Publications

BACKGROUND: Over 1 in 5 Americans die in intensive care units (ICUs), among whom 50% undergo palliative withdrawal of mechanical ventilation (WMV). Little is known about their experience or best practices to minimize their suffering.

RESEARCH QUESTION: To describe and identify factors associated with patient distress post-WMV.

STUDY DESIGN AND METHODS: Observational study of Withdrawal of Mechanical Ventilation (OBSERVE-WMV) is a prospective cohort study conducted from January 2021 to July 2022 in 12-ICUs at two academic medical centers among mechanically ventilated intubated patients transitioning to comfort-focused care via WMV. The cumulative incidence of experiencing distressful episodes from either observed respiratory distress (Respiratory distress observation score >3 or self-reported dyspnea rated ≥5), Pain (Visual Analog Scale or Clinical Pain Observation Tool ≥3), or agitation (Richmond Agitation Sedation Scale ≥+2) from the time of WMV initiation until death (or up to 3-hours post-WMV) were calculated. Multivariable Poisson Regression identified factors associated with the number of distressful episodes, adjusting for time at risk, generating adjusted incidence risk ratios (aIRRs) with 95% confidence intervals (CIs).

RESULTS: Among 153 participants, the cumulative incidence of at least one distressful episode post-WMV was 91% (individual symptoms were: respiratory distress, 90%; pain, 56%; and agitation, 5%), with 41% of patients having > 3 episodes. In multivariable analysis, receiving opiates within 1-hour before WMV (anticipatory dosing) was associated with lower risk of distressful episodes (aIRR 0.74, CI 0.55-0.99). Factors associated with higher risk of distressful episodes included: ICU stays > 10 days (aIRR 1.85, CI 1.20-2.88), lower levels of consciousness (lower Glasgow Coma Scale) (aIRR 1.72, CI 1.06-2.78), and distressful episodes pre-WMV (aIRR 1.63, CI 1.21-2.18).

INTERPRETATION: Nearly all ICU patients undergoing palliative WMV at end-of-life demonstrated distressful symptoms or signs. Anticipatory dosing with opiates prior to WMV may help mitigate their distress.

Neuropalliative care is a rapidly evolving field of healthcare that is essential for addressing the complex needs of individuals with serious neurological disorders and their care partners. Effectively addressing these needs will require advances in Neuropalliative care research designed to improve the quality of life for all people affected by neurological disorders and their care-partners. On April 12, 2024, the first Neuropalliative Care Research Summit (NeuroCARES), funded by the National Institute of Neurological Disorders and Stroke (NINDS) and supported by the International Neuropalliative Care Society (INPCS), provided an opportunity for clinicians, researchers, representatives from NIH and patient and family advocates to come together to identify and discuss neuropalliative care research challenges and opportunities. The summit hosted 80 transdisciplinary researchers and clinicians from 47 institutions, including 25 virtual attendees. The conference featured 3 roundtable discussions, 6 scientific sessions, and 2 junior investigator mentoring workshops. Research priorities identified included: 1) developing strategies to address healthcare inequities; 2) increasing methodological rigor concerning data collection and intervention development; 3) increasing care partner involvement through initiatives such as Community Advisory Boards to ensure that research aligns with real-world needs; 4) utilizing big data to examine differences in neuropalliative care delivery across the U.S. healthcare system; 5) developing standardized metrics including common data elements and tailoring them to neuropalliative care; and 6) creating enhanced training, mentoring, and funding opportunities for early career neuropalliative care investigators. This article summarizes key takeaways and deliverables from the summit while emphasizing the need for a biopsychosocial approach to neuropalliative care.

INTRODUCTION: Distress is experienced by more than 30% of patients during palliative withdrawal of mechanical ventilation at the end of life in the intensive care unit. There is a lack of high-quality evidence for specific approaches to risk factor identification and management of distress during this process. Structured "time-outs" and checklist interventions improve surgical outcomes and have been widely adopted in procedural care, but they have not been tested for use at end-of-life in intensive care unit settings.

METHODS: We describe the development and planned testing of a novel time-out checklist intervention, the Comfort Measures Only Time Out (CMOT) in a non-randomized single arm pilot study. Intervention development was guided by published literature and a structured inter-professional advisory panel. The intervention will be tested by clinical teams caring for 46 patients undergoing palliative withdrawal of mechanical ventilation. Nurses, physicians, advanced practice providers, and respiratory therapists will convene within an hour before withdrawal of mechanical ventilation to complete the checklist. Implementation outcomes, including feasibility, will be measured by a 12-question survey and by clinician protocol adherence. Effect size calculations will determine power for future randomized controlled trials testing efficacy of the CMOT in reducing patient distress.

DISCUSSION: This protocol will pilot test the feasibility of the CMOT, a structured time-out and checklist intervention, for WMV in the ICU. The study will inform potential changes to the protocol and intervention for a future randomized control trial. The CMOT is grounded in a quality and safety framework already adopted in procedural and critical care settings. Given high rates of distress, the CMOT will fill an identified gap in evidence surrounding the process of WMV.

TRIAL REGISTRATION: Clinical trials.gov ( NCT05861323 ); 16 May 2023.

IMPORTANCE: The integration of palliative care in neurology, or neuropalliative care, is an emerging area of practice focused on holistically improving quality of life and reducing the burden of suffering for people living with serious neurologic disease and their care partners. Major neurology and palliative care societies have recognized the need to advance primary and specialty palliative care services for people with neurologic disease. However, research to support this work is in its early stages.

OBSERVATIONS: The International Neuropalliative Care Society Research Committee convened an interdisciplinary panel of experts, including clinicians, scientists, people with neurologic disease, and care partners, to identify priority research areas for the advancement of neuropalliative care as a field. Three priority areas highlighted in this review include (1) patient- and care partner-centered symptoms and outcomes specific to neurologic illness and tools for their assessment, (2) development of effective neuropalliative care interventions and delivery models, and (3) methods to support the ability to foster, deliver, and measure goal-concordant care over time.

CONCLUSIONS AND RELEVANCE: This Special Communication outlines some of the most pressing neuropalliative care research needs, the advancement of which will best serve patients of all ages living with serious neurologic diseases and their care partners. Research funding mechanisms are needed to support and sustain impactful work in this field.

BACKGROUND: Family caregivers of patients with severe acute brain injury (SABI) are at risk for clinically significant chronic emotional distress, including depression, anxiety, and posttraumatic stress. Existing psychosocial interventions for caregivers of intensive care unit (ICU) patients are not tailored to the unique needs of caregivers of patients with SABI, do not demonstrate long-term efficacy, and may increase caregiver burden. In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress during and after their relative's ICU admission.

METHODS: In this multicenter longitudinal qualitative study, we conducted semistructed interviews with SABI caregivers at two time points: during their relative's ICU admission (n = 30) and 2 months later (n = 20). We analyzed qualitative data using a hybrid of inductive and deductive analytic techniques. We recruited family caregivers of patients with SABI from 14 US neuroscience ICUs. We conducted interviews over live video. Our convenience sample of SABI caregivers (n = 30) was recruited through referral by medical teams and nursing staffs across participating neuroscience ICUs. Caregivers included spouses, children, parents, and siblings to patients with SABI.

RESULTS: We identified themes and subthemes related to participants' preferences for (1) the content of psychosocial support services and (2) the delivery and implementation of psychosocial support services. Findings revealed an unmet need for psychosocial support around the time of ICU discharge and 2 months later, including information to understand their loved one's condition and guide difficult decision-making, education regarding how best to communicate with the patient's care team and other family members, and emotional and behavioral coping skills.

CONCLUSIONS: Our findings provide specific recommendations to justify and inform the development and adaptation of psychosocial support services for SABI caregivers for delivery in the ICU and after discharge.

OBJECTIVE: Acute hyperglycemia following intracerebral hemorrhage (ICH) is associated with poor functional outcomes and may result from a neuroendocrine stress response. Given the proximity of neuroendocrine structures to the cerebral ventricles, we tested the hypothesis that intraventricular hemorrhage (IVH) is associated with hyperglycemia.

MATERIALS AND METHODS: A post-hoc analysis of the ICH Deferoxamine (i-DEF) trial was conducted to determine predictors of IVH. Variables with significant differences (p < 0.1) in univariable tests between patients with and without IVH were entered into a logistic regression model along with age, sex, diabetes, hyperglycemia (admission glucose ≥140 mg/dL), and baseline intraparenchymal hemorrhage (IPH) volume. This model was then applied to an independent cohort of consecutive non-traumatic ICH patients admitted to a single referral center (2007 to 2018).

RESULTS: Among 294 patients in the i-DEF cohort with mean age 60 ± 12 years (IVH in 41 %), hyperglycemia (aOR 1.90, 95 % CI [1.06-3.38]), smoking history (aOR 1.90, 95 % CI [1.11-3.27]), and non-lobar ICH location (aOR 3.38, 95 % CI [1.49-7.69]) were independently associated with IVH. In the independent cohort consisting of 856 patients with mean age 71 ± 12 years (IVH in 37 %), hyperglycemia (aOR 2.23, 95 % CI [1.55-3.20]), non-lobar ICH location (aOR 2.50, 95 % CI [1.75-3.59]), and IPH volume (aOR 1.02, 95 % CI [1.01-1.02]) were associated with IVH.

CONCLUSIONS: Hyperglycemia is associated with IVH and may be a peripheral marker for the inflammatory response to hemorrhage within the ventricles. Further translational studies are needed to elucidate the pathophysiological basis for this phenomenon.

BACKGROUND: Family caregivers of patients with severe acute brain injury (SABI) admitted to intensive care units (ICUs) with coma experience heightened emotional distress stemming from simultaneous stressors. Stress and coping frameworks can inform psychosocial intervention development by elucidating common challenges and ways of navigating such experiences but have yet to be employed with this population. The present study therefore sought to use a stress and coping framework to characterize the stressors and coping behaviors of family caregivers of patients with SABI hospitalized in ICUs and recovering after coma.

METHODS: Our qualitative study recruited a convenience sample from 14 US neuroscience ICUs. Participants were family caregivers of patients who were admitted with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, traumatic brain injury, or hypoxic-ischemic encephalopathy; had experienced a comatose state for > 24 h; and completed or were scheduled for tracheostomy and/or gastrostomy tube placement. Participants were recruited < 7 days after transfer out of the neuroscience ICU. We conducted live online video interviews from May 2021 to January 2022. One semistructured interview per participant was recorded and subsequently transcribed. Recruitment was stopped when thematic saturation was reached. We deductively derived two domains using a stress and coping framework to guide thematic analysis. Within each domain, we inductively derived themes to comprehensively characterize caregivers' experiences.

RESULTS: We interviewed 30 caregivers. We identified 18 themes within the two theory-driven domains, including ten themes describing practical, social, and emotional stressors experienced by caregivers and eight themes describing the psychological and behavioral coping strategies that caregivers attempted to enact. Nearly all caregivers described using avoidance or distraction as an initial coping strategy to manage overwhelming emotions. Caregivers also expressed awareness of more adaptive strategies (e.g., cultivation of positive emotions, acceptance, self-education, and soliciting social and medical support) but had challenges employing them because of their heightened emotional distress.

CONCLUSIONS: In response to substantial stressors, family caregivers of patients with SABI attempted to enact various psychological and behavioral coping strategies. They described avoidance and distraction as less helpful than other coping strategies but had difficulty engaging in alternative strategies because of their emotional distress. These findings can directly inform the development of additional resources to mitigate the long-term impact of acute psychological distress among this caregiver population.

Utilizing a multidisciplinary approach to identify catheter-associated urinary tract infection (CAUTI) risks in Neuroscience intensive care patients admitted for aneurysmal subarachnoid hemorrhage, our CAUTI rate decreased from 5.903 per 1,000 catheter days (June 2020-June 2021) to 0.371 per 1,000 catheter days in our postintervention time period (July 2021-March 2023). A review of our clinical treatment guideline to optimize the timing of indwelling urinary catheters and medication management related to bowel regimens has resulted in a sustained CAUTI reduction, particularly in postaneurysmal subarachnoid hemorrhage patients in the Neuroscience intensive care unit.

BACKGROUND AND OBJECTIVES: Intubation for acute stroke is common in the United States, with few established guidelines.

METHODS: This is a retrospective observational study of acute stroke admissions from 2011 to 2018 among fee-for-service Medicare beneficiaries aged 65-100 years. Patient demographics and chronic conditions as well as hospital characteristics were identified. We identified patient intubation, stroke subtype (ischemic vs intracerebral hemorrhage), and thrombectomy. Factors associated with intubation were identified by a linear probability model with intubation as the outcome and patient characteristics, stroke subtype, and thrombectomy as predictors, adjusting for within-hospital correlation. We compared hospital characteristics between adjusted intubation rate quartiles. We specified a linear probability model with 30-day mortality as the patient-level outcome and hospital intubation rate quartile as the categorical predictor, again adjusting for patient characteristics. We specified an analogous model for quartiles of hospital referral regions.

RESULTS: There were 800,467 stroke hospitalizations at 3,581 hospitals. Among 2,588 hospitals with 25 or more stroke hospitalizations, the median intubation rate was 4.8%, while a quarter had intubation rates below 2.4% and 10% had rates above 12.5%. Ischemic strokes had a 21% lower adjusted intubation risk than intracerebral hemorrhages (risk difference [RD] -21.1%, 95% CI -21.3% to -20.9%; p < 0.001), whereas thrombectomy was associated with a 19.2% higher adjusted risk (95% CI RD 18.8%-19.6%; p < 0.001). Women and older patients had lower intubation rates. Large, urban hospitals and academic medical centers were overrepresented in the top quartile of hospital adjusted intubation rates. Even after adjusting for available characteristics, intubated patients had a 44% higher mortality risk than non-intubated patients (p < 0.001). Hospitals in the highest intubation quartile had higher adjusted 30-day mortality (19.3%) than hospitals in the lowest quartile (16.7%), a finding that was similar when restricting to major teaching hospitals (22.3% vs 18.1% in the 4th vs 1st quartiles, respectively). There was no association between market quartile of intubation and patient 30-day mortality.

DISCUSSION: Intubation for acute stroke varied by patient and hospital characteristics. Hospitals with higher adjusted rates of intubation had higher patient-level 30-day mortality, but much of the difference may be due to unmeasured patient severity given that no such association was observed for health care markets.