthanasia.

Once a medical treatment is started, can it ever be stopped?

Yes. There is no legal or ethical difference between withholding and withdrawing a medical treatment in accordance with the patient's wishes. If a distinction existed, people might not even try a potentially helpful treatment for fear that once started, it could not be removed. Professional organizations, such as the American Medical Association, and the courts have affirmed that, in the case of a patient who has expressed wishes to refuse aggressive medical treatments, it is legally and ethically appropriate to discontinue medical treatments that no longer are beneficial.

In practice, caregivers sometimes resist withdrawing a treatment once begun. Caregivers might be confused or misinformed about the law requiring them to follow a patient's or health care agent's decision to stop treatments. Their reasons might be based on personal values and beliefs and should be discussed before a problem arises.

Must I do anything else?

Yes. Discuss your decisions with your agent, loved ones and doctor. Within the changing health care system, it is unlikely that everyone will know who their physician will be when a serious illness strikes. Make certain the conversations you have with your health care provider today are documented in your medical record. Everyone should prepare themselves and their loved ones for difficult decisions by discussing their values and beliefs. Advance directives and discussions about end-of-life treatment are evidence of your wishes when you no longer are able to make your wishes known. The goals of this essential process are thoughtful and informed decisions that reflect your wishes and that are communicated to your agent, family and physician.

Values Questionnaire

End-of-life treatment decisions are difficult topics to discuss. To assist individuals in initiating these discussions, we have included the list of questions that follows. Taken from a values history questionnaire created at the University of New Mexico's Institute of Public Law, the questions help you explore your values and your beliefs about certain medical conditions and treatment preferences. The questions are not comprehensive, but are meant to guide you as you consider the quality of life that is important to you. You and other members of your family can use the questions to stimulate discussion about each of your values and beliefs.

Overall attitude toward life

Thoughts about independence and control

Overall attitude toward health

Attitude toward illness, dying and death

-terminal illness?

-permanent coma?

-irreversible chronic illness (e.g., Alzheimer's disease, stroke)

Perception of your doctor & other caregivers

Personal relationships

Religious background and beliefs