Our study offers new insights into a growing population of relatively understudied critically ill patients. Over one year, a cohort of 126 patients who received prolonged mechanical ventilation experienced a median of four transitions of care location each, while spending nearly 75% of all days alive either in hospitals, post-acute care facilities, or receiving paid home care. One year survivors were left with a serious burden of pervasive, persistent disability despite aggressive care that cost a total of $38 million, or approximately $3.5 million for each one-year survivor without serious functional dependencies.
These findings are important for patients, families, clinicians, and policymakers alike. First, the impact of prolonged mechanical ventilation patients on the US health care system has likely been substantially underestimated (2
). Past estimates of these patients’ resource utilization have not focused on cumulative acute and post-discharge costs (22
). We found that while the initial hospitalization accounted for the majority of costs, post-acute care facilities and readmissions contributed substantially to resource utilization. The pattern of patients’ deaths may have accentuated this distribution of costs, as patients who died during hospitalization had an average length of stay over two weeks greater than those who survived. Because the risk of dying remained high throughout follow up, the opportunity to utilize post-discharge resources was attenuated. Still, the high cost of acute critical care is clearly a major factor, as cohort members’ hospital costs alone were 15 times greater than an average Medicare patient with critical illness (24
). Also, the readmission rate we observed was nearly 50% higher than that reported among Medicare beneficiaries who survive a hospitalization that includes mechanical ventilation (25
). It is therefore concerning that the number of prolonged mechanical ventilation patients is expected to increase substantially during the coming decade (2
These data also are relevant to post-acute care payment reform efforts initiated with the 2005 Deficit Reduction Act (26
). Currently, there are widely disparate payments made for prolonged mechanical ventilation care, with acute care hospitals often receiving far less than post-acute care facilities (27
). Some have proposed basing payment for the treatment of the chronically critically ill on the quality of longitudinal care, seeking to reward lower-cost providers who can reduce costly transitions and readmissions (28
). However, the singularly high readmission rate from post-acute care may be associated with patient characteristics impossible to modify such as age and comorbidities, and should be investigated further before a benchmark rate is considered as a quality modifier of payment (30
). The complexity of patients’ trajectories of care highlights the need to define quality indicators for this population that are transportable across institution type with the goals of improving patients’ overall care and the efficiency with which care is delivered (26
Several studies have documented the extensive impact of critical illness on patients’ and families’ physical, mental, and financial well being (7
). However, both the magnitude of disability and the infrequency of post-discharge recovery are noteworthy. Our findings that those with poor outcomes were more likely to be elderly, have comorbid conditions, and be receiving ventilation at discharge are generally similar to prior studies, as is our observation that illness severity scores at the time tracheostomy do not accurately discriminate between patients with good or poor outcomes (34
). Similarly, we observed that the majority of those with a good functional recovery were admitted because of trauma (36
). However, patients with intermediate outcomes, alive but with moderate functional dependency, may be the most challenging to manage because of the perceived uncertainty associated with their prognosis. These previously high-functioning patients were less severely ill than other patients. Despite their decision makers’ initial optimism, however, they rarely improved over time, instead cycling frequently among post-acute care facilities and hospitals.
Our study confirms that prolonged mechanical ventilation is a highly resource-intense condition with a generally poor outcome. However, the circumstances under which prolonged mechanical ventilation decision making occur are not ideal, likely favoring the pursuit of aggressive care (8
). First, the content of physician-surrogate communication is inadequate for fully shared decision making (37
). Nelson et al
. reported that 80% and 93% of surrogates of patients with prolonged mechanical ventilation received no information about patients’ possible functional dependency or expected one year survival, respectively (8
). Second, both clinicians and surrogates substantially overestimate patients’ prospects for recovery and do not anticipate the amount and intensity of caregiving that will be required (5
). A new prognostic model has shown promise for this population, though requires further validation (34
). Third, previous research has demonstrated that most internists are uncomfortable discussing uncertain prognoses, as may be the case for a patient who survives an acute critical illness but still requires life support (38
). However, surrogates acknowledge the inevitable uncertainty in critical illness outcomes, and still desire prognostic estimates in the setting of end of life decisions (39
). Finally, it can simply be challenging for providers to explain the complexities of critical illness in terms that surrogates understand and value. The simple health outcomes groupings we have reported may help in this regard, and may also lend themselves to incorporation in future decision support tools for this population. El-Jawahri et al.
have shown that decision tools that use simple categorizations of choices and outcomes are more effective than verbal descriptions alone in end of life considerations (40
We enrolled critically ill patients near the time of tracheotomy. This is a period when the physician determines that timely ventilator liberation is unlikely and the surrogate decision maker acknowledges that the patient would desire prolonged life support. Although tracheotomy is being performed increasingly earlier in the course of ventilation, there is little persuasive evidence that either its early (less than a week) or late (greater than two to three weeks) timing confers important clinical benefit (41
). This uncertainty has likely contributed to the substantial variation in practice seen across physicians, hospitals, and regions (44
Our study has several limitations. We used participants’ self-reports to quantify the duration of post-discharge care. Although this strategy may result in inaccuracies, data suggest that costs would be underestimated, rather than inflated (45
). Similarly, we were unable to quantify the notable financial strain of critical illness on patients and their caregivers, also reducing its true economic impact. Additionally, although we enrolled participants consecutively and with few (20%) refusals, our findings may not represent prolonged mechanical ventilation recipients at other institutions or who have different sociocultural or linguistic backgrounds. The Durham, NC area has a relatively high long-term acute care facility penetration compared to other regions of the US, which may lead to a greater number of care transitions. Further study in larger datasets may allow a more robust characterization of potentially modifiable risk factors for resource utilization.
The incidence of prolonged mechanical ventilation is likely to increase in the coming years, in the process consuming substantial health care resources. Given the disproportionately high costs and associated disability of prolonged mechanical ventilation, clinicians need to reconsider their approach to its provision. Currently, the prolonged mechanical ventilation decision making process is marked by unrealistic expectations and poor communication. It seems prudent that in the context of prolonged mechanical ventilation physicians not only discuss long-term outcomes with surrogates in terms they can easily understand, but also explicitly convey the likely demands of treatment and future functional dependence patients will likely experience.