CONTACT: Marshall Kapp
(850) 645-9260; marshall.kapp@med.fsu.edu
By Ron Hartung
February 2011
TALLAHASSEE, Fla. -- Making health-care choices for another adult is a role no one really wants but anyone might get. A new publication for Florida residents just made that role a little easier.
The booklet, “Making Medical Decisions for Someone Else: A Florida Handbook,” is based on one created in 2006 by the American Bar Association’s Commission on Law and Aging. The ABA offered it as a template for states to adapt.
At the Florida State University College of Medicine, the Center for Innovative Collaboration in Medicine & Law seized that opportunity.
“I did my own research on relevant Florida law, and I also sent out a draft for comments to the Florida Hospital Association, the Florida Medical Association, the state long-term-care ombudsman, the Bio-Ethics Network of Florida, the ABA commission and others,” said Marshall Kapp, director of the Medicine & Law Center, who has posted the completed handbook at /innovativecollaboration/home.
“It basically deals with planning for incapacity at a time when medical decisions may need to be made and you won’t be able to make them for yourself anymore,” Kapp said. “It also deals with the rights and duties of the substitute decision-makers.”
The 20-page booklet uses plain language to walk decision-makers through their new role. It alternates between encouragement (“Anxiety is normal”) and advice (“The aim is to choose as the patient would probably choose, even if it is not what you would choose for yourself”).
One theme the booklet stresses is the importance of communicating with the patient, when possible, and learning what he or she prefers. To assist in that process, the booklet includes a two-page quiz. The quiz instructs decision-makers to answer the questions as they think the patient would answer them; have the patient answer them; and then compare and discuss the two sets of answers.
Charles Sabatino, director of the ABA Commission on Law and Aging, said that for most people, serving as a health-care substitute decision-maker comes as a surprise.
“They don’t realize that it's a serious and difficult job until they are pulled into it in a crisis,” he said. “And unlike most jobs we take on, there are very few educational resources out there to train us for that role. The guide fills a deep gap in resources.”
Only three other states have versions of the ABA guide so far: Maryland, New Hampshire and North Dakota. Because of its elder population, Florida especially needs such a guide, Kapp said.
In addition, he noted that Florida was home to the Terri Schiavo case. Schiavo, a St. Petersburg resident, was in a coma from 1990 to 2005. The state and nation were divided by the legal battle that raged between her husband and her parents over whether Schiavo would have wanted to be kept alive through a feeding tube. Eventually the courts, the Florida governor and even the U.S. president were involved.
The Schiavo case was high-profile and important, Kapp said, but it was very much the exception.
“A big part of why a booklet like this is important,” he said, “is that in the vast majority of circumstances there can be a meeting of the minds that is reached, and ultimately things can be done on the basis of consensus rather than conflict. We ought to be educating both professionals and the public in a way to avoid future Schiavo cases.”