ATLANTA -- For decades, hospitals tried to keep visitors out of intensive-care units for
more than a few minutes at a time. This year, Emory University Hospital here went the
other way: It began inviting family members to move into the ward and take a hand in the
patient's care.
For three recent weeks, Scott Roberts lived almost full-time in Emory's new
neuroscience intensive care unit, which opened in February. After a bone-marrow
transplant, his wife, Kristi, was struck by Guillain-Barre Syndrome, a paralyzing nerve
disorder that caused her immune system to attack the nerves outside her brain and
spinal cord. Kristi, 33 years old, was able to track her husband only with her eyes.
Mr. Roberts watched doctors and nurses attend to her ventilator and feeding tubes,
relaying feedback to the staff by reading the look in his wife's eyes. Donning a sterile
gown and mask to protect her immune system from infection, he helped nurses stretch
her immobilized limbs. At bedtime, he crossed Kristi's room to a partitioned-off living
area with a chair that folds out into a bed.
He says he was grateful he could stay with his wife until she was well enough to leave
the unit. "I can't even imagine being allowed only a couple of hours a day," Mr. Roberts
said.
Emory is among the first U.S. hospitals to meld an intensive-care unit with family living
quarters, creating a testing ground for an emerging health-care strategy: turning friends
and families, long relegated to the nail-biting isolation of waiting rooms, into active
members of the health-care team. A wave of recent studies shows that critically ill
patients may benefit from having families present. There's even a case to be made,
researchers say, for having loved ones present for resuscitation, brain-catheter
insertions and other life-and-death procedures.
Earlier this year, the Society of Critical Care Medicine, the largest international society
representing intensive-care professionals, recommended that ICUs offer open visiting
hours and increase family involvement. "Why would we presume that we can dictate how
often or who is allowed to visit during the patient's most trying moments on earth?" says
Judy Davidson, a critical-care nurse at San Diego's Scripps Mercy Hospital and lead
author of the society's guidelines.
The recommendation comes as hospitals nationwide are set to spend some $200 billion
over the next decade to update aging facilities. The result is that many, like Emory, are
considering committing the friends-and-family principle to brick and mortar. "There has
always been this wall between doctors and families," says Owen Samuels, a neurologist
who directs neuroscience critical-care medicine at Emory. "It is high time we take down
that wall."
The transition has taken some getting used to. Emory's ICU
staffers say they have had to curb the irreverent jokes and banter
they once used to let off steam. Nurses have had to cede control,
they say, breaking from their instinct to protect families from hard
truths. Now they are learning to spend time coaching families on
how to care for loved ones and prevent infection.
The new ICUs bear little resemblance to the hotel-style VIP wings
that some hospitals offer to wealthy patients. Overnight visitors in
Emory's intensive-care unit, for example, have a sink in their
rooms but have to walk down the hall to use the communal
bathroom. In October, Intermountain Health Care in Salt Lake
City will open a hospital with large intensive-care rooms, where
guests can nap on pull-out sofa beds. Typically, these hospitals
bill for standard intensive-care charges, without adding extra fees
for lodging.
For decades, U.S. hospitals restricted visitors to general and intensive-care units, in part
to protect patients from germs and the stress of multiple visitors. But starting in the
1960s and 1970s, in response to a growing consumer movement, they loosened rules to
allow fathers into delivery rooms, and families into intensive-care wards for newborns
and children. As a grass-roots movement toward family-centered care gained steam in
the 1990s, hospitals began to involve loved ones in a broader range of treatments.
But the units that care for the sickest patients -- including the coronary and neurological
ICUs -- remained behind closed doors. Visitors typically were allowed in for 10 minutes
every few hours. Admitting more than five million patients a year, ICUs account for 10%
of the inpatient beds but almost 30% of inpatient hospital costs, or $180 billion annually,
in the U.S., according to the Society of Critical Care Medicine.
Resisting Company
Doctors and nurses trained to perform complex procedures, often on near-death
patients, resisted company. Many believed open visitation would interfere in care and
also result in anxiety for the patient, overtaxed emotions for onlookers and, possibly,
danger for staffers if family members became distraught.
Spurred in part by the family-centered care movement, researchers have conducted
more than 300 observational studies and surveys on family visits to ICUs world-wide.
Many show a positive impact from family involvement. Experts, for example, had long
believed that the stimulation of a visit could elevate the pressure in the brains of
neurointensivecare patients to dangerous levels. Two studies found, however, that the visits
had a healthy effect on intracranial pressure, or
else no significant effect at all.
Visitors appeared to benefit as well. Studies
suggested that loved ones who witnessed
resuscitations or emergency invasive
procedures reported that it was helpful to see
that doctors had done as much as they could to
save the patient. Family members could also
help caregivers by monitoring patients and
helping staffers to interpret subtle changes in
their condition, researchers found.
Such visits may also help reduce length of stay,
cost and liability from errors. In 2003, MCG
Health System in Augusta, Ga., affiliated with
the Medical College of Georgia, transformed its
neuroscience ICU's shared patient rooms into
private rooms with family living areas.
Afterward, the average length of time a patient
spent in the unit fell by 50%. Medication errors
dropped to six the year after the unit opened,
from an annual average of 13 the two previous
years, says Pat Sodomka, vice president of
quality for MCG.
The mounting evidence was enough to sway the
Institute for Healthcare Improvement, the
Cambridge, Mass.-based nonprofit that leads
hospital safety and quality-improvement
programs nationwide. In a 2004 editorial
published in the Journal of the American
Medical Association, IHI head Donald Berwick
called on hospitals to open intensive-care units
to unrestricted family visitation.
Tangle of Equipment
At Emory, Dr. Samuels believed patients would benefit from such a change. His
opportunity came in 2005, when Emory began an internal debate about modernizing.
The hospital's three small neuro-critical-care units were in a section of the hospital built
in 1922. Rooms holding the units' 23 beds were a tangle of equipment, IV poles and
machinery. Space was so tight that medications, charts and paraphernalia were piled
everywhere, including on waste bins.
"We couldn't even make our way to the bedside without going over an obstacle course,"
Dr. Samuels says. "Inevitably you'd trip over a cord and pull something out of the
patient."
When a patient died, doctors had to usher grieving family members to an open hallway
to discuss organ donation. Families camped out with blankets and pillows in shabby
lounges outside the units' doors. There was mounting concern at the hospital that the
unit's design carried a risk of medical mistakes and staff burnout.
Emory planned to eventually spend $265 million on new medical facilities. But Dr.
Samuels persuaded hospital brass to fund the new unit immediately, arguing that it could
serve as a laboratory for family involvement as well as new findings on hospital design.
He was granted a $17 million budget and space on an unused rooftop deck.
Dr. Samuels turned to Craig Zimring, a professor of architecture at nearby Georgia
Institute of Technology, who is also an environmental psychologist specializing in the
emerging field of evidence-based design.
Emory had to overcome the challenges faced by other early adopters. Providence Holy
Cross Medical Center in Mission Hills, Calif., for example, began an open visitation
program in its existing 24-bed unit in 2000. Staffers of the hospital, in a high-crime area,
said visitors could become unruly, and some patients had as many as 100 visitors at a
time. The ICU is now closed for shift changes and rounds.
Three years later, Geisinger Health System in Danville, Pa., opened its ICU visiting
hours but found that families camping out in the unit got in the way of doctors. It
relaunched the program, setting limits on visits and giving beepers to family members,
so they could leave doctors for delicate procedures and return when paged.
"Open visitation has failed in a number of settings around the country," says Kris White,
a vice president of Spectrum Health, a Michigan care provider that expanded ICU
visitation hours in two hospitals in Grand Rapids, Mich., 18 months ago. "You can't have
an unmanaged free-for-all."
At Emory, hospital staffers worked with Dr. Zimring and HKS Inc., a Dallas-based
healthcare
architecture firm, to design more spacious patient rooms. High-tech equipment
would be mounted on ceiling booms to open up space so that neurosurgeons could
perform complicated procedures and families could stand nearby. They positioned the
family sleeping area at the side of the room, adjacent to big outside windows. Inspired by
studies on lighting -- which suggested patients in bright, daylit rooms used less pain
medication and had lower mortality rates and shorter stays than those in darker rooms -the designers separated family and patient zones with glass partitions.
Wi-Fi Network
Each room's family area would include two chairs that convert into beds, a sink, table
and television, and a Wi-Fi network. To economize, the hospital planned communal
bathrooms and showers, plus a common kitchen and lounge area, down the hall.
Corridors would be widened to allow patient gurneys, people and equipment to move
between rooms.
When construction was completed in January, Dr. Samuels had a moment of panic. At
almost 25,000 square feet, the new unit was more than four times the size of the old
facilities, though it had three fewer beds. Its longer hallways increased the distance
staffers had to travel between the 20 patient rooms. Dr. Samuels worried that the staff
could balk at the constant family presence. "The nurses are going to throw me out," he
recalls thinking. "There is going to be a lynching."
Over a day and a half, hospital staffers carefully transferred critically ill patients to the
new unit. Among them was David Childs, a 31-year-old computer programmer who had
suffered a ruptured brain aneurysm a week earlier.
In the new suite, David's parents, Mike and Victoria Childs, and his fiancée, Teri Skinner,
kept a rotating vigil at his bedside as Dr. Samuels and his team monitored his condition.
The swelling in David's brain had to be brought down before doctors could attempt
surgery to fix the rupture, and the family often stood at David's bedside as Dr. Samuels
described the oxygen monitor and other machines he was using. When David was
running a fever, his mother and fiancée bathed him with cool cloths.
Hug From Nurses
David's father said he had felt like he was always in the way in the old ICU's rooms. In
the new facility, the family camped out, mostly with the door left open between the room
and family studio. Nurses worked more closely with them, Mike Childs says, and made
them feel welcome.
"They always gave us the option of whether we wanted to leave or stay," Victoria Childs
says. "This was our home for a month, and it got so that the nurses could tell when we
needed a hug." For Ms. Skinner, it was enough to be at her fiancé's side. "I was able to
just sit in my chair and look at him," she says.
Not everything was smooth. Family members had to find their way to the unisex
bathroom down the hall at 3 a.m. The communal shower room wasn't always cleaned
after other visitors had used it. When an alarm went off on a piece of equipment, the
family was the first to hear it. Often, Mr. Childs says, they wandered the unit's halls to
find assistance.
After two weeks in the unit, David developed severe pneumonia, leading to a condition
called acute respiratory distress syndrome, which prevents the lungs from getting
adequate oxygen. To decrease pressure in the brain, Dr. Samuels' team put him in a
drug-induced coma. To further protect his brain, they lowered his body temperature with
cooling catheters in his veins. As his loved ones looked on, the doctor and a colleague
adjusted ventilator settings to get air back into his lungs.
As his condition was stabilizing, late at night a few days later David's aneurysm
reruptured.
Over the next 48 hours, the family paced back and forth between the studio,
the room and the family lounge area. "They saw what was going on at every moment,"
Dr. Samuels says. "They saw that we were out of options."
As David's parents and fiancée gathered at his bedside, Dr. Samuels told them that
David was medically brain dead. Shortly after, a team that arranges organ donation
came to speak to the trio. The family members say they are grateful for the time with
David, and for the way they were treated. "No one ever misled us or told us anything but
the truth," says Mr. Childs.
"We all sat together and wept when he died," says Dr. Samuels. The presence of the
family, he says, added credibility to the care by showing the doctors had done everything
within their knowledge, technical abilities and resources. "Unfortunately bad things
happen, despite all of your efforts," he says. "If you weren't living here and seeing it with
us, you might never understand that."
'In a Fishbowl'
John Scala, who has been on Emory's nursing staff for six years, says families' presence
was hardest at first for new staffers, who faced constant questioning and weren't always
confident of their answers. "It's difficult for them to practice in a fishbowl," he says.
Nurses have also become enforcers. Last month, more than 60 people came to visit a
young patient who had suffered a massive stroke. Staffers were forced to remind visitors
that the hospital can only accommodate two per patient per night.
There have been other challenges: Two computers and some plants were recently
stolen from the family lounge area. "This is a work in progress," says Dr. Samuels.
Beginning in March, Chris Primrose, a national bank examiner for the U.S. Treasury,
spent 27 of 30 nights at Emory. His wife, Beth, 45, was transferred to the neuroscience
unit from another hospital with complications from a ruptured aneurysm. While Mr.
Primrose attended to her, other family members looked after their three children at home
in Peachtree City, Ga., about 30 miles away.
It took two touch-and-go weeks before Beth's brain could heal enough to undergo
surgery. The rupture had caused so much stress to her body that a surge of adrenaline
sent her into a condition known as "broken-heart syndrome," which leads to heart and
lung failure. She was at high risk of another rupture or a stroke. Doctors inserted
angioplasty balloons into the arteries of her brain, a way to increase blood flow without
raising her blood pressure. To keep her arteries open, they placed a catheter to pump
medications into her spinal fluid.
For much of this, her husband was at her bedside. But families and staffers are also
beginning to understand that sometimes it is best just to leave the room. During more
invasive procedures, such as when a small hole was drilled into his wife's skull to insert
an oxygen probe, Mr. Primrose would retreat into the family studio or take a jog around
the campus.
Now home, recently after several weeks of rehabilitation, Mrs. Primrose remembers
nothing from her treatment. But she believes that patients are comforted by having a
loved one close at hand. Mr. Primrose, for his part, is more certain. "I can just imagine
being in her shoes, knowing you are in trouble in the ICU and not having anyone there,"
he says. "Even if there is no way to medically prove it, I am sure that my being there
helped her."