Families taking bigger role in hospital patient care


The conflict between Raymond Jackson and Mount Washington Pediatric Hospital illustrates some of the emotional issues that hospitals face as families take a more aggressive role in patient care, medical ethicists say.

"Part of good health care is having family involved in the care," said James Nelson of the Hastings Center, an independent, nonprofit research and educational organization in New York that examines ethical issues in medical and life sciences.

But when a family's demands absorb an inordinate amount of staff time, "then it's reasonable to find some alternatives," he said.

That tension comes at a time when doctors and hospitals are more receptive to family involvement in patient care, ethicists say.

"Part of it comes from a growing respect for individual patients," Mr. Nelson said. Doctors also have found that patients heal faster when families are involved in care, he said.

Family visits are especially important for children, whose contact with hospital staff can be distant or impersonal, said Andrew Penn, attorney for the Maryland Disability Law Center, a Baltimore advocate for the developmentally disabled.

Under Maryland law, patients are entitled to visits from anyone they wish to see, including clergy members and lawyers, at all reasonable hours. But visits and private conversations can be restricted for medically justified reasons.

"Certainly people have a right to visit, but that visit depends on the patient's condition," said Dr. Leslie Miles, chairman of the ethics committee for Medical and Chirurgical Faculty of Maryland, the state medical society. "It depends on what's going on and what is beneficial to the patient."

Health care providers stress that the patient -- not the family -- is their primary concern.

At Howard County General Hospital, for example, visitors can lose their privileges if they pose a threat to patients or violate hospital policies.

"If someone is abusive or threatens harm to staff, or if the family refuses to comply with an isolation order, this is a risk," said Susan Goodwin, senior vice president of nursing at the Howard County General. "You can't have your staff threatened."

Hospitals generally try to resolve disputes through patient care committees, which are required under state law. Some hospitals also have patient advocates, or ombudsmen, Dr. Miles said.

Only rarely do hospitals suspend visitation privileges to protect the patient, medical experts said.

In such cases, patients can appeal to the patient care committee, which is drawn from the hospital's doctors, nurses and administrators, and from social workers, clergy and others in the community.

If a dispute can't be resolved through those channels, the family still can move the patient to a different hospital and seek redress in court.

"When you go to the hospital, you don't lose your due process as a citizen to associate with cherished intimates," said Mr. Nelson of the Hastings Center. But "that right has to be tempered with other considerations."

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