Doctors Care for Family Members, Too, When Patients Are in ICU

Laura and Marcus Gordon had just returned from their honeymoon. It was 6 a.m. when Laura, downstairs in the kitchen, FaceTimed her husband to see if he was getting up for work. Yeah, yeah, he replied. Seconds later Laura heard a crashing sound, followed by a terrifying thud.

When she rushed to see what happened, she found her new husband lying unconscious on the floor. He had fallen. Wood from the step he tumbled down was splintered around him. Laura called 911 and the ambulance rushed Marcus to the hospital. There, medical professionals diagnosed him with a severe traumatic brain injury. (The fall had caused widespread tissue damage in his frontal lobe and cerebellum, two of the largest parts of the brain.)

Marcus was helicoptered to Yale New Haven Hospital, where Laura and her mother met Yale Medicine’s David Hwang, MD, the attending physician of the Neuroscience Intensive Care Unit (Neuro ICU). Marcus had slipped into a coma, his brain was swelling uncontrollably and his chance of recovery was unknown—but it didn’t look good. Marcus was only 30 years old. 

Laura’s recollection of the next few days is foggy. She remembers Dr. Hwang telling her that the neurosurgeons could try removing part of Marcus's skull to accommodate the swelling of his brain, but the team wasn’t sure the procedure would make enough of a difference. “Even if he does survive, he might not be the same man you married,” he told her.  At another point, she remembers bringing Dr. Hwang a poster with photos from their recent wedding. “See? This is my Marcus, happy and well," she said. "This is the man lying in that hospital bed, the Marcus I love, so full of life.”

What Laura finds remarkable, even two years later, is that Dr. Hwang was so attentive and connected to her needs. He answered all her questions. He was careful and thorough, honest and straightforward. And he listened to her. “I just remember him being very real with me. I appreciated that he didn’t give me false hope, but he also made me feel like he was going to do the best he could,” she says.

Dr. Hwang had arrived at Yale Medicine in 2012, fresh from his neurology residency and a neurocritical care fellowship at the Brigham and Women’s Hospital and Massachusetts General Hospital. He had graduated from Harvard Medical School, where he became interested in psychiatry and neurology. (Those fields, he believes, govern many of the elements that make us human.) He found it meaningful that, as a doctor, he might help patients and families navigate the impact that psychiatric and neurologic disease have on their personal identities. “Our memories, moods, and behavior are what make us unique,” he says.

And while Dr. Hwang never expected to specialize in critical care, as a resident rotating in the Neuro ICU, he found himself intrigued by the nature of the work, taking care of patients who were very sick and often on the precipice of death. He was helping their families answer very similar existential questions.

Dr. Hwang recalls that he was surprised by how much time he spent with families in the Neuro ICU but that, in an odd way, it made sense: Because patients were usually unconscious, a major part of his work was focused on interacting with their families. As a fellow in the Neuro ICU, he met with family members every afternoon, answering their questions and helping them think through their personal values on what quality of life meant for their loved ones. He saw them struggling to comprehend what was going on and how families (and even people within the same family) had different styles of dealing with the situation.

What's more, he realized there was no protocol for taking care of these families. Historically patients’ families have been limited in the amount of interaction they could have with doctors on a hospital floor, particularly an ICU. And given the circumstances, these family members were often overwhelmed and hesitant to approach doctors on their own.

Dr. Hwang wanted to change that. Not only would better communication between the medical team and families make the experience more bearable for families, it would allow them to make more educated decisions for their loved ones, especially in an environment where decisions often involved life and death.

There was a practical case to be made, too. While new healthcare laws tied reimbursement rates for hospitals to the scores they receive on patient satisfaction surveys, there was little feedback on how patients’ families felt about their interactions with the medical team. Because of the high-risk environment, ICUs are also among the most likely hospital departments to face lawsuits, especially if families feel they haven’t received adequate information about what’s going on. (Research has shown that improved communication between doctors and patients dramatically reduces the number of lawsuits.)

During the last year of his fellowship training, Dr. Hwang conducted two small single-center studies to learn more about the communication that families were receiving in both medical and neuro ICUs. The first found that one in four family members (of the 124 surveyed) reported receiving some sort of discordant information during their stay. Of that group, about 20 percent reported that it affected their satisfaction with their experience, and 10 percent said it affected their decision making.

The second study of the same family members found that less than 60 percent felt included in their loved ones’ care, or supported and completely satisfied by the frequency of physician communication. They reported feeling a loss of control over the what was happening. 

“There was room for improvement,” says Dr. Hwang.

On the third day after Marcus was admitted to the hospital, Dr. Hwang brought Laura into the family conference room and told her that, though the odds of full recovery were still slim, the neurosurgery team and the Neuro ICU team had decided together to go through with the craniectomy, the procedure to remove a part of his skull. Laura and her mother waited in the family conference room while neurosurgeon Patrick Tomak, MD, and chief resident Ryan Grant, MD, operated. Shortly afterwards, they came in to see her. The surgery had gone well, they said. His brain would continue to swell for a few days, but removing the skull should help it recover. Now all they could do was keep giving him medications to quell the swelling and wait.

And that was hard. Laura had been spending her days at the hospital and her nights at The Suites, a nearby hotel operated by the hospital. She never wanted to be more than a few minutes away.  “I was trying to control some part of the situation, just by being there and not missing anything,” she says.

The craniectomy had gone well, but it was not without complications. Marcus had been placed in a medically induced coma to reduce the pressure within his skull. This meant he was on a ventilator (he wasn’t breathing on his own). But because he was on it for so long, he developed pneumonia, a common complication, two weeks into his ICU stay. Numerous tubes snaked in and out of Marcus’s body—ones for the ventilator, ones for IV access, and others for nutrition. There was even a machine that cooled his entire body, as his brain injury was causing him to have frequent fevers. As doctors worked to control the infection, Laura stood by, watching and wanting to do something—anything—to help.

But even as Marcus was the focus of Laura’s attention, Laura was a focus of the medical team. When doctors met with her about Marcus’s condition, they always started off by asking how she was doing. Nurses responded to her questions as quickly as they could. They told her what she could do to help, including make her husband’s bed and rubbing lotion on his feet. They let her bring in essential oils to diffuse into the room to make it feel like home. “Sometimes in hospitals there's so much going on that families’ concerns are not met,” she says. “But [the Neuro ICU] made sure we weren't ever too worried or concerned. We were never waiting too long for information.”

Laura was also invited to participate in morning rounds, a time each day when the entire Neuro ICU team meets to strategize the care plan for each patient. This gave her an opportunity to participate in the conversations doctors were having about Marcus and the decisions being made about his care. As Marcus started showing signs of waking up, she was able to share details of moments when her husband squeezed her hand or opened his eyes when they were alone in the room. She felt like part of the team working to save Marcus’s life.   

“It gave us a full picture of his care every step of the way, every day,” says Laura.

When Dr. Hwang arrived as a new physician in Yale’s Neuro ICU, there was already a strong culture of commitment to family-centered care. He found support for his projects, including a program to formalize “family rounding time,” where the attending doctor or nurse manager would make regular afternoon visits to each patient room to address family members’ concerns. His goal was to provide additional, regular opportunities for families to speak to doctors. “If you're a family member who’s panicking or you've never been in the ICU before, you don’t necessarily have the presence of mind to say, 'I want to attend rounds, I want daily updates,'" he says. “We don't want to put the burden on the patients to ask for that.”

As a result of these efforts, the Yale Neuro ICU was rewarded with the Family-Centered Care Innovation Award from the Society of Critical Care Medicine, the largest professional organization for critical care clinicians, which had been looking for new and effective methods for providing care to critically ill and injured patients and their families.

Soon afterwards, Dr. Hwang worked with colleagues in nursing, case management, and social work departments to help launch a Patient-Family Advisory Council for the Neuro ICU. The council comprises seven nonprofessional members (former patients and families) and five or six staff members. It meets every month or two to discuss ways to make the ICU experience less overwhelming.

Twenty-seven days after Marcus was admitted to the hospital, he awakened. He was soon transferred to the neighboring step-down unit, where patients no longer in critical condition are brought to continue their recovery under close monitoring, until they are ready to be discharged from the hospital.

The transition made Laura realize how she had grown to rely on the care the Neuro ICU team had provided. The medical team in the step-down unit was less familiar with the details of Marcus’s condition, and they also had more patients to care for. Sensitive to Laura’s concerns, the Neuro ICU team sent a nurse to brief the step-down unit on how they had been caring for Marcus.

Marcus was eventually sent home. The road to recovery was daunting for a man many thought would never be able to walk or talk again. Damage to his frontal lobe caused him to be moody and easily aggravated. He couldn’t remember his life before the incident or immediately after. He had trouble walking. Because half his skull was missing (it was later replaced), he had to be very careful not to fall.

Marcus’s own memories of the incident begin only after his discharge from the Neuro ICU. He likens his recovery experience to pressing reset on a video game and trying to build a new character from scratch. “So many people who knew me before the accident come up and talk to me. I tell Laura that Marcus 1.0 must have been a really likeable guy,” Marcus says. Now, two years after that fateful fall on the stairs, Marcus has fully recovered. “If you just met him, you would never know [what happened],” Laura says.

In her husband’s view, the experience has changed his wife even more. After his recovery, Laura became a member of the Yale Neuro ICU Patient-Family Advisory Council. She also enrolled in nursing school, with the goal of becoming an ICU nurse. “She’s found her calling,” he says. She’ll graduate this year.

Even in the context of her new medical training, Laura believes that her experience in Yale’s Neuro ICU was unique. “ICUs around the country are trying to involve families more,” she says. “But at Yale they really made an effort. They became family to us. It's inspired me to follow their lead and give other people the same kind of help and hope that they gave me.” 

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