Md. puts out end of life guide

Web handbook is first of its kind


Maryland is offering a first-of-its-kind guidebook to help people make health and end-of-life decisions on behalf of a patient, a year after the death of Terri Schiavo, the brain-damaged Floridian who launched a national right-to-die debate.

The authors hope that the guidebook will become a model for other states and help families avoid legal battles.

"The court is one of the worst places for trying to resolve issues about difficult medical decisions," said Jack Schwartz, a Maryland assistant attorney general.

The Maryland attorney general's office collaborated with the American Bar Association's commission on law and aging to develop Making Medical Decisions for Someone Else: A Maryland Handbook.

FOR THE RECORD - The Web address to download a Maryland guide for health care proxies in yesterday's Business section was incomplete. The address is The Sun regrets the error.

The Web-based guide, along with a shorter pamphlet highlighting key points, are being unveiled today at a news conference.

The importance of end-of-life planning became clear last year with Schiavo, who never made a living will and had been in a persistent vegetative state for 15 years. The court eventually ruled that her husband could remove her feeding tube, over the objections of her parents, Congress and President Bush. She died about two weeks later.

More than 120,000 Marylanders last year received advance directive forms from the attorney general's office - more than four times the usual number. An advance directive in Maryland allows individuals to make their medical wishes known and to name someone to carry them out if they become incapacitated.

The 24-page handbook gives advice on how to talk to doctors, make health care decisions, resolve disputes and cope with the grief.

The guide also includes information geared toward state law. For instance, the person named as a health care agent in an advance directive in Maryland has top priority in making medical decisions on behalf of the patient. That person is followed by a court-appointed guardian, a spouse, an adult child, parent, adult sibling and friends or other relatives.

Repeatedly stressed is the need for health care proxies - those making the decisions - to learn what care the person wants if he or she becomes seriously ill.

The guide offers a quiz where proxies answer care questions the way they think the patient would answer them. Then the patient can answer the quiz and both sides can compare notes. The quiz serves as a launching pad to discuss the patient's treatment preferences.

Often health care proxies don't know a patient's desires. The Archives of Internal Medicine reported this month that studies show proxies correctly predict a patient's treatment wishes 68 percent of the time.

Attorney General J. Joseph Curran Jr. said the handbook is not just for seniors.

The most high-profiled right-to-die cases - Karen Ann Quinlan, Nancy Cruzan and Schiavo - involved women stricken in their 20s, he said.

Maryland had a similar case in 1991 involving a 29-year-old Essex man who years earlier had suffered severe brain damage in a car accident. While Ronald W. Mack's wife argued that her husband would want his feeding tube removed, his parents claimed the opposite. The parents won custody of their son. The case spurred advance directive legislation in 1993. Mack died in 2003.

Most of the work on the guidebook was done last year. Drafts were sent to doctors, lawyers and hospice workers for input. Focus groups, made up of people who had made medical decisions for others, also were consulted.

Dr. Anthony Riley, medical director for the Hospice of Baltimore and Gilchrist Center for Hospice Care, said the state's guidebook can be useful.

"Oftentimes, people are designated as the health care agent and they don't know what they are getting into," Riley said.

The book also can be a resource for those trying to decide who to select to make health care decisions for them, Riley added.

The Morton K. and Jane Blaustein Foundation in Baltimore provided a $25,000 grant to develop the handbook.

Charles Sabatino, director of the ABA's commission on law and aging, said that while other small guides offer information for health care proxies, the Maryland handbook is believed to be the only one of its kind. The goal is for other states to publish the handbook after adapting it to fit their laws, he said.

The free Web-based handbook is available at Those without access to the Internet can request a printout at 410-576-7000.

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