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Chronic Critical Illness. Keri Holmes- Maybank , MD Leigh Vaughan, MD June 18, 2013 Medical University of South Carolina. Learning Objectives. Define chronic critical illness (CCI). List the long term physical and emotional disabilities caused by CCI.
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Chronic Critical Illness Keri Holmes-Maybank, MD Leigh Vaughan, MD June 18, 2013 Medical University of South Carolina
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.
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.
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
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
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%
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
CCI Mortality • 48-68% one year mortality across study populations • Mortality 6 months after discharge 56% • DC survival ~55d
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
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
Worst Prognosis • <65 yo and poor prior functional status • 75 yo • 95% mortality • Residual organ dysfunction • Diabetes • Renal failure
Multidisciplinary Approach • Nutrition • Physical Therapy • Occupational Therapy • Speech Therapy • Respiratory Therapy • Nursing • Case Managers • Wound Care
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
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)
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
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)
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
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
Expectations Surrogates had higher expectations than physicians
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
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
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
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
Caregiver Desires • 100% want MD honest • 91% Optimistic
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
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
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
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.