Without question, the medical industry has made amazing advances in recent decades, but for people whose illness cannot be cured or whose independent functioning cannot be restored, this progress presents a modern dilemma. It requires personal decisions about how much treatment is enough, where the line should be drawn between therapeutic and futile treatment, and — the most difficult decision for many — how long life should be prolonged after it has ceased to be “life” as you define it.
Medical interventions are commonly introduced when biological functions can no longer maintain themselves. Also known as “life-sustaining measures” or “life support,” these interventions often include artificial ventilation to enable breathing, medications to stimulate heart function, and artificial nutrition and hydration for those who cannot swallow.
Many states’ advance directive forms mention at least two scenarios in which life-sustaining interventions could be applied: permanent unconsciousness and terminal illness. You can indicate on the form whether or not you would want continued life support under those circumstances. Often, people who are terminally ill do not want life support because it would only prolong the dying process.
To further personalize the directive, you can cross out and initial any scenarios you don’t wish to include, and you can note anything else you feel is important. In making decisions about life support, consider not only terminal illness but catastrophic events such as sudden cardiac arrest or traumatic brain injury.
Life support is considered “withheld” when a person or their representative instructs healthcare providers not to begin a medical therapy to sustain life, and the expected result is that the person will die without it. This option is often selected by people who are terminally ill and have already begun the dying process.
Life support is considered “withdrawn” when a therapy that has been initiated is stopped. Often the person, or their representative or family members, and the attending physician will agree on a time-limited trial of life-support therapy, hoping for improvement. If the person does not improve within that time frame, the therapy is stopped.
You can direct your own medical care if you are conscious and capable. This changes once you become unable to speak for yourself. Some state laws require you to record in writing your preference to have life support withheld. In these states, life support is always initiated — unless you have written documents requesting otherwise. Even your designated representative cannot change this. If you want life support to be withheld or withdrawn after a certain period (three days, three weeks, three months), you need to indicate this in your advance directive.
Sometimes called mechanical ventilation, this is often used when patients cannot breathe satisfactorily on their own. 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. The tube can also be inserted through a hole made in the throat, called a tracheotomy. Some people are given artificial ventilation and then slowly weaned off it, but many others are unlikely to recover the ability to breathe on their own. The longer a person uses artificial ventilation, the less likely recovery becomes.
Most people who experience heart failure need to take medication to regulate how their heart works or to restart it if it stops. People who are terminally ill may not want treatment to restart their heart if it would only prolong the dying process.
Nutrition and hydration are provided for people who cannot swallow, cannot swallow sufficient amounts or cannot absorb nutrition through the stomach. For someone who cannot swallow, nutrition and hydration can be provided through a nasogastric (NG) tube, which is inserted through the nose, or a percutaneous endoscopic gastrostomy (PEG) tube, which is surgically inserted through the abdominal wall directly into the stomach.
In a growing number of states, the law presumes you would want to be fed and hydrated artificially unless you have a written instruction that specifically rejects this treatment. If you do not want this treatment, you need to record this in your advance directive. If you are terminally ill and choose not to be fed artificially, you can still receive artificial hydration, usually intravenously. Consider including other details about your nutrition decisions in your directive. As an example, keep in mind that spoon-feeding can continue as long you have the ability to chew and swallow, even if you have lost all cognitive abilities. If such a situation is a concern, you may document that you decline such spoon-feeding as part of your advance directive.