The Society of Critical Care Medicine has created a new set of guidelines to support families while their loved ones are in the ICU. (Lloyd Fox/Baltimore Sun video)
When her sister was in and out of intensive care last year, Theodora Peters noticed she no longer had to push so hard for information about her sister's condition and treatment, or to stay by her bedside after visiting hours.
"There seemed to finally be recognition that we were part of the team," Peters said about the way the medical staff treated her and her sibling. "There was recognition we all needed to work together to get the best outcomes."
For decades, hospital intensive-care units focused on facilitating the care provided by doctors and nurses to the gravely ill, while access was limited for patients' families, partly so they wouldn't get in the way. That's beginning to change under a new approach known in medical circles as "family-centered care" that's gaining traction in ICUs as hospitals look for ways to improve care and cut costs.
The idea is that patients fare better when their families are more engaged in the care of their loved ones during the scary and stressful period when lives hang in the balance, said Dr. Giora Netzer, a critical care specialist at University of Maryland Medical Center.
Studies show a focus on patients' families can lead in some cases to shorter hospital stays and lower costs, Netzer said. Other studies suggest that after patients go home, the families are better equipped to provide care. That in turn could mean better quality of life for patients and fewer hospital readmissions.
"It's not just more humane care, it ends up being better health care," said Netzer, who helped craft new national guidelines for the Society of Critical Care Medicine.
Those guidelines call for families in the ICU to have such things as unfettered access to patients and places to sleep. They also include staff dedicated to helping families understand hospital procedures, social and spiritual support, more consistent updates and inclusion in medical decision-making, and even advice on providing care after the patient is released from the hospital.
The shift was welcomed by Peters, who works at Johns Hopkins Bayview Medical Center, the last hospital that treated her sister before she died peacefully at home a year ago.
"I found the people in the ICU really were angels and worked with us," she said. "But my experience in the ICU may be different from some other folks, because maybe I learned what to ask. There's still probably work to do."
The former ICU guidelines were not based on any evidence of improved outcomes or lower costs, Netzer said. Still, many hospitals adopted some ways to accommodate patients' family members, but without spending much or upsetting the long-standing medical culture.
Change should accelerate under the new guidelines, Netzer said.
"Some interventions cost money upfront, but in most cases things that improve family experiences may also conserve resources," said Netzer, also an associate professor of medicine, epidemiology and public health in the University of Maryland School of Medicine.
There are still a lot of gaps in the research, but University of Maryland Medical Center has forged ahead with changes in its ICUs, Netzer said. The rooms are bigger to accommodate family, who can visit at any time. The hospital produced pamphlets that explain how it works. Social workers now double as "navigators" who can facilitate communications with doctors or link families to services such as pastoral care or alternative therapies.
The hospital also launched a pilot program to see if patients benefit from extra measures such as allowing family members to attend rounds, a daily meeting of medical providers where patients' conditions are discussed and tests and treatments are decided.
There will be more changes in hospital ICUs nationally as studies show patients and their families are faring better with these accommodations, said Dr. Rebecca Aslakson, who also helped author the new guidelines as an associate professor of anesthesiology and critical-care medicine at the Johns Hopkins University School of Medicine.
Johns Hopkins Hospital also embraced many of the changes, such as increased communication, she said. When the new hospital opened in 2012, its ICUs were reconfigured specifically to make room for reclining chairs where family members can sleep.
Many hospitals, however, can't accommodate physical changes or dedicate more staff. There also could be cultural resistance to changes such as allowing family members into rounds that normally are the exclusive domain of doctors, nurses and medical residents.
"We realized we had to do right by patients by doing right by the people they loved, that it's part of providing good medical care," Aslakson said. "But just because these things feel right, system changes can be hard."
Dr. Renee Boss, a medical ethicist in Hopkins' Berman Institute of Bioethics who was not involved in the guidelines, said she doubts there will be a lot of resistance to the idea of better accommodating families.
In neonatal ICUs, for example, no one would consider banning parents from participating in their child's care, but that was standard practice years ago, said Boss, who's also an associate professor of pediatrics at the Hopkins School of Medicine.
But she agreed that change is not always easy. Bigger changes such as allowing family to be present during rounds likely won't come until there is more evidence that they help.
Conducting research is difficult because it requires participation by families in the ICU at a time when they are stressed and distracted, Boss said. Further, the mission of an ICU is medical, and saving lives has to remain the clear priority.
"Multiple studies of both patients and families show they have some form of post-traumatic stress disorder from being in the ICU, and the question is can we help alleviate and reduce that or make that go away by better attending to the family," she said. "There is promise. But we don't yet know enough to say whether there are important enough outcomes that we should require all ICUs to do this."
For patients and their families, however, there is no question. Peters said families can help doctors decide what care to provide if they have all the information and support, and that would reduce everyone's stress even if the patient dies.
The Morning Sun Newsletter
Get your morning news in your e-mail inbox. Get all the top news and sports from the baltimoresun.com.
Just over 20 years ago Rubin, who lives near Chicago, developed acute respiratory distress syndrome, in which fluid builds up in the lungs after a trauma and cause difficulty breathing. It kills up to half of those diagnosed with the affliction.
Her family was given little information about her condition. There was no consideration of what Rubin, who was in a medically induced coma for weeks, would want. One of her siblings, a lawyer, was so desperate for answers that she delved on her own into the medical research on the condition.
Rubin went on to help form a patient advocacy group called the ARDS Foundation and provided input on the new ICU guidelines for the Society of Critical Care Medicine, which have since been endorsed by other medical organizations in North America and Europe.
"Initially I think people had low expectations of medical professionals actually addressing your concerns as a patient or family member," she said. "They just didn't do it, and it was not something they cared about much. ... It's been gradual, but I think there has been some change. And we need that. Patients and families need to be included as part of the team."