If you become unable to speak for yourself, to avoid being put through treatments and processes you do not want, and to get those you do, it is necessary to: 

• First, think about your values and what is important to you. For help thinking about your values, click here. 
• Then think ahead to various common scenarios such as those described in this document and decide how you would want to be treated if such situations arise. For about circumstances to think about, click here. For information about treatments to think about, click here. (NOTE: If you do not want to think about specific circumstances, it can be enough to convey your general values to the person who you appoint to act as your Proxy under a Health Care Power Of Attorney.)

Even thinking about these subjects can be emotionally unsettling for a healthy person, much less for a person who has been diagnosed. Before proceeding, think about which is the easiest way for you to deal with this subject. Is it better to think it through first on your own? To first talk about it with someone such as your spouse, significant other or best friend? To think in terms of what you would want for your best friend or child?

Consider discussing this subject and particular treatments with your doctor. Your doctor likely has first hand experience with the problems and conflicts that can arise, and may be able to contribute ideas or advice. To allow time for a thoughtful discussion, make an appointment just for that purpose.

Once your opinion is formed you are ready to move to drafting the actual documents to effectuate those wishes. See Living Wills, Healthcare Power Of Attorney and Do Not Resuscitate. Also see Advance Directive For Mental Health

To help clarify your thinking about your values in case of medical need when you are unable to speak for yourself, consider the following questions:

• What do you most value about your physical or mental well being?
• What are your fears regarding the end of life? For example:
  • Being in pain
  • Losing the ability to think
  • Losing the ability to take care of yourself (such as dressing, bathing, and eating)
  • Losing the ability to get around on your own
  • Being a financial burden
• Would you want hospice care - care which only takes care of your comfort and stops fighting to cure your medical condition? (To learn about hospice care, click here.)
• What gives life meaning and purpose for you?
• What religious or spiritual concepts are overriding for you? How do those concepts translate into practical terms? For instance, does your religion forbid blood transfusions under any circumstances? Does it consider not doing everything humanly possible to continue to live the same thing as suicide, which is forbidden by your religion?

Following are some basic scenarios to be considered when thinking about what could happen. If you have another scenario that concerns you or has a greater chance of occurring due to the nature of your condition, jot it down and include it as you consider your options.

1. You are in a coma or a vegetative state and your physician along with consultants agree that there is no real hope that you will regain any more awareness or mental function.
2. You are in a coma or a vegetative state and near death. While there may be a small chance of regaining some mental functioning, the chances are much greater that there will be substantial permanent mental and physical disability with a likelihood that death will follow soon.
3. You have damage to, or disease in, the brain that doctors agree cannot be reversed or improved. You are unable to recognize people, to communicate with them ,or live independently. You are not in danger of death. In fact, you may artificially be kept alive indefinitely.
4. The same situation as #3 except you also have a terminal illness which will take your life.
5. You have a condition that is life-threatening but reversible. You are unable to make or communicate any decisions about your treatment to your doctors or family.

Listed below are some of the life-extending treatments and procedures available today. Which treatments, if any, and with what restrictions, if any, is up to you. There is no right or wrong decision here.

When thinking about each treatment and procedure, also consider whether there are any modifiers you would impose. For instance:

• Some people also add a particular treatment is only to be used if there is a chance of restoring mental activity.
• Some people add that it is only to be used if there is a chance of also restoring a particular physical quality of life.
• Some add both of the above restrictions.
• Some people add that a treatment (or no treatment at all) is to be used if they are expected to die within a short period of time.

Also speak with your doctor to find out:

• If there are additional decisions you may have to make if your illness progresses.
• If you designate a Proxy, are there any specific decisions your Proxy should be prepared to make in dealing with your health condition?

CardioPulmonary Resuscitation (CPR)

CPR is given when a person stops breathing (respiratory arrest) or the heart stops beating (cardiac arrest).

• Most people think of CPR as mouth-to-mouth resuscitation and pressing on the chest to maintain breathing and circulation.  However, from a medical point of view, CPR refers to a group of procedures that may include artificial respiration and intubation to support or restore breathing, chest compressions or the use of electrical stimulation, or medication to support or restore heart function.
• CPR can either replace the normal functioning of the heart and lungs or stimulate them to begin working again.

According to the Robert Wood Johnson Foundation:

• CPR was developed to treat people who have an unexpected arrest due to a heart attack, an adverse reaction to anesthesia, a drug overdose, or an accident like drowning or electrocution. It was never intended for seriously ill people.
• CPR has a small chance of working for people who are seriously ill or dying. One study shows that individuals with overwhelming infection have less than a 3 percent chance of being discharged from a hospital after CPR; those with advanced cancer that has spread to other parts of the body have virtually no chance.
• According to the medical literature, the chance of surviving CPR is, at best, 18 percent.
• Despite the poor real-life odds, CPR normally is provided to every patient who has a cardiac or respiratory arrest unless there is a "do not resuscitate" (DNR) order in place or unless the patient has clearly been dead for some time.
• A DNR order is not a "do-not-treat" order. A patient should continue to receive any other treatments that are desired.

Intubation

The insertion of a flexible tube down the mouth or nose and into the windpipe. The tube may be hooked up to a mechanical respirator if the patient cannot breathe independently.

Mechanical Respiration

Mechanical respiration is when a machine forces air in and out of the lungs. Mechanical respiration involves putting a tube into the lung area. Oxygen is then pumped to the lungs through the tube. Usually the tube is fed through the nose or mouth and then down the trachea or windpipe. It can also be fed through a surgically created opening in the neck.

When ventilation is withdrawn, death usually occurs in a few minutes to 24 hours or even longer. Medications can be given during that time to relieve anxiety or physical discomfort.

Mechanical respiration can extend life for months and years. Some people limit use of this procedure to situations which are temporary.

Kidney Dialysis

A machine that filters a patient's blood when the kidneys cannot filter blood on their own.

Artificial Hydration and Nutrition

When a person cannot eat or drink on his or her own, nutrients and fluids can be provided through a tube inserted through the following:

• The mouth or nose
• An incision directly into the stomach
• An IV tube into a vein.

Artificial feeding and hydration appears to be more difficult to discontinue than any other treatment. However, as a general matter, patients have the right to refuse even starting this treatment. The right is not limited to comatose or terminally ill patients.

When considering your thoughts about this subject, note that according to Robert Wood Johnson Foundation:

• Unlike ordinary eating and drinking, artificial nutrition and hydration does not offer the sensory rewards, social interaction and comforts that come from the pleasure, taste and texture of food and liquids. Doctors and nurses -- not patients themselves -- control how much will be "eaten."
• Although it cannot reverse the condition or change the course of the disease, artificial nutrition and hydration is frequently given to people with irreversible neurological disorders, such as advanced Alzheimer's disease or severe stroke. Recent studies find that this treatment does little to enable these patients to live longer and, in fact, can be a source of additional risks that can shorten life.
• Serious potential side effects of artificial nutrition and hydration are infections, breathing difficulties caused by fluid overload, and pneumonia caused by inhaling the "feed" into the lungs.

According to the American Academy of Neurology, starvation when a person is in a persistent vegetative state is not painful.

A refusal of hyrdration does not prevent keeping the patient comfortable, say with the application of water or ice to the lips.

Administration of Blood or Blood Products (Transfusion)

A transfusion involves ppumping whole blood or blood products into the body to replace blood that has been lost or is no longer able to perform its function because of disease. Blood is transfused through a needle in a vein.

Transfusions can be given for a variety of reasons, including prolonging life.

If you refuse a blood transfusion for religious reasons, consider whether there are any types of blood products that would be acceptable to you. Your doctor can give you more information on this subject.

Major Surgery

Basically, this is surgery that would prolong life. It does not necessarily affect quality of life.

In general, it is possible to limit consent to surgery to surgery which will improve quality of life. (For questions to ask before agreeing to surgery, click here.)

Invasive Diagnostic Tests and Emergency Surgery

There are times when the only way to make a certain diagnosis is by means of a test which invades the body, such as a biopsy (a sample of tissue taken from the body in order to examine it more closely.) There may also be times when loved ones may have to decide whether to permit surgery to save life or to reduce symptoms such as pain.

Kidney Dialysis or Filtration

A person only needs one healthy kidney to live normally. If both kidneys fail, death usually results within hours to three days. Death from sudden kidney failure or from stopping dialysis is painless. (If kidneys fail gradually, death can take up to two weeks and cause seriously distressing symptoms which can be controlled with medication.)

Kidney Dialysis (Filtration) is the use of a machine that filters waste products from the blood stream and restores normal components of the blood stream. It is generally administered on a fixed schedule of three times per week for a period of three to eight hours each time. Frequency and duration can vary.

Sometimes blood cleaning is only needed temporarily to allow kidneys to heal from disease or injury.

Terry J. Barnett, author of Living Wills And More, suggests that If you use dialysis while you are able to communicate, it may be difficult for people to stop using it after you become unable to communicate. If this is your situation, an alternative is to let your Health Care Proxy, doctor, and the people close to you know that the key for you is quality of life. If your qualify of life were to become unacceptable, the reason for your consent to dialysis would no longer apply.

Use Of Antibiotics To Fight Bacterial Infections or Other Drugs

You can specify the type of drug, or specific drug, that you do or do not want. For example, consider the following:

• Drugs which may cure and permit you to obtain full quality of life.
• Drugs which are intended to cure, even though it is uncertain whether they actually will cure.
• Drugs which are only used to prolong life and not to cure.
• Drugs which are only intended to provide comfort and not to cure or control a life threatening condition.

Hospitalization

Hospitalization is being moved to a hospital. You have a choice as to the setting of your care. One choice is to remain at home.

Defribillation

Defribilation is the use of an electrical charge applied through two paddles placed on the chest to correct an abnormal heartbeat or to restart a heart that has stopped beating.

Comfort Care Only (also known as Palliative Care)

Palliative Care, sometimes called Comfort Care Only, takes the place of aggressive treatment that seeks to cure you or improve your condition. Palliative care consists of the use of painkillers and other methods to help you be as comfortable as possible with no attempt to stop the progress of your condition. Aggressive treatments could be used, but only to provide comfort - not to treat the underlying health condition.