Death Without Dignity: An Avoidable Tragedy

On March 31, 2005, Terri Schiavo, the severely brain-damaged woman originally from this region, died while in hospice care in Florida. She died nearly ten days after her feeding tube was ordered removed from her body by a state court judge. Ms. Schiavo became the subject of an intense legal and political battle that involved: the Florida Legislature; the Florida Supreme Court; the Florida State House; U.S. Congress; the Supreme Court; the White House and even the Vatican. A national debate erupted over whether she should have been reconnected to a tube that provided her with necessary nourishment and hydration to keep her alive. The controversy garnered a massive amount of media attention and dominated the news cycle for weeks.

In the fall of 2003, we reported on the tragic dispute that arose surrounding Ms. Schiavo. 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 even be in the same room with Ms. Schiavo at the same time.

The disagreement that surrounds the life and death of Terri Schiavo raises 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 a rift develops 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 have been spent litigating what her intentions were could have been put towards her health care, therapy, and improved quality of life. The moral here is that no matter how young and healthy one is it is never too early to make wishes known in writing.

In Pennsylvania an Advance Health Care Directive is the formal designation of what is known as the “living will.” An Advance Health Care Directive is simply a power of attorney in which an individual appoints someone he or she trusts to act as an agent should he or she be in a temporary or permanent condition where he or she is unable to make his or her wishes known to health care professionals. The document is called an Advance Health Care Directive because it is signed before the individual enters a situation where tough decisions about whether or not to refuse life-sustaining treatment need to be made. Presumably making decisions in advance of the stress and emotion associated with emergency medical procedures will lead to rational choices.

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 (a) when the individual 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; this may include that no artificial means be invoked to extend or sustain life.

Terri Schiavo was only 26 years old when she was afflicted. In the tragic dispute over what her requests were, there were no winners. Her case 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. Kenneth Butera

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