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"Deciding what to do is always a struggle," says Amy LaMoure of Gilchrist Center. (Sun photo by Lloyd Fox / March 25, 2005) |
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In the family lounge of the Gilchrist Center -- a homey spot with a gas log fire, plants, an aquarium and comfy couches -- the headlines of the newspaper on the coffee table seem particularly devastating: Schiavo Parents at Legal End: How Terri's Family Ripped Apart.
This welcoming facility, part of Hospice of Baltimore, is a place people come to make grueling decisions about how to ease a loved one's journey into death. Amy LaMoure is one of the social workers who helps make death more gentle for patients' families as well.
"Deciding what to do is always a struggle," she says, "even when it's already in writing." Most often, it is not.
LaMoure, 41, has been counseling terminally ill patients and their loved ones for nine years. She speaks with three to five families every day, trying to gauge their thoughts and expectations about end-of-life care.
In doing so, LaMoure encounters people trying to negotiate a twilight zone where two days can seem to last two months, where a simple blink can acquire huge significance, and where any subterranean current of family resentment can rise to the surface.
Her first step, she says, is engaging family members in a thoughtful conversation free of medical questions and lingo. She tries to learn who the patient is. She hears about the illness and treatment, asks family members if they've ever lost loved ones before.
"Our goal is to find out about the family," she says. "We want to know who the players are, who's here and who's not here. ... The trick is to listen to what people are really saying."
Recently as she visited with a family, one son protested the use of morphine to ease his dying mother's pain. He told LaMoure he believed that death, like birth, should be painful and traumatic.
"The real story," she says, "was that he had been away for a week and that he was afraid his mother would not be able to talk to him because of the morphine. He was also saying that death should be a natural process. We told him that our philosophy was that she was having a natural death, with the support of medication to keep her comfortable."
Eventually, the man felt more at peace with the chosen course. It was fortunate, she adds, that he was not designated as his mother's health care agent.
Living wills
Although no one knows how many people have chosen health care agents to authorize or refuse treatment on their behalf, only one in five Americans has a living will, according to the Florida-based group Aging With Dignity. And when offered the opportunity to create one, many people will refuse, for a variety of reasons.
A 1995 University of Southern California study, for instance, found that patients' cultural backgrounds can influence attitudes about advance directives. Korean-Americans and Mexican-Americans often believe families should shield the dying from the severity of their conditions and make decisions for them. African-Americans and other minorities who have been denied health care in the past are less likely to have living wills, sometimes because they fear they might be used to deny them lifesaving medical support.
Leslie Blackhall, medical director of Palliative Care services at the University of Virginia, was the USC study's lead author.
"I felt that most of the bioethicists and doctors and lawyers came from a certain part of the population and a lot of us were worried about being kept alive too long on life support," she says. "That's not necessarily true of people who come from inner-city L.A. or rural Mexico, where getting too much medical care is not an issue."
Even as society has advanced the notion of an individual's right to make end-of-life care decisions, it has neglected to emphasize that this right is merely an option, says Peter Terry, a professor and past chairman of an ethics committee at the Johns Hopkins School of Medicine.
"A physician might say, 'Now I want to ask you about the decisions you want to make at the end of your life,'" Terry said. "That already presumes the person wants to make the decisions."
Instead, a study of terminally ill patients under way at Hopkins shows the majority want to make decisions with their families or physicians, he says.
"We looked at 300 people with terminal illnesses and said, 'Let's pretend you had just given us a perfect living will and fell into a coma the next day. What should we do if your family disagreed with your advance directives?'"
Fifty-five percent said, "Ignore my advance directives," Terry said.
This welcoming facility, part of Hospice of Baltimore, is a place people come to make grueling decisions about how to ease a loved one's journey into death. Amy LaMoure is one of the social workers who helps make death more gentle for patients' families as well.
"Deciding what to do is always a struggle," she says, "even when it's already in writing." Most often, it is not.
LaMoure, 41, has been counseling terminally ill patients and their loved ones for nine years. She speaks with three to five families every day, trying to gauge their thoughts and expectations about end-of-life care.
In doing so, LaMoure encounters people trying to negotiate a twilight zone where two days can seem to last two months, where a simple blink can acquire huge significance, and where any subterranean current of family resentment can rise to the surface.
Her first step, she says, is engaging family members in a thoughtful conversation free of medical questions and lingo. She tries to learn who the patient is. She hears about the illness and treatment, asks family members if they've ever lost loved ones before.
"Our goal is to find out about the family," she says. "We want to know who the players are, who's here and who's not here. ... The trick is to listen to what people are really saying."
Recently as she visited with a family, one son protested the use of morphine to ease his dying mother's pain. He told LaMoure he believed that death, like birth, should be painful and traumatic.
"The real story," she says, "was that he had been away for a week and that he was afraid his mother would not be able to talk to him because of the morphine. He was also saying that death should be a natural process. We told him that our philosophy was that she was having a natural death, with the support of medication to keep her comfortable."
Eventually, the man felt more at peace with the chosen course. It was fortunate, she adds, that he was not designated as his mother's health care agent.
A 1995 University of Southern California study, for instance, found that patients' cultural backgrounds can influence attitudes about advance directives. Korean-Americans and Mexican-Americans often believe families should shield the dying from the severity of their conditions and make decisions for them. African-Americans and other minorities who have been denied health care in the past are less likely to have living wills, sometimes because they fear they might be used to deny them lifesaving medical support.
Leslie Blackhall, medical director of Palliative Care services at the University of Virginia, was the USC study's lead author.
"I felt that most of the bioethicists and doctors and lawyers came from a certain part of the population and a lot of us were worried about being kept alive too long on life support," she says. "That's not necessarily true of people who come from inner-city L.A. or rural Mexico, where getting too much medical care is not an issue."
Even as society has advanced the notion of an individual's right to make end-of-life care decisions, it has neglected to emphasize that this right is merely an option, says Peter Terry, a professor and past chairman of an ethics committee at the Johns Hopkins School of Medicine.
"A physician might say, 'Now I want to ask you about the decisions you want to make at the end of your life,'" Terry said. "That already presumes the person wants to make the decisions."
Instead, a study of terminally ill patients under way at Hopkins shows the majority want to make decisions with their families or physicians, he says.
"We looked at 300 people with terminal illnesses and said, 'Let's pretend you had just given us a perfect living will and fell into a coma the next day. What should we do if your family disagreed with your advance directives?'"
Fifty-five percent said, "Ignore my advance directives," Terry said.
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