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by Jenn Riggle
An advance medical directive, or living will, is a written document that gives instructions about the medical treatment a patient can receive if he or she is terminally ill or unconscious.
However, there are times when hospitals choose to ignore them, such as:
John Peter Smith Hospital, a 527-bed hospital in Fort Worth, Texas, was at the epicenter of this discussion when it kept Marlise Munoz, a 33-year-old pregnant woman who was declared brain-dead, on life support against her wishes and those of her family.
The American Bar Association Commission on Law and Aging notes that a number of myths exist about advanced directives, with the biggest being that they are legally binding and doctors have to follow them. In reality, they give doctors and hospitals immunity if they follow the directives.
More than half of U.S. states, including Texas, do not allow life support to be withdrawn from a pregnant woman, even if she has a living will. It seems only natural that hospitals want to give an infant every possible chance to survive, no matter how slim. And while there have been cases, like the one in Michigan, where a brain-dead mother pregnant with twins stayed on life support and eventually delivered two healthy infants at 25 weeks, those cases are few and far between.
Unfortunately, the Munoz family's story didn't have a happy ending. In the end, a judge had to determine whether it was appropriate to have the young mother and her child taken off life support.
The case is highlighted a disconnect between federal and state laws. Advance directives are governed by state law. Yet the Federal Patient Self Determination Act passed in 1990, requires hospitals and nursing homes certified by Medicare and/or Medicaid to:
However, the federal law lacks the teeth to defend patient rights. In 2010, President Barack Obama issued a memo that instructed the U.S. Department of Health and Human Services to ensure full compliance with the existing law and issued new guidelines to ensure enforcement. Yet, confusion remains.
The federal law doesn't apply to individual physicians and private clinics and practices. In addition, each state develops its own written description of the law. This leads to discrepancy in the interpretation of the federal law, which explains why states have different rules about advance directives and pregnant women.
Such ambiguity not only puts the family at risk, but also the hospital. For example, a Michigan jury awarded more than $16 million to the family of 34-year-old Brenda Young because the hospital ignored her living will. While it is unusual for courts to award substantial damages to families for not following living wills and other advance directives, the precedent has been set.
The Munoz family's story is a tragic one, but it has helped bring to light the fact that we are all more vulnerable that we may have thought. Advance directives are important, but they need to be followed to protect not only the families, but also the people who care for them.
Jenn Riggle is a vice president at Weber Shandwick Worldwide and member of its healthcare practice.
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