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Background: End-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age., Methods: We conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (<40, 40-49, 50-59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high-intensity care at the EOL., Results: Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40-49, 50-59, and ≥60, respectively; p-for-trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p-for-trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p-for-trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p-for-trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p-for-trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p-for-trend <0.001) in the last 30 days of life, and in-hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p-for-trend <0.001)., Conclusions: We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education., (© 2024 The American Geriatrics Society.)

Objective: Pragmatic trials often implement an intervention across a population of patients but require information unavailable at the population level that must be reported by a subset of patients. In this pragmatic clinical trial, we compared characteristics of seriously ill patients with those who completed a survey evaluating advance care planning across 3 academic health systems., Methods: A deliberate process including health system and external stakeholders and patients was used to design materials for and the approach to seriously ill patients. We developed a survey and conducted a multistep process to identify seriously ill primary care patients. We evaluated the relationships of age, gender, race and ethnicity, and vulnerability using the social vulnerability index in this population, and explored the representativeness of survey respondents compared with the underlying seriously ill population in terms of age, race and ethnicity, and vulnerability measured., Results: About 5% (8707 patients) of the primary care population was classified as seriously ill, 5351 were mailed a survey and 1100 provided survey responses. Hispanic and Black patients were younger than White patients, and Black and Hispanic patients were more vulnerable than White and Asian patients and patients of other races. Representativeness was high across age and race and ethnicity, although White and Hispanic patients were more likely to respond than Black and Asian patients and patients of other races. Vulnerability in the surveyed sample was nearly identical to the population., Conclusions: A tailored survey and recruitment strategy yielded a representative sample of seriously ill, largely older, primary care respondents in the context of a pragmatic clinical trial., Competing Interests: Conflict of Interest: None.

Objectives: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research., Design: Integrative review., Setting and Participants: Not applicable., Methods: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization., Results: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified., Conclusions and Implications: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Physician Orders for Life Sustaining Treatment (POLST) document instructions for intensity of care based upon patient care preferences. POLST forms generally reflect patients' wishes and dictate subsequent medical care, but it is not known how POLST use and content among nursing home residents is associated with inpatient utilization across a large population., Objective: Evaluate the relationship between POLST use and content with hospital utilization among nursing home residents in California., Design: Retrospective cohort study using the Minimum Data Set linked to California Section S (POLST documentation), the Medicare Beneficiary Summary File, and Medicare line item claims., Patients: California nursing home residents with Medicare fee-for-service insurance, 2011-2016., Main Measures: Hospitalization, days in the hospital, and days in the intensive care unit (ICU) after adjustment for resident and nursing home characteristics., Key Results: The 1,112,834 residents had a completed and signed (valid) POLST containing orders for CPR with Full treatment 29.6% of resident-time (in person-years) and a DNR order with Selective treatment or Comfort care 27.1% of resident-time. Unsigned POLSTs accounted for 11.3% of resident-time. Residents experienced 14 hospitalizations and a mean of 120 hospital days and 37 ICU days per 100 person-years. Residents with a POLST indicating CPR Full treatment had utilization nearly identical to residents without a POLST. A gradient of decreased utilization was related to lower intensity of care orders. Compared to residents without a POLST, residents with a POLST indicating DNR Comfort care spent 56 fewer days in the hospital and 22 fewer days in the ICU per 100 person-years. Unsigned POLST had a weaker and less consistent relationship with hospital utilization., Conclusions: Among California NH residents, there is a direct relationship between intensity of care preferences in POLST and hospital utilization. These findings emphasize the importance of a valid POLST capturing informed preferences for nursing home residents., (© 2023. The Author(s).)

Background: Physician Orders for Life-Sustaining Treatment (POLST) are commonly used for nursing home (NH) residents. Treatment orders differ across race and ethnicity, presumably related to cultural and socioeconomic variation and levels of access to care and trust. Because national efforts focus on addressing the underpinnings of racial and ethnic differences in treatment (i.e., access to care and trust), we describe POLST use and content by race and ethnicity., Methods: California requires NHs to document POLST completion and content in the Minimum Data Set. We describe POLST completion and content for all California NH residents from 2011 to 2016 (N = 1,120,376). Adjusting for resident characteristics, we compared changes in completion rate and differences by race and ethnicity in POLST content-orders for cardiopulmonary resuscitation (CPR), do not resuscitate (DNR), CPR with full treatment, DNR with selective treatment or comfort orders, and if unsigned., Results: POLST completion increased across all racial and ethnic groups from 2011 to 2016; by 2016, NH residents had a POLST two-thirds or more of the time. In 2011, Black residents had a POLST with a CPR order 30.4% of the time, Hispanic residents 25.6%, and White residents 19.7%. By 2016, this grew to 42.5%, 38.2%, and 28.1%, respectively, with Black and Hispanic residents demonstrating larger increases than White residents (p < 0.001). Increases over time in POLST with CPR and full treatment were greater for Black and Hispanic residents compared to White residents. The increase in POLST with DNR and DNR with Selective treatment and Comfort orders was greater for White compared to Black patients (p < 0.001). Unsigned POLST with CPR and DNR orders decreased across all racial and ethnic groups., Conclusions: Racial and ethnic differences in POLST intensity of care orders increased between 2011 and 2016 suggesting that efforts to mitigate factors underlying differences were ineffective. Studies of newer POLST data are imperative., (© 2023 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

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.

Background/problem: Advance care planning (ACP) pragmatic trials are needed., Proposed Solution: We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD + PREPAREforYourCare.org; (Arm 3) AD + PREPARE + lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data., Outcomes/methods: We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts., Key Message/results: Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n = 2243) received navigator outreach., Lessons Learned: Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts., (Copyright © 2023. Published by Elsevier Inc.)

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., (© 2023. The Author(s).)

Background: Physician Orders for Life-Sustaining Treatment (POLST) facilitates documentation and transition of patients' life-sustaining treatment orders across care settings. Little is known about patient and facility factors related to care preferences within POLST across a large, diverse nursing home population. We describe the orders within POLST among all nursing home (NH) residents in California from 2011 to 2016., Methods: California requires NHs to document in the Minimum Data Set whether residents complete a POLST and orders within POLST. Using a serial cross-sectional design for each year, we describe POLST completion and orders for all California NH residents from 2011 to 2016 (N = 1,112,668). We used logistic mixed-effects regression models to estimate POLST completion and resuscitation orders to understand the relationship with resident and facility characteristics, including Centers for Medicare and Medicaid Services (CMS) Nursing Home Compare overall five-star quality rating., Results: POLST completion significantly increased from 2011 to 2016 with most residents having a POLST in 2016 (short-stay:68%; long-stay:81%). Among those with a POLST in 2016, 54% of long-stay and 41% of short-stay residents had a DNR order. Among residents with DNR, >90% had orders for limited medical interventions or comfort measures. Few residents (<6%) had a POLST with contradictory orders. In regression analyses, POLST completion was greater among residents with more functional dependence, but was lower among those with more cognitive impairment. Greater functional and cognitive impairment were associated with DNR orders. Racial and ethnic minorities indicated more aggressive care preferences. Higher CMS five-star facility quality rating was associated with greater POLST completion., Conclusions: Six years after a state mandate to document POLST completion in NHs, most California NH residents have a POLST, and about half of long-stay residents have orders to limit life-sustaining treatment. Future work should focus on determining the quality of care preference decisions documented in POLST., (© 2022 The American Geriatrics Society.)

Importance: The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis., Objective: To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers., Design, Setting, and Participants: For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory., Main Outcomes and Measures: Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation., Results: The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making., Conclusions and Relevance: This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.

Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate real-world scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians. Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms. Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites.

Background: Physician Orders for Life-Sustaining Treatment (POLST) can help ensure continuity of do-not-resuscitate (DNR) decisions and other care preferences after discharge from the hospital. Objective: We aimed to improve POLST completion rates for patients with DNR orders who were being discharged to a nursing home (NH) after an acute hospitalization at our institution. Design: We implemented an interprofessional quality improvement intervention involving education, communication skills, and nursing and case manager cues regarding POLST use. The intervention was later augmented with performance feedback and financial incentives for resident physicians who completed a POLST at NH transfer. Measure: Whether patients with DNR orders at hospital discharge have a POLST at NH transfer. Results: The intervention resulted in increased POLST use for patients with DNR orders discharged to NH: baseline 25/65 (38%), intervention 36/71 (51%), and augmented intervention 44/63 (70%) ( p  < 0.01). Conclusions: An interdisciplinary intervention can increase POLST use for patients with DNR orders transitioning to NH. Multiple components, including financial incentives and performance feedback, may be needed to effect statistically significant change.

Background/objectives: Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end-of-life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program., Design: Observational, retrospective cohort., Setting: Urban, academic medical center., Participants: A total of 322 persons enrolled in dementia care management after July 1, 2012, who died before July 1, 2016., Intervention: Dementia care comanagement model using nurse practitioners partnered with primary care providers and community organizations to provide comprehensive dementia care, including advance care planning., Measurements: Advance care preferences, use of Physician Orders for Life Sustaining Treatment (POLST), hospice enrollment, and hospitalizations and emergency department (ED) visits in the last 6 months of life obtained from electronic health record data., Results: Nearly all decedents (99.7%, N = 321) had a goals-of-care conversation documented (median = 3 conversations; interquartile range = 2-4 conversations), and 64% had advance care preferences recorded. Among those with recorded preferences, 88% indicated do not resuscitate, 48% limited medical interventions, and 35% chose comfort-focused care. Most patients (89%) specified limited artificial nutrition, including withholding feeding tubes. Over half (54%) had no hospitalizations or ED visits in the last 6 months of life, and intensive care unit stays were rare (5% of decedents). Overall, 69% died on hospice. Decedents who had completed a POLST were more likely to die in hospice care (74% vs 62%; P = .03) and die at home (70% vs 59%; P = .04)., Conclusions: Enrollees in a comprehensive dementia care comanagement program had high engagement in advance care planning, high rates of hospice use, and low acute care utilization near the end of life. Wider implementation of such programs may improve end-of-life care for persons with dementia. J Am Geriatr Soc 67:443-448, 2019., (© 2019 The American Geriatrics Society.)

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.

Background: Physician Orders for Life-Sustaining Treatment (POLST) is a tool that facilitates the elicitation and continuity of life-sustaining care preferences. POLST was implemented in California in 2009, but how well it disseminated across a large, racially diverse population is not known and has implications for end-of-life care., Objective: To evaluate the use of POLST among California nursing home residents, including variation by resident characteristics and by nursing home facility., Design: Observational study using California Minimum Data Set Section S., Participants: A total of 296,276 people with a stay in 1,220 California nursing homes in 2011., Main Measures: The proportion of residents with a completed POLST (containing a resuscitation status order and resident/proxy and physician signatures) and relationship to resident characteristics; change in POLST use during 2011; and POLST completion and unsigned forms within nursing homes., Key Results: During 2011, POLST completion increased from 33 to 49 % of California nursing home residents. Adjusting for age and gender using a mixed-effects logistic model, long-stay residents were more likely than short-stay residents to have a completed POLST [OR = 2.36 (95 % CI 2.30, 2.42)]; severely cognitively impaired residents were less likely than unimpaired to have a completed POLST [OR = 0.89 (95 % CI 0.87, 0.92)]; and there was little difference by functional status. There was no difference in POLST completion among White non-Hispanic, Black, and Hispanic residents. Variation in POLST completion among nursing homes far exceeded that attributable to resident characteristics with 40 % of facilities having ≥80 % of long-stay residents with a completed POLST, while 20 % of facilities had ≤10 % of long-stay residents with a completed POLST. Thirteen percent of nursing home residents had a POLST containing a resuscitation preference but lacked a signature, rendering the POLST invalid., Conclusions: Statewide nursing home data show broad uptake of POLST in California without racial disparity. However, variation in POLST completion among nursing homes identifies potential areas for quality improvement., Competing Interests: All of the authors declare that they have no conflicts of interest with regard to this manuscript.

Background: Many patients considered for transplantation die before receiving the organ, underlining the importance of providing high-quality symptomatic relief and communication for all transplant patients., Methods: To study how consideration of transplantation affects the end-of-life care received by patients, care was evaluated by abstracting medical records for 496 adults who died in one high-volume transplant medical center between April 2005 and April 2006. Sixteen quality indicators from the Assessing Care of Vulnerable Elders set that focused on communication and symptom management were measured to calculate an overall patient-level quality score. We evaluated the predictors of quality of end-of-life care, with the main independent variable being whether the patient was being considered for transplantation. Restricting to patients who died an "expected death," we also evaluated the end-of-life treatments received., Results: Twenty-five percent of decedent patients were considered for transplantation. In adjusted models, patients considered for transplantation received lower-quality end-of-life care, had longer hospital stays before death, and were more likely to receive aggressive life-sustaining treatments., Conclusions: Care models should incorporate an emphasis on symptom relief and communication along with transplant preparation.

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.

Objectives: To measure end-of-life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture-based attitudes and extent of ACP., Design: Cross-sectional interview., Setting: Twenty-two senior centers in greater Los Angeles., Participants: One hundred forty-seven Latinos aged 60 and older., Measurements: EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family-centered decision-making, trust in healthcare providers, and health and sociodemographic characteristics., Results: If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family-centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P-values <.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1-2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1-2.3) were independently associated with having an advance directive., Conclusions: The majority of older Latinos studied preferred less-aggressive, comfort-focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high-intensity care inconsistent with their preferences.

Context: Deficits in advance care planning leave many patients and their physicians unprepared for decisions about end-of-life care. Even though the prognosis has improved for many persons with human immunodeficiency virus (HIV) infection, a need for planning remains., Objective: To evaluate prevalence of end-of-life discussions, use of advance directives, and preferences concerning end-of-life care and their relationship with patient demographics, clinical status, psychosocial variables, and practitioner characteristics among HIV-infected persons., Design, Setting, and Patients: Cross-sectional survey of a US probability sample of 2864, which represents 231 400 adults receiving care for HIV, conducted from January 1996 to April 1997., Main Outcome Measures: Communication with physician regarding end-of-life issues, completion of an advance directive, preference for aggressiveness of care, and willingness to tolerate future permanent adverse health states., Results: A total of 1432 patients (50%) discussed some aspect of end-of-life care with their practitioner and 1088 (38%) completed an advance directive. Patients were more likely to complete an advance directive after a physician discussion (odds ratio [OR], 5.82; 95% confidence interval [CI], 4.50-7.52). Practitioners discussed end-of-life care less with blacks (OR, 0.57; 95% CI, 0.39-0.83) and Latinos (OR, 0.74; 95% CI, 0.55-0.98) than with whites. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the household (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitioners about end-of-life issues. Patients infected with HIV via injection drug use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communicated the least with physicians about end-of-life issues. Less denial, greater trust in one's practitioner, and longer patient-practitioner relationship were associated with more advance care planning., Conclusions: Half of all persons infected with HIV are at risk of making end-of-life decisions without prior discussions with their health care practitioners. Blacks, Latinos, intravenous drug users, and less educated individuals need advance care planning interventions in clinical HIV programs.

Background: Physicians are frequently unaware of patient preferences for end-of-life care. Identifying and exploring barriers to patient-physician communication about end-of-life issues may help guide physicians and their patients toward more effective discussions., Objective: To examine correlates and associated outcomes of patient communication and patient preferences for communication with physicians about cardiopulmonary resuscitation and prolonged mechanical ventilation., Design: Prospective cohort study., Setting: Five tertiary care hospitals., Patients: 1832 (85%) of 2162 eligible patients completed interviews., Measurements: Surveys of patient characteristics and preferences for end-of-life care; perceptions of prognosis, decision making, and quality of life; and patient preferences for communication with physicians about end-of-life decisions., Results: Fewer than one fourth (23%) of seriously ill patients had discussed preferences for cardiopulmonary resuscitation with their physicians. Of patients who had not discussed their preferences for resuscitation, 58% were not interested in doing so. Of patients who had not discussed and did not want to discuss their preferences, 25% did not want resuscitation. In multivariable analyses, patient factors independently associated with not wanting to discuss preferences for cardiopulmonary resuscitation included being of an ethnicity other than black (adjusted odds ratio [OR], 1.48 [95% CI, 1.10 to 1.99), not having an advance directive (OR, 1.35 [CI, 1.04 to 1.76]), estimating an excellent prognosis (OR, 1.72 [CI, 1.32 to 2.59]), reporting fair to excellent quality of life (OR, 1.36 [CI, 1.05 to 1.76]), and not desiring active involvement in medical decisions (OR, 1.33 [CI, 1.07 to 1.65]). Factors independently associated with wanting to discuss preferences for resuscitation but not doing so included being black (OR, 1.53 [CI, 1.11 to 2.11]) and being younger (OR, 1.14 per 10-year interval younger [CI, 1.04 to 1.25])., Conclusions: Among seriously ill hospitalized adults, communication about preferences for cardiopulmonary resuscitation is uncommon. A majority of patients who have not discussed preferences for end-of-life care do not want to do so. For patients who do not want to discuss their preferences, as well as patients with an unmet need for such discussions, failure to discuss preferences for cardiopulmonary resuscitation and mechanical ventilation may result in unwanted interventions.

Background and aimsThere are guidelines for the medical management of cirrhosis and associated quality indicators (QIs), but QIs focusing on standards for palliative aspects of care are needed.MethodsWe convened a 9-member, multidisciplinary expert panel and used RAND/UCLA modified Delphi methods to develop palliative care quality indicators for patients with cirrhosis. Experts were provided with a report based on a systematic review of the literature that contained evidence concerning the proposed candidate QIs. Panelists rated QIs prior to a planned meeting using a standard 9-point RAND appropriateness scale. These ratings guided discussion during a day-long phone conference meeting, and final ratings were then provided by panel members. Final QI scores were computed and QIs with a final median score of greater than or equal to 7, and no disagreement was included in the final set.ResultsAmong 28 candidate QIs, the panel rated 19 as valid measures of quality care. These 19 quality indicators cover care related to information and care planning (13) and supportive care (6).ConclusionsThese QIs are evidence-based process measures of care that may be useful to improve the quality of palliative care. Research is needed to better understand the quality of palliative care provided to patients with cirrhosis.