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1.
J Pain Symptom Manage ; 67(5): 402-410.e1, 2024 May.
Article in English | MEDLINE | ID: mdl-38342474

ABSTRACT

BACKGROUND: For a hospitalized patient, transitioning to comfort measures only (CMO) involves discontinuation of life-prolonging interventions with a goal of allowing natural death. Nurses play a pivotal role during the provision of CMO, caring for both the dying patient and their family. OBJECTIVE: To examine the experiences of ICU nurses caring for patients receiving CMO. METHODS: Between October 2020 and June 2021, nurses in the neuro- and medical-cardiac intensive care units at Harborview Medical Center in Seattle, WA, completed surveys about their experiences providing CMO. Surveys addressed involvement in discussions about CMO and questions asked by family members of dying patients. We also assessed nurses' moral distress related to CMO and used ordinal logistic regression to examine predictors of moral distress. RESULTS: Surveys were completed by 82 nurses (response rate 44%), with 79 (96%) reporting experience providing CMO in the previous year. Most preferred to be present for discussions between physicians or advanced practice providers and family members about transitioning to CMO (89% most of the time or always); however, only 31% were present most of the time or always. Questions from family about time to death, changes in breathing, and medications to relieve symptoms were common. Most nurses reported moral distress at least some of the time when providing CMO (62%). Feeling well-prepared to answer specific questions from family was associated with less moral distress. CONCLUSION: There is discordance between nurses' preferences for inclusion in discussions about the transition to CMO and their actual presence. Moral distress is common for nurses when providing CMO and feeling prepared to answer questions from family members may attenuate distress.


Subject(s)
Nurses , Physicians , Humans , Intensive Care Units , Family , Surveys and Questionnaires , Attitude of Health Personnel , Morals , Stress, Psychological
2.
Neurocrit Care ; 40(2): 448-476, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38366277

ABSTRACT

BACKGROUND: Moderate-severe traumatic brain injury (msTBI) carries high morbidity and mortality worldwide. Accurate neuroprognostication is essential in guiding clinical decisions, including patient triage and transition to comfort measures. Here we provide recommendations regarding the reliability of major clinical predictors and prediction models commonly used in msTBI neuroprognostication, guiding clinicians in counseling surrogate decision-makers. METHODS: Using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) methodology, we conducted a systematic narrative review of the most clinically relevant predictors and prediction models cited in the literature. The review involved framing specific population/intervention/comparator/outcome/timing/setting (PICOTS) questions and employing stringent full-text screening criteria to examine the literature, focusing on four GRADE criteria: quality of evidence, desirability of outcomes, values and preferences, and resource use. Moreover, good practice recommendations addressing the key principles of neuroprognostication were drafted. RESULTS: After screening 8125 articles, 41 met our eligibility criteria. Ten clinical variables and nine grading scales were selected. Many articles varied in defining "poor" functional outcomes. For consistency, we treated "poor" as "unfavorable". Although many clinical variables are associated with poor outcome in msTBI, only the presence of bilateral pupillary nonreactivity on admission, conditional on accurate assessment without confounding from medications or injuries, was deemed moderately reliable for counseling surrogates regarding 6-month functional outcomes or in-hospital mortality. In terms of prediction models, the Corticosteroid Randomization After Significant Head Injury (CRASH)-basic, CRASH-CT (CRASH-basic extended by computed tomography features), International Mission for Prognosis and Analysis of Clinical Trials in TBI (IMPACT)-core, IMPACT-extended, and IMPACT-lab models were recommended as moderately reliable in predicting 14-day to 6-month mortality and functional outcomes at 6 months and beyond. When using "moderately reliable" predictors or prediction models, the clinician must acknowledge "substantial" uncertainty in the prognosis. CONCLUSIONS: These guidelines provide recommendations to clinicians on the formal reliability of individual predictors and prediction models of poor outcome when counseling surrogates of patients with msTBI and suggest broad principles of neuroprognostication.


Subject(s)
Brain Injuries, Traumatic , Craniocerebral Trauma , Adult , Humans , Critical Illness , Reproducibility of Results , Cohort Studies , Brain Injuries, Traumatic/diagnosis , Brain Injuries, Traumatic/therapy , Prognosis
4.
J Pain Symptom Manage ; 67(4): 296-305, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38215896

ABSTRACT

OBJECTIVES: Evaluate clinical outcomes of stroke survivors in Peru discharged with artificial nutrition via a feeding tube (FT), and explore perspectives and experiences of these patients and their caregivers. METHODS: Retrospective chart review to describe the prevalence of FT placement and characteristics of patients admitted with stroke to the Instituto Nacional de Ciencias Neurológicas in Lima, Peru between January 2019 and 2021. Follow-up calls to stroke survivors discharged home with FTs or their caregivers included quantitative and qualitative questions to assess long-term outcome and explore perspectives around poststroke care and FT management. We analyzed quantitative data descriptively and applied thematic analysis to qualitative data using a consensus-driven codebook. RESULTS: Of 812 hospitalized patients with stroke, 146 (18%) were discharged home with FT, all with nasogastric tubes (NGTs). Follow-up calls were performed a median of 18 months after stroke with 96 caregivers and three patients. Twenty-five patients (25%) had died, and 82% of survivors (n = 61) remained dependent for some care. Four themes emerged from interviews: (1) perceived suffering (physical, emotional, existential) associated with the NGT and stroke-related disability, often exacerbated by lack of preparedness or prognostic awareness; (2) concerns around compromised personhood and value-discordant care; (3) coping with their loved-one's illness and the caregiving role; and (4) barriers to NGT care and skill acquisition. CONCLUSION: We identified a high burden of palliative and supportive needs among severe stroke survivors with NGTs and their caregivers suggesting opportunities to improve poststroke care through education, communication, and support.


Subject(s)
Caregivers , Stroke , Humans , Caregivers/psychology , Enteral Nutrition , Retrospective Studies , Peru , Stroke/therapy
5.
Stroke ; 55(1): 131-138, 2024 01.
Article in English | MEDLINE | ID: mdl-38063013

ABSTRACT

BACKGROUND: Stroke is the fifth leading cause of death in the United States, one of the leading contributors to Medicare cost, including through Medicare hospice benefits, and the rate of stroke mortality has been increasing since 2013. We hypothesized that hospice utilization among Medicare beneficiaries with stroke has increased over time and that the increase is associated with trends in stroke death rate. METHODS: Using Medicare Part A claims data and Centers for Disease Control mortality data at a national and state level from 2013 to 2019, we report the proportion and count of Medicare hospice beneficiaries with stroke as well as the stroke death rate (per 100 000) in Medicare-eligible individuals aged ≥65 years. RESULTS: From 2013 to 2019, the number of Medicare hospice beneficiaries with stroke as their primary diagnosis increased 104.1% from 78 812 to 160 884. The number of stroke deaths in the United States in individuals aged ≥65 years also increased from 109 602 in 2013 to 129 193 in 2019 (17.9% increase). In 2013, stroke was the sixth most common primary diagnosis for Medicare hospice, while in 2019 it was the third most common, surpassed only by cancer and dementia. The correlation between the change from 2013 to 2019 in state-level Medicare hospice for stroke and stroke death rate for Medicare-eligible adults was significant (Spearman ρ=0.5; P<0.001). In a mixed-effects model, the variance in the state-level proportion of Medicare hospice for stroke explained by the state-level stroke death rate was 48.2%. CONCLUSIONS: From 2013 to 2019, the number of Medicare hospice beneficiaries with a primary diagnosis of stroke more than doubled and stroke jumped from the sixth most common indication for hospice to the third most common. While increases in stroke mortality in the Medicare-eligible population accounts for some of the increase of Medicare hospice beneficiaries, over half the variance remains unexplained and requires additional research.


Subject(s)
Hospice Care , Hospices , Stroke , Aged , Humans , United States/epidemiology , Medicare , Stroke/epidemiology , Stroke/therapy
6.
Ann Am Thorac Soc ; 21(2): 187-199, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38063572

ABSTRACT

In critical care, the specific, structured approach to patient care known as a "time-limited trial" has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patient's response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trial's duration. The plan's 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.


Subject(s)
Critical Illness , Decision Making , Humans , United States , Critical Illness/therapy , Critical Care , Consensus , Patients
7.
Neurocrit Care ; 40(2): 415-437, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37957419

ABSTRACT

BACKGROUND: Traumatic spinal cord injury (tSCI) impacts patients and their families acutely and often for the long term. The ability of clinicians to share prognostic information about mortality and functional outcomes allows patients and their surrogates to engage in decision-making and plan for the future. These guidelines provide recommendations on the reliability of acute-phase clinical predictors to inform neuroprognostication and guide clinicians in counseling adult patients with tSCI or their surrogates. METHODS: A narrative systematic review was completed using Grading of Recommendations Assessment, Development, and Evaluation methodology. Candidate predictors, including clinical variables and prediction models, were selected based on clinical relevance and presence of an appropriate body of evidence. The Population/Intervention/Comparator/Outcome/Timing/Setting question was framed as "When counseling patients or surrogates of critically ill patients with traumatic spinal cord injury, should < predictor, with time of assessment if appropriate > be considered a reliable predictor of < outcome, with time frame of assessment >?" Additional full-text screening criteria were used to exclude small and lower quality studies. Following construction of an evidence profile and summary of findings, recommendations were based on four Grading of Recommendations Assessment, Development, and Evaluation criteria: quality of evidence, balance of desirable and undesirable consequences, values and preferences, and resource use. Good practice recommendations addressed essential principles of neuroprognostication that could not be framed in the Population/Intervention/Comparator/Outcome/Timing/Setting format. Throughout the guideline development process, an individual living with tSCI provided perspective on patient-centered priorities. RESULTS: Six candidate clinical variables and one prediction model were selected. Out of 11,132 articles screened, 369 met inclusion criteria for full-text review and 35 articles met eligibility criteria to guide recommendations. We recommend pathologic findings on magnetic resonance imaging, neurological level of injury, and severity of injury as moderately reliable predictors of American Spinal Cord Injury Impairment Scale improvement and the Dutch Clinical Prediction Rule as a moderately reliable prediction model of independent ambulation at 1 year after injury. No other reliable or moderately reliable predictors of mortality or functional outcome were identified. Good practice recommendations include considering the complete clinical condition as opposed to a single variable and communicating the challenges of likely functional deficits as well as potential for improvement and for long-term quality of life with SCI-related deficits to patients and surrogates. CONCLUSIONS: These guidelines provide recommendations about the reliability of acute-phase predictors of mortality, functional outcome, American Spinal Injury Association Impairment Scale grade conversion, and recovery of independent ambulation for consideration when counseling patients with tSCI or their surrogates and suggest broad principles of neuroprognostication in this context.


Subject(s)
Spinal Cord Injuries , Spinal Injuries , Adult , Humans , Quality of Life , Reproducibility of Results , Spinal Cord Injuries/diagnosis , Spinal Cord Injuries/therapy , Prognosis
8.
Neurocrit Care ; 40(2): 674-688, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37523110

ABSTRACT

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.


Subject(s)
Caregivers , Coping Skills , Humans , Caregivers/psychology , Coma , Adaptation, Psychological , Intensive Care Units
9.
J Palliat Med ; 27(1): 18-23, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37585623

ABSTRACT

Background: The modified Rankin Scale (mRS), which measures degree of disability in daily activities, is the most common outcome measure in stroke research. Quality of life (QoL), however, is impacted by factors other than disability. The goal of this study was to assess the correlation between functional dependence and a more patient-centered QoL measure, the European QoL visual analog scale (EQ VAS). Methods: We reviewed prehospital and hospital records from 11 acute care hospitals in Seattle, Washington (USA) from June 2000 to January 2003 for this cohort study. Patients with a final diagnosis of stroke were contacted three to four months after stroke, and mRS and EQ VAS were assessed. Good QoL was defined as EQ VAS ≥65. Results: Of 760 patients with stroke, 346 were available at three to four months. Most (296, 85.5%) had ischemic stroke. Overall, mRS and QoL were negatively correlated (Spearman's ρ -0.53, p < 0.001). Percentage of good QoL decreased as mRS increased from 0 to 5 (88%, 70%, 52%, 50%, 31%, 20%, respectively, p < 0.001). However, 36% (n = 62) of patients with dependent mRS (3-5, n = 174) reported good QoL, and 30% (n = 52) of patients with independent mRS (0-2, n = 172) reported poor QoL. In multivariable analysis, older age, male gender, and absence of dementia, were associated with good QoL despite dependent mRS; atrial fibrillation was associated with poor QoL despite independent mRS. Conclusions: QoL decreases with increasing mRS, but exceptions exist with good QoL despite high mRS. To provide patient-centered care, clinicians and researchers should avoid equating disability with QoL after stroke.


Subject(s)
Quality of Life , Stroke , Humans , Male , Cohort Studies , Outcome Assessment, Health Care , Washington
10.
Neurocrit Care ; 40(2): 395-414, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37923968

ABSTRACT

BACKGROUND: The objective of this document is to provide recommendations on the formal reliability of major clinical predictors often associated with intracerebral hemorrhage (ICH) neuroprognostication. METHODS: A narrative systematic review was completed using the Grading of Recommendations Assessment, Development, and Evaluation methodology and the Population, Intervention, Comparator, Outcome, Timing, Setting questions. Predictors, which included both individual clinical variables and prediction models, were selected based on clinical relevance and attention in the literature. Following construction of the evidence profile and summary of findings, recommendations were based on Grading of Recommendations Assessment, Development, and Evaluation criteria. Good practice statements addressed essential principles of neuroprognostication that could not be framed in the Population, Intervention, Comparator, Outcome, Timing, Setting format. RESULTS: Six candidate clinical variables and two clinical grading scales (the original ICH score and maximally treated ICH score) were selected for recommendation creation. A total of 347 articles out of 10,751 articles screened met our eligibility criteria. Consensus statements of good practice included deferring neuroprognostication-aside from the most clinically devastated patients-for at least the first 48-72 h of intensive care unit admission; understanding what outcomes would have been most valued by the patient; and counseling of patients and surrogates whose ultimate neurological recovery may occur over a variable period of time. Although many clinical variables and grading scales are associated with ICH poor outcome, no clinical variable alone or sole clinical grading scale was suggested by the panel as currently being reliable by itself for use in counseling patients with ICH and their surrogates, regarding functional outcome at 3 months and beyond or 30-day mortality. CONCLUSIONS: These guidelines provide recommendations on the formal reliability of predictors of poor outcome in the context of counseling patients with ICH and surrogates and suggest broad principles of neuroprognostication. Clinicians formulating their judgments of prognosis for patients with ICH should avoid anchoring bias based solely on any one clinical variable or published clinical grading scale.


Subject(s)
Cerebral Hemorrhage , Critical Illness , Adult , Humans , Critical Illness/therapy , Reproducibility of Results , Cerebral Hemorrhage/diagnosis , Cerebral Hemorrhage/therapy , Prognosis , Hospitalization
12.
Neurocrit Care ; 39(3): 600-610, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37704937

ABSTRACT

BACKGROUND: To facilitate comparative research, it is essential for the fields of neurocritical care and rehabilitation to establish common data elements (CDEs) for disorders of consciousness (DoC). Our objective was to identify CDEs related to goals-of-care decisions and family/surrogate decision-making for patients with DoC. METHODS: To achieve this, we formed nine CDE working groups as part of the Neurocritical Care Society's Curing Coma Campaign. Our working group focused on goals-of-care decisions and family/surrogate decision-makers created five subgroups: (1) clinical variables of surrogates, (2) psychological distress of surrogates, (3) decision-making quality, (4) quality of communication, and (5) quality of end-of-life care. Each subgroup searched for existing relevant CDEs in the National Institutes of Health/CDE catalog and conducted an extensive literature search for additional relevant study instruments to be recommended. We classified each CDE according to the standard definitions of "core", "basic", "exploratory", or "supplemental", as well as their use for studying the acute or chronic phase of DoC, or both. RESULTS: We identified 32 relevant preexisting National Institutes of Health CDEs across all subgroups. A total of 34 new instruments were added across all subgroups. Only one CDE was recommended as disease core, the "mode of death" of the patient from the clinical variables subgroup. CONCLUSIONS: Our findings provide valuable CDEs specific to goals-of-care decisions and family/surrogate decision-making for patients with DoC that can be used to standardize studies to generate high-quality and reproducible research in this area.


Subject(s)
Biomedical Research , Common Data Elements , Humans , Consciousness Disorders/diagnosis , Consciousness Disorders/therapy , Goals , Decision Making
13.
Stroke ; 54(10): 2602-2612, 2023 10.
Article in English | MEDLINE | ID: mdl-37706340

ABSTRACT

BACKGROUND: Patients with stroke receiving invasive mechanical ventilation (IMV) and tracheostomy incur intense treatment and long hospitalizations. We aimed to evaluate US hospitalization costs for patients with stroke requiring IMV, tracheostomy, or no ventilation. METHODS: We performed a retrospective observational study of US hospitalizations for acute ischemic stroke, intracerebral hemorrhage, and subarachnoid hemorrhage receiving IMV, tracheostomy, or none using the National Inpatient Sample, 2008 to 2017. We calculated hospitalization costs using cost-to-charge ratios adjusted to 2017 US dollars for inpatients with stroke by ventilation status (no IMV, IMV alone, tracheostomy). RESULTS: Of an estimated 5.2 million (95% CI, 5.1-5.3) acute stroke hospitalizations, 2008 to 2017; 9.4% received IMV alone and 1.4% received tracheostomy. Length of stay for patients without IMV was shorter (median, 4 days; interquartile range [IQR], 2-6) compared with IMV alone (median, 6 days; [IQR, 2-13]), and tracheostomy (median, 25 days; [IQR, 18-36]; P<0.001). Mortality for patients without IMV was 3.2% compared with 51.2% for IMV alone and 9.8% for tracheostomy (P<0.001). Median hospitalization costs for patients without IMV was $9503 (IQR, $6544-$14 963), compared with $23 774 (IQR, $10 900-$47 735) for IMV alone and $95 380 (IQR, $63 921-$144 019) for tracheostomy. Tracheostomy placement in ≤7 days had lower costs compared with placement in >7 days (median, $71 470 [IQR, $47 863-$108 250] versus $102 979 [IQR, $69 563-$152 543]; P<0.001). Each day awaiting tracheostomy was associated with a 2.9% cost increase (95% CI, 2.6%-3.1%). US hospitalization costs for patients with acute stroke were $8.7 billion/y (95% CI, $8.5-$8.9 billion). For IMV alone, costs were $1.8 billion/y (95% CI, $1.7-$1.9 billion) and for tracheostomy $824 million/y (95% CI, $789.7-$858.3 million). CONCLUSIONS: Patients with acute stroke who undergo tracheostomy account for 1.4% of stroke admissions and 9.5% of US stroke hospitalization costs. Future research should focus on the added value to society and patients of IMV and tracheostomy, in particular after 7 days for the latter procedure given the increased costs incurred and poor outcomes in stroke.


Subject(s)
Ischemic Stroke , Stroke , Humans , Respiration, Artificial , Tracheostomy , Stroke/therapy , Cerebral Hemorrhage/therapy , Retrospective Studies
15.
Res Sq ; 2023 Jun 26.
Article in English | MEDLINE | ID: mdl-37461521

ABSTRACT

INTRODUCTION: In order to facilitate comparative research, it is essential for the fields of neurocritical care and rehabilitation to establish common data elements (CDE) for disorders of consciousness (DoC). Our objective was to identify CDEs related to goals-of-care decisions and family/surrogate decision-making for patients with DoC. METHODS: To achieve this, we formed nine CDE working groups as part of the Neurocritical Care Society's Curing Coma Campaign. Our working group focused on goals-of-care decisions and family/surrogate decision-makers created five subgroups: (1) clinical variables of surrogates, (2) psychological distress of surrogates, (3) decision-making quality, (4) quality of communication, and (5) quality of end-of-life care. Each subgroup searched for existing relevant CDEs in the NIH/CDE catalog and conducted an extensive literature search for additional relevant study instruments to be recommended. We classified each CDE according to the standard definitions of "core," "basic," "exploratory," or "supplemental," as well as their utility for studying the acute or chronic phase of DoC, or both. RESULTS: We identified 32 relevant pre-existing NIH CDEs across all subgroups. A total of 34 new instruments were added across all subgroups. Only one CDE was recommended as disease core, the "mode of death" of the patient from the clinical variables subgroup. CONCLUSIONS: Our findings provide valuable CDEs specific to goals-of-care decisions and family/surrogate decision-making for patients with DoC that can be used to standardize studies to generate high-quality and reproducible research in this area.

16.
J Surg Res ; 291: 34-42, 2023 11.
Article in English | MEDLINE | ID: mdl-37331190

ABSTRACT

INTRODUCTION: The decision to withdraw life sustaining treatment (WDLST) in older adults with traumatic brain injury is subject to wide variability leading to nonbeneficial interventions and unnecessary use of hospital resources. We hypothesized that patient and hospital factors are associated with WDLST and WDLST timing. METHODS: All traumatic brain injury patients ≥65 with Glasgow coma scores (GCS) of 4-11 from 2018 to 2019 at level I and II centers were selected from the National Trauma Data Bank. Patients with head abbreviated injury scores 5-6 or death within 24 h were excluded. Bayesian additive regression tree analysis was performed to identify the cumulative incidence function (CIF) and the relative risks (RR) over time for withdrawal of care, discharge to hospice (DH), and death. Death alone (no WDLST or DH) served as the comparator group for all analyses. A subanalysis of the composite outcome WDLST/DH (defined as end-of-life-care), with death (no WDLST or DH) as a comparator cohort was performed. RESULTS: We included 2126 patients, of whom 1957 (57%) underwent WDLST, 402 (19%) died, and 469 (22%) were DH. 60% of patients were male, and the mean age was 80 y. The majority of patients were injured by fall (76%, n = 1644). Patients who were DH were more often female (51% DH versus 39% WDLST), had a past medical history of dementia (45% DH versus 18% WDLST), and had lower admission injury severity score (14 DH versus 18.6 WDLST) (P < 0.001). Compared to those who DH, those who underwent WDLST had a lower GCS (9.8 versus 8.4, P < 0.001). CIF of WDSLT and DH increased with age, stabilizing by day 3. At day 3, patients ≥90 y had an increased RR of DH compared to WDLST (RR 2.5 versus 1.4). As GCS increased, CIF and RR of WDLST decreased, while CIF and RR of DH increased (RR on day 3 for GCS 12: WDLST 0.42 versus DH 1.31).Patients at nonprofit institutions were more likely to undergo WDLST (RR 1.15) compared to DH (0.68). Compared to patients of White race, patients of Black race had a lower RR of WDLST at all timepoints. CONCLUSIONS: Patient and hospital factors influence the practice of end-of-life-care (WDLST, DH, and death), highlighting the need to better understand variability to target palliative care interventions and standardize care across populations and trauma centers.


Subject(s)
Brain Injuries, Traumatic , Craniocerebral Trauma , Humans , Aged , Aged, 80 and over , Bayes Theorem , Brain Injuries, Traumatic/therapy , Hospitalization , Injury Severity Score , Withholding Treatment , Glasgow Coma Scale , Retrospective Studies
17.
Lancet Neurol ; 22(7): 619-631, 2023 07.
Article in English | MEDLINE | ID: mdl-37353280

ABSTRACT

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.


Subject(s)
Dementia , Palliative Care , Adult , Humans , Quality of Life , Long-Term Care , Caregivers
18.
Neurocrit Care ; 39(2): 284-293, 2023 10.
Article in English | MEDLINE | ID: mdl-37349599

ABSTRACT

Older adults account for a disproportionate share of the morbidity and mortality after traumatic brain injury (TBI). Predicting functional and cognitive outcomes for individual older adults after TBI is challenging in the acute phase of injury. Given that neurologic recovery is possible and uncertain, life-sustaining therapy may be pursued initially, even if for some, there is a risk of survival to an undesired level of disability or dependence. Experts recommend early conversations about goals of care after TBI, but evidence-based guidelines for these discussions or for the optimal method for communicating prognosis are limited. The time-limited trial (TLT) model may be an effective strategy for managing prognostic uncertainty after TBI. TLTs can provide a framework for early management: specific treatments or procedures are used for a defined period of time while monitoring for an agreed-upon outcome. Outcome measures, including signs of worsening and improvement, are defined at the outset of the trial. In this Viewpoint article, we discuss the use of TLTs for older adults with TBI, their potential benefits, and current challenges to their application. Three main barriers limit the implementation of TLTs in these scenarios: inadequate models for prognostication; cognitive biases faced by clinicians and surrogate decision-makers, which may contribute to prognostic discordance; and ambiguity regarding appropriate endpoints for the TLT. Further study is needed to understand clinician behaviors and surrogate preferences for prognostic communication and how to optimally integrate TLTs into the care of older adults with TBI.


Subject(s)
Brain Injuries, Traumatic , Humans , Aged , Decision Making, Shared , Outcome Assessment, Health Care , Time Factors
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