Chronic Critical Illness

1. Chronic Critical Illness Keri Holmes-Maybank, MD Leigh Vaughan, MD June 18, 2013 Medical University of South Carolina

2. Learning Objectives • 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.

3. Key Messages • 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.

4. Chronic Critical Illness - Definition • 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

5. Syndrome • 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

6. 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

7. 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%

8. Prognosis of Respiratory Failure • 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

9. CCI Mortality • 48-68% one year mortality across study populations • Mortality 6 months after discharge 56% • DC survival ~55d

10. Prognosis for Functional Recovery • 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

11. Outcome • 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

12. Worst Prognosis • <65 yo and poor prior functional status • 75 yo • 95% mortality • Residual organ dysfunction • Diabetes • Renal failure

13. Multidisciplinary Approach • Nutrition • Physical Therapy • Occupational Therapy • Speech Therapy • Respiratory Therapy • Nursing • Case Managers • Wound Care

14. Improve Outcomes • 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

15. Utilization of Resources • 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)

16. 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

17. 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

18. Caregivers • 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)

19. 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

20. 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

21. Expectations • 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

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

23. Communication • 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

24. Ineffective 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

25. 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

26. Barriers to 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

27. Caregiver Desires • 100% want MD honest • 91% Optimistic

28. Decision-Making • 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

29. Improved Communication • 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

30. What to Discuss • 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

31. References • 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 RespirCrit 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 RespirCrit 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.