Rosalind Kipping wants her wishes followed when she is near death and cannot speak for herself.
When she lived in Idaho, the Silver Spring woman carried a state-issued plastic card that listed her personal identity code. It meant in an emergency, medical personnel would know who had the authority to speak for her and what her personal wishes were regarding health care decisions.
Maryland has a similar law to create an advance directive registry, which has been on the books since Gov. Robert L. Ehrlich Jr. signed off on it in 2006. The problem is the state has never created the registry.
“It is extremely important to identify someone who has the legal authority about what treatments you can get and not get when you don’t have a voice of your own to make those decisions,” Kipping said.
“Remember Terri Schiavo? Her husband and friends said she would not want this, living on in a vegetative state.”
Maryland’s law passed in the wake of the Schiavo case. Schiavo, who died in 2005, was at the center of a legal battle from 1998 to 2005 over procedures that kept her in a vegetative state after she collapsed from cardiac arrest in 1990.
A Republican-led Congress passed legislation on a voice vote to transfer the case to the federal courts, and President George W. Bush flew back from Texas to sign it to block feeding tubes being removed from Schiavo. But legal appeals upheld the original court verdicts to follow what her husband and friends had said would be her wishes.
Maryland had a law since 1993 establishing living wills and advance directives pertaining to who could make medical decisions should an individual become incapacitated.
Kipping, who is vice president of the Compassion and Choices’ National Capital Chapter, has begun a letter-writing campaign to urge the state to fund the registry.
The amount it would cost for the registry is unknown and would be determined as part of an upcoming study, state officials said.
Passing a law to establish a registry for advance directives and building one are two different things.
“I didn’t realize that hadn’t been done,’ said Sen. Jennie Forehand (D-Dist. 17) of Rockville, one of the original sponsors of the law. “A lot of people have just done those on their own.”
Forehand has given written directives to her doctors and her attorney, but she still believes the voluntary registry is important for the state. She said she will look into the delay in implementation.
An issue arose over how to make the registry accessible while remaining confidential, said Sigrid C. Haines, a health care attorney on the Maryland State Bar Association’s health law section.
“There was a lot of controversy,” Haines said. “Hospital attorneys wanted to know how do you do that? Legislators just sort of waved their hands about the practical aspects. That is why it has never really gotten off the ground.”
Earlier this year, the Maryland Health Care Commission received federal funds to study implementation of new electronic health records in longterm care facilities. As part of that study, the commission is looking at the best way to implement the advance directive registry, said Dori Henry, spokeswoman for the Maryland Department of Health and Mental Hygiene.
At an Oct. 4 hearing of the legislature’s Joint Committee on Health Care Delivery and Financing, Marie Grant, state health department’s director of government affairs, said, “Every one of us has choices about how we should be treated at the end of our lives, but we can only take advantage of these choices by letting our families and our doctors know what we want.”
Grant told the committee that the state is trying to deal with some of the practical challenges in establishing a registry “that is accessible and still secure to protect the patients and their confidentiality. Complicating matters, Maryland’s law was not modeled after any other state’s.
Recommendations on how the state should establish the registry are expected in the next year, Grant said.
“I can’t think of any other example where this has happened,” Haines said of the delay of the law’s passage and the implementation.
For Kipping, meanwhile, the struggle to trumpet the cause continues.
”We are trying to light a fire under the governor, the health department and legislators with the letter-writing campaign,” she said.