Originally Published October 30, 2003
Written By: Attorney Jeffrey A. Marshall, CELA*  

In Florida last week, Terri Schiavo was reconnected to feeding tubes.  Her case brought the heartbreaking issues and conflicts that families confront in making end-of-life decisions for incompetent loved ones back to public attention.  These problems are especially acute where, as with Terri Schiavo, there has been no advance planning.

In 1976, Karen Ann Quinlan’s parents’ battle to remove their daughter from life supports caught national attention.  In 1990, it was Nancy Cruzan’s plight that reached both the front pages and the U.S. Supreme Court.  And now, in 2003, it is Terri Schiavo’s tragic turn. 

Since 1990, Terri Schiavo has been in what her doctors have determined to be a “persistent vegetative state.”  She is being kept “alive” only through the use of feeding tubes.  Unfortunately, because Mrs. Schiavo did not make a written record of her wishes in advance, it has fallen to judges and politicians to decide whether this treatment should be continued or withdrawn.  A long, horrific, and entirely avoidable legal and political battle has thus added to the suffering of her husband and parents.

On October 15^th, Mrs. Schiavo was removed from her feeding tube, apparently ending a decade long struggle by her husband to allow her to die.  Mr. Schiavo had the support of the state and federal courts throughout his battle, but was opposed by his wife’s parents.  Then, just as it appeared that this sad case was finally going to end, Florida politicians decided to extend it.  Florida passed legislation which gave Governor Jeb Bush the discretion to overturn the court orders and direct the reinsertion of a feeding tube.  Within hours the Governor signed the order, thus continuing Mrs. Schiavo’s marginal existence and expanding the controversial litigation.      

The issues are difficult and troubling.  But, Terri Schiavo’s case is exceptional only in the amount of public controversy and political interference it has engendered. These kinds of circumstances don’t just arise every 12-14 years – they confront families every day.  End-of-life decisions need to be made whether or not the patient has planned in advance. But, when there are no advance directions from the patient, the decisions are much more difficult and troubling and also more likely to reach the courts and public attention. 

There is a long established legal and medical consensus that competent patients have the right to refuse unwanted medical treatment.  And there is also an established consensus that incompetent patients have the same right to refuse treatment as do competent patients.  The problems with incompetent patients, of course, are how can we understand their desires and who has the authority to exercise their rights. 

What can you do to assure that your values are respected if you are ever unable to make health care decisions for yourself?  It is critical that you create a well-considered advance directive.  Then, if you ever lose the capacity to speak for yourself, better decisions will be made and your family’s doubts, burdens and guilt will be lightened, because you took the time to provide instructions and authorization so that someone will be able to speak for you. 

The most popular advance planning tool is the “living will.” However, for most residents of Pennsylvania , having a living will is insufficient – the document of choice should be the health care power of attorney. (For more information on health care powers of attorney and living wills, check out our Advance Care Planning Resource Center.)

According to published reports, fewer than 1 in 5 adults have an advance directive.  If you are one of the four in five who has not done advance planning, you are leaving yourself and your loved ones open to the unkind fate of courts and (as shown by the Schiavo case) of ideologically or politically motivated state politicians.  

In Pennsylvania , the chance that your family will wind up in court is substantially greater than in many other states, because Pennsylvania laws do not specifically authorize your family members, even if they are in agreement, to make health care decisions for you.  An update of Pennsylvania ‘s inadequate laws regarding advance directives and end-of-life decisions is now being considered by the Legislature, but the proposed revision ignores the issue of how decisions should be made for the 80% of adults without an advance directive.  (For a copy of the current legislative proposal, see the reference to Senate Bill 492, below). 

If you don’t want to be a Terri Schiavo, get an advance directive now.  In that document, you want to designate: (1) which person you want to make health care decisions for you when you can’t make them; (2) the kind of medical treatment you want or don’t want to receive, especially at the end of your life; (3) your desires in regard to comfort and freedom from pain if freedom from pain might potentially detract from your consciousness or hasten the moment of your death; and (4) any other important instructions regarding your care and treatment.  

Here are some web resources on the issues addressed in this article:

A good source of information which presents both sides of the Schiavo case is the Tampa Tribune’s special report, available online at: https://reports.tbo.com/reports/schiavo/.  

Pennsylvania ‘s complicated 49 pages of proposed legislation on advance directives is available online at: https://www2.legis.state.pa.us/WU01/LI/BI/BT/2003/0/SB0492P0529.pdf.

Additional information on advance directives is also available on the Marshall, Parker & Associates’ website, www.paelderlaw.com.