Newswise — The last time the world saw Cassie Wolfe as she used to be—a vibrant, stylish, independent young woman—was Oct. 19, 2023. One minute, the 23-year-old was enjoying a restaurant’s line dancing night with her sister near their home in Lebanon, PA. The next, she was lying unconscious on the bathroom floor.
Wolfe had suffered both a sudden cardiac arrest and stroke caused by an undetected genetic condition called arrhythmogenic cardiomyopathy, affecting the heart’s muscular wall. She was airlifted from a local hospital to the Hospital of the University of Pennsylvania (HUP)’s heart and vascular intensive care unit and remained in a coma for two months.
During that time, Wolfe's mom and caregiver, Ann Louise, begged for answers. Would Wolfe’s brain recover enough for her to wake up? If she did, what would her life look like? Would Wolfe be the daughter that her mother knew? As she wondered, a team of experts worked behind the scenes to predict how Wolfe’s recovery might look.
Comas aren’t like what you see in the movies, where patients either wake up with all their memories and skills intact or don’t wake up at all. Consciousness, says HUP neuro-ICU physician David Fischer, MD, is less like a light switch that turns off and on and more like a dimmer, with gradations of light to dark. And knowing who will wake up, who will have a meaningful recovery, and what that will look like is an area where medical knowledge is still limited but growing.
Fischer has devoted himself to finding better ways of detecting consciousness and predicting recovery, so caregivers like Wolfe’s mother have more certainty and support. To do this, in the summer of 2022, he created the RECOVER (REcovery of COnsciousness Via Evidence-Based Medicine and Research) program to provide specialized, comprehensive, and ongoing care for coma patients.
Every expert matters when predicting patient outcomes
Each Wednesday afternoon, specialists from across the hospital meet to share their observations, insights, and recommendations about the state of recovery for patients who are in various stages of coma recovery, often due to a cardiac arrest or stroke. The team includes representatives from physical and rehabilitative medicine, radiology, palliative care, physical and occupational therapy, ethics, social work, and others.
“We have many goals, but the most important, ultimately, is that patients and their families get the support they need when potentially making the biggest decision of their life—deciding whether to continue or stop life support for their loved one with a brain injury,” Fischer said. “We want to identify the patients who have a chance of a meaningful outcome ... and for the patients who don’t, give their families the support to transition them to hospice and allow them to pass away peacefully.”
They review the data on each patient, talk about the family’s goals, and discuss the resources needed to support them once they leave the hospital. Blood tests, brain scans, and assessments of how the patients are moving and communicating—as well as the available facilities for post-hospital care, and the anticipated financial costs—all come into play. In Wolfe’s case, her various tests and scans suggested her brain would recover to a point her mother thought Wolfe could live with.
“It’s the ideal that we aspire to at Penn Medicine: People with very different training and thought processes offering suggestions for how we can approach a case differently and best support the family,” said Rachel Klinedinst, DNP, director of palliative care for HUP and Penn Presbyterian Medical Center (PPMC). “Dr. Fischer wants to hear everyone’s ideas ... It really feels like a community.”
William Pino, PT, DPT, one of the lead physical therapists at HUP, said he appreciates that Fischer wants him and his non-physician colleagues at the table. Physical therapists, for example, can share insights into the patients’ likely rehabilitation needs if they survive their hospitalization, and the team can weigh that information against what a patient would find acceptable.
“It’s encouraging to hear everybody’s viewpoint,” Pino said, “because these types of patients have so many needs.”
No matter the prognosis, having so many specialists share their expertise gives the neurologists the confidence that they’re giving the family the best possible information to decide about their loved one’s care.
“These conferences allow us to adopt a more holistic, consensus-based approach to anticipating what these recoveries are going to look like,” Fischer said. “It helps to prevent the potential error associated with any one person or team making a decision on their own.”
In Wolfe’s case, Fischer—armed with the brain scans, experience with previous patients, and the insights from the weekly conference—told her mother he believed Wolfe would eventually wake up and go on to live a meaningful life, albeit with some executive functioning deficits and a need for some assistance.
Creating the infrastructure
The seeds of the RECOVER program were planted during Fischer’s neurology training, when he observed how life-and-death predictions were typically made by physicians who often didn’t see the long-term recoveries they were trying to predict.
Most patients seen by the program are at HUP, but Fischer plans to expand the program to PPMC in 2025 and eventually to other hospitals throughout the University of Pennsylvania Health System. At the same time, he is working to share the model with other medical institutions across the country.
In addition to the multidisciplinary meeting, Fischer and neurology residents staff an outpatient clinic that supports patients and families for as long as needed. More than any tests a neurologist could run, seeing patients over the long term and understanding how families feel about the pace and challenges of recovery gives the team “that first-hand experience and intuition about what recoveries tend to look like,” Fischer said.
The spectrum of recovery
Since the start of the program, Fischer has seen the entire spectrum of coma recovery in patients, from those with zero or mild deficits, to those who can say simple things but require round-the-clock nursing care, to those who never wake up.
So far, all signs point to the team's predictions about Wolfe’s recovery being true.
After more than three months in the hospital and rehab, she had lost her short-term memory, and even her personality and voice were different. But by early 2024, her motor skills, memory, and other functions were slowly returning, and her mother was grateful for a front-row seat to her daughter’s recovery, as challenging as it was.
“While we are so thankful to have her—and it is a miracle—with every brain injury patient who recovers, there’s still so much grief. She’s a different version of herself,” Wolfe’s mother said. Still, she wrote in late May on a Facebook page chronicling her daughter’s recovery, “even though some, or many, things are not possible today doesn’t mean they won’t be possible further along the path.”
Fischer has continued working with Wolfe and her family through the challenges of recovery and offered resources where needed. Every patient who came before her helped Fischer and his team predict what her recovery would look like and know how to support her family, he said. And her family’s experience, in turn, will help him and his colleagues best care for future patients.
“By learning more about recovery from these conditions,” Fischer said, “we are always improving our ability to make more precise predictions for the future.”