Chronic Critical Illness: A Review for Surgeons

Article Outline

• Defining Chronic Critical Illness
• Epidemiology and Outcomes
• A Distinct Metabolic Syndrome
  • Endocrinopathy
  • Nutrition and Gastrointestinal Support
  • Infection and Immune Exhaustion
  • Neuromuscular Disorders
  • Cognitive Dysfunction
  • The Symptom Burden
• Communication Challenges
• Ethical Challenges
• Role of the Long-Term Hospital
  • The Multidisciplinary Approach
  • Weaning and Decannulation
• Palliative Care
  • Structure and Processes of Care
  • Physical Aspects of Care
  • Psychological and Psychiatric Aspects of Care
  • Social and Practical Aspects of Care
  • Spiritual, Religious, and Existential Aspects of Care
  • Care of the Imminently Dying Patient
  • Ethical and Legal Considerations in Palliative Care
  • Quality Improvement
• References
• Copyright

The first multidisciplinary intensive care unit (ICU) opened at Johns Hopkins Bayview Medical Center in 1958 under the direction of anesthesiologist Peter Safar.¹ Today, it is routine to use mechanical ventilation (MV), hemodialysis, and artificial nutrition to treat and reverse organ failure. However, despite our best efforts, recovery may be incomplete. Surviving a stay in the ICU does not necessarily mean restoration of health. Indeed, patients who have been in the ICU suffer emotional disturbance, cognitive deficits, depression, inability to return to work, and decreased quality of life.² Ten to 15% of patients who are treated in the ICU will become chronically critically ill, requiring a prolonged stay in an acute setting, and a course marked by prolonged mechanical ventilation (PMV), organ insufficiency and failure, and recurrent episodes of sepsis.³, ⁴, ⁵, ⁶

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Defining Chronic Critical Illness 

Chronic critical illness (CCI) is a clinical syndrome characterized by multiple organ dysfunctions requiring high intensity care for weeks to months.⁵ PMV is associated with high hospital costs and long hospital stays relative to other critically ill patients.³ PMV is the hallmark of CCI; however, lack of a clear definition about its onset makes the syndrome difficult to characterize.³, ⁵, ⁷, ⁸, ⁹ CCI was initially defined as patients with the International Classification of Diseases (ICD)-9 code for MV more than 96 hours. Although useful for administrative purposes, this definition is not very specific since many patients who require MV for more than 96 hours may improve in the short term with liberation from the ventilator and resolution of organ function before discharge from the ICU and the hospital. Although patients using MV for more than 96 hours account for more than 60% of hospital costs related to MV, and they have higher illness severity than patients with less than 96 hours of MV, the median length of stay is 17 days and the in-hospital mortality rate is similar between groups.¹⁰ This suggests that most of these patients do not become chronically critically ill.

Another definition considers the onset of CCI when tracheostomy is placed for PMV.⁵ Tracheostomy marks the transition from an acute to a chronic condition with the implication that the patient will not be liberated from the ventilator in short order, but is not expected to die any time soon, marking the beginning of a protracted course. Furthermore, the decision to proceed with tracheostomy provides the patient, surrogates, and providers the opportunity to discuss prognosis, the need for ongoing life support, possible placement in alternate health care facilities, and to readdress goals of care. This definition is limited in its accuracy because there is no clear consensus about when tracheostomy should be placed for respiratory failure.¹¹, ¹² The timing of this procedure in the hospital course is subject to local culture and physician preference, and time to tracheostomy placement is decreasing.¹³, ¹⁴ Khan and colleagues validated a definition of PMV based on the following billing codes: ICD-9 96.72 plus either tracheostomy excluding head, neck, or face disease (DRG 541/542), or ICU stay greater than 21 days. This is helpful for retrospective studies using large databases.¹⁵

There is no single event to mark CCI in patients who are not ventilator dependent. However, protracted hypotension, dependence on dialysis or hemofiltration, complex wound care, and noninvasive ventilation are some of the conditions that require a prolonged ICU stay.¹⁶ Consequently, some have examined prolonged ICU stay as a marker of CCI. This definition is wrought with inconsistency. “Prolonged ICU stay” has been defined variably as anywhere from 3 to 28 days.¹⁷, ¹⁸, ¹⁹, ²⁰ The length of ICU stay is influenced by local pressures, including the availability of beds in the ICU and accepting facilities.²¹ So, although some patients with a long ICU stay may clinically have CCI, they cannot be identified on this basis alone.

Finally, the National Association for the Medical Direction of Respiratory Care Consensus Statement in 2005 defined CCI as patients who require MV for more than 21 consecutive days for 6 hours per day.²² The group chose 21 days because most patients transferred to long-term acute care (LTAC) facilities for weaning have been on a ventilator for more than 21 days, and most acute conditions have been addressed by that time. When compared with patients who have been mechanically ventilated for 96 hours with tracheotomy, patients with PMV more than 21 days have higher in-hospital costs, 1-year mortality, and more functional limitation³ (Table 1). This definition is most likely to capture patients who place the highest demand on health care resources.

TABLE 1. Comparison of patients with mechanical ventilation ≥96 hours and tracheostomy versus ventilated ≥21 days

Adapted with permission from Cox et al.³

ICU, intensive care unit.

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Epidemiology and Outcomes 

Between 5% and 15%⁵, ²³ of ICU patients develop CCI, and it is estimated that there are more than 100,000 patients with prolonged ventilator dependence in the United States.³, ¹⁴ Typically patients are elderly and, despite multiple underlying comorbidities, most patients with CCI are living at home independently with good functional status before the onset of their acute illness.¹⁶ Sixty percent have a medical illness leading to MV. The remaining 40% are surgical patients and most of those are status post cardiac surgery¹⁶ (Table 2). The most salient characteristics of this heterogeneous cohort were described in a multicenter study published in 2007 by Scheinhorn and colleagues.²⁴ A total of 1419 adults patients referred to 23 weaning centers across the United States were characterized. These patients were elderly (median, 71.8 years old; range, 18-97.7 years), and equally distributed by gender. Except for the young previously healthy post-trauma subgroup, they had multiple overlapping premorbid conditions (2.6 per patient) which complicated the sentinel catastrophic illness that lead to PMV. Notable comorbidities were chronic obstructive pulmonary disease (COPD) (43%), cardiovascular disease (54%), prior stroke (12%), and diabetes mellitus (25%), all linked by prior tobacco use (59% in this cohort).¹⁶

TABLE 2. Surgery procedures that resulted in ventilator dependency in patients in long-term facilities

Adapted with permission from Scheinhorn et al.¹⁶

CABG, coronary artery bypass grafting; GI, gastrointestinal.

Patients with CCI use between 20% and 40% of ICU resources,²³, ²⁵, ²⁶ and rates of CCI are expected to increase as an aging population uses more intensive care resources.¹⁰ Twenty percent of Americans use the ICU in the last 6 months of life, and 30% of patients older than 80 will use the ICU during their terminal hospitalization.²⁷ Furthermore, the incidence of respiratory failure increases almost logarithmically with age, reaching a peak in 65 to 85 year olds.²⁸, ²⁹ The use of MV due to respiratory failure is increasing by more than 5% per year, and the rate of tracheotomy for PMV has tripled in the last 15 years.¹⁴, ²⁹

Current estimates for overall costs of CCI exceed $20 billion per year,⁵ and projected costs are $64 billion in 2020.³⁰ Critical care expenditures, currently 13% of hospital costs in the United States,³¹ are expected to rise as an aging population and improved ICU survival increase demand for MV.¹⁰, ²³, ³¹, ³², ³³ CCI is a growing challenge for the United States and other countries.

Poor outcomes contribute to the high cost of CCI, which is marked by severe functional and cognitive limitations, and usually requires prolonged institutionalization. Over 20% are readmitted within 30 days and more than 40% of patients with CCI will be rehospitalized within the year after discharge.³⁴ Patients who eventually wean from the ventilator or return home usually do so in the first 6 months. Patients who are institutionalized or ventilator-dependent for more than 6 months will remain so until death.³⁴, ³⁵

In-hospital mortality is 30%, and patients with PMV more than 21 days have a 1-year survival of less than 50%. Fewer than 10% of patients with CCI are living independently after 1 year.⁵, ³⁶ Advanced age, renal failure, sepsis, and functional dependence before hospitalization are associated with the highest mortality.¹⁷, ³⁶, ³⁷, ³⁸ Patients older than 75, or older than 65 and with poor functional status, have only a 5% 1-year survival rate.⁵ Most will die after withdrawal of life-sustaining therapy.³⁵, ³⁹

Surgical patients have better outcomes than others with CCI.⁸, ¹⁶, ¹⁷, ³⁸, ⁴⁰ A retrospective study using ICU length of stay longer than 28 days to define CCI in a noncardiac surgical ICU population showed a surgical ICU survival rate of 54% and a 150-day survival rate of 42%.¹⁷ Five-year survival was 37% for patients discharged from the ICU. Age, emergent surgery, and sepsis were associated with CCI in surgical patients. ICU mortality was strongly associated with severity of disease during the ICU stay, whereas long-term mortality was mainly determined by preoperative illness. This is consistent with other characterizations of CCI as the result of an acute process superimposed on chronic comorbidities.

Although surveys of health-related quality of life indicate that they have acceptable emotional and social function, remaining survivors contend with a significant symptom burden and physical limitations. Older patients, and patients with functional impairment before the onset of illness, have poorer outcomes.

The degree of organ failure on ICU discharge is directly related to mortality and risk of prolonged institutionalization. In a retrospective review of 300 patients admitted to a LTAC facility, D'Amico and colleagues developed an organ system failure score based on dialysis dependence, ventilatory failure, nutritional failure, vasopressor dependence, and other similar parameters, to examine the effect of organ failure on admission, 1-year survival, and disposition.⁴¹ They found that the relative risk of mortality significantly increases with the number of organ failures on admission. The relative risk of mortality was 3.3 (confidence interval (CI) 1.4-7.8), 11.9 (CI 4.8-29.6), 31.3 (CI 9.1-107.3), and 58.2 (CI 12.0-281.6) with 1, 2, 3 and 4 organ system failures, respectively. Patients in this series with 3 or more organ failures had a 90% 1-year mortality rate and none of the survivors made it home. Most patients with 2 or more organ failures were in a nursing home at 1 year.

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A Distinct Metabolic Syndrome 

To better understand and serve this heterogeneous population, CCI should be considered a syndrome³⁹, ⁴² with features beyond respiratory failure and ventilator dependency. The natural history of organ failure is death, and protective physiologic adaptations intended to protect us during an acute insult were not designed for a prolonged critical event. Generally, it is ineffective physiologic adaptation to protracted critical illness contributing to the critically ill state, which is characterized by respiratory failure, gastrointestinal failure, endocrinopathy, muscle wasting and neuromuscular insufficiency, immune exhaustion, and brain dysfunction. Consider that intensive care and mechanical support for organ failure is less than a century old.⁴³ From an evolutionary standpoint, humans have not had the chance to adapt to prolonged organ support.

Endocrinopathy 

The endocrine changes in CCI are myriad and significant, distinguished by a reduced neuroendocrine drive which affects thyroid, parathyroid, adrenal, hypothalamic, and pancreatic function. Patients with CCI are hypothyroid secondary to reduced availability of T3 and T4. Decreased production of thyroid stimulating hormone (TSH) and thyrotropin releasing hormone (TRH) and peripheral conversion of T3 to T4 are typical in acute critical illness.⁴⁴ In the short term this causes nitrogen conservation and prevents muscle wasting. However, in the longer term, this causes a prolonged functional hypothyroidism that may contribute to neuropsychiatric changes, fluid retention and edema, relative hypothermia, decreased ventilatory drive, ileus, and malabsorption.⁴⁴

Adrenal exhaustion syndrome is the inability of the adrenal gland to maintain sufficient cortisol levels during a prolonged period of illness, including ongoing infection, inflammation, and elevated cytokine levels.⁴⁵ Cortisol levels rise acutely but after approximately 72 hours the adrenal gland cannot sustain cortisol production. As cortisol demand increases, pregnenolone, the precursor to cortisol and androgens, is preferentially diverted to cortisol production.⁴⁴, ⁴⁶ This causes androgen insufficiency, which further contributes to muscle wasting, preventing anabolism and inhibiting healing. Adrenal exhaustion occurs in 25% to 40% of all critically ill patients⁴⁵ and contributes to negative nitrogen balance, poor wound healing, immunosuppression, muscle weakness with impaired pulmonary clearance and difficulty weaning from the ventilator, and delayed physical rehabilitation. Imbalance favoring the production of catabolic hormones persists throughout CCI.

Elevated cortisol levels, from endogenous activity and exogenous administration, also activate the renin-angiotensin system, causing anasarca and associated skin breakdown. Elevated cortisol also stimulates hepatic synthesis of acute phase proteins. Elevated levels of these proteins are associated with anemia, impaired cellular growth, and metabolic derangements seen in CCI.⁴⁷

Growth hormone (GH) release is initially increased in the acute state. This causes increases in IGF-1 levels and insulin resistance with subsequent hyperglycemia. However, by days 7 to 10, GH release is suppressed and patients with CCI no longer use fatty acids as fuel efficiently.⁴⁶ They store fat with feeding and preferentially use protein substrate from muscles and organs, preventing restoration of muscle mass, and contributing to prolonged wasting and disability. Respiratory muscles are particularly susceptible to the effects of muscle wasting.⁴⁸

Metabolic bone disease is common in patients with CCI⁴⁴ and may be associated with vitamin D deficiency, bone hyperresorption, and hyperparathyroidism. Vitamin D deficiency can be caused by renal disease, lack of sun exposure, or gastrointestinal failure with impaired absorption.⁴⁹ Such deficiencies can cause compression fractures and heterotrophic ossification, which can prolong rehabilitation. Primary hyperparathyroidism and prolonged immobilization result in poor bone mineralization and hypercalcemia. Intravenous Pamindronate has been used to treat this with some success in CCI.⁴⁴ Hypocalcemia, secondary to vitamin D deficiency, should be corrected with vitamin D supplementation and calcium to prevent secondary hyperparathyroidism. Hypophosphatemia is associated with a host of conditions seen in CCI⁴⁴ and can cause lethargy and muscle weakness delaying ventilator weaning. This should be reversed with intravenous administration of phosphorus.

Hyperglycemia is caused by insulin resistance related to an ongoing sympathetic-like state.⁵⁰ It increases muscle proteolysis with a consequent increase in CO₂ production. Respiratory failure is worsened by weakness from muscle wasting and the increased ventilatory demand from rising CO₂ production. Hyperglycemia also increases the already elevated risk of infection in CCI, which is due to prolonged exposure to multi-drug-resistant nosocomial organisms, previous exposure to multiple courses of antibiotics, and the presence of multiple indwelling intravenous lines and catheters.⁵¹

Nutrition and Gastrointestinal Support 

Because muscle-wasting and metabolic derangements are such prominent features of CCI, it is not surprising that nutritional therapy is paramount to therapeutic success.⁴⁸ Malnutrition causes immunodeficiency by suppressing the function and production of T cells and reducing intracellular killing. Malnutrition also reduces respiratory strength and ventilatory drive, increasing the risk for atelectasis and pneumonia.⁴⁸ Sepsis, acute respiratory distress syndrome, and superimposed injuries also exacerbate the increased metabolic demands associated with common comorbidities, such as COPD. Patients with CCI generally have very high metabolic requirements, which are often poorly estimated by standard formulas.⁴⁸, ⁵² When possible, a metabolic cart is the most accurate predictor of energy expenditure. Mechanic and Brett name 4 principles in nutritional management in patients with CCI⁵²: 1) restoring nitrogen balance; 2) provision with minimal interruption; 3) maintenance of normoglycemia; and 4) employing nutritional pharmacologic therapies. Feeding and nutrition goals can be addressed early in anticipation of the need to make decisions about the use of artificial nutrition and hydration as time passes.

As in the acutely critical ill patient, azotemia and hypophosphotemia are concerns if carbohydrate is reintroduced in excess. Whenever possible, enteral nutrition (EN) is preferred due to fewer infectious complications and lower cost relative to parenteral nutrition (PN).⁵³ EN has also been associated with decreased morbidity and shorter periods of MV.⁵⁴ However, total parenteral nutrition (TPN) should be used to supplement EN when patients cannot meet their requirements by EN alone.⁵⁵ Vitamin supplements, antioxidants, glutamine, calcitrol, appetite stimulants, and other agents are useful adjuncts in the treatment of wound healing, nutritional deficiency, and gastrointestinal failure.⁵², ⁵⁶

Diarrhea is a common problem in critically ill patients. It may be caused by prokinetic medications, antibiotics, or a high osmotic load from tube feeding formula. Clostridium difficile, a troublesome opportunistic pathogen, is also a common cause of diarrhea in hospitalized patients and is treated with flagyl or rectal vancomycin, depending on the severity of the infection. Other causes should be treated by modifying medications and/or feeding formulas.

Infection and Immune Exhaustion 

Infection, specifically sepsis, places patients at high risk for CCI and is ultimately the leading cause of death.⁵¹ Infection is also associated with weaning failure, since fever and hypermetabolism increase ventilatory demand; protein breakdown causes muscle weakness, and altered mental status reduces tidal volume. Patients with CCI are particularly susceptible to infection for 3 reasons. First, indwelling catheters, tracheostomies, and skin and mucosal breakdown are portals for pathogens. Second, institutionalized patients are at risk for virulent nosicomial organisms. Third, patients suffer from “immune exhaustion”⁵¹ and have diminished physiologic reserve to fight infection.

Intravenous lines, urinary drainage catheters, nagogastric tubes, and tracheostomies are sites for bacterial colonization. Patients with PMV have increased secretions, a colonized lower respiratory tree, and impaired mucocilliary clearance. Frequent suctioning and poor oral care cause mucosal breakdown, which become entry sites for bacteria. Nasogastric tubes are associated with aspiration events, and IV lines and catheters develop a biofilm, which seeds body fluid.

Skin breakdown is very common in CCI and decubitus ulcers cause considerable morbidity and mortality for institutionalized patients. Frequent mobilization, soft bedding surfaces, and adequate nutrition can decrease the risk of skin breakdown. Left untreated, decubitus ulcers can cause systemic sepsis. Wound care programs are successful in treating wounds and reducing the risk of wound complications.⁵⁷

Transmission occurs by patient-to-patient or caregiver-to-patient contact. Inattention to hand-washing protocols and isolation precautions, and decreased staffing ratios compared with ICU settings, all contribute to transfer between patients. Once colonization occurs, nosocomial pathogens can replace normal flora and contaminate catheter sites. Resistant bacteria, such as methacillin-resistant Staphylococcus aureus, vancomycin-resistant enterococcus, gram-negative enteric organisms, and opportunistic organisms, such as Candida sp, and C. difficile, are particularly prevalent and problematic.⁵⁸ Host defenses are often impaired at the beginning of the ICU admission by comorbidities, such as diabetes, renal insufficiency, and pulmonary disease. Defenses are weakened further by an acute event and a protracted course. Protein deficiency impairs antibody production in humoral immunity. Pain and anxiety seen in critical illness can impair chemotaxis and neutrophil activity. As in other critically ill patients, signs of systemic inflammation should prompt a search for infection. Initial antibiotic choice should provide broad coverage, which can be narrowed once an organism is identified by cultures.

Neuromuscular Disorders 

Neuromuscular dysfunction is a significant contributor to CCI syndrome. It is seen in multi-organ dysfunction syndrome and sepsis and may occur within 10 days of the initial episode of systemic inflammation.⁵⁹, ⁶⁰ Risk factors include hyperglycemia, bacteremia, need for renal replacement therapy, and vasopressor use for more than 3 days.⁵⁰ Critical illness myopathy (CIM) is characterized by muscle atrophy and necrosis. Critical illness polyneuropathy (CIP) is a sensory and motor axonal neuropathy, which manifests as tertaplegia and hyporeflexia. CIP is diagnosed definitively with electromyogram (EMG) but results are often inconclusive because patients cannot cooperate. CIM, CIP, and cognitive impairment may coexist, contributing to profound functional impairment. CIP/CIM should be suspected in patients who are otherwise improving but cannot wean from the ventilator.⁶¹ Patients with the neuromuscular component of multiple organ dysfunction syndrome (MODS) have 37% mortality and fewer than one half (45%) can expect complete recovery. Early mobilization prevents the onset, or limits the severity, of muscle wasting in ICU patients.⁶² Intensive insulin therapy also reduces the risk of CIP.⁵⁰ The average recovery time is 4.5 months.⁶³

Cognitive Dysfunction 

Perhaps the most devastating part of the CCI syndrome is the brain dysfunction seen in most patients. High rates of delirium and coma in the acute period persist in CCI.⁶⁴, ⁶⁵ Even in the absence of agitation and delirium, memory loss and impaired executive function are common and may continue months after ICU discharge.⁶⁶, ⁶⁷ This impairment lingers long after discharge from the ICU.⁶⁸, ⁶⁹ Most patients with CCI have no cognitive deficit on admission to the ICU.⁶⁸ To assess the prevalence of brain dysfunction in this population, Nelson and colleagues assessed 203 consecutive patients with PMV admitted to their respiratory care unit (RCU). The average age of this cohort was 72 years, and the average length of stay in the ICU before admission to the RCU was 25 days. Upon admission to the RCU, 50% were comatose and 15% were delirious. At discharge from the RCU, 36% were in a coma and 13% were delirious, including some who were not delirious when admitted to the RCU but became delirious in the RCU. At 6 months after admission, the cumulative mortality rate was 56% and, of the survivors, 71% were too delirious to participate in a telephone survey.

There are too few data regarding treatment strategies for delirium, agitation, and depression in CCI. Lessons learned from ICU patients suggest that benzodiazepines should be avoided because they can contribute to delirium, and that atypical antipsychotics may improve agitation.²⁶, ⁷⁰

The Symptom Burden 

The symptom burden in CCI is high. Physical symptoms associated with CCI include pain, dyspnea, nausea, fatigue, weakness, anorexia, insomnia, anxiety, depression, confusion, and constipation.⁷¹, ⁷² Pharmacologic, nonpharmacologic, and complementary therapies can help alleviate these symptoms.⁷³

In another study, Nelson and colleagues surveyed 100 patients with CCI about the frequency of their symptoms.⁷⁴ The survey was limited to patients who were able to respond, which was a minority of patients since the majority had cognitive dysfunction that was too severe to verbalize their symptoms. Ninety percent reported symptoms, and the average number of symptoms was 8.6. Forty-four reported pain at the highest levels of distress, and the majority (60%) reported worry, sadness, or anxiety at the highest levels of frequency. Sixty percent reported dyspnea during full ventilator support and weaning (Fig 1). Perhaps the most remarkable finding here was that the survey was limited to patients able to communicate. Presumably, patients unable to communicate are even more vulnerable for poor symptom management. Fewer than 50% of these patients have a quality of life that is acceptable to them.⁷⁵

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• FIG 1. 

  Prevalence of physical and psychological symptoms among chronically critically ill patients⁷⁴ providing self-reports. We approached patients twice each week for symptom assessment using the Condensed Version of the Memorial Symptom Assessment Scale,²³ modified as described in the text. The figure shows the percentage of patients providing symptom self-reports (n = 36) who responded that the symptom was present. Error bars represent SEM. SOB-wean, shortness of breath during weaning; SOB-full vent, shortness of breath during full ventilator support; Diffic commun, difficulty communicating.

(Reprinted with permission from Nelson et al.⁷⁴)

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Communication Challenges 

No matter how we define CCI, there is a point at which physicians inform families and surrogates that that the patient has demonstrated a long-term need for critical care services. Communication about this transition is difficult. Becoming chronically critically ill is a deviation from the anticipated surgical course. In many instances, surrogates and surgeons do not fully understand the complexities that often involve infections, deconditioning, limited communication, dependency for self-care, chronic institutionalization, and high mortality.

Surgeons, intensivists, and palliative care physicians managing critically ill patients need good prognostication skills to help patients and families define goals of care and make appropriate decisions and plans.⁷⁶, ⁷⁷ Giving prognostic information is 1 of the most difficult tasks facing physicians. Despite the importance of prognosis, physicians are often reluctant to prognosticate. In a national survey of physicians, 90% felt they should avoid being specific about prognosis. Furthermore, 57% felt inadequately trained in prognostication.⁷⁸ In another study looking at the accuracy of physician prognostic skills, physicians were asked to provide survival estimates of terminally ill patients at the time of hospice referral. Physicians were accurate 20% of the time and overestimated survival by a factor of 5.3.⁷⁹ As the duration of the physician-patient relationship increased, prognostic accuracy decreased, suggesting that physician feelings toward patients alter their ability to prognosticate.

Physicians and surrogates are almost equally inaccurate when predicting outcomes in CCI. In a study of 126 patients receiving PMV, Cox and colleagues found that both physicians and surrogates had higher baseline expectations for survival, functional status, and quality of life than observed 1-year outcomes.⁸⁰ Furthermore, physician-surrogate pairs had low concordance and accuracy for survival (44%), clinical outcomes (23%), and observed quality of life (23%).⁸⁰ This same study showed that physicians discussed prognosis only one third of the time and that surrogates received much of their information from nonphysicians.

To a large degree, how a medical team decides to treat a patient's particular condition or comorbidity depends on the patient's prognosis. “How long do I have?” is 1 of the most common questions patients ask. Prognosis is defined as “a prediction of the probable course and outcome of a disease” or, alternatively, “the likelihood of recovery from a disease.” Prognosis guides individualized clinical decisions, such as cancer screening or hospice, and identifies groups at high risk for poor outcomes in whom targeted interventions may be most useful. Importantly, prognosis can provide the foundation for discussing goals of care. Many patients want to discuss prognosis with physicians and inadequacy of prognostic information is often the greatest complaint patients/families have about end-of-life care.⁸¹

Patient/surrogates tend to be more optimistic about survival than suggested by physicians⁸⁰ and severity of illness, or actual survival outcome.⁸² This optimism reflects cultural norms and is more evident in African Americans than other groups.⁸² Although physicians may accurately convey the likelihood of poor outcome, patients and surrogates may remain in denial. Surrogates also draw on many sources to estimate their loved one's prognosis. They also use patient attributes, such as strength of character, life history, and previous fitness to estimate their loved-one's prognosis.⁸³ Physicians are slightly more pessimistic and more accurate than patient/surrogates, yet much of the time, physicians do not share this information because they are uncertain about its accuracy.³⁷, ⁸⁴, ⁸⁵ This creates obvious barriers to truly shared decision-making.

Prognostic indexes provide an objective measure to support clinical intuition and lend confidence to judgments about prognosis. Combining clinical estimates with prognostic indexes results in more accurate estimates than either alone. Hospitalization is often a major health transition for elders and is often a time to reassess goals of care. Walter and colleagues developed an accurate and easy-to-use index to stratify older adults into groups by their risk for 1-year mortality after hospital discharge. The index was developed in a large heterogeneous group of patients aged 70+ admitted to a general medical service by identifying risk factors for mortality from multiple domains, including demographics, comorbidities, laboratory findings, and functional status.¹⁴ Kaplan–Meier survival curves of the 4 risk groups demonstrate that the groups have markedly different survival trajectories (Fig 2).⁸⁶ Patients with more than 6 points meet hospice criteria in having greater than a 50% 6-month mortality. Using only 6 accessible variables (gender, congestive heart failure (CHF), cancer, creatinine, albumin, and activities of daily living (ADL) dependency at discharge), this prognostic index stratifies older adults according to 1-year mortality after hospitalization. This study emphasizes the importance of considering multiple domains when assessing prognosis in older adults. Functional status is of the utmost importance when estimating prognosis in older adults. In the Walter index above, measures of functional status added important information about risk for 1-year mortality beyond that provided by medical diagnoses or physiologic measures. Functional status reflects the severity and end result of many different illnesses and psychosocial factors.⁸⁷, ⁸⁸ Estimating prognosis based on functional status began with oncology patients and the Karnofsky Index (100 = normal; 0 = dead) and the ECOG scale (Eastern Cooperative Oncology Group) (0 = normal; 5 = dead) are the most commonly used scales. A median survival of 3 months roughly correlates with a Karnofsky score less than 40 or ECOG greater than 3. Newer prognostic scales have been developed to help provide prognostic information. The simplest method to assess functional ability is to ask patients: “How do you spend your time? How much time do you spend in bed or lying down?” If the response is more than 50% of the time and is increasing, estimate the prognosis at 3 months or less. An increasing number of physical symptoms, especially dyspnea, are also a good indication that time is short. The palliative performance scale (Table 3) uses 5 observer-rated domains correlated to the Karnofsky Performance Scale, commonly used to estimate prognosis in patients with cancer. The palliative performance scale is a reliable and valid tool and correlates well with actual survival and median survival time for patients. It has been found useful for purposes of identifying and tracking potential care needs of palliative care patients, particularly as these needs change with disease progression.⁸⁹

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• FIG 2. 

  Mortality at 1 year post discharge. CHF, congestive heart failure; ADL, activities of daily living. (Reprinted with permission from Walter et al.⁸⁶

Copyright ©2001 American Medical Association. All rights reserved.) (Color version of figure is available online.)

TABLE 3. Palliative performance scale (PPS)

Adapted with permission from Weissman D. http://www.eperc.edu. Fast Fact Number 125.

⁎Survival postadmission to an inpatient palliative unit, all diagnoses.176

†Days until inpatient death following admission to an acute hospice unit, diagnoses not specified.89

‡Survival postadmission to an inpatient palliative unit, cancer patients only.177

It may be difficult for physicians to propose continuing intense support when there is little chance of meaningful recovery. This dilemma is further compounded by the fact that proposed models designed to predict weaning success, long-term survival, need for acute readmission, chronic institutionalization, and functional outcomes lack adequate validation and may not apply to the heterogeneous nature of CCI. Interviews with physicians and elderly patients about end-of-life discussions have shown that physicians and patients place variable importance on quality of life, emotional and financial costs of treatment, likelihood of treatment success, and expected effect and longevity.⁹⁰ Providers were more likely to focus on physiologic factors and the success of interventions in meeting physiologic goals, and patients felt physicians were more concerned with longevity than quality of life.⁹⁰

Another challenge for surgeons approaching patient/surrogates is their relative inexperience with CCI. Patients with CCI are often managed by intensivists and/or in facilities other than the site of the initial operation. Surgeons are relatively unfamiliar with the protracted medical course and the high mortality that lie ahead. Optimistic predictions for hospital discharge are made without consideration for a long rehabilitative course and a low likelihood of return to functional independence.

If we consider tracheotomy as the marker of the transition to CCI, obtaining consent for the procedure presents an opportunity to discuss the scope of CCI and expected outcomes from the procedure in the context of patient's overall course. It is reasonable to consider whether proceeding with tracheotomy is consistent with the patient's cultural and spiritual values. Instead, providers may present tracheotomy as the logical next step toward hospital discharge or ventilator weaning, ignoring the more difficult alternative of forgoing further therapy, and the high likelihood of a poor outcome. Surrogates are not provided the information they find most useful when deciding to proceed with tracheostomy.⁶⁸ In a survey of items that patients and surrogates considered “important to know,” 99% and 97%, respectively, were told about why a tracheotomy or MV was needed, but only 25% were told that it could be a financial burden for the family, and only 20% were informed about expected quality of life, emotional and financial costs of treatment, the likelihood of treatment success, and the expected effect on longevity. Only 7% were informed about expected 1-year mortality. Patients consistently report that they want honesty from physicians and that physicians do not remove hope when they report bad news.⁹¹, ⁹² Investigators suggested 6 domains that should be addressed in discussions to proceed with tracheotomy, including symptom burden and potential complications. These include the nature of the patient's illness; their prognosis, including ventilator dependence; impact of treatment, including physical function and quality of life; potential complications; required level of care after acute hospitalization; and alternatives to continuing treatment.⁹³

When the patient has still failed multiple attempts to wean despite addressing all correctible causes of failure, or the best achievable quality of life would be unacceptable from the patient's perspective, redirection should be considered. In the era of shared decision-making,⁹⁴ and when technology is used to delay the inevitability of death, death is presented to patient/surrogates as a choice along with orders for resuscitation, intubation, and nutritional support. This is complicated by the reality that fewer than 5% of critically ill patients are able to communicate their wishes,⁹⁵ and surrogates become primary decision-makers. Almost 50% of surrogates do not understand their role⁹⁶ and may not know the patient's wishes or may be fearful about making a terminal decision or abandoning the patient. Physicians can mitigate this burden by emphasizing that the surrogate is only expressing what they think that patient would want rather than dictating care themselves. Therapy should meet the needs of the entire patient and should not be directed at their disease alone.⁹² It is left to the physician to provide medical recommendations that would help meet those goals, or provide comfort to the patient if those goals cannot be met.

Building consensus between patients and caregivers, setting realistic expectations, while helping patients cope with their disease, is a balancing act. There are several strategies that have been demonstrated to improve communication in the ICU setting for patients and surrogates. Lilly and colleagues devised an intensive communication strategy, which included multi-disciplinary family meetings within 72 hours of admission.⁹⁷ This improved satisfaction and reduced ICU length of stay by 1 day, without increasing mortality. Others have shown that proactive family meetings and distributing printed materials for families can improve the bereavement process.⁹⁸

In the absence of advance directives, surrogates may not have a clear understanding of what the patient would want under dire circumstances. In a survey of post-tracheostomy patients transferred to a RCU, fewer than 20% had an advanced directive, and although the average ICU stay was 23 days, fewer than 20% had appointed a health care proxy.³⁹ Ambiguity about the patient's desires and who should speak for them made limiting treatment difficult. In the same cohort, the first decision to limit treatment was made an average of 39 days into a complicated hospital course. Almost 80% of deaths in this group occur after the limitation of treatment.³⁹

Emergency surgery is a risk factor for CCI,¹⁷, ⁹⁹ and an important communication challenge to the surgeon/patient relationship is the emergent nature of surgical therapy.¹⁰⁰ Surgeons often meet patients and families when other rescue attempts have failed and there is intense need on the part of the family to trust the surgeon. In this circumstance it is difficult for the surgeon, newly introduced to the patient and family, to alter an already rigorous and emotionally exhausting course of care. However, when a catastrophic event occurs in the course of a severe chronic illness, it is imperative that providers consider surgical intervention with respect to the expected outcome of advanced disease. All therapies should be evaluated based on their ability to meet outcomes that are meaningful to the patient, as well as their ability to prolong life and cure disease.¹⁰¹

The ramifications of PMV are difficult to predict during an acute episode of MV. Therefore, the initial discussion and counseling should be, whenever possible, proactively initiated by the primary care physician or surgeon before high-risk procedures. Much research is needed to improve the power of the preoperative evaluation to predict patients at risk for PMV. A suggested starting point is to consider the preoperative pulmonary evaluation in patients undergoing cardiovascular surgery because they are the surgical patients at highest risk for PMV.¹⁶, ²⁴ COPD and tobacco use are also associated with PMV.¹⁶

Because CCI is marked by clinical uncertainty, families caring for patients with CCI endure significant emotional and financial burdens.⁷⁵, ¹⁰², ¹⁰³ Waxing and waning in the patient's condition, altered mental status, prolonged institutionalization, and multiple readmissions take a profound psychological toll on family members.¹⁰² Furthermore, the life-threatening and protracted nature of CCI places the family system in crisis and in time depletes the ability to apply effective coping methods. Family members commonly seek clues from health care providers about their loved one's condition. When these clues are absent or infrequent, uncertainty and anxiety mount. This may appear as mistrust and suspicion toward health care providers, causing avoidant behavior from those providers. In this case a dysfunctional communication pattern self-perpetuates. Multiple transitions in the team caring for a patient or, in treatment settings, also contribute to uncertainty and increase anxiety. The clinical course of CCI can be described as “rollercoaster ride”: a general deterioration interspersed with frequent short-term improvements. This is confusing and exhausting for families who may want to end suffering by withholding treatment but are encouraged by signs of recovery.

Physicians must also be aware of normal and complicated grief and screen and address those appropriately¹⁰⁴, ¹⁰⁵ (Table 4). Depressive symptoms are common among family members of critically ill patients,¹⁰⁶ and although they decrease over time, symptoms may continue a year after discharge from the ICU.¹⁰⁷ More than one third of family members demonstrate symptoms of post-traumatic stress disorder months after discharge from the ICU and symptoms increase over time.¹⁰⁸, ¹⁰⁹ Commonly, spouses and adult children change employment to meet the needs of the patient with CCI and experience loss of income and depleted savings even when the patient is insured.²³, ⁸⁰, ¹¹⁰ Frequent family meetings, with balanced communication between families and caregivers, and where treatment preferences, prognosis, and quality of life are discussed, can positively impact patient and family satisfaction in the ICU.⁹⁶, ⁹⁷

TABLE 4. Risk factors for poor bereavement outcomes

Adapted with permission from Stroebe et al.¹⁷⁵

The experience of CCI is deeply affected by a patient's and family's cultural values.¹¹¹ Culture often defines how patients and families understand illness, suffering, and dying. Encounters between physicians and patients of different backgrounds are common given the diversity in the United States and, therefore, there are many opportunities for cross-cultural misunderstandings.¹¹² Use of life-prolonging therapies and technology, the locus of decision-making, and truth telling are all influenced by cultural norms. Although autonomy is the legal basis for medical decision-making in the United States, some cultures prefer that families make medical decisions as a unit. Adult children commonly wish to protect their parent from bad news and may ask the clinician not to tell the truth. Providers can approach this issue by helping families understand that the information will not be imposed but offered only if the patient indicates an explicit desire to know. This is done by asking the patient if they prefer to know the details about their illness, if they would rather hear a general outline, or leave the details of decision-making to a family member. Such communication can demonstrate respect for the patient's culture without assuming that the patient will conform to their cultural norms. Skilled communication, genuine curiosity, and openness to differences can increase the likelihood that patients and families are satisfied with the process and outcomes of care.

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Ethical Challenges 

Justice is an ethical principle obligating physicians to allocate resources fairly.⁷⁵ Health care dollars are disproportionately spent on patients in the last years of life, and critical care comprises an increasing portion of those dollars. Patients with PMV use 25% to 40% of ICU bed days¹¹³ and generally have a poor prognosis. The economic cost of CCI is high—$82,411 per health quality adjusted life-year¹¹⁴—and in an era of scarcity such expenditures warrant justification. Nonbeneficial days are those days pursuing therapy that is discordant with a patient's wishes or that do not prolong life. Cox and colleagues describe “ineffective care” when hospital costs exceed $100,000 and mortality occurs within 100 days. In their analysis, fewer than 10% of patients ventilated less than 48 hours received ineffective care, compared with 22% of patients with a tracheostomy for MV and 41% for patients with PMV longer than 21 days.³

In an insurance-based system, individual patients bear relatively little responsibility for direct cost. There is a high burden on the physician to provide care for his patient while remaining mindful of the cost to larger society. ICU physicians are in a unique position to adjudicate intensive care resources and concerns about rationing exist. However, in a survey of 404 physicians, nurses, and administrators, most felt that patients were given “too much care,” rather than too little.²¹

The term “futility gap” has been applied to critically ill patients: “[Medical] care can be considered futile if the best an ICU stay can accomplish is an outcome that patients find unacceptable or even worse than death.”¹¹⁵ However, the term futility is ambiguous and emotionally charged. Some have condemned “futility” as a crutch used to abandon patients and invalidate the role for patient and surrogate decision-making.¹¹⁶, ¹¹⁷ Grossman and Angelos propose abandoning the term “futility” and instead using “medically and surgically inappropriate.”¹¹⁸ The poor outcomes seen in CCI, including the high symptom burden, high likelihood of cognitive dysfunction, and high risk of prolonged institutionalization, make it imperative that patients and physicians are clear that the patient's desire for care is consistent with the therapies they receive.

Ethics consultations are helpful when there is conflict about the therapeutic course for patients with critical and terminal illness.¹¹⁹ Consultations provide an opportunity for patient/surrogates and caregivers to confer about goals of care and the likelihood that those goals are achievable with further medical intervention. Ethics consultations reduce hospital length of stay and costs for patients who die in hospital after a long hospital course, but do not increase mortality. In follow-up surveys both patient/surrogates and providers have reported favorable experiences with ethics consultations.¹¹⁹, ¹²⁰, ¹²¹

“Nonbeneficial days” and medical futility are particularly burdensome concepts for surgeons. The surgeon-patient relationship is unique because patients relinquish complete control to surgeons during an operation.¹⁰⁰ Surgeons are distinguished from other physicians by an exaggerated sense of responsibility for outcomes. Surgeons are trained to undertake heroic measures to save lives at high personal cost, take pride in the total care of their patient, and have a “covenant” to pursue the best possible result.¹²², ¹²³, ¹²⁴, ¹²⁵ High personal expectations of success on the part of the surgeon are in direct conflict with patients who are not willing to “endure” complications.¹²³ Guilt and the high emotional toll of an adverse outcome contribute to overly optimistic prognosis, incomplete communication with the family, or refusal to redirect care despite the patients or family's wishes.¹²⁶ Schwarze and colleagues describe “surgical buy-in,” whereby informed consent represents a contract where a surgeon agrees to perform the operation and the patient agrees to the postoperative course.¹²³ For some surgeons, there are 2 possible outcomes: life or death. This may be in direct conflict with patients and other care providers who believe quality of life and quality of death are as important than either opposing outcome. This “covenant ethic”¹²⁴ can also be in direct conflict with intensivists, who are more likely to hold a “communal ethic” that also considers resource allocation. A consequence of the different ethical principles driving members of the care team is that patient/surrogates hear inconsistent messages that impair decision-making.

The alternative to proceeding with tracheotomy or PMV is usually withdrawal or withholding of life-sustaining therapy, which may be considered failure by the operating surgeon. Discussions to withdraw or limit life-sustaining therapy are essentially negotiations to modify the surgeon-patient contract.¹²³ In high-risk procedures, surgeons may expect that patients continue postoperative care for a certain period before redirecting therapy. In the event that patients choose to redirect the goals of therapy from cure to comfort, some surgeons insist the patient take responsibility for the outcome.

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Role of the Long-Term Hospital 

Most patients with CCI come from large urban teaching hospitals, reflecting the volume and complexity of cases in these institutions.¹²⁷, ¹²⁸ The burden to hospital resources and high costs associated with CCI provide an incentive to transfer these patients to other venues.³⁴ ICUs are designed to provide high-tech, acute care for life-threatening disease; they are poorly equipped to manage patients with protracted diseases who require rehabilitation. Once a certain level of medical stability is achieved, these patients may be transferred to less acute, ventilator-ready units. Long-term units benefit patients by providing comprehensive medically appropriate care, and benefit acute facilities by freeing ICU beds for new patients, and preventing long-stay patients from consuming hospital dollars.¹²⁹ Long-term units, called step-down units, ventilator dependent units, noninvasive respiratory-care units, regional weaning unit, or LTAC hospitals,¹³⁰ select patients by referral source, estimated length of stay (>25 days), diagnosis, and type of insurance accepted.²², ⁸⁵

Long-term facilities differ in the services, nurse/patient ratio, monitoring capacities, and ancillary services they provide.³⁴ Some have many of the same ancillary services as short-term acute care facilities and care for patients with acute conditions. Many LTACs originated as LTAC hospitals for patients with tuberculosis and other chronic, communicable diseases. Introduction of the Medicare diagnosis-related group payment structure in the 1980s made it too costly for short-term acute care hospitals to take care of critically ill patients with prolonged length of stay. Restructuring of the Medicare payment system made it profitable for LTACs to care for patients with PMV and other critical conditions.¹²⁹ Most patients at LTACs have advanced disease, including degenerative nervous system disorders, chronic wounds, advanced cardiopulmonary disease, and musculoskeletal disorders and do not require PMV.¹⁶, ¹³¹ The growth in the number of LTACs parallels the growth in the number of patients requiring PMV and rates of Medicare reimbursement, which have increased significantly over the last 20 years.¹²⁷, ¹²⁹ Most are private, for-profit organizations, and the geographic distribution is heavily skewed to states with the largest Medicare populations.¹³¹

Thirty-four to 60% of patients transferred to the LTAC with ventilator dependence will wean before discharge.³⁵ Several observational studies have described a satisfactory rate of weaning success and improvement in functional capacity is achieved at long-term facilities.¹⁶, ³⁴, ³⁶, ¹³², ¹³³ Caring for patients with CCI is complex and is best accomplished with a multidisciplinary approach, including physicians, nurses, respiratory care, occupational, speech, and physical therapists, nutritionists, and social services.¹³⁰ Palliative care and spiritual care should also be integrated into the management of patients with PMV and CCI.²² Staffing levels must be sufficient to address the needs of a patient population with high levels of cognitive impairment, physical disability, and multiple indwelling catheters.¹⁶

In patients with CCI, the mean length of stay is 33.8 ± 29 days at the acute care hospital before transfer to a longer term facility [24], and 2 weeks after tracheotomy.³⁹ The acute course has typically been a challenging one, riddled with complications and multiple medical events. Therefore, transferring patients with CCI to a long-term setting is a complicated process and detailed communication with the accepting facility is essential for minimizing medical errors and reducing readmission rates. Facilitating the transition is often underestimated in its complexity. Moving to another setting creates anxiety for the patient and families due to the disruption in continuity, accumulated frustration about the medical situation, and continued uncertainty. From the family perspective, this transition may represent the culmination of their anger, fear, and disappointment with an unexpected hospital course and it is important to remain sensitive to their grief.

When possible, it is advisable to establish relationships between acute- and long-term facilities to improve continuity. When transferring caregivers are familiar with the process of care in the accepting facility, they can better prepare families for the move. Ideally, family members will have the opportunity to visit the accepting facility before transfer.

The transfer of information should include a detailed written record, including a comprehensive narrative of the acute hospital course. In our experience, direct communication from the senior physician transferring the patient to the accepting physician is critical for a smooth transition. If the patient is managed by a surgeon and an intensivist, both should speak with the accepting physician. Although patients at this stage are usually transferred for management of medical conditions, the surgical perspective is helpful to facilitate long-term care. It is especially important if there are outstanding issues about wound care, metabolic derangements, and feeding. Transferring facilities should also provide direct contact information to the physicians and nurses most familiar with the patient. This is especially true in hospitals where resident and attending staffs rotate frequently.

It is estimated that 25% to 40%²⁶, ³⁴ of patients transferred to long-term facilities will have unplanned readmissions to acute hospitals. This phenomenon is intrinsic to the stand-alone low-cost carrier model because access to sophisticated diagnostics and consultants are limited. Efforts to decrease this disruptive and expensive practice have proven ineffective in reducing the number transfers but have improved communication and reduced length of stay in the acute hospital.⁶⁹

The Multidisciplinary Approach 

To address the multilayered complexity of caring for CCI patients, surgeons and intensivists should use a simple 4 “R” pneumonic as a helpful pedagogic tool: Recognize the patient with difficult or prolonged weaning and therefore plan for tracheostomy early. Restore ambulation, orientation and mental health, communication, protein-caloric deficit, and organ function. Reduce nosocomial complications and waste using a reasonable allocation of resources for patients and society.

Managing CCI involves a comprehensive, multidisciplinary patient-centered approach to long-term care, rather than the life-support model found in the ICU (Fig 3).¹³⁴ The goal of this more comprehensive care model is to improve patient-centered quality of life, interrupt the cycle of frequent medical complications, and help the patient achieve their maximal potential. The multidisciplinary team model has been widely recognized as an important approach in health care.¹³⁵ Teams make fewer mistakes than individuals, especially when each team member knows his or her responsibilities, and those of other team members.¹³⁶, ¹³⁷ The effectiveness of a team resides in each member performing a predetermined task simultaneously, thereby reducing complex processes into concise manageable components.¹³⁸, ¹³⁹ For decades, the rehabilitative model of care²², ¹⁴⁰, ¹⁴¹ has been applied in the specialized care of this population.

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• FIG 3. 

  Multidisciplinary patient-centered care for the chronically critically ill.

One approach is based on a framework that seeks opportunities to entrench those competencies during the routine care of CCI patients. The key suggested elements are as follows:

Contributions from each discipline change during the patient's course as they work toward the common goal of inspiring patients to attain maximal functional independence. Early ambulation and communication are powerful indicators of recovery for patients, families, and clinicians. Cognition and orientation are important determinants for meaningful rehabilitative intervention and may reduce the use of restraints and the extended use of indwelling catheters. It is important to include family and other social supports as part of the multidisciplinary effort.

Weaning and Decannulation 

Weaning from MV is an important goal in the care of the patient with CCI and a determinant for long-term disposition. Much of the literature on weaning the difficult-to-wean patient emphasizes adjusting ventilator settings with the aim of slowly transferring the task of breathing from the machine back to the patient. However, weaning is far more complex and should be tackled in 2 different steps: first, liberation from MV, and second, the decision to remove the artificial airway.

Respiratory failure can be divided into ventilation or pump failure, and gas exchange failure. The key element in weaning is to identify the underlying cause(s) and to attempt complete or partial reversal to restore spontaneous breathing. A clear understanding of the pathophysiology of respiratory failure and the contribution of nonrespiratory comorbidities are key elements in the process of MV liberation. Respiratory failure (pump failure) results from an imbalance in the load/capacity relationship affecting the ventilatory pump.¹⁴⁴ Different clinical tools are employed to address discrete aspects of the pathophysiology in PMV (Table 6).

TABLE 6. Troubleshooting causes of prolonged ventilator dependence

COPD, chronic obstructive pulmonary disease; ABG, arterial blood gas; CXR, chest radiograph; PIP, peak inspiratory pressure; ECG, electrocardiogram; EMG, electromyogram; PTSD, post-traumatic stress disorder.

Once the causes of respiratory failure are recognized and treated, weaning is not very different from the evidence-based proven process used in the ICU,¹⁴⁵ consisting of the following key steps: 1) checking for ability to protect the airway and tolerate low levels of ventilatory support; 2) performing a spontaneous breathing trial (SBT); and 3) extubation if the trial is successful (Fig 4).

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• FIG 4. 

  Process of ventilator weaning in patients with prolonged mechanical ventilation.

If the patient fails the SBT, the clinician should thoroughly review the causes of failure. The main difference from the acute ICU setting is that the SBT is usually followed by incremental periods of tracheostomy mask trial. Another difference is that for long-term patients, rehabilitation is integral to the slow weaning process.¹⁴⁶

Protocol-driven weaning performed by physician or by members of the ICU team (nurse, respiratory therapist) is effective and safe in the ICU.¹⁴⁷, ¹⁴⁸, ¹⁴⁹ In a single-center regional weaning unit treating CCI patients, Scheinhorn and colleagues demonstrated a reduction in the median time for MV liberation from 29 to 17 days, compared with historical controls, using a protocol implemented by respiratory therapists.¹⁵⁰ Weaning success and sustainability depend on the difficult task of restoring the load/capacity imbalance affecting the respiratory system. Order sets and protocols reduce practice variation among caregivers, limit reliance on memory, and ensure that teams share a particular therapy or process.¹³⁴, ¹⁴², ¹⁴³, ¹⁵¹, ¹⁵², ¹⁵³, ¹⁵⁴

Successful weaning in the difficult-to-wean patient has been reported in several nonrandomized observational single-center studies and 1 multicenter trial with reported rates between 50%²², ²⁴, ¹³⁰ and 94%.¹⁵⁵ Such wide variation is explained by heterogeneous patient populations, facility resources, and local admission/discharge practices. Success favors younger, post-trauma,¹⁵⁵ and surgical patients versus with those with medical causes and multi-organ failure.²² Some have proposed a 3-month window for attempting liberation from MV.¹⁵⁶ However, relying on a strict timeline to define futility is inappropriate, because other factors, such as unplanned interruptions (eg, infections, acute transfer, etc), patient's wishes and cultural concerns, or economic pressure by third-party payers, may influence the decision to abandon further weaning efforts.

Once the patient is liberated from the ventilator, the next decision is removal of the artificial airway, most commonly the tracheostomy tube. Decannulation is perceived by the patient, family, and the care team as the ultimate step of success in the lengthened weaning process, and the clinician has to carefully anticipate and predict sustainable success.

The balance between keeping the tracheostomy tube with its associated morbidity (ie, infection, macro- or microaspiration, chronic colonization, desiccation, limited communication, and required tracheostomy care) should be weighed against the convenience of keeping the airway for deep suction access, or reconnection to MV if the patient decompensates. During the postmechanical-ventilation period, patients are predisposed to respiratory muscle fatigue, abnormal ventilatory drive, and repeated respiratory failure.

The first step in determining if decannulation is possible is to rule out upper airway obstruction from an underlying or condition, or obstruction acquired as a complication of PMV.¹⁵⁷ There should be a high level of suspicion for obstruction if there is poor phonation or airflow to the upper airway doing a finger occlusion maneuver. A definitive diagnosis is made using upper endoscopy.

A decisional algorithm, which includes parameters to assess the patient's ability to remove secretions, swallow, sustain spontaneous breathing, and determine the level of cognition, has facilitated an 80% success rate in decannulation and a 3% reintubation rate 3 months after decannulation.¹⁵⁸ Nevertheless, some degree of empiricism and variation in decannulation practice remains.¹⁵⁹, ¹⁶⁰

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Palliative Care 

National Association for the Medical Direction of Respiratory Care guidelines support palliative care in patients requiring PMV: “Palliative care has a role in the treatment of all patients requiring prolonged mechanical ventilation.”¹⁴⁵ The consensus group goes on to recommend involving the palliative care team early to provide maximal assistance and benefit to the patient.¹⁴⁵ Hospitalized patients with CCI have a high burden of symptoms, including pain, nausea, and fatigue. These symptoms can arise from the critical illness itself as well as from the therapies used to treat it. They can arise at any point in the course of illness and can significantly diminish the quality of life.

Palliative care is the field of medicine focused on symptom management and improving quality of life for patients living with a life-threatening illness,⁷², ¹⁶¹ whether the goals for care include cure, life prolongation, or living with CCI⁸⁶ (Fig 5). Palliative care expertise includes the assessment and treatment of pain and other symptoms, and the relief of suffering caused by physical, psychosocial, and spiritual aspects of disease.

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• FIG 5. 

  Palliative care model.

(Reprinted with permission from http://hab.hrsa.gov/tools/primarycareguide/images/PCGfig15_1b.gif.)

Unlike hospice, which requires that a physician endorse a 6-month prognosis in order for a patient to qualify for service, palliative care, sometimes also referred to as supportive care, is provided in conjunction with curative treatment at any point in the disease trajectory from the time of diagnosis. As a patient becomes sicker, palliative care may become a greater focus of care either because the burden of curative treatments outweigh their benefits, or they are no longer effective, or because the patient no longer desires them.

Palliative care is provided by an interdisciplinary team, including physicians, nurses, social workers, pharmacists, psychologists, and chaplains.¹⁶² Palliative care teams treat not only the patient, but also attend to the needs of the family, understanding that family can include any person the patient identifies as part of their support network. Palliative care can be provided early in the course of illness and across multiple care settings; therefore, communication among the varied settings and continuity of care is essential to achieving quality care for patients (Table 7).

TABLE 7. Palliative care services

Adapted with permission from the World Health Organization's definition of palliative care, available online at http://www.who.int/cancer/palliative/definition/en/.

Although palliative care refers to an approach to care focused on symptom management and improving quality of life, palliative medicine refers to the medical specialty focused on providing palliative care. Despite the emergence of palliative medicine as a formally recognized medical specialty in 2007, all physicians who care for patients with serious and advanced illnesses must be able to provide appropriate pain and symptom management and identify and treat other sources of suffering in their patients. To achieve this goal, all physicians need training in palliative care.¹⁶³ Even with such training, physicians will identify some patients who have such complex needs that referral to a specialized palliative medicine team will be appropriate.¹⁶⁴

Palliative care can be provided in any setting, including ICUs, step-down units, and general surgical floors. Patients with CCI may pass through these settings multiple times throughout their hospital stay and palliative care teams can serve as continuity for these patients and their families. In patients with CCI, death is more often the result of sequential systemic changes rather than failure of a single organ. Despite differing courses of diverse illnesses, the dying process is remarkably similar across disease states. Altered carbohydrate, fat, and protein metabolism leads to a catabolic state and homoeostasis is lost in association with increasing cytokine concentrations.¹⁶⁵ Loss of both adipose tissue and muscle may be severe. Cytokines, including tumor necrosis factor, interleukins-1 and -6, and interferon-γ, contribute directly to weight loss, anorexia, and fatigue that characterize end-stage disease.¹⁶⁵

In 2004, the National Consensus Project for Quality Palliative Care representing 4 organizations (American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, National Hospice and Palliative Care Organization) developed and disseminated the Clinical Practice Guidelines for Quality Palliative Care, which were updated in 2009.¹ The National Consensus Project established the key aspects of palliative care, including the following: structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social and practical aspects of care; spiritual, religious, and existential aspects of care; cultural aspects of care; care of the imminently dying patient; and ethical and legal considerations. Cultural aspects of care are discussed earlier in this article.

Structure and Processes of Care 

Palliative care aims for care to be provided in the setting the patient chooses. For patients with CCI, however, it is often not possible to provide care in the patient's preferred location. ICUs and step-down units should aim to be the least restrictive as possible and should provide flexible visiting hours, adequate space for visitors, and sufficient respite for family. When the patient cannot be in his choice of settings, creative measures can be taken to make the alternate care setting as comfortable and familiar as possible, such as displaying pictures of family and playing the patient's favorite music. A key element of palliative care is effective communication to elicit a patient's preferences and goals of care.¹⁶⁶ Understanding the needs and goals of the patient and family is essential for providing high-quality palliative care.¹⁶⁷ Palliative care teams also provide coordination of care and create plans in conjunction with ICU teams to deal with potential crises.

Prognostic information helps patients make treatment decisions. For example, 1 patient may want treatment to survive until a grandchild's birth, while a different patient in a similar clinical situation may decide that he does not want to undergo yet another procedure. When the disease progresses, communication becomes even more important to ensure that all involved have the same understanding of the prognosis and plan of care. Palliative medicine teams formulate and document care plans based on patient wishes, then convey them to patients, family, and other providers.¹⁶⁸ Care plans change according to the needs of the patient and family and should involve additional input from other specialists. Functional and cognitive status, disease trajectory, cultural and spiritual preferences, and home support must be considered in formulating care plans.

Clinician recognition and acceptance of the signs and symptoms of the active dying phase of illness is crucial to completing the developmental tasks of the end of life, helping patients and families understand what is happening and what to expect, and coordinating care and logistics in the days leading up to death (Table 8). Although it is impossible to know exactly what will happen to any particular patient, providers can use scored instruments and clinical experience to offer patients and families estimates, such as hours to days, days to weeks, and weeks to months that communicate prognosis while recognizing the inherent uncertainty of such predictions.

TABLE 8. Signs associated with imminent death

Adapted with permission from Weissman DE. Syndrome of Imminent Death. 2nd ed. Fast Facts and Concepts. July 2005;3. Available from: http://www.eperc.mcw.edu/fastfact/ff_003.htm.

Prognostication can be difficult, since there are many different pathways to death. Certain diagnoses, like metastatic cancer, have a more predictable terminal period. However, only 21% of Medicare beneficiaries die of cancer and less than 16% will die suddenly.¹³ Patients with dementia or frailty (20%) may have long periods of debility with less predictable courses.¹³ As is typical of CCI, many die of acute complications of a chronic condition where the terminal period is much more uncertain, such as organ failure (20%).¹³

Physical Aspects of Care 

The goal of pain and symptom management is a reduction of the symptoms to a level the patient defines as satisfactory. Providers should be careful not to state that all symptoms will be completely alleviated, because, although that is sometimes possible, more often symptoms such as pain and anxiety are attenuated to an acceptable level. Pain in CCI often requires the use of opioids and physicians must be willing to prescribe opioids in doses sufficient to relieve pain, and to acquire skills in management of predictable opioid side effects, such as constipation. An up-to-date bibliography on pain assessment and management is available at http://www.nationalconsensusproject.org/guideline.pdf. Guidelines for opioid titration are available through the Education on Palliative and End-of-life-Care Project, including online modules and courses at http://www.epec.net. Physicians are often reluctant to prescribe opioids for pain in patients with delirium. However, 1 study found that patients who had hip fracture who had no opioid or low-dose opioids prescribed were more likely to develop delirium, likely due to untreated pain.²⁰ Furthermore, the acute care team should anticipate and correct patient and family misconceptions about the use of opioids, including side effects, addiction, and somnolence.

Psychological and Psychiatric Aspects of Care 

Many family members of patients with CCI may have been caregivers for some time before the patient becoming critically ill. Caregivers reporting emotional stress have a significantly increased mortality rate; physician identification of vulnerable caregivers and referral to social work and other community resources can be lifesaving. Physicians should recognize the importance of the time after referral to palliative care and understand that patients and families are particularly vulnerable to feeling abandoned at this time by their physicians. If the patient transfers to a different floor, making a point of still visiting a patient and their family or calling on the telephone can help reassure patients that a change in goals is not abandonment by the physician. It is important to express thanks and appreciation for the privilege of caring for the patient, and when appropriate, to say goodbye to the patient and their family members. Although hospice programs provide bereavement services and follow-up for 12 months after the death of the patient, most patients with CCI never enroll in hospice. If the hospital does not have bereavement support, some hospices will provide bereavement services even if the patient was not enrolled, and this can be facilitated through the hospital social worker.

Social and Practical Aspects of Care 

Referral to a palliative care social worker can promote access to services, community resources, and volunteers that can help patient and family in the home or with transportation. Family structure and living arrangements, geographic location, finances, and caregiver availability are considered and reflected in the care plan. For example, an older patient with CCI may have a partner who is ill themselves and unable to fully participate in planning for the patient. In such a situation where the support system is already at its limit, the team must develop a plan to insure appropriate care for the patient and his partner. Some teams have dedicated social workers to address these issues, whereas other teams may use case managers or nurses to focus on these matters. It is important to realize the care coordination involved is more than a physician or nurse or social worker can do alone; the interdisciplinary nature of intensive care and palliative care draws on the strengths of each field.

Spiritual, Religious, and Existential Aspects of Care 

Beliefs surrounding illness and death are profoundly influenced by a patient's and family's religious and spiritual values.¹⁶⁹ The salient spiritual needs of patients at the end of life encompass questions of meaning, value, and relationship. Physicians can play a key role in helping patients express these needs by asking patients about their religious and spiritual beliefs and practices and how these impact on the patient's view of illness. At a minimum, physicians should recognize these spiritual needs, inquire as to the patient's spiritual roots, and offer a referral to the hospital chaplain. Chaplains and other members of the spiritual care service can address such issues in a nonthreatening and supportive way and help facilitate religious or spiritual rituals as well as contact spiritual communities identified by the patient and family. When religious beliefs appear to be a barrier to providing good end-of-life care,¹⁷⁰ spiritual engagement is the direct approach to resolution. For example, 1 patient and his family had a strong religious belief in a miraculous cure for numerous complications following coronary artery bypass grafting. The palliative care team chaplain explored this belief explicitly and negotiated a treatment plan that was respectful of the family's belief but also realistic and practical. The chaplain articulated that foregoing another surgical procedure would not change whether a miracle was possible. The patient then accepted an order for no further escalation in care and died peacefully several weeks later.

Care of the Imminently Dying Patient 

The transition to the actively dying phase in the chronically critically ill is not well studied and is often following foregoing life-sustaining therapies. The decision to forego life-sustaining therapies should be treated as any other procedure with an explanation of the risks and benefits and an outline of what the patient and family should expect. When a patient is identified as actively dying, this phase should be recognized and explicitly communicated to the patient, family, and care providers. Many families worry about whether they will know when the person is actively dying. They are fearful of uncontrolled pain and other suffering and are greatly reassured by an explanation of the normal process of dying, which involves increasing sleepiness, gradual onset of coma, irregular respirations, and a peaceful death. In the small percentage of patients with escalating pain or agitated delirium near death, physicians should provide assurance that when necessary these symptoms are effectively managed by opioids, benzodiazepines, and antipsychotics. By understanding the signs and symptoms of impending death and knowing how to address the symptoms that do arise, physicians can explain to family members what to expect and reassure them that their loved one will receive good care. Although each person experiences the final stages differently, common symptoms exist. These terminal symptoms include progressive weakness and fatigue, loss of appetite, dehydration, and drowsiness. While many family members of patients with CCI have accepted that their loved one cannot eat, some may still struggle with this aspect. Although physicians may recognize that feeding will not help the patient, they must also recognize that feeding is a primary means of nurturing. Physicians can encourage and promote other means of demonstrating human care, such as mouth and skin care.¹⁷¹ Many families ask about intravenous fluids during the dying process. Artificial hydration can lead to pulmonary edema and dyspnea, ascites, peripheral edema, and infections at intravenous catheter sites and should be discouraged. Symptoms such as dry mouth and thirst can be addressed by attentive oral care, such as ice chips, artificial saliva, and cleansing. Because patients with CCI are unlikely to be able to take medications orally and also may have exhausted intravenous access, it is important to remember that sublingual, transdermal, rectal, and subcutaneous routes may be used. Families will often ask what to expect and education on the changes in respiratory patterns that are common in imminently dying patients is helpful, including that breathing usually becomes shallow as death nears and periods of apnea are common. Discussion of management of secretions and that secretions can produce a rattling sound should be explained to the family. Deep suctioning should be avoided since it can lead to gagging and may be uncomfortable. Glycopyrrolate, atropine, or scopolamine can be effective in reducing rattle by decreasing the amount of mucus and saliva produced.¹⁷¹ Rooms should be cool and well-ventilated, and a fan can aid in reducing the sensation of dyspnea. It is appropriate to stop taking the blood pressure and monitor only respiratory rate and pulse. If monitors must be left on, they should only be visible at the nursing station and not in the patient's room. Families often have difficulty with this aspect of care, as they have become accustomed to monitors in the critical care setting for prolonged periods. This can often be addressed by stating the need to refocus attention on the patient, and celebrating their life rather than being distracted by monitors. In rare exceptions monitors can remain on but it is generally discouraged.

Drowsiness and decreased responsiveness is common, and rarely, patients become confused or agitated. When possible, confusion or agitation should be treated according to the cause. If the patient is experiencing agitation due to increased pain, pain should be treated with opioids as appropriate, or if thought due to dyspnea, treated with opioids and benzodiazepines. Behavioral interventions, such as brushing a patient's hair or providing music therapy, can be highly effective in treating agitation and are sometimes forgotten in the acute setting. When these measures do not work and the cause is uncertain, agitation should be treated with low doses of neuroleptics, such as haloperidol (or if more sedation is needed, chlorpromazine).

Many families may ask what to say to their loved ones during this time. Families should be guided in the important developmental tasks of this stage of life, including conduct of important conversations if the patient is still able to participate. Many teams provide family members with a written list of the “5 things” to think through and discuss as applicable when a loved one is dying: thank you; forgive me; I forgive you; I love you; goodbye. Depending on their age and wishes, children may visit after preparation for what they will see and are encouraged to draw a picture or write a letter to the patient expressing their feelings toward them, as a means of saying goodbye.

Ethical and Legal Considerations in Palliative Care 

Ethical and legal issues commonly arise in palliative care. Advance care planning can help communicate patient preferences across different health care settings and should be discussed early in the course of CCI. In such discussions, physicians should encourage patients to appoint surrogate decision-makers and educate them on how to make decisions and discuss choices with their loved one. All physicians should follow accepted ethical principles, including respect for autonomy, acting in the patient's best interest, avoiding harm, treating patients equally, and maintaining confidentiality. At the point when the patient is no longer able to express his wishes, the team should turn to the patient's trusted decision-maker and their previously expressed wishes to help guide care. It is also prudent to discuss with patients and families the need for wills, guardianship agreements, and financial documentation before the loss of decision-making capacity.

Some patients with CCI may make requests for their physician to assist them to die. Such requests for aid in dying are often triggered by pain, depression, or other distress.¹⁷² Physicians must address these issues whenever a patient raises the issue of assisted suicide because treating pain and depression and making referrals to palliative care reduces these. Physician aid in dying is legal in the states of Oregon and Washington, with strict and specific safeguards.

Quality Improvement 

Health care organizations are beginning to use palliative care to improve quality, because it is an effective approach to reducing symptoms and improving patient and family satisfaction.¹⁷³ In addition, use of palliative care services can improve transitions of care, support timely and successful discharge, avert unnecessary readmissions, and contribute to efficient use of health care resources. Many hospitals now use palliative care programs to help meet pain management and other quality accreditation standards.¹⁷³, ¹⁷⁴

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