The Medical Minute: Advanced directives for life-sustaining treatment

March 24, 2005

By John Messmer
Penn State Family & Community Medicine
Penn State Milton S. Hershey Medical Center

Terry Schiavo's husband said she told him she would not want to be kept alive in the situation she is in; but if she did discuss it with him, she apparently never told anyone else, nor did she put her wishes into writing. If she had, it would have saved much heartache for her family.

Many people prefer not to think about the end of their lives. There was a time when there really was no choice -- when the end came, people died. In the last half century, medical science has advanced so significantly that people can survive many illnesses and accidents that would have been fatal in the past. In some cases, however, the survivor is incapacitated significantly. There could be paralysis, inability to speak or eat, or perhaps complete unawareness of surroundings. The quality of life after recovery may be very different than before.

While it is not for anyone to say what quality of life is appropriate for other people, people do have the right to specify the kind of life they as individuals prefer. The question is not whether withholding life-sustaining treatment is right or wrong; the issue is what is right for people personally and individually. If people have opinions, they must share them with their families and preferably put it into writing. The best way to do this is with an advanced directive. Anyone of sound mind over age 18 or a high school graduate or who is married may complete an advanced directive.

It is important to remember that advanced directives apply only in the case of a person who is terminally ill -- that is, unlikely to recover and who is not able to communicate their desires. It does not apply if one loses consciousness due to an illness or injury from which they are expected to recover.

An advanced directive typically is composed of two parts -- a living will and designation of a surrogate decision-maker. In the living will one specifies exactly what treatments one wants and does not want. Every state has laws governing the use of advanced directives and specifying what should be listed. In Pennsylvania, the form lists several typical treatments that can be withheld, such as cardiac resuscitation, mechanical ventilation, tube feeding, surgery, intravenous fluids, antibiotics, blood, diagnostic tests and dialysis. The form also includes a section for other instructions.

A surrogate decision-maker is someone, usually a spouse, trusted family member or friend, whom an individual knows will carry out the patient's wishes should the patient be unable to communicate. This person should understand what the patient wants and be willing to speak on his or her behalf. He or she will interact with health-care professionals and give or withhold permission for medical treatments. Individuals are not required to designate a surrogate, but it could make it easier for families.

Once the advanced directive is completed, it must be witnessed by two people over age 18 to make it official. It does not require an attorney or notary. The document must be accessible if needed. A copy should go to the patient's doctor, the surrogate decision-maker and perhaps one or two other people. Individuals may revoke or change their advanced directives at any time or the surrogate may do so should circumstances change. Dated copies make it easier to know if it has been updated.

The decision should be discussed with families so everyone will know the plans. It is advised that when families discuss, to ask if there are any objections to the choices made. Frank discussion when individuals are healthy can avoid family rancor later if someone in the family decides not to support the individual's wishes when the patient cannot speak for himself or herself. If an individual's doctor has ethical or religious objections, he or she is not required to follow the patient's wishes but must try to transfer that patient's care to someone who will.

Each state has a specific format for an advanced directive to be binding. Blank forms often are available from a doctor or local offices of aging. State-specific forms and instructions are available to download free of charge from Partnership for Caring at http://www.partnershipforcaring.org/Advance/documents_set.html

No one is too young to need a living will. Terry Schiavo probably never expected to experience her tragedy. Living wills spare families from guessing what the patient would have wanted.

(Media Contacts)

Last Updated March 19, 2009