Consequences of a Health System Not Knowing Which Patients Are Deceased.

This quality improvement study in a California health system investigates the proportion of active patients who were deceased but not noted as such in the electronic health record (EHR), as well as encounters after death.

Association between physicians' geriatric training and patterns of end-of-life care delivered to persons with dementia.

BACKGROUND: Geriatric training is designed to prepare physicians to meet the complex needs of older adults, including persons with dementia at the end-of-life (EOL) stage. We sought to compare patterns of EOL care delivered to persons with dementia between physicians with versus without geriatric training. METHODS: We conducted a cross-sectional study of a 20% random sample of fee-for-service Medicare beneficiaries with dementia who died in 2016-2018 (n = 99,631). We attributed beneficiaries to a physician who had the largest number of primary care visits during the last 6 months of life and determined whether the physician was trained in geriatrics. Our outcome measures included: (i) advance care planning (ACP) and palliative care (e.g., ACP, hospice enrollment in the last 90 days of life), and (ii) high-intensity EOL care (e.g., emergency department visits or hospital admissions in the last 30 days of life). RESULTS: Beneficiaries with dementia under the care of physicians with geriatric training had a higher proportion of ACP (adjusted proportion, 15.8% vs. 13.0%; p < 0.001 after accounting for multiple comparisons), palliative care counseling (22.4% vs. 20.9%; p = 0.01), and hospice enrollment (63.7% vs. 60.6%; p < 0.001). Geriatric training was also associated with a lower proportion of emergency department visits (55.1% vs. 59.1%; p < 0.001), hospital admissions (48.8% vs. 52.3%; p < 0.001), ICU admissions (24.9% vs. 27.4%; p < 0.001), use of mechanical ventilation (11.2% vs. 13.0%; p < 0.001), and use of cardiopulmonary resuscitation (2.1% vs. 2.4%; p = 0.03) in the last 30 days of life. There was no evidence that the placement of feeding tubes differed between the two groups. CONCLUSIONS: Physicians' geriatric training was associated with the receipt of more ACP and palliative care and less intensive EOL care among persons with dementia. Provision of geriatric training for physicians may have the potential to improve the quality of EOL care delivered to persons with dementia.

Timing and setting of billed advance care planning among Medicare decedents in 2017-2019.

BACKGROUND: The Centers for Medicare & Medicaid Services (CMS) began to reimburse clinicians for advance care planning (ACP) discussions, effective January 1, 2016. We sought to characterize the timing and setting of first-billed ACP discussions among Medicare decedents to inform future research on ACP billing codes. METHODS: Using a random 20% sample of Medicare fee-for-service beneficiaries aged 66 years and older who died in 2017-2019, we described the timing (relative to death) and setting (inpatient, nursing home, office, or outpatient with or without Medicare Annual Wellness Visit [AWV], home or community, or elsewhere) of the first-billed ACP discussion for each beneficiary. RESULTS: Our study included 695,985 decedents (mean [SD] years of age, 83.2 [8.8]; 54.2% female); the proportion of decedents who had at least one billed ACP discussion increased from 9.7% in 2017 to 21.9% in 2019. We found that the proportion of first-billed ACP discussions held during the last month of life decreased from 37.0% in 2017 to 26.2% in 2019, while the proportion of first-billed ACP discussions held more than 12 months before death increased from 11.1% in 2017 to 35.2% in 2019. We also found that the proportion of first-billed ACP discussions held in the office or outpatient setting along with AWV increased over time (from 10.7% in 2017 to 14.1% in 2019), while the proportion held in the inpatient setting decreased (from 41.7% in 2017 to 38.0% in 2019). CONCLUSIONS: We found that with increasing exposure to the CMS policy change, uptake of the ACP billing code has increased; first-billed ACP discussions are occurring sooner before the end-of-life stage and are more likely to occur with AWV. Future studies should evaluate changes in ACP practice patterns, rather than only an increasing uptake in ACP billing codes, following the policy implementation.

Support for Use of Consumer Assessment of Healthcare Providers and Systems Communication Items Among Seriously Ill Patients.

Background: High-quality doctor-patient communication is essential for patients with serious illnesses. The reliability and validity of Consumer Assessment of Healthcare Providers and Systems (CAHPS®) communication items among these patients are unknown. Methods: Five CAHPS communication items, a 4-item Advance Care Planning (ACP) engagement scale, 5-item confidence in others' knowledge of ACP medical wishes scale, and a question about confidence in filling out ACP-related medical forms were administered to 1100 patients (20% response rate) with serious illness receiving primary care at three University of California Health Systems. Results: Average age was 69 (range 22-102); 52% male, 18% Hispanic, 9% Asian, and 7% Black; 24% had high school or less education. Eigenvalues and internal consistency reliability (0.88) supported a 5-item communication scale. Item characteristic curves showed a monotonic relationship of response options with the communication score. Item thresholds indicated that most patients reported positive patient experiences (i.e., items were negatively skewed). Item slopes ranging from 2.52 to 5.10 confirmed that all items were strongly related to the communication score. Information (reliability) of the communication scale was higher for assessing patients with negative experiences of care than for the positive end of the spectrum. Communication was positively correlated with confidence in other's knowledge of ACP medical wishes (r = 0.32, p < 0.0001), ACP engagement (r = 0.14, p < 0.0001), and confidence in filling out ACP-related medical forms (r = 0.09, p = 0.0022). Conclusions: These findings support the use of CAHPS survey items to assess communication among patients with serious illnesses in primary care. Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04012749.

Telephone Outreach Enhances Recruitment of Underrepresented Seriously Ill Patients for an Advance Care Planning Pragmatic Trial.

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

Patient-Reported Quality Measures for Palliative Care: The Time is now.

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

A pragmatic parallel arm randomized-controlled trial of a multi-pronged electronic health record-based clinical decision support tool protocol to reduce low-value antipsychotic prescriptions among older adults with Alzheimer's and related dementias.

Among patients with Alzheimer's disease and its related dementias (ADRD) with behavioral disturbances, antipsychotic prescriptions have limited efficacy and increase the risk of death. Yet, physicians continue to routinely prescribe low-value antipsychotic medications for behavioral disturbances among patients with ADRD. We designed a pragmatic randomized-controlled trial to measure the impact of a behavioral economic electronic health record (EHR) clinical decision support (CDS) intervention to reduce physician prescriptions of new antipsychotic medications among patients with ADRD. Utilizing a pragmatic parallel arm randomized-controlled trial design, the study will randomize eligible physicians from a large academic health system to either receive a EHR CDS intervention or not (control) when they prescribe a new antipsychotic medication during visits with patients with ADRD. The intervention will include three components: 1) alerts prescribers that antipsychotic prescriptions increase mortality risk (motivating physicians' intrinsic desire for non-malfeasance); 2) offers non-pharmacological behavioral resources for caregivers; 3) auto-defaults the prescription to contain the lowest dose and number of pill-days (n = 30) without refills if the prescriber does not cancel the order (appealing to default bias). Over 1 year, we will compare the cumulative total of new antipsychotic pill-days prescribed (primary outcome) by physicians in the intervention group versus in the control group. The study protocol meets international SPIRIT guidelines. Behavioral economics, or the study of human behavior as a function of more than rational incentives, considering a whole host of cognitive and social psychological preferences, tendencies, and biases, is increasingly recognized as an important conceptual framework to improve physician behavior. This pragmatic trial is among the first to combine two distinct behavioral economic principles, a desire for non-malfeasance and default bias, to improve physician prescribing patterns for patients with ADRD. We anticipate this trial will substantially advance understanding of how behavioral-economic informed EHR CDS tools can potentially reduce harmful, low-value care among patients with ADRD.

A Framework to Guide Economic Analysis of Advance Care Planning.

BACKGROUND: Advance care planning (ACP) is fundamental to guiding medical care at the end of life. Understanding the economic impact of ACP is critical to implementation, but most economic evaluations of ACP focus on only a few actors, such as hospitals. OBJECTIVE: To develop a framework for understanding and quantifying the economic effects of ACP, particularly its distributional consequences, for use in economic evaluations. DESIGN: Literature review of economic analyses of ACP and related costs to estimate magnitude and direction of costs and benefits for each actor and how data on these costs and benefits could be obtained or estimated. RESULTS: ACP can lead to more efficient allocation of resources by reducing low-value care and reallocating resources to high-value care, and can increase welfare by aligning care to patient preferences. This economic framework considers the costs and benefits of ACP that accrue to or are borne by six actors: the patient, the patient's family and caregivers, healthcare providers, acute care settings, subacute and home care settings, and payers. Program implementation costs and nonhealthcare costs, such as time costs borne by patients and caregivers, are included. Findings suggest that out-of-pocket costs for patients and families will likely change if subacute or home care is substituted for acute care, and subacute care utilization is likely to increase while primary healthcare providers and acute care settings may experience heterogeneous effects. CONCLUSIONS: A comprehensive economic evaluation of ACP should consider how costs and benefits accrue to different actors.

Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life.

BACKGROUND & AIMS: There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. METHODS: We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. RESULTS: Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. CONCLUSIONS: Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population.

Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review.

IMPORTANCE: Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes. OBJECTIVE: To inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system. EVIDENCE REVIEW: Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015). RESULTS: Randomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p < 0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10). CONCLUSIONS: Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

When comorbidity, aging, and complexity of primary care meet: development and validation of the Geriatric CompleXity of Care Index.

OBJECTIVES: To develop and validate the Geriatric CompleXity of Care Index (GXI), a comorbidity index of medical, geriatric, and psychosocial conditions that addresses disease severity and intensity of ambulatory care for older adults with chronic conditions. DESIGN: DEVELOPMENT phase: variable selection and rating by clinician panel. VALIDATION phase: medical record review and secondary data analysis. SETTING: Assessing the Care of Vulnerable Elders-2 study. PARTICIPANTS: Six hundred forty-four older (≥75) individuals receiving ambulatory care. DEVELOPMENT: 32 conditions categorized according to severity, resulting in 117 GXI variables. A panel of clinicians rated each GXI variable with respect to the added difficulty of providing primary care for an individual with that condition. VALIDATION: Modified versions of previously validated comorbidity measures (simple count, Charlson, Medicare Hierarchical Condition Category), longitudinal clinical outcomes (functional decline, survival), intensity of ambulatory care (primary, specialty care visits, polypharmacy, number of eligible quality indicators (NQI)) over 1 year of care. RESULTS: The most-morbid individuals (according to quintiles of GXI) had more visits (7.0 vs 3.7 primary care, 6.2 vs 2.4 specialist), polypharmacy (14.3% vs 0% had ≥14 medications), and greater NQI (33 vs 25) than the least-morbid individuals. Of the four comorbidity measures, the GXI was the strongest predictor of primary care visits, polypharmacy, and NQI (P < .001, controlling for age, sex, function-based vulnerability). CONCLUSION: Older adults with complex care needs, as measured by the GXI, have healthcare needs above what previously employed comorbidity measures captured. Healthcare systems could use the GXI to identify the most complex elderly adults and appropriately reimburse primary providers caring for older adults with the most complex care needs for providing additional visits and coordination of care.

Documentation of advance care planning for community-dwelling elders.

BACKGROUND: Advance planning for end-of-life care has gained acceptance, but actual end-of-life care is often incongruent with patients' previously stated goals. We assessed the flow of advance care planning information from patients to medical records in a community sample of older adults to better understand why advance care planning is not more successful. METHODS: Our study used structured interview and medical record data from community-dwelling older patients in two previous studies: Assessing Care of Vulnerable Elders (ACOVE)-1 (245 patients age > or = 65 years and screened for high risk of death/functional decline in 1998-1999) and ACOVE-2 (566 patients age > or = 75 who screened positive for falls/mobility disorders, incontinence, and/or dementia in 2002-2003). We compared interview data on patients' preferences, advance directives, and surrogate decision-makers with findings from the medical record. RESULTS: In ACOVE-1, 38% of surveyed patients had thought about limiting the aggressiveness of medical care; 24% of surveyed patients stated that they had spoken to their doctor about this. The vast majority of patients (88%-93%) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. Regardless of patients' specific preferences, 15%-22% of patients had preference information in their medical record. Among patients who reported that they had completed an advance directive and had given it to their health-care provider, 15% (ACOVE-1) and 47% (ACOVE-2) had advance directive information in the medical record. Among patients who had not completed an advance directive but had given surrogate decision-maker information to their provider, 0% (ACOVE-1) and 16% (ACOVE-2) had documentation of a surrogate decision-maker in the medical record. CONCLUSIONS: Community-dwelling elders' preferences for end-of-life care are not consistent with documentation in their medical records. Electronic health records and standardized data collection for end-of-life care could begin to ameliorate this problem.

Assessment of implementation of an order protocol for end-of-life symptom management.

OBJECTIVES: Designing comfort care plans to treat symptoms at the end-of-life in the hospital is challenging. We evaluated the implementation of an inpatient end-of-life symptom management order (ESMO) protocol that guides the use of opiate medications and other modalities to provide palliation. METHODS: Physicians and nurses caring for patients using the ESMO protocol were surveyed about care provided and their experiences. RESULTS: Over 342 days, 127 patients (2.6 per week) were treated using the ESMO protocol and we surveyed a nurse and/or physician for 105 (83%) patients. Most patients were comatose, obtunded/stuperous, or disoriented when the ESMO protocol was initiated and most had a life expectancy of less than 1 day. One fourth of physicians felt that the protocol was instituted too late, principally citing family unwillingness to reorient toward comfort care. Providers reported that opiates were titrated appropriately, although a minority revealed discomfort with end-of-life opiate use. Nearly all clinicians found the ESMO protocol to be valuable. CONCLUSIONS: A standardized protocol is a useful, but not fully sufficient, step toward improving care for dying hospitalized patients.

Assessment of content completeness and accuracy of prostate cancer patient education materials.

Providing care for men with prostate cancer is particularly challenging because of the controversy surrounding screening and the paucity of randomized control trials comparing treatments. Therefore, a patient's personal preferences, and adequate patient education become central to well-informed medical decision-making. Acknowledging the need for high quality education materials for men with prostate cancer, we developed and pilot tested a measure to assess the completeness and accuracy of available materials. The measure rates materials on their inclusion and accuracy of the primary knowledge base a patient should acquire before deciding on prostate cancer screening or treatment, to prepare for staging, and to manage treatment and disease-related symptoms. We found that many available prostate cancer education materials are factually accurate, but omit information that is important and relevant to patients with prostate cancer.