Patients’ Goals During Long-Term Acute Care Hospital Stays
By Elaine Chen, MD
Assistant Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
SYNOPSIS: After a long-term acute care hospital stay, most patients will achieve goals of ventilator liberation, eating, drinking, and speaking, but many will not achieve independence in walking, grooming, toileting, or returning home.
SOURCE: Dubin R, Veith JM, Grippi MC, et al. Functional outcomes, goals, and goal attainment among chronically critically ill long-term acute care hospital patients. Ann Am Thorac Soc 2021;18:2041-2048.
After a lengthy ICU stay, patients often face a prolonged recovery period. Approximately 20% of patients recovering from chronic critical illness (CCI) are discharged to a long-term acute care hospital (LTACH). CCI is defined as the need for mechanical ventilation for 21 or more consecutive days or elective placement of a tracheostomy in anticipation of prolonged ventilator dependence. Post-intensive care syndrome (PICS) is defined as new or worsening impairment after critical illness in cognition, mental health, or physical health. Dubin et al aimed to better characterize survivor experiences to inform realistic goal setting and rehabilitation protocols. Patients were assessed for functional impairments, functional and rehabilitation goals were elicited, and achievement of goals by the time of LTACH discharge were ascertained.
This prospective, observational cohort study was conducted over 21 months in a single freestanding LTACH. Subjects were adults who had undergone tracheostomy for ventilator-dependent respiratory failure and were not taking drugs by mouth at enrollment. At the time of inclusion, they could tolerate trach collar for at least four hours a day for at least two days and were eligible for diet advancement with the appropriate mental status and anatomy to undergo testing. A battery of validated tests was administered to assess health-related quality of life (HRQOL) and functional outcomes. Assessed domains included quality of life, anxiety, depression, PTSD, cognitive impairment, and physical impairment — specifically, ICU-acquired weakness (ICU-AW).
Using the Quality of Life Goals Inventory, a list of goals previously designed at the same institution, specific goals for the LTACH stay were ranked from a list of 12. Swallowing function and pharyngeal muscle strength were assessed using the clinical bedside swallow evaluation (CBSE), and fiberoptic endoscopic evaluation of swallow (FEES) was completed by a speech language pathologist (SLP). The physical impairment assessment for ICU-AW was completed by a physical therapist. Consent was obtained during the first SLP session, and all other assessments were administered by one of the investigators before the fifth SLP session. Of 165 patients admitted during the study, 50 eligible patients consented and completed the full assessments. Initial HRQOL was low using a validated scale. Problems in PICS domains were identified in almost all patients (48 patients): physical impairment was present in 40 patients, cognitive impairment in 36, mental health problems, including anxiety or depression, in 16, and PTSD in 11. Pain and discomfort were present in 44 patients. Goals were ranked by salience, defined as the product of the average rank and number of times ranked. Eating and drinking were the most salient goals noted, followed by toileting, walking, returning home, breathing comfortably, and speaking.
At the time of discharge, patients had completed a median of 14 SLP sessions (interquartile range [IQR], 10-18), and 27 patients were tolerating a regular or chopped diet, while six were receiving nothing by mouth. Of goals that were ascertained initially, they were attained at these frequencies: breathing better — defined as liberation from the ventilator — 23 of 23 patients, speaking (32 of 33), eating and drinking (35 of 40), grooming (five of 14), walking (six of 29), toileting (four of 22), and returning home (three of 24). The median LTACH stay was 41.5 days (IQR, 23-65 days). Overall, 47 patients were liberated from the ventilator, and 28 were decannulated. Discharge destinations were acute rehabilitation programs (n = 20) and skilled care facilities (n = 15), with only seven patients returning home. Rehospitalization also was common, with six patients returning to an acute care hospital.
Rehabilitation outcomes of CCI are not a common focus of ICU clinicians. Although I work primarily as an intensivist in a large academic center, I have had the privilege of intermittently working in an LTACH setting over several years, managing patients toward ventilator liberation. Some patients thrived, while others struggled.
Dubin et al only enrolled patients with mental capacity to complete a complex battery of testing. Patients without mental capacity, whether caused by delirium, encephalopathy, or permanent brain injury, could experience much different trajectories, limiting the generalizability of these findings. The authors also reported only on attainment of stated goals; it would be better to understand the rates of attainment of important milestones commonly employed in rehabilitation practices as well. Premorbid function, comorbidities, and cause of index hospitalization play a large role in prognosis and outcome. Interestingly, primary diagnoses and comorbidities were not included in this manuscript, which limits our ability to apply these data to prognosticate in different patient populations.
The LTACH experience is not well-studied, but more research is emerging. Early qualitative LTACH research indicated patients and families expressed overly optimistic expectations for LTACH outcomes.1 Further studies have shown that although patients recalled significant dyspnea and communication difficulty throughout the process, in retrospect, 85% would be willing to receive mechanical ventilation again, if needed.2 However, these data are fraught with selection bias, considering only survivors could complete the long-term follow-up surveys. This study adds to this literature by focusing on self-described patient goals for the initial LTACH stay. It provides insights that may help clinicians better understand common patient goals in this setting and assist them in counseling patients and families to set realistic expectations.
The authors described a cohort who underwent an LTACH stay before the beginning of the COVID-19 pandemic. While the pandemic continues to evolve, a cohort of COVID-19 LTACH patients exhibited similar weaning rates (71% weaning success), hospital discharge rates (19% returned home, 17% re-hospitalized), and lengths of stay (41 days).3 Although these data remain far from comprehensive, they provide a reasonable guide to suggest COVID-19 patients should expect similar LTACH outcomes as their pre-pandemic counterparts.
Overall, this study provides information ICU clinicians can use to counsel families as they are considering tracheostomy and gastrostomy tube placement and discharge to an LTACH. These results also can aid in counseling about general outcomes, goal setting, and risks. Helping patients and families set realistic expectations could improve their attitudes toward LTACH care and help them better understand the timeline necessary to achieve those goals.
- Lamas DJ, Owens RL, Nace RN, et al. Opening the door: The experience of chronic critical illness in a long-term acute care hospital. Crit Care Med 2017;45:e357-e362.
- Jubran A, Grant BJB, Duffner LA, et al. Long-term outcome after prolonged mechanical ventilation. A long-term acute-care hospital study. Am J Respir Crit Care Med 2019;199:1508-1516.
- Saad M, Laghi FA Jr, Brofman J, et al. Long-term acute care hospital outcomes of mechanically ventilated patients with coronavirus disease 2019. Crit Care Med 2022;50:256-263.
After a long-term acute care hospital stay, most patients will achieve goals of ventilator liberation, eating, drinking, and speaking, but many will not achieve independence in walking, grooming, toileting, or returning home.
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