Until recently, what it meant to survive critical illness remained largely unknown. As a result, fundamental questions centered on whether such survivors have good long-term outcomes, whether these outcomes are the best possible results based on the provided care, and whether care would change if we knew more about outcomes beyond the intensive care unit (ICU) discharge required urgent examination.(1) Over the last decade, the science on long-term outcomes following critical illness has begun to fill these essential knowledge gaps.
What we have learned is that many survivors of critical illness experience post-intensive care syndrome (PICS).(2,3) In 1999, Hopkins and colleagues demonstrated the startling frequency with which acute respiratory distress syndrome survivors experienced long-term cognitive impairment(4); since then, the evidence has confirmed that survivors of many critical illnesses frequently develop new or worsening impairments in neuropsychological or physical function.(5-8) The Society of Critical Care Medicine (SCCM) has been the leader in bringing together clinicians and scientists to name and define PICS.(2)
How common and severe is PICS? The evidence keeps accumulating. For example, growing data show that one year after critical illness, 24% of survivors experience cognitive impairment that mimics mild Alzheimer disease(5); 20% to 30% of survivors report disabling symptoms of anxiety, depression or post-traumatic stress disorder(6,7); and 30% of survivors suffer from disabilities in the activities of daily living.(8) In addition, many survivors are unable to return to work,(9) and the need for post-acute healthcare use and an increased risk of hospital readmission are all too common consequences.(10-12) These changes exact a social and financial toll and serve as a barrier to a meaningful recovery.
We have also learned that an apparent gap exists between what survivors need and what they receive.(13,14) Survivors and their caregivers have shared that education, preparation and support are essential during recovery and that these needs extend well beyond hospital discharge.(13-15) Yet, while ICU culture has transitioned to fostering collaboration with our patients and caregivers,16 issues of survivorship are rarely addressed during ICU stays.(17)
Although a number of distractions try to tear us away from our core mission of the Right Care, Right Now™ for our critically ill patients, PICS is not a distraction. Here are our top five reasons why we believe PICS is, in fact, at the center of our mission of clinical excellence for the critically ill.
1. Our Patients Care about PICS
First and foremost, our patients care about long-term outcomes. While survival is the primary goal for patients and their loved ones, survivors highlight that neuropsychological and physical function are important patient-centered outcomes. Impairment in these domains is disruptive and life-altering.(13-15) Moreover, for some, healthcare that results in cognitive or physical impairment may be less desirable than death.(18)
2. Most Patients Survive
Each year, in the United States alone, nearly six million patients are admitted to an ICU.(19) Driven by care advances, short-term mortality after critical illness has never been lower. The result is that an estimated five million survivors of critical illness are discharged into our communities. Many of these survivors will be impaired in some way. These impairments frequently go unrecognized, and they have an impact that extends beyond the survivors.(20,21)
3. It Is the Future of Medicine
In the near future, healthcare systems will be evaluated on the care provided over a patient’s cycles of care.(22,23) Fortunately, the incentive to deliver coordinated longitudinal care aligns with how patients view their own health narratives.(13-15) As a result, strategies designed to mitigate long-term impairment, to prepare survivors and their loved ones for what to expect after critical illness, and to effectively coordinate care from the ICU to follow-up are precisely where efforts should be focused as we transition from understanding the survivor’s experience to figuring out how to ensure an enduring recovery.
4. It Will Help Us Grow
Caring about PICS is ultimately about reintegrating critical care into the longer-term trajectory of a patient’s life. This has always been one of the great joys of critical care—the intensity with which we share patients’ and families’ lives in these moments of crisis and the satisfaction that resulted. But we have historically been limited in our evidence base, lacking data on how to change our practice to achieve better lives for our patients.
To accelerate this process and to ensure that efforts are in line with the patient’s experience and needs, SCCM’s THRIVE Initiative proposes a partnership of healthcare providers, patients and families. This concept, championed as a “creative disruption of medicine,”24,25 puts patients and their families in the driver’s seat. The expectation is that novel solutions will emerge to improve the care of, and recovery from, critical illness.
5. We Can Make It Better
Lastly, we can do something about PICS. For years we were hamstrung by the lack of an evidence base, but that has changed in the last decade. In particular, two SCCM initiatives may fundamentally reduce the burden of PICS for our patients and families.
The ICU Liberation Initiative represents the state of the art in preventing PICS and embraces the element of family engagement and empowerment. This initiative will invigorate the effective implementation of the 2013 American College of Critical Care Medicine’s “Clinical Practice Guidelines for the Management of Pain, Agitation, and Delirium in Adult Patients in the Intensive Care Unit” across the United States.
THRIVE takes the proverbial baton, leverages the principles espoused in the ABCDEF bundle championed within the ICU Liberation Initiative to mitigate long-term impairment, and focuses on life after critical illness. At its boldest, THRIVE intends to partner with survivors to change the trajectory of recovery after critical illness. It is about changing the experience of survivorship from one that revolves around impairment to one that focuses on recovery. Ultimately, the multiphase plan expects to: build a network of in-person support groups, where survivors can help each other recover more effectively; discover and disseminate effective strategies for effective survivor-led support groups; complement these in-person activities with an Internet presence; educate non-ICU clinicians on PICS; and stimulate new knowledge about recovery.
In conclusion, we have learned that many survivors of critical illness experience long-term consequences. This realization affords us the opportunity to shift our perspective—and consequently our practice—to a horizon beyond the walls of the ICU. For that, we should all be grateful.
1. Angus DC, Carlet J; 2002 Brussels Roundtable Participants. Surviving intensive care: a report from the 2002 Brussels Roundtable. Intensive Care Med. 2003;29(3):368-377.
2. Needham DM, Davidson J, Cohen H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40(2):502-509.
3. Elliott D, Davidson JE, Harvey MA, et al. Exploring the scope of post-intensive care syndrome therapy and care: engagement of non-critical care providers and survivors in a second stakeholder meeting. Crit Care Med. 2014;42(12):2518-2526.
4. Hopkins R, Weaver L, Pope D, Orme JF, Bigler ED, Larson-Lohr V. Neuropsychological sequelae and impaired health status in survivors of severe acute respiratory distress syndrome. Am J Respir Crit Care Med. 1999;160:50-56.
5. Pandharipande PP, Girard TD, Jackson JC, et al. Long-term cognitive impairment after critical illness. N Engl J Med. 2013;369(14):1306-1316.
6. Davydow DS, Gifford JM, Desai SV, Needham DM, Bienvenu OJ. Posttraumatic stress disorder in general intensive care unit survivors: a systematic review. Gen Hosp Psychiatry. 2008;30:421-434.
7. Jackson JC, Pandharipande PP, Girard TD, et al. Depression, post-traumatic stress disorder, and functional disability in survivors of critical illness in the BRAIN-ICU study: a longitudinal cohort study. Lancet Respir Med. 2014;2(5): 369-379.
8. Iwashyna TJ, Ely EW, Smith DM, Langa KM. Long-term cognitive impairment and functional disability among survivors of severe sepsis. JAMA. 2010;304(16):1787-1794.
9. Griffiths J, Hatch RA, Bishop J, et al. An exploration of social and economic outcome and associated health-related quality of life after critical illness in general intensive care unit survivors: a 12-month follow-up study. Crit Care. 2013;17:R100
10. Prescott HC, Langa KM, Liu V, Escobar GJ, Iwashyna TJ. Increased one-year health care utilization in survivors of severe sepsis. Am J Respir Crit Care Med. 2014;190(1):62-69.
11. Jones TK, Fuchs BD, Small DS, et al. Post-acute care use and hospital readmission after sepsis. Ann Am Thorac Soc. 2015;12(6):904-913.
12. Hua M, Gong MN, Brady J, Wunsch H. Early and late unplanned rehospitalizations for survivors of critical illness. Crit Care Med. 2015;43(2):430-438.
13. Gallop KH, Kerr CE, Nixon A, Verdian L, Barney JB, Beale RJ. A qualitative investigation of patients’ and caregivers’ experiences of severe sepsis. Crit Care Med. 2015;43(2):296-307.
14. Cox CE, Docherty SL, Brandon DH, et al. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med. 2009;37(10):2702-2708.
15. Lee CM, Herridge MS, Matte A, Cameron JI. Education and support needs during recovery in acute respiratory distress syndrome survivors. Crit Care. 2009;13(5):R153.
16. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35:605-622.
17. Govindan S, Iwashyna TJ, Watson SR, Hyzy RC, Miller MA. Issues of survivorship are rarely addressed during intensive care unit stays. Baseline results from a statewide quality improvement collaborative. Ann Am Thorac Soc. 2014;11(4):587-591.
18. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061-1066.
19. Wunsch H, Angus D, Collange O, et al. Variation in critical care services across North America and Western Europe. Crit Care Med. 2008;36(10):2787-2793.
20. Davidson JE, Jones C, Bienvenu J. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618-624.
21. Netzer G, Sullivan DR. Recognizing, naming, and measuring a family intensive care unit syndrome. Ann Am Thorac Soc. 2014;11(3):435-441.
22. Porter ME. What is value in health care? N Engl J Med. 2010;363:2477-2481.
23. Porter ME, Lee TH. Why strategy matters now. N Engl J Med. 2015;372:1681-1684.
24. Topol E. The Creative Destruction of Medicine. New York, NY: Basic Books; 2012.
25. Topol E. The Patient Will See You Now. New York, NY: Basic Books; 2015.