It took a crisis in an intensive care unit at the University of Maryland Medical Center to force Lawrence J. Ledwig, a 57-year-old leukemia patient, to consider whether he would ever want a machine to keep him alive.
Mr. Ledwig's wife, Elma, had left the hospital 20 minutes before he had a bad reaction to a powerful anti-fungal drug three weeks ago and suddenly couldn't get a deep breath. Immediately, his doctor told him, "We might have to put you on a respirator, is that all right?" Mr. Ledwig recalled.
"She said, 'Mr. Ledwig, will you sign a consent for us to use a breathing machine?'
"I didn't say anything. It scared me to death, stunned me."
"She said, 'We put a big tube down your throat.'
"I said, 'How long does it stay?'
"She said, 'It depends -- when you start breathing on your own.' "
Mr. Ledwig managed to avoid the monster machine for 15 frightening minutes, then as his body adjusted to the anti-fungal drug, he began to breathe more normally.
Later, he and his wife discussed artificial life support for the first time. They decided he should agree to it if a respirator would pull him through a temporary crisis, but not if it would simply extend his life when he is terminally ill. They concede: "You're putting a trust in the judgment of the doctor."
Under the Patient Self-Determination Act of 1990, patients will learn how to take more control over life-and-death decisions in their care. The law says all adults entering hospitals, nursing homes, hospices, home health care programs or HMOs must be informed of their right to decide whether they would wish to be kept alive by artificial means if the need arises.
A common dilemma is that family and care-givers have to make these decisions without knowing whether they are fulfilling patients' wishes or trapping them in an existence without life or death.
It was the story of Nancy Cruzan's existence in a coma following a 1983 car crash that prompted passage of the new federal law after Missouri courts refused her family's request to disconnect a feeding tube keeping her alive.
Last year's Supreme Court ruling upholding the states' rights to decide such cases made Ms. Cruzan, who has since died, a national issue and spurred even more public interest in documents that express a person's preferences to have or refuse artificial life support.
In Maryland, more than 20,000 people have requested the documents called advance directives from the attorney general's office since the Cruzan decision, said Jack Schwartz, chief counsel for opinions and advice. The office is mailing copies of forms for a living will, which states a person's wishes when death from a terminal disease is imminent, and a durable power of attorney for health care, which designates a proxy to speak for a patient who cannot communicate or make a rational decision.
But some doctors fear it could be difficult to decide when to enforce a living will. Others are anguished about carrying out decisions made by healthy patients when the patients may feel quite differently about life-sustaining treatments once they are sick.
Beatrice Elizabeth Kelly of Woodlawn is an example of someone who changed her mind. She has amyotrophic lateral sclerosis, or Lou Gehrig's disease, in which nerves that control muscle function degenerate, slowly paralyzing the body -- although the mind functions normally. Mrs. Kelly, a patient at the Deaton Hospital and Medical Center in South Baltimore, has been on a respirator for five years. She cannot move her body but can still speak and enjoys visiting with her family and friends and watching television.
A week ago she said she is grateful for the respirator and would only want to be unhooked from it when she is "brain-dead." She was given no choice to go on the machine when she arrived in a hospital emergency room after her breathing stopped at home, but if she had been asked then, she said, "I would have said no."
For just this reason, "physicians need to revisit these things with their patients," said Dr. John Fetting, cancer specialist and psychiatrist at the Johns Hopkins Oncology Center. "My concern about these documents is they not be seen as a fallback to doctor-patient communication."
Once the documents are drawn up, the experts urge patients to review them with loved ones.
"The worst thing anyone could do is just fill out either one of these documents and then just stick them in a safe deposit box," advised Mr. Schwartz of the attorney general's office. "Family, friends and doctors need to know about them."