Chronic Critical IllnessKeri Holmes-Maybank, MDLeigh Vaughan, MDJune 18, 2013Medical University of South Carolina

Define chronic critical illness (CCI). List the long term physical and emotional

disabilities caused by CCI. Recognize who is at greatest risk for death

within one year of CCI. Describe the impact of CCI on caregivers. Recognize the financial costs of CCI.

Learning Objectives

The number of patients with CCI is increasing.

The likelihood of patients with CCI recovering full functional status is poor.

Caregivers of patients with CCI are substantially impacted.

Good communication is essential for appropriate decision making in patients with CCI.

Key Messages

Survived but not recovered from acute critical illness

Distinct syndrome: respiratory failure, metabolic, neuroendocrine, neuropsychiatric, immune derangements

Respiratory failure requiring prolonged ventilation◦ Anywhere from 2-21 days ◦ CMS >6h/day on vent for >21 consecutive days

Tracheotomy ◦ Indicates long expected wean time◦ Marker of transition from acute to chronic

Chronic Critical Illness - Definition

Profound weakness ◦ Myopathy ◦ Neuropathy ◦ Alterations of body composition: loss of lean body

mass, increased adiposity, anasarca

Endocrine◦ Impaired anabolism◦ Low target organ hormone levels◦ Bone hyperresorption◦ Male hypogonadism

Syndrome

Severe, prolonged, and permanent brain dysfunction

Coma Delirium

◦ Increased LOS◦ Higher mortality and morbidity

Risk factors◦ Long time in ICU◦ Multiple medications◦ Long LOS

Syndrome

Recurrent infections (often MDR) Skin breakdown/pressure ulcers Nutritional deficiencies/undernutrition Symptoms of distress

◦ Pain 44%◦ Thirst◦ Dyspnea◦ Depression◦ Anxiety◦ Inability to communicate 94%◦ Hunger◦ Sadness, worry, nervousness >60%

Syndrome

10% of ventilated patients become CCI

30-53% of CCI patients will wean

Highest time for death is 60-100 days after initiation of ventilation for CCI

If do not wean in 60 days will likely not wean

Successful wean does not equal survival

Prognosis of Respiratory Failure

48-68% one year mortality across study populations

Mortality 6 months after discharge 56%

DC survival ~55d

CCI Mortality

21% alive but severe dependency 26% alive but fair dependency <10% independent

53% survived but poor qol

Very rare to go back to previous functional level

Prognosis for Functional Recovery

Most CCI require long term care for physical dysfunction and/or cognitive impairment

DC from hospital to rehab, more likely to be home at 6 months

If institutionalized at 6 months, will not go home

50% higher readmission compared to other post vent patients

Outcome

<65 yo and poor prior functional status 75 yo 95% mortality

Residual organ dysfunction Diabetes Renal failure

Worst Prognosis

Nutrition Physical Therapy Occupational Therapy Speech Therapy Respiratory Therapy Nursing Case Managers Wound Care

Multidisciplinary Approach

Nutrition ◦ Avoid overfeeding

Stress hyperglycemia Early mobilization Prevent infections: line sepsis, pneumonia, C. diff

◦ Remove catheters◦ Restrict antibiotic use ◦ Handwashing◦ Isolation◦ Maintain skin integrity

Palliative care

Improve Outcomes

10% of all vented patients become CCI 100,000 patients/yr US 20-40% of ICU beds/critical care resources

$24 billion annually $3.5 billion additional for survivors (LTAC,

nursing, home health)

Utilization of Resources

Advances in critical care enable more patients to survive acute critical illness

Increase in tracheotomy: 1993 - 8.3/100,000 to 2002 - 24.2/100,000

Project 600,000 CCI patients in 2020

Utilization of Resources

Use disproportionate amount of health care resources

Poor outcomes◦ High 1 year mortality◦ Diminished quality of life◦ Important functional and cognitive limitations◦ Prolonged assistance

Utilization of Resources

Neglect their own physical health and decline

Increased Overload (negative attitudes & emotional reactions to the caregiving experience)

Increased Burden (disruptions/changes in the caregiver’s life and household - increases over time)

84% caregivers quit work or significantly alter work schedule

Financial hardship (even in insured)

Caregivers

Depression - worsens ◦ Increased functional impairment and cognitive

impairment of the dependent ◦ Poor health, perception of overload and burden,

female, and younger age of the caregiver

49% caregivers reported “a lot” or “severe” stress associated with caregiving

Caregivers

Caregivers with patients in institution had higher depression, overload, poor health, and burden scores

Patients in institution have higher physical dysfunction and cognitive impairment

Caregivers in the home receive less assistance from family members and friends than those in institution

Caregivers

Due to survival from the acute illness there is misplaced optimism for:◦ Meaningful recovery◦ Recovery from life-threatening illness◦ Survival◦ Functional independence

by family, patient and often MD

Misunderstanding prognosis caused by◦ Surrogate hopes for survival◦ Surrogate does not understand prognosis◦ Lack of prognostication by MD◦ Discordance between surrogates and physicians about potential

outcomes

Expectations

Surrogates had higher expectations than physicians

Expectations

Expectation Caregiver MD

Patient survival 93% 44%

Good QOL 83% 4%

Good function 71% 6%

Despite poor outcomes, life-sustaining treatments are continued for CCI

Partly from a lack of understanding of outcomes from inadequate communication between clinician, patients, and families

80-93% decision makers report were not told◦ Functional dependency ◦ 1-year survival ◦ Caregiving needs

Communication

SUPPORT Trial (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment)

<40% reported discussion about prognosis or preference for life-sustaining therapy

50% preferring palliative care felt treatment received was contrary to their goals

25% felt they did not know the team’s approach to care

Family conferences, MD missed opportunities to explore comments about patient treatment preferences

Ineffective Communication

31% felt physician made decision to prolong ventilation

80% said not given choice besides vent 50% said not given expected hospital survival Almost 100% said not given expected survival after

discharge 54% of families failed to understand diagnosis,

prognosis or treatment after meeting with MD Many families report fragmented, scant, conflicting

communication “Usual care” in academics = info from nurses and

trainees

Ineffective Communication

MD: ◦ May not give basic info necessary for decision making◦ Uncomfortable discussing prognosis◦ Uncomfortable with uncertainty

Patient/caregiver receptivity: ◦ Stress, anxiety, depression, and denial are distractions

impair families’ comprehension and decision-making

66% caregivers had anxiety and depression 2/2 to inadequate communication from MD that affected decision-making

Barriers to Communication

100% want MD honest

91% Optimistic

Caregiver Desires

Most older adults would refuse life-sustaining treatments if the expected outcome were survival with severe functional or cognitive impairment

Impairment influenced treatment preferences even more than the likelihood of death

Would decline treatment if there was even a 50% chance of severe functional or cognitive impairment

Cognitive impairment is heaviest burden and worse than death - most important part of decision making

Decision-Making

Help to align treatment decisions with values and preferences

Results of systematic attempts to improve communication ◦ Shorter ICU stay◦ Shorter hospital stay ◦ Greater comprehension of relevant information◦ Higher levels of family satisfaction ◦ Appropriate discontinuation of life-sustaining

treatment for patients who would not benefit◦ Less anxiety/depression/PTSD among families

Improved Communication

Nature of illness and treatments Prognosis for outcomes including

◦ Ventilator independence◦ Function◦ Quality of life

Impact of treatment on symptom burden Potential complications of treatment Alternatives to continued treatment Expected care needs after hospitalization

What to Discuss

Camhi SL, Nelson JE. Chronic Critical Illness. Intensive Care Medicine. Springer 2007. 908-917.

Carson SS, Bach PB, Brzozowski L, Leff A. Outcomes after long-term acute care. An analysis of 133 mechanically ventilated patients. Am J Respir Crit Care Med 1999;159:1568-1573.

Cox CE, Marinu T, Sathy SJ, et al. Expectations and outcomes of prolonged mechanical ventilation. Crit Care Med. 2009 November;37(11):2888-2894.

Douglas SL, Daly BJ. Caregivers of long-term ventilator patients. Physical and psychological outcomes. Chest 2003;123:1073-1081.

Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: Perceptions of older patients, caregivers, and clinicians. Am J Geriatric Soc 2003;51:1398-1403.

Girard K, Farrin TA. The chronically critically ill: To save or let diet? Respir Care. 1985 May;30(50):113-347.

Nelson JE, Mercado AF, Camhi SL, et al. Communication about chronic critical illness. Arch Intern Med. 2007;167(22):2509-2515.

Nelson JE, Cox CE, Hope AA, Carson SS. Chronic critical illness. Am J Respir Crit Care Med. 2010;182:446-454.

Nelson JE, Tandon N, Mercado AF, et al. Brain dysfunction. Another burden for the chronically critically ill. Arch Intern Med 2006;166:1993-1999.

The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments. JAMA 1995;274(20):1591-1598.

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;153:167-175.

References