It is hard to believe that it has been five years since a court battle erupted in Florida in which a severely brain-damaged Terri Schiavo, passed away while in hospice care. She died nearly ten days after her feeding tube was ordered removed from her body by a Florida state court judge. Ms. Schiavo’s life and death captivated the country and sparked discussion about the necessity of documents, known officially in Pennsylvania as Advance Health Care Directives, but more commonly referred to as “living wills.”An Advance Health Care Directive is simply a power of attorney in which an individual appoints someone he trusts to act as an agent should he be in a temporary or permanent condition in which he is unable to make his wishes known to health care professionals. (The living will differs from the “durable” power of attorney which deals with the property of the principal. We think both are extremely important documents.)
In 1990, Ms. Schiavo apparently suffered from a chemical imbalance that resulted from an eating disorder. The chemical imbalance caused her heart to stop beating for an extended period, which resulted in severe brain damage. Most doctors who examined her believed that she had been in a persistent vegetative state since her heart stopped in 1990. The brain damage meant that Ms. Schiavo required a feeding tube to sustain her life. Michael Schiavo, Ms. Schiavo’s husband and legal guardian, contended that Terri expressed to him her wish that she not be kept alive artificially. The Schindlers, Ms. Schiavo’s parents, claim that she never articulated any such desire to them. The bitterness became so intense that the two warring families could not be in the same room with Ms. Schiavo at the same time.
The disagreements that surrounded the life and death of Terri Schiavo raised many legal and constitutional issues; assuming that Ms. Schiavo expressed a wish that she not be kept alive by artificial means and had expressed her wishes in a living will, the public and often bitter battle between Michael Schiavo and the Schindlers most likely would have been avoided. In situations such as this, where rifts develop between family members about whether to continue or withhold life-sustaining treatments, the medical protocol is to continue with treatments. Had Ms. Schiavo’s wishes been documented, family members and medical professionals would have been aware of her intentions and allowed her to die quietly. The resources that were spent litigating could have been put towards her health care, therapy, and the improved quality of her remaining life.
The protracted family fight and court battle over whether to keep Ms. Schiavo alive became a major story in the spring of 2005. The headlines and press coverage prompted an immediate spike in Americans drafting living wills. While the Schiavo struggle remains in the minds of many, the momentum it created for writing end of life instructions appears to have waned.
Millions witnessed a worse-case scenario five years ago; unfortunately there is no indication the Terri Schiavo saga had a lasting impact on getting more people to make their wishes known. Most Americans still don’t draft the legal documents that spell out how far caregivers should go to keep them alive artificially.
Much of the problem with living wills is that either people do not entirely understand what they accomplish, or there is a misconception that they will be forced to forgo lifesaving treatment. The fact is that living wills can be customized by the patient and are used only in limited circumstances, usually when the principal can no longer communicate his or her wishes. Living wills spell out desires regarding the use of life sustaining treatment such as respirators, feeding tubes and other life-support efforts. These documents express to what lengths a health care provider can go to keep the person alive in the face of brain damage, comas and similar conditions.
While the paperwork on end-of-life wishes is vital, particularly in cases such as Terri Schiavo’s, when family members disagree, family discussions that precede such documentation can be even more important.
An Advance Health Care Directive guides the agent through the litany of difficult decisions that can occur in almost any medical scenario. The document is drafted to spring into effect only when the individual (a) is in a terminal condition or in a state of permanent unconsciousness, including a persistent vegetative state or irreversible coma, and (b) is unable to express him or herself. If the conditions are met to activate the Advance Health Care Directive, the agent is given the authority to instruct health care providers as to what the intentions of the individual are; such instructions may include that no artificial means be invoked to extend or sustain life.
The moral here is that no matter how young and healthy one is, it is never too early to make end of life wishes known in writing. Terri Schiavo was only 26 years old when she was afflicted. In the tragic dispute over what her requests were, there were no winners. Five years later her case still highlights the importance of creating an Advance Health Care Directive, which is often drafted in conjunction with other estate documents such as wills, trusts and powers of attorney. If you would like to discuss Advance Health Care Directives, or other aspects of your estate plan, please do not hesitate to contact us.
— J. Ken Butera