"Surviving the ICU is often just the beginning of a long journey, marked by a constellation of physical, cognitive, and psychological challenges known as Post-Intensive Care Syndrome (PICS)."
The harrowing experience of Joseph Masterson, a 63-year-old attorney on the cusp of retirement, underscores the profound and often underestimated long-term consequences of critical illness and intensive care unit (ICU) stays. What began as a sudden cardiac arrest while driving on November 16th in Pittsburgh, leading to a collision with a guardrail and loss of consciousness, evolved into an arduous battle for survival and subsequent recovery, highlighting the pervasive reality of Post-Intensive Care Syndrome (PICS).
Masterson’s ordeal began the moment other drivers intervened, breaking his car window and pulling him to safety. A passing volunteer firefighter immediately initiated CPR, a critical intervention that continued until paramedics arrived and transported him to UPMC Mercy hospital. The subsequent 18 days in the Intensive Care Unit (ICU) were fraught with peril. For 14 of those days, Masterson relied on a ventilator to breathe, a stark indicator of the severity of his condition. During this period, he developed delirium, a common and disorienting state in critical care, necessitating antipsychotic medication. Despite receiving nutrition through a feeding tube, he experienced significant weight loss. "Honestly, we weren’t sure he was going to make it," recounted his brother-in-law, Ron Dedes, encapsulating the family’s profound anxiety.
Against the odds, Masterson survived. He was discharged on February 1st, returning home to a supportive family environment characterized by near-constant care. Through dedicated rehabilitation with various therapists, he has regained the ability to walk, albeit with residual weakness, and can manage his personal care. His speech, once slurred and difficult to comprehend, has shown remarkable improvement, enabling him to perform simple tasks like preparing a sandwich.
However, the journey is far from over. "Our biggest concern now is his memory," stated Dedes. Masterson, who until recently handled complex legal matters, now struggles with recalling conversations and events from mere hours prior, explained his sister, Patti Dedes. Basic tasks such as operating a microwave or making a phone call remain beyond his current capabilities. In a recent interview, Masterson described himself as "much, much better than I was," a testament to his progress, yet he faltered when asked his age, illustrating the cognitive deficits that persist. Post-discharge assessments confirmed cognitive impairment and depression, common sequelae of critical illness.
These prolonged symptoms are recognized within critical care medicine as Post-Intensive Care Syndrome, or PICS. This complex condition can manifest in physical, psychological, and cognitive impairments that may persist for months or even years. In the United States, over five million individuals are admitted to ICUs annually across approximately 5,000 hospitals. Research indicates that more than half of these survivors experience PICS-related issues, with advanced age being a significant risk factor.
The persistent challenges faced by PICS survivors and their families often come as a surprise. "The belief is that they’ll leave the hospital and be back to normal in two or three weeks," observed Dr. Brad Butcher, a critical care physician who treated Masterson and has recently published on PICS in JAMA. "That doesn’t align with the reality."
Indeed, with the increasing utilization of ICUs and advancements in medical treatments, the population susceptible to PICS is growing. The Society of Critical Care Medicine (SCCM) estimates that between 70% and 90% of adult ICU patients now survive their critical illness. "Everyone is grateful that the patient survived," said Dr. Lauren Ferrante, a pulmonary critical care physician and researcher at Yale School of Medicine. "But that’s just the beginning of a long recovery." A study she co-authored on patients aged 70 and older revealed that within six months of discharge, only about half had regained their pre-ICU functional capacity.
ICU survivors face a daunting array of challenges. The symptoms of PICS span a wide spectrum, from physical manifestations like weakness, pain, neuropathy (tingling in the extremities), and malnutrition, to significant mental health issues, predominantly anxiety and depression. Cognitive difficulties, as experienced by Masterson, are also highly prevalent, encompassing problems with memory, attention, concentration, and language. Dr. Butcher emphasized that for many, surviving critical illness is a life-altering experience, noting that patients undergoing emergency or scheduled surgeries and subsequently admitted to the ICU also exhibit high rates of new physical, mental, and cognitive problems a year later.
Paradoxically, the very treatments that save lives in the ICU can contribute to the development of PICS. Patients admitted to the ICU typically have severe organ failure requiring immediate intervention and continuous monitoring. This often necessitates mechanical ventilation, which in turn requires sedatives. Dr. Carla Sevin, a pulmonary critical care physician and director of the ICU Recovery Center at Vanderbilt University Medical Center, explained that sedation can induce delirium, a key factor in cognitive decline. Furthermore, the constant beeping of monitors, 24/7 bright lighting disrupting sleep, and family visit restrictions can isolate patients, depriving them of crucial emotional support.
Gregory Matthews, an 80-year-old retired accountant from St. Petersburg, Florida, spent nearly a month in the ICU following a lung transplant in 2014. He vividly recalls experiencing hallucinations, including visions of mice scurrying across walls and the perception that he was being framed for drug trafficking. He recounted an incident where he mistook a doctor for a murderer, seeing a rifle, and jumped out of bed, tearing out his IV lines. The staff had to restrain him for several days.
However, immobility itself poses significant risks, as patients rapidly lose muscle mass and strength. "Our bodies aren’t built to lie down all day," noted Dr. Ferrante. Psychologically, post-traumatic stress disorder (PTSD) is common, comparable to that seen in combat veterans or survivors of sexual assault, according to Dr. Sevin. Families can also experience anxiety and depression alongside their loved ones.
In response to these concerning outcomes, physicians and administrators at approximately 35 hospitals across the United States have established post-ICU clinics. These multidisciplinary centers bring together doctors, nurses, pharmacists, therapists (physical, occupational, cognitive, speech), and social workers to comprehensively assess and manage multiple PICS-related conditions. Vanderbilt’s clinic began seeing patients in 2012, while the University of Pittsburgh Medical Center’s Center for Critical Illness Recovery, founded by Dr. Butcher in 2018, treats around 100 patients annually, including Masterson. Yale launched its clinic in 2022.
These clinics implement evidence-based practices recommended by the SCCM, which have demonstrated a significant reduction in post-ICU symptoms. These strategies include using lighter sedation, mobilizing patients earlier, conducting daily breathing assessments to expedite ventilator weaning, and relaxing family visit restrictions. Many clinics also offer support groups for patients and families. Evidence suggests that keeping an ICU diary, documenting patient and caregiver experiences, along with engaging in physical exercise and rehabilitation, can improve mental health post-discharge.
Conversations about patients’ preferences for future critical care are also a crucial component. In instances of recurring critical illness, patients are encouraged to consider their options: would they opt for another ICU stay with the risk of PICS, or would they choose palliative care, prioritizing comfort over aggressive curative measures? Some patients are left with permanent disabilities following their ICU experience.
Dr. Butcher, while acknowledging that these newer practices need much wider adoption, expressed optimism about the future of critical care. "We’re going to find better diagnostic tools, better prevention strategies, and better treatments," he stated.
For now, however, the ICU experience remains disorienting and, at times, traumatic. When Dr. Butcher surveyed 117 patients at his post-ICU clinic about their future medical preferences, a significant portion indicated a desire to limit aggressive interventions. Approximately one-third preferred to reduce the level of aggressive care. Of these, nearly a quarter would opt for "do not resuscitate" and "do not intubate" orders, and almost 7% stated they would never want to return to an ICU.
Masterson continues his recovery, acknowledging his limited excursions outside the home. "I’ve been better off at home," he remarked. He harbors a hope of regaining enough strength to resume running, a pastime he previously enjoyed several times a week for three to four miles. His pre-hospitalization physical condition and cognitively demanding career are considered positive factors for his recovery, according to Dr. Butcher.
His family navigates a delicate balance between hope and apprehension. "Who knows how he’ll be down the road," Dedes mused, reflecting the daily uncertainty many PICS survivors and their families face. "We’re taking it day by day." The journey through critical care and its aftermath is a testament to the resilience of the human spirit, yet it also highlights the critical need for continued research, improved clinical practices, and comprehensive support systems for those navigating the complex landscape of recovery.