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Verification of Death by Neurologic Criteria: A Survey of 12 Organ Procurement Organizations Across the United States

Sarhadi, Kasra; Hendershot, Kristopher A; Smith, Natalie; Souter, Michael; Creutzfeldt, Claire; Lele, Abhijit; Maciel, Carolina; Busl, Katharina; Balogh, Julius; Greer, David; Lewis, Ariane; Wahlster, Sarah
BACKGROUND:The Center for Medicare and Medicaid Services requires Organ Procurement Organizations (OPOs) to verify and document that any potential organ donor has been pronounced dead per applicable legal requirements of local, state, and federal laws. However, OPO practices regarding death by neurologic criteria (DNC) verification are not standardized, and little is known about their DNC verification processes. This study aimed to explore OPO practices regarding DNC verification in the United States. METHODS:An electronic survey was sent to all 57 OPOs in the United States from June to September 2023 to assess verification of policies and practices versus guidelines, concerns about policies and practices, processes to address concerns about DNC determination, and communication practices. RESULTS:Representatives from 12 OPOs across six US regions completed the entire survey; 8 of 12 reported serving > 50 referral hospitals. Most respondents (11 of 12) reported comparing their referral hospital's DNC policies with the 2010 American Academy of Neurology Practice Parameter and/or other (4 of 12) guidelines. Additionally, most (10 of 12) reported independently reviewing and verifying each DNC determination. Nearly half (5 of 12) reported concerns about guideline-discordant hospital policies, and only 3 of 12 thought all referral hospitals followed the 2010 American Academy of Neurology Practice Parameter in practice. Moreover, 9 of 12 reported concerns about clinician knowledge surrounding DNC determination, and most (10 of 12) reported having received referrals for patients whose DNC declaration was ultimately reversed. All reported experiences in which their OPO requested additional assessments (11 of 12 clinical evaluation, 10 of 12 ancillary testing, 9 of 12 apnea testing) because of concerns about DNC determination validity. CONCLUSIONS:Accurate DNC determination is important to maintain public trust. Nearly all OPO respondents reported a process to verify hospital DNC policies and practices with medical society guidelines. Many reported concerns about clinician knowledge surrounding DNC determination and guideline-discordant policies and practices. Educational and regulatory advocacy efforts are needed to facilitate systematic implementation of guideline-concordant practices across the country.
PMID: 38750393
ISSN: 1556-0961
CID: 5658712

The Impact of Functionality and Psychological Outcome on Social Engagement 3-months after Intracerebral Hemorrhage

Jadow, Benjamin; Melmed, Kara R; Lord, Aaron; Olivera, Anlys; Frontera, Jennifer; Brush, Benjamin; Ishida, Koto; Torres, Jose; Zhang, Cen; Dickstein, Leah; Kahn, Ethan; Zhou, Ting; Lewis, Ariane
BACKGROUND:Although it is well-known that intracerebral hemorrhage (ICH) is associated with physical and psychological morbidity, there is scant data on factors influencing social engagement after ICH. Understanding the relationship between functionality, psychological outcome and social engagement post-bleed may facilitate identification of patients at high risk for social isolation after ICH. METHODS:Patients ≥18-years-old with non-traumatic ICH from January 2015-March 2023 were identified from the Neurological Emergencies Outcomes at NYU (NEON) registry. Data on discharge functionality were collected from the medical record. 3-months post-bleed, patients/their legally-authorized representatives (LARs) were contacted to complete Neuro-QoL social engagement, anxiety, depression, and sleep inventories. Patients were stratified by ability to participate in social roles and activities (good=T-score>50, poor=T-score≤50) and satisfaction with social roles and activities (high=T-score>50 and low=T-score≤50). Univariate comparisons were performed to evaluate the relationship between post-bleed social engagement and both functionality and psychological outcome using Pearson's chi-square, Fisher's Exact test, and Mann-Whitney U tests. Multivariate logistic regression was subsequently performed using variables that were significant on univariate analysis (p<0.05). RESULTS:The social engagement inventories were completed for 55 patients with ICH; 29 (53 %) by the patient alone, 14 (25 %) by a LAR alone, and 12 (22 %) by both patient and LAR. 15 patients (27 %) had good ability to participate in social roles and activities and 10 patients (18 %) had high satisfaction with social roles and activities. Social engagement was associated with both functionality and psychological outcome on univariate analysis, but on multivariate analysis, it was only related to functionality; post-bleed ability to participate in social roles and activities was associated with discharge home, discharge GCS score, discharge mRS score, and discharge NIHSS score (p<0.05) and post-bleed satisfaction with social roles and activities was related to discharge mRS score and discharge NIHSS score (p<0.05). CONCLUSION/CONCLUSIONS:In patients with nontraumatic ICH, social engagement post-bleed was related to discharge functionality, even when controlling for depression, anxiety, and sleep disturbance.
PMID: 39321574
ISSN: 1872-6968
CID: 5746572

Caring for Coma after Severe Brain Injury: Clinical Practices and Challenges to Improve Outcomes: An Initiative by the Curing Coma Campaign [Editorial]

Murtaugh, Brooke; Olson, DaiWai M; Badjatia, Neeraj; Lewis, Ariane; Aiyagari, Venkatesh; Sharma, Kartavya; Creutzfeldt, Claire J; Falcone, Guido J; Shapiro-Rosenbaum, Amy; Zink, Elizabeth K; Suarez, Jose I; Silva, Gisele Sampaio; ,
Severe brain injury can result in disorders of consciousness (DoC), including coma, vegetative state/unresponsive wakefulness syndrome, and minimally conscious state. Improved emergency and trauma medicine response, in addition to expanding efforts to prevent premature withdrawal of life-sustaining treatment, has led to an increased number of patients with prolonged DoC. High-quality bedside care of patients with DoC is key to improving long-term functional outcomes. However, there is a paucity of DoC-specific evidence guiding clinicians on efficacious bedside care that can promote medical stability and recovery of consciousness. This Viewpoint describes the state of current DoC bedside care and identifies knowledge and practice gaps related to patient care with DoC collated by the Care of the Patient in Coma scientific workgroup as part of the Neurocritical Care Society's Curing Coma Campaign. The gap analysis identified and organized domains of bedside care that could affect patient outcomes: clinical expertise, assessment and monitoring, timing of intervention, technology, family engagement, cultural considerations, systems of care, and transition to the post-acute continuum. Finally, this Viewpoint recommends future research and education initiatives to address and improve the care of patients with DoC.
PMID: 39433705
ISSN: 1556-0961
CID: 5739632

Worm-like necrotic inflammatory substance in Jackson-Pratt drain after spinal fusion

Paige Aladin, Meagan; Mantilla Arango, Jose; Louie, Eddie; Protopsaltis, Themistocles; Lewis, Ariane
PMID: 39368253
ISSN: 1532-2653
CID: 5705822

The Quest to Revise the Uniform Determination of Death Act: Why We Tried, Why We Failed, and Where We Go from Here [Editorial]

Lewis, Ariane
PMID: 38512640
ISSN: 1556-0961
CID: 5640742

Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness

Rubin, Michael A; Lewis, Ariane; Creutzfeldt, Claire J; Shrestha, Gentle S; Boyle, Quinn; Illes, Judy; Jox, Ralf J; Trevick, Stephen; Young, Michael J; ,
People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.
PMID: 38872033
ISSN: 1556-0961
CID: 5669412

Negative disease-related stigma 3-months after hemorrhagic stroke is related to functional outcome and female sex

Pullano, Alyssa; Melmed, Kara R; Lord, Aaron; Olivera, Anlys; Frontera, Jennifer; Brush, Benjamin; Ishida, Koto; Torres, Jose; Zhang, Cen; Dickstein, Leah; Kahn, Ethan; Zhou, Ting; Lewis, Ariane
OBJECTIVES/OBJECTIVE:The objective of this study was to determine factors associated with negative disease-related stigma after hemorrhagic stroke. MATERIALS AND METHODS/METHODS:Patients with non-traumatic hemorrhage (ICH or SAH) admitted between January 2015 and February 2021 were assessed by telephone 3-months after discharge using the Quality of Life in Neurological Disorders (Neuro-QoL) Negative Disease-Related Stigma Short Form inventory. We evaluated the relationship between disease-related stigma (T-score >50) and pre-stroke demographics, admission data, and poor functional outcome (3-month mRS score 3-5 and Barthel Index <100). RESULTS:We included 89 patients (56 ICH and 33 SAH). The median age was 63 (IQR 50-69), 43 % were female, and 67 % graduated college. Admission median GCS score was 15 (IQR 13-15) and APACHE II score was 12 (IQR 9-17). 31 % had disease-related stigma. On univariate analysis, disease-related stigma was associated with female sex, non-completion of college, GCS score, APACHE II score, and 3-month mRS score (all p < 0.05). On multivariate analysis, disease-related stigma was associated with female sex (OR = 3.72, 95 % CI = 1.23-11.25, p = 0.02) and 3-month Barthel Index <100 (OR = 3.46, 95 % CI = 1.13-10.64, p = 0.03) on one model, and female sex (OR = 3.75, 95 % CI = 1.21-11.58, p = 0.02) and 3-month mRS score 3-5 (OR = 4.23, 95 % CI = 1.21-14.75, p = 0.02) on a second model. CONCLUSION/CONCLUSIONS:Functional outcome and female sex are associated with disease-related stigma 3-months after hemorrhagic stroke. Because stigma may negatively affect recovery, there is a need to understand the relationship between these factors to mitigate stroke-related stigma.
PMID: 38909872
ISSN: 1532-8511
CID: 5697842

Characteristics associated with 30-day post-stroke readmission within an academic urban hospital network

Spiegler, Kevin M; Irvine, Hannah; Torres, Jose; Cardiel, Myrna; Ishida, Koto; Lewis, Ariane; Galetta, Steven; Melmed, Kara R
OBJECTIVES/OBJECTIVE:Hospital readmissions are associated with poor health outcomes including illness severity and medical complications. The objective of this study was to identify characteristics associated with 30-day post-stroke readmission in an academic urban hospital network. MATERIALS AND METHODS/METHODS:We collected data on patients admitted with stroke from 2017 through 2022 who were readmitted within 30 days of discharge and compared them to a subset of non-readmitted stroke patients. Chart review was used to collect demographics, characteristics of the stroke, co-morbid conditions, in-hospital complications, and post-discharge care. Univariate analyses followed by regression analysis were used to assess characteristics associated with post-stroke readmission. RESULTS:We identified 4743 patients with stroke (18 % hemorrhagic, mean age 70.1 (standard deviation (SD) 17.2), 47.3 % female) discharged from the stroke services, of whom 282 (5.9 %) patients were readmitted within 30 days of index hospitalization. Univariate analyses identified 18 significantly different features between admitted and readmitted patients. Regression analysis revealed characteristics associated with readmission included private insurance (odds ratio (OR) 0.4, confidence interval (CI) 0.3-0.6, p < 0.001), comorbid peripheral vascular disease (PVD) (OR 2.7, CI 1.3-5.5, p = 0.009), malignancy (OR 1.6, CI 1.0-2.6, p = 0.04), seizure (OR 3.4, CI 1.4-8.2, p = 0.007), thrombolytic administration (OR 0.4, CI 0.2-0.7, p = 0.003), undergoing thrombectomy (OR 5.4, CI 2.9-10.1, p < 0.001), and higher discharge modified Rankin Scale score (OR 1.2, CI 1.0-1.3, p = 0.047). CONCLUSIONS:Our data demonstrate that thrombectomy, high discharge Rankin score, comorbid malignancy, seizure or PVD, and lack of thrombolytic administration or private insurance predict readmission.
PMID: 39216710
ISSN: 1532-8511
CID: 5687512

An Exploratory Analysis of Preclinical and Clinical Factors Associated With Sleep Disturbance Assessed via the Neuro-QoL After Hemorrhagic Stroke

Ecker, Sarah; Lord, Aaron; Gurin, Lindsey; Olivera, Anlys; Ishida, Koto; Melmed, Kara R; Torres, Jose; Zhang, Cen; Frontera, Jennifer; Lewis, Ariane
BACKGROUND AND PURPOSE/UNASSIGNED:Sleep disturbance after hemorrhagic stroke (intracerebral or subarachnoid hemorrhage) can impact rehabilitation, recovery, and quality of life. We sought to explore preclinical and clinical factors associated with sleep disturbance after hemorrhagic stroke assessed via the Quality of Life in Neurological Disorders (Neuro-QoL) short form sleep disturbance inventory. METHODS/UNASSIGNED:We telephonically completed the Neuro-QoL short form sleep disturbance inventory 3-months and 12-months after hemorrhagic stroke for patients >18-years-old hospitalized between January 2015 and February 2021. We examined the relationship between sleep disturbance (T-score >50) and social and neuropsychiatric history, systemic and neurological illness severity, medical complications, and temporality. RESULTS/UNASSIGNED:= .046). CONCLUSION/UNASSIGNED:This exploratory analysis did not demonstrate a sustained relationship between any preclinical or clinical factors and sleep disturbance after hemorrhagic stroke. Larger studies that include comparison to patients with ischemic stroke and healthy individuals and utilize additional techniques to evaluate sleep disturbance are needed.
PMCID:11181970
PMID: 38895018
ISSN: 1941-8744
CID: 5672082

Perspectives of Medical Organizations, Organ Procurement Organizations, and Advocacy Organizations About Revising the Uniform Determination of Death Act (UDDA)

Lewis, Ariane
BACKGROUND:The Uniform Law Commission paused work of the Drafting Committee to Revise the Uniform Determination of Death Act (UDDA) in September 2023. METHODS:Thematic review was performed of comments submitted to the Uniform Law Commission by medical organizations (MO), organ procurement organizations (OPO), and advocacy organizations (AO) from 1/1/2023 to 7/31/2023. RESULTS:Of comments from 41 organizations (22 AO, 15 MO, 4 OPO), 34 (83%) supported UDDA revision (50% OPO, 33% MO recommended against revision). The most comments addressed modifications to "all functions of the entire brain, including the brainstem" (31; 95% AO, 75% OPO, 47% MO), followed by irreversible versus permanent (25; 77% AO, 50% OPO, 40% MO), accommodation of brain death/death by neurologic criteria (BD/DNC) objections (23; 100% OPO, 80% MO, 32% AO), consent for BD/DNC evaluation (18; 75% OPO, 47% MO, 36% AO), "accepted medical standards" (13; 36% AO, 33% MO, 0% OPO), notification before BD/DNC evaluation (14; 100% OPO, 53% MO, 9% AO), time to gather before discontinuation of organ support after BD/DNC determination (12; 60% MO, 25% OPO, 9% AO), and BD/DNC examiner credential requirements (2; 13% MO, 0% AO, 0% OPO). The predominant themes were that the revised UDDA should include the term "irreversible" and shouldn't (1) stipulate specific medical guidelines, (2) require notification before BD/DNC evaluation, or (3) require time to gather before discontinuation of organ support after BD/DNC determination. Views on other topics were mixed, but MO and OPO generally advocated for the revised UDDA to take a functional approach to BD/DNC, not require consent for BD/DNC evaluation, and not require opt-out accommodation of BD/DNC objections. Contrastingly, many AO and some MO with religious affiliations or a focus on advocacy favored the revised UDDA take an anatomic approach to BD/DNC or eliminate BD/DNC altogether, require consent for BD/DNC evaluation, and require opt-out accommodation of BD/DNC objections. CONCLUSIONS:Most commenting organizations support UDDA revision, but perspectives on the approach vary, so the Drafting Committee could not formulate revisions that would be agreeable to all stakeholders.
PMID: 37880474
ISSN: 1556-0961
CID: 5664542