As a physician who has survived stays in the intensive care unit and suffered from post-intensive care syndrome (PICS),(1) I would like to share my experiences during my hospital stays and recovery periods. By sharing my story, I hope to illustrate the simple things that can affect a patient’s care.
Outcomes after ICU stays are sobering and dismal. Less than 9% of patients who require prolonged mechanical ventilation have functional independence at one year.(2) Regardless of why a patient needed critical care or whether mechanical ventilation was necessary, recovery to an individual’s baseline is difficult, and in some cases impossible.(3)
Opportunities to ameliorate PICS are not yet well studied, although good research is being completed on reducing deconditioning,(4) delirium, and time on the ventilator.(4,5) But as a patient whose experience has intersected with these research-based “theoretical” issues, I have seen many potential opportunities to affect the ICU survivor’s quality of life. Unfortunately, many of these opportunities may be underappreciated or missed altogether by practitioners worried about the crises that punctuate the ICU stay.
Waking in the ICU
When I have a severe flare-up of my underlying disease, I develop progressive shortness of breath. This respiratory failure often culminates in a frenzied intubation in the emergency department. Fight-or-flight reflexes associated with shortness of breath, coupled with someone tying restraints while someone else holds an Ambu bag to my face, are terrifying. The usual doses of sedatives (in the setting of a CYP2D6 mutation) can result in awareness while paralyzed. Titrating medications based on a “normal” heart rate is ineffective when my baseline rate is in the 50s. My husband’s efforts to direct providers to the succinct care plan, including medication doses, recommended by my physicians are often ignored.
Later, when I awaken in the ICU, I recall being turned, the soreness from one hip immediately released onto soft pillows under the second hip. Refreshing oral care makes me feel less dirty and more human. If I am lucky, I awaken to the soft touch of my husband or mother. If a brave practitioner has allowed my husband or mother to violate the visiting hour policy, I am always grateful to that person.
Sometimes, my memories are not pleasant. I have awakened to coughing spasms from a painfully Sharp suction catheter, a situation well-described in the literature.(6) The drenching fevers of a hospital-acquired infection or the nightmares of delirium are some of my first memories after sedation wears off. Both of these complications of care deserve further mention. My hospital-acquired infections have been infrequent, but devastating. They resulted in a dramatic decline in my health: ventilator-associated pneumonia resulted in septic shock, adult respiratory distress syndrome, fungemia from total parenteral nutrition, and a placement in hospice. The decision to pursue palliative care was made not only because of my underlying illness, but also the miserable, rapidly declining quality of life I had experienced in the preceding year as I tried to recover from a central line-associated bloodstream infection. If financial measures could somehow quantify my suffering, hospital charges for the preceding six months had been nearly $300,000. Fortunately, I survived that complication.
A more common and potentially more difficult complication to prevent and manage is delirium. Daily decisions about sedation are probably the most important decisions for everyone involved.(7) At times, I have received so much sedation and analgesia, it took days to wake up. On other occasions, extra boluses of narcotics would have been gladly welcomed. In many cases, the right mix of drugs seems impossible to find, and delirium may result.
Delirium “dreams” are powerful and frightening; I often remember minute details of these dreams years later. Although the dreams are fantastical, I have trouble dismissing them because my coping mechanisms are impaired by medications, and because the dreams often segue into my “real” life. After my husband and I were victims of an armed home invasion a few years ago, the hooded robbers taunted me in my next delirium dreams.
Early mobility has dramatically affected my delirium, as has been demonstrated for others.(4) During one ICU stay, I was delirious and paranoid. The number of people walking past my room concerned me. My nurse tried to explain that my room was located near the only entrance to the ICU. All of the ICUs in which I had worked had more than one entrance – and my trust in the team had been eroded by painful procedures and paresthesias from a restraint tied too tightly. As a result I became increasingly more paranoid each time a person walked past.
Twelve frightful hours later, physical therapy staff arrived. Finally liberated from my restraints, my bed, and even my room, it became clear to me that my room was not only near, but actually facing the only entrance to the ICU. The situation promptly de-escalated and soon I was ready for discharge.
Life After the ICU
As discharge paperwork arrives, there is excitement about leaving the hospital: unfiltered sunlight, blue sky, the feel of the warm wind, the sound of the birds, and the joy of having a hot shower. Then reality hits when I try to get out of the car and up the three stairs to our home.
Warning patients and their families that “every day in bed takes three days to recover” is no preparation for the act of trying to stand unaccompanied or the immediate task of fixing food, even something as simple as toast.
Sleep is elusive, another known complication of sedation in the ICU.(8) For at least two weeks after an ICU stay, I’m lucky to achieve two hours of uninterrupted sleep. I have learned to tell time by the path of the full moon as it passes over our house. During these long nights, the vivid delirium dreams return. Once a spring thunderstorm sent me to the corner of a closet – the noise, flashes of lights and shadows assaulting my senses.
Muscle weakness plagues me.(9,10) Inactivity, both from the hospital and in the immediate post-discharge period, can result in musculoskeletal pain, such as piriformis syndrome. At times, this pain is not a priority for my patient care plan; at other times, the pain has been mismanaged with narcotics. Physical therapy is instrumental in diagnosing and managing these symptoms, but these appointments often were not made or even recommended at discharge.
Follow-up is key, but many care providers have no knowledge of what happened in the ICU or what specialized care is needed moving forward. Although healthcare systems call postoperative patients the Day after an outpatient surgery, no one calls the ICU patient who was just discharged home. No routine follow-ups are scheduled with the ICU providers who treated me. There is no seamless transition between the provider who ordered initial home care and whoever will continue to do so. No one talks with the physical therapists about their assessment of my progress or setbacks, even though they see me two or three times a week. I have rarely been offered durable medical equipment, like a shower chair. There is never discussion of the possibility of post-traumatic stress disorder or how to manage it, a problem that has affected my decisions about when, where, and how I seek healthcare the next time I am sick.
A Bright Future
Though my experience was at times frustrating and difficult, critical care has improved tremendously. Quality improvement/outcomes-based mandates have forced us to concentrate on details of care we previously overlooked; these have had a profound impact on my individual care.
The most important change for me personally has been early mobility, which has helped my delirium as well as accompanying muscle weakness and pain. Improvements to hand washing, central lines, urinary catheters, and ventilator bundles have reduced my incidence of hospital-acquired infections. ICU routines (reducing noise, enforcing “nap times,” surrounding me with familiar people, using restraints less often), coupled with changes to sedation (using medications that maintain sleep architecture and boluses instead of continuous infusions), have reduced my delirium episodes.
Finally, finding a health system that has embraced my family as active participants in my care has impacted our perceptions of my care tremendously. There is no detail in the ICU that does not affect the severity and duration of the critical illness, the capacity to recover, or the rate of decline after discharge. The challenge to providers is to focus not only on acute issues in the ICU, but also to consider how treatments impact long-term patient outcomes – especially in light of the scarce resources dedicated to outpatient follow-up for ICU survivors.(11)
- Unroe M, Kahn JM, Carson SS, et al. One-year trajectories of care and resource utilization for recipients of prolonged mechanical ventilation: a cohort study. Ann Intern Med. 2010;153(3):167-175.
- Iwashyna TJ. Trajectories of recovery and dysfunction after acute illness, with implications for clinical trial design. Am J Respir Crit Care Med. 2012;186(4):302-304.
- Harvey MA. The truth about consequences--post-intensive care syndrome in intensive care unit survivors and their families. Crit Care Med. 2012;40(8):2506-2507.
- Schweickert WD, Pohlman MC, Pohlman AS, et al. Early physical and occupational therapy in mechanically ventilated, critically ill patients: a randomised controlled trial. Lancet. 2009;373(9678):1874-1882.
- Girard TD, Kress JP, Fuchs BD, et al. Efficacy and safety of a paired sedation and ventilator weaning protocol for mechanically ventilated patients in intensive care (Awakening and Breathing Controlled trial): a randomised controlled trial. Lancet. 2008; 371(9607):126-134.
- Arroyo-Novoa CM, Figueroa-Ramos MI, Puntillo KA, et al. Pain related to tracheal suctioning in awake acutely and critically ill adults: a descriptive study. Intensive Crit Care Nurs. 2008;24(1):20-27.
- Kress JP, O'Connor MF, Pohlman AS, et al. Sedation of critically ill patients during mechanical ventilation. A comparison of propofol and midazolam. Am J Respir Crit Care Med. 1996;153(3):1012-1018.
- Parsons EC, Kross EK, Caldwell ES, et al. Post-discharge insomnia symptoms are associated with quality of life impairment among survivors of acute lung injury. Sleep Med. 2012;13(8):1106-1109.
- van der Schaaf M, Dettling DS, Beelen A, Lucas C, Dongelmans DA, Nollet F. Poor functional status immediately after discharge from an intensive care unit. Disabil Rehabil. 2008;30(23):1812-1818.
- Herridge MS, Cheung AM, Tansey CM, et al. One-year outcomes in survivors of the acute respiratory distress syndrome. N Engl J Med. 2003;348(8):683-693.
- Herridge M, Cox C. Linking ICU practice to long-term outcome: fostering a longitudinal vision for ICU-acquired morbidity. Am J Respir Crit Care Med. 2012;186(4):299-300.