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Your Wishes: Deciding About Life Support

Summer 2005

Advance Directive Resource

  • Your advance directive is key to making your wishes known if you should be unable to communicate.

  • Death shouldn't have to include fear, pain or suffering, and planning is one of the best ways to avoid it.

  • Create your living will now.
There is no question that western medicine has made amazing advances in recent decades, but for people whose illness cannot be cured, this medical progress presents a modern dilemma. Only you can decide how much treatment is enough, where the line is between therapeutic and futile treatment, and the most difficult decision for many -- how long your life should be prolonged after it has ceased to be "life" as you define it. These questions don't have any easy answers.

This section provides information about the options you should have in deciding which medical interventions can be used when biological functions cannot maintain themselves. These are commonly called "life support" and are also known in the medical world as "life-sustaining measures."

These terms usually refer to medications to stimulate heart function, artificial food and water, or artificial ventilation. People who are terminally ill often do not want such interventions, which would only prolong their dying process. Others must consider what they would want in the case of sudden cardiac arrest or traumatic brain injury; debating what would be best for them and for their loved ones.

Usually interventions are stopped because the patient recovers or because the treatment is not achieving the desired goal.

Withholding and Withdrawal of Treatment

Life support is considered "withheld" when the patient or the patient's health care agent instructs health care providers not to begin a medical therapy, and the expected result is that the patient will die without it. This option is often selected by patients who are already terminally ill and in the dying process. Life support is considered "withdrawn" when a therapy that has been initiated is stopped. Often, the patient or patient's agent, other loved ones, and the attending physician, agree on a time-limited trial of life-support therapy, hoping for improvement. If the patient does not improve, the therapy is stopped.

While you can always direct your own medical care if you are conscious and capable, this can change if you are incapacitated. Some state laws require you to record in writing your wish to have life support withheld. In these states, life support is always initiated unless you have written documents requesting otherwise, and even your designated agent cannot change this.

If you want life support to be withheld or withdrawn after a certain period, it is imperative that you complete a living will and durable power of attorney for health care. A doctor's order may also serve this purpose. See DNR below.

Artificial Ventilation

Artificial ventilation is often used while treating the underlying problem that causes the patient to be unable to breathe. A tube is inserted through the mouth into the windpipe, and a machine pushes a precise combination of oxygen and air into the lungs, at a controlled speed and pressure. Sometimes the tube is inserted into the windpipe (trachea) through a hole made in the throat. Also called mechanical ventilation, artificial ventilation brings oxygen and air to the lungs of a person who cannot breathe on their own.

Some patients are given artificial ventilation, and are then slowly weaned off it. But many patients are unlikely to recover the ability to breathe alone. The longer a patient uses artificial ventilation, the less likely recovery becomes.

DNR Order as a Tool

A DNR order instructs health care providers not to attempt to resuscitate you if your heart stops. This option is sometimes selected by people who, for medical reasons, would not benefit from CPR. Discuss with your doctor whether a DNR is appropriate for you.

Some states allow you to include DNR instructions in your living will. If yours does not, you will need to complete a separate document. Also keep in mind that instructions in your living will may not apply if you receive emergency care, such as in the event of a sudden collapse. If you do not want resuscitation attempted in any circumstance, you need a DNR form that is separate from your living will, sometimes called a "non-hospital" DNR. In most states this form requires a physician's signature.

Paramedics are usually required to initiate rescue and resuscitation measures. If you have a DNR order, it is important to display it prominently. Prepare family members and neighbors in case they should find you without heartbeat and not breathing.

Non-hospital DNR orders can be difficult to enforce. Emergency personnel rarely withhold resuscitation and they are not required to search for DNR documentation in an emergency. If you want to reject all emergency efforts, you must persuade your family and neighbors, far ahead of time, not to call 911 if they should find you without signs of breathing or heartbeat. To learn about local practices and ask what you need to do to enable paramedics to comply with your DNR, call your local ambulance service or fire department.

Artificial Food and Water

An adult may forego or terminate active treatment such as chemotherapy, radiation therapy, antibiotics, or other medications. Similarly, the choice of whether to take food or water, by mouth or through a tube, is the patient's. But if you have situations in which you do not wish to receive this treatment, you need to record your wishes in your living will. Some states require you to receive artificial nutrition and hydration unless you have stated otherwise in writing.

Nutrition and hydration are provided for patients who cannot swallow, cannot swallow sufficient amounts, or cannot absorb nutrition through the stomach. In the case of a person who cannot swallow, this can be provided through a tube. This can be a nasogastric tube, a tube that is inserted through the nose, or a percutaneous endoscopic gastrotomy (PEG) tube, a tube that is surgically inserted directly into the stomach. If you are terminally ill and do not wish to be fed artificially, you can still receive artificial hydration, usually through an intravenous tube.

Your Wishes

Your life support preferences should be recorded in your living will, and discussed with your health care agent, doctors, family and loved ones. Be sure you have all the information you need, and make your decisions carefully. Discuss these situations with your primary physician, and take your general health and other health conditions into account.

As part of your advance directive, we recommend including two supplements developed by Compassion & Choices: "My Particular Wishes" and "The Dementia Provision," which are available through Compassion & Choices. If you have additional questions as you determine, record and communicate your wishes, please contact our Client Support Program at 800.247.7421. Our staff counselors can provide individual information and support as you complete your documents.

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This article was provided by Compassion & Choices. It is a part of the publication Compassion & Choices Magazine.