Addressing the Unmet Needs of Patients With Rapidly Progressive Neurological Disease: A Case Report of Palliative Care in Creutzfeldt-Jakob Disease (CJD).

Creutzfeldt-Jacob disease (CJD) is a rare neurodegenerative disorder that typically progresses rapidly and unrelentingly. Providing comfort and support for patients with CJD presents significant challenges for clinicians and caregivers. In comparison to the more typical disease progression experienced in dementias, the trajectory of CJD differs significantly. This case report delves into these differences and emphasizes the need for the development of guidelines for healthcare professionals and families who care for individuals with CJD. Such guidelines would help facilitate better care and support for patients and their families throughout the course of this devastating illness.

Early Guided Palliative Care Communication for Patients With COVID-19 Receiving ECMO.

BACKGROUND: Extracorporeal membrane oxygenation (ECMO) combined with COVID-19 presents challenges (eg, isolation, anticipatory grief) for patients and families. OBJECTIVE: To (1) describe characteristics and outcomes of patients with COVID-19 receiving ECMO, (2) develop a practice improvement strategy to implement early, semistructured palliative care communication in ECMO acknowledgment meetings with patients' families, and (3) examine family members' experiences as recorded in clinicians' notes during these meetings. METHODS: Descriptive observation of guided, in-depth meetings with families of patients with COVID-19 receiving ECMO, as gathered from the electronic medical record of a large urban academic medical center. Most meetings were held within 3 days of initiation of ECMO. RESULTS: Forty-three patients received ECMO between March and October 2020. The mean patient age was 44 years; 63% of patients were Hispanic/Latino, 19% were Black, and 7% were White. Documentation of the ECMO acknowledgment meeting was completed for 60% of patients. Fifty-six percent of patients survived to hospital discharge. Family discussions revealed 7 common themes: hope, reliance on faith, multiple family members with COVID-19, helping children adjust to a new normal, visitation restrictions, gratitude for clinicians and care, and end-of-life discussions. CONCLUSION: Early and ongoing provision of palliative care is feasible and useful for highlighting a range of experiences related to COVID-19. Palliative care is also useful for educating patients and families on the benefits and limitations of ECMO therapy.

The Corpse: Time for Another Look A Review of the Culture of Embalming, Viewing and the Social Construction.

Embalming of the dead is more common in the United States than anywhere else in the world. Battles far from home during the Civil War with concern for contagion from dead bodies being shipped home compelled President Lincoln to direct the troops to use embalming to allow the return of the Union dead to their homes. Viewings were common with war heroes and culminated with the viewing of Lincoln himself. In the 20th century embalming became a tradition despite substantial evidence indicating environmental and occupational hazards related to embalming fluids and carbon dioxide generated from manufacturing steel coffins before placing in concrete burial vaults. Embalming is promoted and considered helpful to the grieving process. Embalmers are expected to produce an illusion of rest, an image that in some ways disguises death for the benefit of mourners. The dead are carefully displayed in a condition of liminal repose where the 'true' condition is hidden, and death is removed from the actual event. In this paper we highlight the spiritual and cultural complexities of embalming related issues. We propose an innovative process to empower people facing serious illness, and their families to make shared and informed decisions, especially when death is an expected outcome.

The Multimorbidity Index: A Tool for Assessing the Prognosis of Patients from Their History of Illness.

BACKGROUND: The Multimorbidity (MM) Index predicts the prognosis of patients from their diagnostic history. In contrast to existing approaches with broad diagnostic categories, it treats each diagnosis as a separate independent variable using individual International Classification of Disease, Revision 9 (ICD-9) codes. OBJECTIVE: This paper describes the MM Index, reviews the published data on its accuracy, and provides procedures for implementing the Index within electronic health record (EHR) systems. Methods: The MM Index was tested on various patient populations by using data from the United States Department of Veterans Affairs data warehouse and claims data within the Healthcare Cost and Utilization Project of the Agency for Health Care Research and Quality. RESULTS: In cross-validated studies, the MM Index outperformed prognostic indices based on physiological markers, such as CD4 cell counts in HIV/AIDS, HbAlc levels in diabetes, ejection fractions in heart failure, or the 13 physiological markers commonly used for patients in intensive care units. When predicting the prognosis of nursing home patients by using the cross-validated area under a receiver operating characteristic (ROC) curve, the MM Index was 15 percent outperformed the Quan variant of the Charlson Index, 27 percent more accurate than the Deyo variant of the Charlson Index, and 22 percent more accurate than the von Walraven variant of the Elixhauser Index. For patients in intensive care units, the MM Index was 13 percent outperformed the cross-validated area under ROC associated with Elixhauser's categories. The MM Index also demonstrated greater accuracy than a number of commercially available measures of illness severity; including a fivefold greater accuracy than the All Patient Refined Diagnosis-Related Groups and a threefold greater accuracy than All Payer Severity-Adjusted Diagnosis-Related Groups. CONCLUSION: The MM Index is statistically more accurate than many existing measures of prognosis. The magnitude of improvement is large and may lead to a clinically meaningful difference in patient care. Given the large improvements in accuracy, the use of the MM Index for policy and comparative effectiveness analysis is recommended.

Higher risk for incident heart failure and cardiovascular mortality among community-dwelling octogenarians without pneumococcal vaccination.

AIMS: Octogenarians have the highest incidence of heart failure (HF) that is not fully explained by traditional risk factors. We explored whether lack of pneumococcal vaccination is associated with higher risk of incident HF among octogenarians. METHODS AND RESULTS: In the Cardiovascular Health Study (CHS), 5290 community-dwelling adults, ≥65 years of age, were free of baseline HF and had data on pneumococcal vaccination. Of these, 851 were octogenarians, of whom, 593 did not receive pneumococcal vaccination. Multivariable-adjusted hazard ratios (aHR) and 95% confidence intervals (CI) for associations of lack of pneumococcal vaccination with incident HF and other outcomes during 13 years of follow-up were estimated using Cox regression models, adjusting for demographics and other HF risk factors including influenza vaccination. Octogenarians had a mean (±SD) age of 83 (±3) years; 52% were women and 17% African American. Overall, 258 participants developed HF and 662 died. Lack of pneumococcal vaccination was associated with higher relative risk of incident HF (aHR, 1.37; 95% CI, 1.01-1.85; P = 0.044). There was also higher risk for all-cause mortality (aHR, 1.23; 95% CI, 1.02-1.49; P = 0.028), which was mostly driven by cardiovascular mortality (aHR, 1.45; 95% CI, 1.06-1.98; P = 0.019). Octogenarians without pneumococcal vaccination had a trend toward higher risk of hospitalization due to pneumonia (aHR, 1.34; 95% CI, 0.99-1.81; P = 0.059). These associations were not observed among those 65-79 years of age. CONCLUSIONS: Among community-dwelling octogenarians, lack of pneumococcal vaccination was associated with a significantly higher independent risk of incident HF and mortality, and trend for higher pneumonia hospitalization.

Sequence of Functional Loss and Recovery in Nursing Homes.

PURPOSE OF THE STUDY: This study provides benchmarks for likelihood, number of days until, and sequence of functional decline and recovery. DESIGN AND METHODS: We analyzed activities of daily living (ADLs) of 296,051 residents in Veteran Affairs nursing homes between January 1, 2000 and October 9, 2012. ADLs were extracted from standard minimum data set assessments. Because of significant overlap between short- and long-stay residents, we did not distinguish between these populations. Twenty-five combinations of ADL deficits described the experience of 84.3% of all residents. A network model described transitions among these 25 combinations. The network was used to calculate the shortest, longest, and maximum likelihood paths using backward induction methodology. Longitudinal data were used to derive a Bayesian network that preserved the sequence of occurrence of 9 ADL deficits. RESULTS: The majority of residents (57%) followed 4 pathways in loss of function. The most likely sequence, in order of occurrence, was bathing, grooming, walking, dressing, toileting, bowel continence, urinary continence, transferring, and feeding. The other three paths occurred with reversals in the order of dressing/toileting and bowel/urinary continence. ADL impairments persisted without any change for an average of 164 days (SD = 62). Residents recovered partially or completely from a single impairment in 57% of cases over an average of 119 days (SD = 41). Recovery rates declined as residents developed more than 4 impairments. IMPLICATIONS: Recovery of deficits among those studied followed a relatively predictable path, and although more than half recovered from a single functional deficit, recovery exceeded 100 days suggesting time to recover often occurs over many months.

The development and application of an oncology Therapy-Related Symptom Checklist for Adults (TRSC) and Children (TRSC-C) and e-health applications.

BACKGROUND: Studies found that treatment symptoms of concern to oncology/hematology patients were greatly under-identified in medical records. On average, 11.0 symptoms were reported of concern to patients compared to 1.5 symptoms identified in their medical records. A solution to this problem is use of an electronic symptom checklist that can be easily accessed by patients prior to clinical consultations. PURPOSE: Describe the oncology Therapy-Related Symptom Checklists for Adults (TRSC) and Children (TRSC-C), which are validated bases for e-Health symptom documentation and management. The TRSC has 25 items/symptoms; the TRSC-C has 30 items/symptoms. These items capture up to 80% of the variance of patient symptoms. Measurement properties and applications with outpatients are presented. E-Health applications are indicated. METHODS: The TRSC was developed for adults (N = 282) then modified for children (N = 385). Statistical analyses have been done using correlational, epidemiologic, and qualitative methods. Extensive validation of measurement properties has been reported. RESULTS: Research has found high levels of patient/clinician satisfaction, no increase in clinic costs, and strong correlations of TRSC/TRSC-C with medical outcomes. A recently published sequential cohort trial with adult outpatients at a Mayo Clinic community cancer center found TRSC use produced a 7.2% higher patient quality of life, 116% more symptoms identified/managed, and higher functional status. DISCUSSION, IMPLICATIONS, AND FOLLOW-UP: An electronic system has been built to collect TRSC symptoms, reassure patients, and enhance patient-clinician communications. This report discusses system design and efforts made to provide an electronic system comfortable to patients. Methods used by clinicians to promote comfort and patient engagement were examined and incorporated into system design. These methods included (a) conversational data collection as opposed to survey style or standardized questionnaires, (b) short response phrases indicating understanding of the reported symptom, (c) use of open-ended questions to reduce long lists of symptoms, (d) directed questions that ask for confirmation of expected symptoms, (e) review of symptoms at designated stages, and (d) alerting patients when the computer has informed clinicians about patient-reported symptoms. CONCLUSIONS: An e-Health symptom checklist (TRSC/TRSC-C) can facilitate identification, monitoring, and management of symptoms; enhance patient-clinician communications; and contribute to improved patient outcomes.

Causal Analysis of Emergency Department Delays.

BACKGROUND: Improvement teams make causal inferences, but the methods they use are based on statistical associations. This article shows how data and statistical models can be used to help improvement teams make causal inferences and find the root causes of problems. METHODS: This article uses attribution data, competing risk survival analysis, and Bayesian network probabilities to analyze excessive emergency department (ED) stays within one hospital. We use data recorded by ED clinicians that attributed the cause of excessive ED stays to 23 causes for the 70 049 ED visits between March 2011 and April 2014. We use competing risk survival analysis to identify contribution of each cause to the delay. We use Bayesian network models to analyze interaction among different causes of excessive stays and find the root causes of this problem. RESULTS: This article shows the utility of causal analysis to help improvement teams focus on the root causes of problems. For the example analyzed in the article, most causes for patients' excessive ED stays were related to the hospital operations outside the ED. Therefore, improvement projects inside the ED such as expanding ED, increasing staff at the ED, or improving operations are less likely to have a positive impact on reducing excessive ED stays. On the contrary, interventions that improve hospital occupancy (better discharge, expansion of beds, etc) or improve laboratory response times are more likely to result in positive outcomes.

Risk of Heart Failure and Death After Prolonged Smoking Cessation: Role of Amount and Duration of Prior Smoking.

BACKGROUND: According to the 2004 Surgeon General's Report on Health Consequences of Smoking, after >15 years of abstinence, the cardiovascular risk of former smokers becomes similar to that of never-smokers. Whether this health benefit of smoking cessation varies by amount and duration of prior smoking remains unclear. METHODS AND RESULTS: Of the 4482 adults ≥65 years without prevalent heart failure (HF) in the Cardiovascular Health Study, 2556 were never-smokers, 629 current smokers, and 1297 former smokers with >15 years of cessation, of whom 312 were heavy smokers (highest quartile; ≥32 pack-years). Age-sex-race-adjusted hazard ratios (aHR) and 95% confidence intervals (CI) for centrally adjudicated incident HF and mortality during 13 years of follow-up were estimated using Cox regression models. Compared with never-smokers, former smokers as a group had similar risk for incident HF (aHR, 0.99; 95% CI, 0.85-1.16) and all-cause mortality (aHR, 1.08; 95% CI, 0.96-1.20), but former heavy smokers had higher risk for both HF (aHR, 1.45; 95% CI, 1.15-1.83) and mortality (aHR, 1.38; 95% CI, 1.17-1.64). However, when compared with current smokers, former heavy smokers had lower risk of death (aHR, 0.64; 95% CI, 0.53-0.77), but not of HF (aHR, 0.97; 95% CI, 0.74-1.28). CONCLUSIONS: After >15 years of smoking cessation, the risk of HF and death for most former smokers becomes similar to that of never-smokers. Although this benefit of smoking cessation is not extended to those with ≥32 pack-years of prior smoking, they have lower risk of death relative to current smokers.

Discharge Hospice Referral and Lower 30-Day All-Cause Readmission in Medicare Beneficiaries Hospitalized for Heart Failure.

BACKGROUND: Heart failure (HF) is the leading cause for hospital readmission. Hospice care may help palliate HF symptoms but its association with 30-day all-cause readmission remains unknown. METHODS AND RESULTS: Of the 8032 Medicare beneficiaries hospitalized for HF in 106 Alabama hospitals (1998-2001), 182 (2%) received discharge hospice referrals. Of the 7850 patients not receiving hospice referrals, 1608 (20%) died within 6 months post discharge (the hospice-eligible group). Propensity scores for hospice referral were estimated for each of the 1790 (182+1608) patients and were used to match 179 hospice-referral patients with 179 hospice-eligible patients who were balanced on 28 baseline characteristics (mean age, 79 years; 58% women; 18% non-white). Overall, 22% (1742/8032) died in 6 months, of whom 8% (134/1742) received hospice referrals. Among the 358 matched patients, 30-day all-cause readmission occurred in 5% and 41% of hospice-referral and hospice-eligible patients, respectively (hazard ratio associated with hospice referral, 0.12; 95% confidence interval, 0.06-0.24). Hazard ratios (95% confidence intervals) for 30-day all-cause readmission associated with hospice referral among the 126 patients who died and 232 patients who survived 30-day post discharge were 0.03 (0.04-0.21) and 0.17 (0.08-0.36), respectively. Although 30-day mortality was higher in the hospice referral group (43% versus 27%), it was similar at 90 days (64% versus 67% among hospice-eligible patients). CONCLUSIONS: A discharge hospice referral was associated with lower 30-day all-cause readmission among hospitalized patients with HF. However, most patients with HF who died within 6 months of hospital discharge did not receive a discharge hospice referral.

Heart failure prognosis: comorbidities matter.

BACKGROUND: Prior risk prediction models have included a selective group of broad comorbidities in scoring prognosis of heart failure (HF) patients. OBJECTIVE: We examined whether scoring a comprehensive set of comorbidities separately, could improve the performance and accuracy of predicting HF prognosis. METHODS: This is a cross-validated, longitudinal, retrospective, observational study. Data were collected on 602,050 unique HF patients, who received care through the Veterans Administration (VA) between October 1, 2006 and September 31, 2011. The dependent variable was mortality in six months. The independent variables were all International Classification of Disease (ICD) comorbidities, without grouping into broad disease categories. RESULTS: The area under the receiver-operating curve (AROC) for the multimorbidity (MM) index was 0.784 (95% confidence interval [CI]: 0.781-0.786). The MM index was significantly (alpha <0.05) more accurate than the Quan variant of the Charlson Index (AROC=0.656), the comorbidity categories within the Care Assessment of Need (CAN) Index (AROC=0.677), the von Walraven variant of the Elixhauser Index (AROC=0.639), chronological age (AROC=0.649), or ejection fraction (EF) (AROC=0.533). CONCLUSION: Inclusion of additional comorbidities improves the accuracy of HF prognostic indices. Future studies are needed to drive HF prognostic indices with the MM index as a component.

Relationship of Physical Activity and Healthy Eating with Mortality and Incident Heart Failure among Community-Dwelling Older Adults with Normal Body Mass Index.

AIMS: Normal body mass index (BMI) is associated with lower mortality and may be achieved by physical activity (PA), healthy eating (HE), or both. We examined the association of PA and HE with mortality and incident heart failure (HF) among 2040 community-dwelling older adults aged ≥ 65 years with baseline BMI 18.5 to 24.99 kg/m2 during 13 years of follow-up in Cardiovascular Health Study. METHODS AND RESULTS: Baseline PA was defined as ≥500 weekly metabolic equivalent task-minutes (MET-minutes) and HE as ≥5 daily servings of vegetable and fruit intake. Participants were categorized into 4 groups: (1) PA-/HE- (n=384); (2) PA+/HE- (n=992); (3) PA-/HE+ (n=162); and (4) PA+/HE+ (n=502). Participants had a mean age of 74 (±6) years, mean BMI of 22.6 (±1.5) kg/m2, 61% were women, and 4% African American. Compared with PA-/HE-, age-sex-race-adjusted hazard ratios (HRs) and 95% confidence intervals (CIs) for all-cause mortality for PA-/HE+, PA+/HE-, and PA+/HE+ groups were 0.96 (0.76-1.21), 0.61 (0.52-0.71) and 0.62 (0.52-0.75), respectively. These associations remained unchanged after multivariable adjustment and were similar for cardiovascular and non-cardiovascular mortalities. Respective demographic-adjusted HRs (95% Cis) for incident HF among 1954 participants without baseline HF were 1.21 (0.81-1.81), 0.71 (0.54-0.94) and 0.71 (0.51-0.98). These later associations lost significance after multivariable-adjustment. CONCLUSION: Among community-dwelling older adults with normal BMI, physical activity, regardless of healthy eating, was associated with lower risk of mortality and incident HF, but healthy eating had no similar protective association in this cohort.

Characteristics and outcomes of patients with advanced chronic systolic heart failure receiving care at the Veterans Affairs versus other hospitals: insights from the Beta-blocker Evaluation of Survival Trial (BEST).

BACKGROUND: Characteristics and outcomes of patients with heart failure and reduced ejection fraction receiving care at Veterans Affairs (VA) versus non-VA hospitals have not been previously reported. METHODS AND RESULTS: In the randomized controlled Beta-blocker Evaluation of Survival Trial (BEST; 1995-1999), of the 2707 (bucindolol=1353; placebo=1354) patients with heart failure and left ventricular ejection fraction ≤35%, 918 received care at VA hospitals, of which 98% (n=898) were male. Of the 1789 receiving care at non-VA hospitals, 68% (n=1216) were male. Our analyses were restricted to these 2114 male patients. VA patients were older with higher symptom and comorbidity burdens. There was no significant between-group difference in unadjusted primary end point of 2-year all-cause mortality (35% VA versus 32% non-VA; hazard ratio associated with VA hospitals, 1.09; 95% confidence interval, 0.94-1.26), which remained unchanged after adjustment for age and race (hazard ratio, 1.00; 95% confidence interval, 0.86-1.16) or multivariable adjustment, including cardiovascular morbidities (hazard ratio, 0.94; 95% confidence interval, 0.80-1.10). There was no between-group difference in cause-specific mortalities or hospitalizations. Chronic kidney disease, pulmonary edema, left ventricular ejection fraction <20%, and peripheral arterial disease were significant predictors of mortality for both groups. African America race, New York Heart Association class IV symptoms, atrial fibrillation, and right ventricular ejection fraction <20% were associated with higher mortality among non-VA hospital patients only; however, these differences from VA patients were not significant. CONCLUSIONS: Patients with heart failure and reduced ejection fraction receiving care at VA hospitals were older and sicker; yet their risk of mortality and hospitalization was similar to younger and healthier patients receiving care at non-VA hospitals. CLINICAL TRIAL REGISTRATION URL: http://www.clinicaltrials.gov. Unique identifier: NCT00000560.

Comparative effectiveness of hypoglycemic medications among veterans.

BACKGROUND: The efficacy of diabetic medications among patients with multiple comorbidities is not tested in randomized clinical studies. It is important to monitor the performance of these medications after marketing approvals. OBJECTIVE: To investigate the risk of all-cause mortality associated with prescription of hypoglycemic agents. METHODS: We retrospectively examined data from 17,773 type 2 diabetic patients seen from March 2, 1998, to December 13, 2010, in 3 Veterans Administration medical centers. Severity was measured using patients' inpatient and outpatient comorbidities during the last year of visits. Severity-adjusted logistic regression was used to measure the odds ratio for mortality within the study period. RESULTS: Patients' severity of illness correctly classified mortality for 89.8% of the patients (P less than 0.0001). Being younger, married, and white decreased severity adjusted risk of mortality. Exposure to the following medications increased severity adjusted risk of mortality: glyburide (odds ratio [OR] = 1.804, 95% CI from 1.518 to 2.145), glipizide (OR = 1.566, 95% CI from 1.333 to 1.839), rosiglitazone (OR = 1.805, 95% CI from 1.378 to 2.365), chlorpropamide (OR = 3.026, 95% CI from 1.096 to 8.351), insulin (OR = 2.382, 95% CI from 2.112 to 2.686). None of the other medications (metformin, acarbose, glimepiride, pioglitazone, repaglinide, troglitazone, or dipeptidyl peptidase-4) were associated with excess mortality beyond what could be expected from the patients' severity of illness or demographic characteristics. The reported excess mortality could not be explained away by use of other concurrent, nondiabetic classes of medications. CONCLUSION: Our findings suggest chlorpropamide, glipizide, glyburide, insulin, and rosiglitazone increased severity-adjusted mortality in veterans with type 2 diabetes. A decision aid that could optimize selection of hypoglycemic medications based on patients' comorbidities might increase patients' survival.

Trajectory of illness for patients with congestive heart failure.

BACKGROUND AND OBJECTIVE: This study describes progression to death for patients with congestive heart failure (CHF). METHODS: We used SAS procedure Proc Traj to fit a semiparametric model to longitudinal data on prognosis of patients with CHF in the 12 months prior to death. Data were collected on 744 patients with CHF in 2010 at Bay Pines VA Healthcare System; 386 subjects had sufficient data points (minimum of five encounters) to trace their risk in 12 months prior to death. The prognosis of the patient was calculated using the comorbidities of the patient. RESULTS: Unexpected death occurred in 20.5% of patients; all remaining patients had a gradual progression toward death. For 13.3% of patients, progression toward death started 12 months prior to death. For 29.9% of patients, increased risk started at 6 months prior to death. For 36.3% of patients, it started 3 months prior to death. One month prior to death, 79.5% of the patients had a more than 97% chance of mortality. It may be possible to use progression toward death over 3 consecutive months as a predictor of need for hospice consultation. CONCLUSIONS: Five typical illness trajectories have been described for patients with progressive heart failure. The needs of patients and their caregivers are likely to vary according to the trajectory patients are following. Contrary to reports in the literature about unexpected death in patients with CHF, the majority of decedents in our study had a predictable and gradual progression toward death. Recognizing these trajectories may help clinicians implement an appropriate plan to meet the needs of patients and their caregivers.