Patients' kin may watch life-and-death dramas

When Charlene Stevens's father suffered a heart attack last fall, she was by his side in a minute. She watched firefighters perform mouth-to-mouth resuscitation while Anthony Rais lay in the hallway of his Somerville home. She clutched his hand as the paramedics inserted a breathing tube, letting go only when they shocked his heart with defibrillator paddles.

Then she followed the ambulance to Somerville Hospital, where nurses ushered her into the trauma room. As doctors and nurses worked feverishly on her father, a nurse manager hovered nearby, explaining the fast-paced action and keeping an eye on Stevens's mother, who was also at the bedside. Stevens recalls that she rubbed her father's legs and screamed at him to "keep trying." But after a half-hour of intense CPR, the medical team and the family agreed that Rais was gone.

"It was very tough to see, " said Stevens. "But if I hadn't been able to be there I would have been more tormented. I don't have any doubts that they tried their hardest. It was an extra gift to spend that time with my dad."

For years, hospitals sheltered families from the grim realities of resuscitation. But Stevens's presence during the entire battle for Rais's life began a new era at Somerville Hospital that is part of a growing trend to allow relatives to witness lifesaving attempts. Somerville, Massachusetts General Hospital, and Children's Hospital Boston are among the local facilities that now invite families to watch resuscitations, and others said they are considering it. A recent national survey indicates that half of hospitals allow relatives to watch at least some of the time in emergency rooms, intensive care units, and patient rooms.

Proponents believe that permitting families to witness resuscitation attempts, for all but the most brutally injured, can reduce the family's anxiety about what is being done behind screens or closed doors, and help provide closure if the patient dies. In addition, proponents say the family's presence helps underscore the patient's humanity. The practice is part of a movement to involve families more deeply in patient care, from expanding visiting hours in ICUs to allowing relatives at the bedside during invasive procedures such as inserting feeding tubes.

Giving families the option of watching resuscitations was endorsed by the Emergency Nurses Association more than a decade ago and by the American Heart Association in 2000, but the idea faced opposition from many doctors and has only gradually been instituted.

Some doctors believe it could psychologically harm the family, invade the patient's privacy, and interfere with lifesaving procedures.

"It's a little like letting passengers into the cockpit of a crashing airplane," said Dr. Richard Wolfe, chief of emergency medicine at Beth Israel Deaconess Medical Center, where relatives are seldom allowed to witness resuscitations. In resuscitations involving massive injuries, "one wrong move or distraction can cause problems," he added.

There are no comprehensive studies of the practice, but a number of case studies and surveys of families and healthcare providers have found little or no disruption to medical staff and no harmful effects on either patients or families. A survey of staff at a Texas hospital found 84 percent thought their performance during resuscitation was just as aggressive as before relatives were invited to watch, and 97 percent thought the outcome was the same.

Relatives overwhelmingly say in surveys that they want to be present. And those who have watched a resuscitation said the experience helped them comfort their loved one during the procedure and adjust more easily to the outcome. Less is known about what patients would want, because most are unconscious when resuscitation begins. One-fifth of people in the emergency waiting room of a Minnesota hospital, however, said they wouldn't want any relatives present, according to a study published in June, and most of the others said they would want only certain family members of their choosing.

According to one national survey, about half of emergency rooms and ICUs allow relatives to witness resuscitations in at least some cases, although only 5 percent have written policies permitting it. The survey, of 1,500 nurses from all 50 states, was published last year. Twenty-nine percent of the nurses said their hospitals barred relatives during cardiopulmonary resuscitation.

Susan L. MacLean, a senior official at the Emergency Nurses Association who oversaw the survey, said interest in the practice jumped following publication of the survey and other studies showing that doctors' worst fears weren't materializing.

Last November, after months of preparation, Somerville Hospital began asking families of patients arriving in cardiac or respiratory arrest if they wanted to witness resuscitation attempts, according to Mary Pitts-Taylor, nurse manager for critical care. Following a model used by several hospitals, a nurse manager meets briefly with families to screen out those who appear too agitated to safely enter the room, and to caution them not to interfere with the staff's work. She stays with them in the room to explain what is happening and to escort them out if they can't handle the scene or are getting in the way.

Somerville had previously asked most families to wait in a separate area.

Charlene Stevens, who describes herself as a "45-year-old daddy's girl," arrived knowing she wanted to be present as hospital staff worked to revive Rais. The 69-year-old had suffered from congestive heart failure, but the heart attack was unexpected. She said being present helped provide closure.

"You tend to want to put blame somewhere," she said. "But I got to see how tirelessly they continued to keep working on him. . . . Ultimately, I knew his heart was just too tired."

At MGH, where the emergency department has allowed families to be present at cardiac arrest resuscitations for nearly two years, about one-third choose to be present, said Tricia Mian, a psychiatric clinical nurse specialist.

Some ethicists aren't sure whether it really helps most families. "A code can be brutal to watch," said Dr. Lachlan Forrow, director of the ethics service at Beth Israel Deaconess, using the hospital term for a resuscitation effort. "There can be violent things done desperately to get tubes into the right part of the body, and blood all over the place. It makes me really worry about the impact on the family."

Forrow also suggested that if families feel they have to be present to alleviate doubts about the staff's efforts, then hospitals need to work on building trust.

Another issue that concerns Dr. Andy Whittemore, chief medical officer at Brigham and Women's Hospital, is what the patient would want, since he or she is often unable to consent to having relatives present.

Privacy issues also come up if the patient is not in a private room, he said. The Brigham is working its way toward including family more often, he said.

Dr. Monica Kleinman, clinical director of the medical-surgical ICU at Children's Hospital, acknowledges that for some families, witnessing a resuscitation would be unbearable. But she said families have repeatedly said that being with their child was reassuring.

"The major shift has been in the attitude of clinicians," Kleinman said. "We are realizing this is helpful to parents . . . and putting aside our own sense of possible discomfort at being observed in a setting where we're not used to."

Alice Dembner can be reached at Dembner@globe.com.