Psychological Outcomes of Critical Illness Erin K. Kross, MD Senior Fellow Pulmonary & Critical Care Medicine February 23, 2008

Objectives Highlight the patient experience of critical illness Review psychological sequelae of critical illness –Post-traumatic stress disorder (PTSD) –What is PTSD? –Why does it happen after critical illness? Discuss post-traumatic stress disorder among patients – How common is it? – What are the risk factors for it? – What can we do about it? Discuss post-traumatic stress disorder among family members – How common is it? – What can we do about it?

Experiences of Critical Care What happens in the ICU can have long-term consequences for patients and families What we do for patients and their families in the ICU has long-term consequences

Psychological Outcomes of Critical Illness Major Depressive Disorder Generalized Anxiety Disorder Panic Disorder Post-traumatic Stress Disorder For family members: – All of the above – Complicated Grief Disorder

Post-traumatic Stress Disorder (PTSD) PTSD is common after traumatic events – General population – lifetime prevalence 5-6% men 10-14% women – War veterans (2-15%) – Rape or assault victims (14-80%) Yehuda. NEJM 2002;346(2): Jackson et al. Crit Care 2007;11(1):R27.

PTSD Traumatic events provoke fear, helplessness or horror in response to an event that threatens one’s life or safety Exposure to traumatic events increase risk of other psychological morbidity – Depression – Panic disorder – Generalized anxiety disorder – Substance abuse

Why Does PTSD Matter? Burden of symptoms can be high – Psychological stress, interruption of daily life – Inability to work – Inability to return to prior levels of functioning – Increased cost to society, secondary to increased health care costs

Diagnostic Criteria Exposure to a traumatic event Perceived or actual threat to one’s life or physical integrity, or that of another 3 domains – Symptoms of re-experiencing – Symptoms of avoidance and emotional numbing – Symptoms of increased arousal 2 criteria – Significant impairment in social, occupational or other functional domains – Symptoms present for at least 1 month after event

PTSD in the ICU ICU treatment for critical illness exposes patients and families to enormous stress – Experience of life-threatening illness – Need for intensive, often invasive medical procedures – Meets DSM-IV criteria for “traumatic event” Both patients and family members

Three Groups at Risk for PTSD 1)Patients who survive critical illness and are discharged following ICU care 2)Family members of individuals who survive critical illness 3)Family members of individuals who die during or shortly after their ICU stay

1) Survivors of Critical Illness

Survivors of Critical Illness About 20 studies currently in the literature Variation in study population – Number of subjects in the studies ranged 20 to 143 patients – Rates of follow-up ranged 30-84% Variation in study design – Prospective vs. retrospective – Survey instruments used vs. diagnostic tools – Live interview vs. phone interview Jackson et al. Crit Care 2007;11(1):R27.

Survivors of Critical Illness Review article – Medical ICU patients only Excluded surgical or trauma patients – Some restricted to acute lung injury or septic shock – Most excluded patients with prior psychiatric illness, neurologic trauma or disease Jackson et al. Crit Care 2007;11(1):R27.

Survivors of Critical Illness Evaluated for symptoms at different time points – Some studies looked at patients over time Range from 2 months to 8 years following discharge – Other studies only looked at one point in time Range from 3 months to 13 years following discharge

PTSD Among Survivors Prevalence rates ranged from as low as 5% to as high as 63% in survivors of critical illness Prevalence seems to vary over time – Highest prevalence when assessed close to the time of discharge – Prevalence decreases over time Stabilizes around 6 months following traumatic event

Risk Factors for PTSD Things we can’t change: – Younger age – Female gender – Prior mental health history Things we might be able to change: – Increased length of stay – Increased duration of mechanical ventilation Things we certainly can change: – Greater levels of sedation and/or neuromuscular blockade – Greater perceived social support appears to be protective Jackson et al. Crit Care 2007;11(1):R27.

Sedation in the ICU Sedative drug infusions – Prolonged periods of altered mental status – Delay in regaining consciousness once stopped Patients report pain and anxiety – Does sedation help or hurt the long-term psychological effects of being in the ICU? Helps blunt the experience But causes prolonged periods of amnesia Girard et al. Crit Care 2007;11(1):R28. Kress et al. AJRCCM 2003;168(12): Nelson et al. Crit Care Med 2000;28:

Sedation “Vacations” Daily sedative interruption – Often combined with spontaneous breathing trials – Known short-term benefits in patients requiring mechanical ventilation Shorter durations of mechanical ventilation Shorter ICU lengths of stay Kress et al. NEJM 2000;342:

Sedation and PTSD Daily sedation “vacations” vs. continuous sedation – Compared long-term psychological outcomes – Lower IES scores with sedation vacations – Trend towards lower PTSD (0% vs. 36%) with sedation vacations Kress et al. AJRCCM 2003;168(12):

Social Support and PTSD Long-term survivors of ARDS – Health-Related Quality of Life – PTSD The more social support, the less PTSD More PTSD among those with high anxiety and pain More anxiety among those who remembered “difficulty breathing” and “nightmares” Deja et al. Crit Care 2006;10(5):R147.

2) Family Members of Survivors of Critical Illness

Family Members Critical illness affects not only the patient who is sick, but also their family and friends ICU can be a traumatic environment for these individuals – Alarms, machines, monitors, invasive devices

Why are Families at Risk for PTSD? Traumatic experience – DSM-IV criteria Family members are often asked to assume the role of surrogate decision-maker – Participate in decision making in the ICU – ICU patients often not able to participate in decisions about withholding or withdrawing life support

PTSD among Family Members Far fewer studies about how the ICU experience affects family members – Largest study from France – Conducted in 21 medical-surgical ICUs in 2003 – Family members eligible if came to visit within 48 hours of admission – Closest family member was identified – Phone interviews conducted 90 days after ICU discharge (or death) Azoulay et al. AJRCCM 2005;171:

PTSD among Family Members 228 family members of patients who survived their critical illness participated 28.9% screened positive for significant levels of PTSD symptoms Risk factors identified: – Things we can’t change: Female gender Children of the ICU patient – Things we can change: Feeling information is incomplete Sharing decisions in the ICU Azoulay et al. AJRCCM 2005;171:

Smaller Studies of Family Members Only a handful of other studies PTSD as high as 49% – 6 months after discharge “Acute” symptoms very common – Prevalence of “PTSD” of 81% One week after admission to the ICU – Doesn’t meet criteria for PTSD – High burden of psychological symptoms

3) Family Members of Those Who Die in the ICU

Family Members of Those Who Die Death is a stressful event for families Studies of PTSD following bereavement – Deaths outside the ICU – Interviews with spouses 2 months after death of their spouse – 10% met criteria for PTSD – No difference between types of death Chronic illness vs. sudden, unexpected death Did not discuss hospitalization or ICU admission

PTSD among Family Members Primary study is from France 56 family members of patients who died were interviewed 90 days after death Prevalence of PTSD for this group was 50% Azoulay et al. AJRCCM 2005;171:

Some Families are at Higher Risk Among all patients that died – 50% Family members of patients who died in the ICU after end-of-life decisions (60%) Family members who were involved in end-of- life decisions (80%)

How Do We Decrease PTSD? French group followed up with an interventional study Goal: Lessening the effects of bereavement among family members whose loved one dies in the ICU Enrolled 126 family members of patients who died in the ICU Laurtrette et al. NEJM 2007;356:

Intervention to Decrease PTSD Intervention: Structured end-of-life care family conference and a brochure for the family Control: Usual care Interviews conducted 90 days following the death Laurtrette et al. NEJM 2007;356:

Intervention to Decrease PTSD Prevalence of PTSD: – Control group = 67% – Intervention group = 45% Primary differences between the 2 groups was attributed to physician-family communication Intervention group spent more time in family conferences – Spent more of the conference time talking than the control group

Are the U.S. and France the Same? Differences in regional, racial, religious and cultural influences affect families’ preferences for care and clinicians’ delivery of care Decision making is different in France – More than half of family members did not want to participate in end-of-life decision making – 39% of physicians preferred to involve family members in end-of-life decisions Laurtrette et al. NEJM 2007;356: Vincent et al. Crit Care Med 2001;29(2S):N52-5.

Are the U.S. and France the Same? In North America, patient autonomy is key – Extended to family members – Physicians involve family members in decision making for end-of-life care 70-80% of the time – Family members more satisfied with care when they are involved in decision-making at the end- of-life Participation in end-of-life decision-making may result in differing burdens of psychological disease Laurtrette et al. NEJM 2007;356: Vincent et al. Crit Care Med 2001;29(2S):N52-5.

Preliminary Data from U.S. End-of-Life Care Research Program at HMC Group at Yale Both finding lower prevalence of PTSD and depression than in France – Still higher than the general population Gries et al. In preparation. Seigel et al. Crit Care Med, in press.

Challenges to Studying PTSD in the ICU Diagnosis of PTSD requires symptoms of distress, and a precipitating traumatic event Difficult to know other history Significant co-morbidity with PTSD and other psychiatric illnesses – Difficult to decipher the cause of PTSD symptoms, as well as the relative contribution of PTSD to an individual’s overall level of distress

Challenges to Studying PTSD in the ICU Difficult to separate the experience of the ICU from other aspects of health care and illness Difficult to separate this experience from other traumatic events that may have been experienced in the past Clearly this is an important problem for both patients and family members of critically ill patients

What Can We Do? For patients: – Everything they experience in the ICU may have long-term consequences – Regardless of sedation, there may be memories of their ICU stay – Decrease sedation as much as possible Daily interruption of sedation – Provide social support – COMMUNICATION

What Can We Do? For families: – The ICU experience is traumatic for families too – Provide social support – Participation in decision-making – COMMUNICATION

Acknowledgements Video courtesy of the IPACC study – Harborview End-of-Life Care Research Team J. Randall Curtis Ruth Engelberg Patsy Treece Elizabeth Nielsen Many, many more