Search

Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an aging population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective, but current national data collection efforts are sporadic, and data are often collected only for patients who receive care through certain funding programs or provider organizations or in selected sites of care. Therefore, governments do not know whether their citizens are receiving adequate care, whether current programs are improving care, or how their outcomes compare with those of other countries. This article describes the importance of developing national minimum data sets that can be used to assess the quality of end-of-life care that older adults receive and recommends key variables that these data sets should include. [ABSTRACT FROM AUTHOR]

Ethicists and others have expressed concerns that some patients with cancer might lack adequate decision-making capacity to give consent for research. Although this concern is plausible, it is not known what patient characteristics might be used to identify those patients who are at risk and who therefore should undergo a formal assessment of decision-making capacity. Forty-five patients with cancer were presented with a description of a randomized controlled trial, accompanied by an Institutional Review Board-approved consent form. Two raters who were blind to all patient characteristics assessed decision-making capacity using the MacArthur Competency Assessment Tool for Clinical Research. These scores were summarized in overall capacity judgments using criteria established by a panel of experts. Subjects also completed a symptom rating scale and a battery of neuropsychiatric tests. No relationship was observed between symptom severity and any domain of decision-making capacity (understanding, appreciation, reasoning, ability to express a choice) or summary judgments. However, several other patient characteristics, including age, education, and selected neuropsychiatric test results, were found to be strongly associated with capacity scores. These data suggest that several patient characteristics, such as age, education, and tests of cognitive functions, may help investigators to identify patients with impaired capacity to give consent for research. [ABSTRACT FROM AUTHOR]

The goals of this study were to determine whether post-death surveys of family members cause more distress if they are administered closer in time to the patient's death, and whether family members are less likely to respond to earlier surveys. Caregivers of hospice patients were randomly assigned to receive a survey at 2 weeks (n = 107) or at 6 weeks (n = 100) after the patient's death. Response rates and self-reported distress experienced in completing the survey were recorded. There were no differences in self-ratings of distress between 2- and 6-week surveys, and response rates were identical (2-week: 54%; 6-week: 54%). Distress and response rate do not appear to be influenced by the timing of data collection, even when surveys are administered very soon after death. [ABSTRACT FROM AUTHOR]

Delirium is a common and distressing symptom that constitutes a significant challenge for end-of-life care. However, reliable techniques are available for the diagnosis of delirium, and effective therapies exist as well. This consensus paper uses a case-based format that begins with an overview of the definition and presentation of delirium. Next, strategies for diagnosis are suggested, with attention to the unique challenges that clinicians face in pursuing a diagnostic work-up for patients near the end of life. The paper concludes with a review of therapeutic options. [ABSTRACT FROM AUTHOR]

Objectives:  To compare the ability of different electronic health record alert types to elicit responses from users caring for cancer patients benefiting from goals of care (GOC) conversations., Methods:  A validated question asking if the user would be surprised by the patient's 6-month mortality was built as an Epic BestPractice Advisory (BPA) alert in three versions-(1) Required on Open chart (pop-up BPA), (2) Required on Close chart (navigator BPA), and (3) Optional Persistent (Storyboard BPA)-randomized using patient medical record number. Meaningful responses were defined as "Yes" or "No," rather than deferral. Data were extracted over 6 months., Results:  Alerts appeared for 685 patients during 1,786 outpatient encounters. Measuring encounters where a meaningful response was elicited, rates were highest for Required on Open (94.8% of encounters), compared with Required on Close (90.1%) and Optional Persistent (19.7%) ( p  < 0.001). Measuring individual alerts to which responses were given, they were most likely meaningful with Optional Persistent (98.3% of responses) and least likely with Required on Open (68.0%) ( p  < 0.001). Responses of "No," suggesting poor prognosis and prompting GOC, were more likely with Optional Persistent (13.6%) and Required on Open (10.3%) than with Required on Close (7.0%) ( p  = 0.028)., Conclusion:  Required alerts had response rates almost five times higher than optional alerts. Timing of alerts affects rates of meaningful responses and possibly the response itself. The alert with the most meaningful responses was also associated with the most interruptions and deferral responses. Considering tradeoffs in these metrics is important in designing clinical decision support to maximize success., Competing Interests: None declared., (Thieme. All rights reserved.)

Objective: Because the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist., Methods: Prospective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician-family relationship and patient centredness of care. Latent class analysis of the NEST's 13 items was used to identify groups with similar patterns of serious palliative care needs., Results: Among 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0-10.0, p<0.001), favourable clinician-family relationship (range 34.6%-98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0-5.0, p<0.001) and Decision-Making (median range 2.3-4.5, p<0.001) scales., Conclusions: Four novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician-family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Cancer patients' sources of distress are often unaddressed, and patient-reported distress data could be utilized to identify those with unmet and impending care needs. We explored the association between moderate/severe distress and healthcare utilization in a large sample of non-small cell lung cancer (NSCLC) and non-colorectal gastrointestinal cancer patients., Methods and Materials: Adult patients treated between July 2013 and March 2019. Data from the NCCN Distress Thermometer (DT) and the accompanying "Problem List" were extracted from the EHR. A DT score of ≥ 4 indicates "actionable distress." Statistical analysis was performed using descriptive analysis for patient characteristics, clinical outcomes, and sources of distress. Generalized linear mixed models were fit to determine the relationship between distress and healthcare utilization (hospitalization, emergency department (ED) visit, or both)., Results: The ten most frequently reported problems were from the Physical and Emotional domains of the Problem List. Distress was mostly related to physical symptoms (pain, fatigue) and emotional issues (worry, fears, sadness, nervousness). Patients with actionable distress generally reported more problems across all their visits. Actionable distress was associated with higher odds of the composite outcome measure of hospitalization or visiting the ED, within both the next 3 months (OR = 1.37; 95% CI = 1.19, 1.58; p < 0.001) and 6 months (OR = 1.19; 95% CI = 1.03, 1.37; p = 0.019)., Conclusion: Patients with significant distress had marked utilization of ED and inpatient services. DT scores are a source of untapped data in the EHR that can highlight patients in need of intervention, including palliative care and cancer support services., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

The field of palliative care (PC) has spent the past decade demonstrating that it improves outcomes for patients, clinicians, and health systems. Forward-thinking organizations preparing for a reimbursement system rooted in value have built robust inpatient PC programs and are rapidly moving toward the outpatient and community settings as well. As PC programs get larger and are increasingly tasked with leading a wide variety of diverse initiatives, population health principles can help to focus programs on high-value activities. This article, written by population health researchers and PC clinicians, seeks to provide PC teams nationally with a variety of population health strategies and tools to guide PC delivery throughout the health system and beyond.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Objectives: To determine the relative contributions of tetrahydrocannabinol (THC) and cannabidiol (CBD) to patients' self-ratings of efficacy for common palliative care symptoms. Design: This is an electronic record-based retrospective cohort study. Model development used logistic regression with bootstrapped confidence intervals (CIs), with standard errors clustered to account for multiple observations by each patient. Setting: This is a national Canadian patient portal. Participants: A total of 2,431 patients participated. Main Outcome Measures: Self-ratings of efficacy of cannabis, defined as a three-point reduction in neuropathic pain, anorexia, anxiety symptoms, depressive symptoms, insomnia, and post-traumatic flashbacks. Results: We included 26,150 observations between October 1, 2017 and November 28, 2018. Of the six symptoms, response was associated with increased THC:CBD ratio for neuropathic pain (odds ratio [OR]: 3.58; 95% CI: 1.32-9.68; p  = 0.012), insomnia (OR: 2.93; 95% CI: 1.75-4.91; p  < 0.001), and depressive symptoms (OR: 1.63; 95% CI: 1.07-2.49; p  = 0.022). Increased THC:CBD ratio was not associated with a greater response of post-traumatic stress disorder (PTSD)-related flashbacks (OR: 1.43; 95% CI: 0.60-3.41; p  = 0.415) or anorexia (OR: 1.61; 95% CI: 0.70-3.73; p  = 0.265). The response for anxiety symptoms was not significant (OR: 1.13; 95% CI: 0.77-1.64; p  = 0.53), but showed an inverted U-shaped curve, with maximal benefit at a 1:1 ratio (50% THC). Conclusions: These preliminary results offer a unique view of real-world medical cannabis use and identify several areas for future research.

The use of medical cannabis is increasing significantly throughout the United States in spite of limited and sometimes contradictory data about its effectiveness. Palliative care providers are being asked to consider cannabis as part of symptom-directed treatment regimens although many providers have limited experience recommending medical cannabis and were trained before it was commercially available. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome.

Background: Dialysis is often initiated in the hospital during episodes of acute kidney injury and critical illness. Little is known about how patients or their surrogate decision makers feel about dialysis initiation in the inpatient setting., Methods: We conducted a prospective cohort study at a large academic center in the United States. All patients who initiated dialysis during a 30-day period in 2016 were approached for enrollment. Study participants were defined as individuals who provided consent for dialysis initiation - either the patient or a surrogate decision-maker. Decisional satisfaction and the degree of shared decision-making were assessed using the decisional attitude scale and the control preferences scale, respectively. These scales were incorporated into a study questionnaire along with an exploratory structured interview., Results: A total of 31 potential participants were eligible and 21 agreed to participate in the study. Continuous renal replacement therapy was used in 14 out of 21 cases (67%) and there was 33% in-hospital mortality in the study cohort. A majority (62%) of patients were unable to participate in the consent process for dialysis initiation and had to rely on a surrogate decision-maker. The mean score for the decisional attitude scale was 4.1 (95% CI 3.8-4.3) with a score of 5 corresponding to high decisional satisfaction. Most of the decisions were classified as shared and incorporated input from clinicians as well as patients or surrogates. Although 90% of participants agreed that they had a choice in making the decision, 81% were unable to mention any alternatives to dialysis initiation., Conclusions: Dialysis initiation was associated with high decisional satisfaction and most participants felt that the decision incorporated input from patients and providers. However, inpatient dialysis initiation was commonly associated with loss of decisional capacity and reliance on a surrogate decision-maker. This finding is likely driven by critical illness. Survivors of critical illness who remain dialysis dependent may need to revisit conversations about the rationale, risks, and benefits of dialysis.

Background: Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues., Objectives: To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition., Methods: A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services., Results: Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care., Conclusion: Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

Context: Given the shortage of palliative care specialists, strategies are needed to promote primary palliative care by nonpalliative care providers. Electronic reminders are frequently used in medicine to standardize practice, but their effectiveness in encouraging goals of care discussions is not well understood., Objectives: To determine whether brief education and electronic alerts increase the frequency of goals of care discussions., Methods: All general medicine services at a large academic medical center were included. Each medicine team received brief education on rounds about goals of care communication tool. When a newly admitted patient met predefined criteria, an electronic alert that included the tool was sent to the patient's resident and attending physicians within 48 hours., Results: Of 352 admissions screened over a four-week period, 18% met one or more criteria. The combination of alerts and education increased documentation of goals of care in the medical record from 20.5% (15/73) to 44.6% (25/56) of patients (risk ratio 2.17, 95% CI 1.23-3.72). There were no significant changes in code status, noncode status limitations in care, or palliative care consultation., Conclusion: The combination of brief education and electronic goals of care alerts significantly increased documented goals of care discussions. This intervention is simple and feasible in many settings, but larger studies are needed to determine impact on patient outcomes., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: In many settings, men and women receive different care., Objectives: We sought to determine whether men and women receive different care during terminal hospitalizations., Methods: We analyzed data of 98,314 adult patients who died while hospitalized in 458 acute care hospitals in the U.S. during 2011. We examined sex-based differences in lengths of stay (LOS), resuscitation status, and intensive interventions and processes of care, adjusting for patient- and hospital-level characteristics., Results: Women represented half of the sample (48,509; 49.34%), were older than men (73.8 vs. 70.6 years, P < 0.0001), and less likely to be married (27.7% vs. 48.3%, P < 0.001). Among all patients, median LOS was four days (interquartile range 2-10); 19.1% of subjects received cardiopulmonary resuscitation; 37.6% had a do-not-resuscitate order during the admission; and 51.6% received mechanical ventilation. Compared with men, women had slightly shorter hospitalizations (adjusted LOS: -0.16 days; 95% CI -0.19, -0.12) and were more likely to have a do-not-resuscitate order (odds ratio [OR] 1.08; 95% CI 1.05, 1.11). Women remained less likely to receive care in an intensive care unit (OR 0.95; 95% CI 0.93, 0.98), cardiopulmonary resuscitation (OR 0.83; 95% CI 0.80, 0.86), mechanical ventilation (OR 0.94; 95% CI 0.91, 0.97), hemodialysis (adjusted OR 0.81; 95% CI 0.78, 0.86), or surgical procedures (OR 0.88; 95% CI 0.84, 0.93)., Conclusion: Men who die in hospitals receive more aggressive care than women. Further research should examine potential causes of this overall pattern., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Inpatient palliative care consultations have been shown to reduce acute care utilization by reducing length of stay, but less is known about their impact on subsequent costs including hospital readmissions., Objective: The study's objective was to examine the impact of inpatient palliative care consultations on 30-day hospital readmissions to a large urban academic medical center., Methods: The hospital's electronic medical record system was used to identify all live discharges between August 2013 and November 2014. After adjusting for a propensity score, readmission rates were compared between palliative care and usual care groups., Results: Of the 34,541 hospitalizations included in the study, 1430 (4.1%) involved a palliative care consult. After adjusting for the propensity score, patients seen by palliative care had a lower 30-day readmission rate-adjusted odds ratio (AOR) 0.66, 0.55-0.78; p<0.001. Adjusted rates were 10.3% (95% confidence interval [CI] 8.9%-12.0%) for palliative care and 15.0% (95% CI 14.4%-15.4%) for usual care. Among all palliative care patients, consultations that involved goals of care discussions were associated with a lower readmission rate (AOR 0.36, 0.27-0.48; p<0.001), but consultations involving symptom management were not (AOR 1.05, 0.82-1.35; p=0.684)., Conclusions: Palliative care palliative care consultations facilitate goals discussions, which in turn are associated with reduced rates of 30-day readmissions.

Context: The Centers for Medicare & Medicaid Services have elected to include a bereaved family member survey in public reporting of hospice quality data as mandated in the Affordable Care Act. However, it is not known what time point after death offers the most reliable responses., Objectives: To examine the stability of bereaved family members' survey responses when administered three, six, and nine months after hospice patient death., Methods: Bereaved family members from six geographically diverse hospices were interviewed three, six, and nine months after patient death. All respondents completed a core survey. Those whose family member died at home, in a freestanding inpatient unit, or in a nursing home also completed a site-specific module. Stability was based on top-box scoring of each item with kappa statistics, and multivariable regression models were used to assess directionality and predictors of change. To analyze the effects of grief, we assessed response stability among respondents at least one SD from the mean change in grief between three and six months., Results: We had 1532 surveys (536 three-month surveys, 529 six-month surveys, and 467 nine-month surveys) returned by 643 respondents (average age 61.7 years, 17.4% black, and 50.5% a child respondent) about hospice decedents (55.3% females, average age 78.6 years, 57.0% noncancer, and 40.0% at home). The average kappa for core items between three and nine months was 0.54 (range 0.42-0.74), 0.58 (0.41-0.69) for home-specific items, and 0.54 (0.39-0.63) for nursing home. Even among individuals demonstrating large grief changes, core items demonstrated moderate to high stability over time., Conclusion: Bereaved family member responses are stable between three and nine months after the death of the patient., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To compare residents of assisted living facilities receiving hospice with people receiving hospice care at home., Design: Electronic health record-based retrospective cohort study., Setting: Nonprofit hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness network., Participants: Individuals admitted to hospice between January 1, 2008, and May 15, 2012 (N = 85,581; 7,451 (8.7%) assisted living facility, 78,130 (91.3%) home)., Measurements: Hospice length of stay, use of opioids for pain, and site of death., Results: The assisted living population was more likely than the home hospice population to have a diagnosis of dementia (23.5% vs 4.7%; odds ratio (OR) = 13.3, 95% confidence interval (CI) = 12.3-14.4; P < .001) and enroll in hospice closer to death (median length of stay 24 vs 29 days). Assisted living residents were less likely to receive opioids for pain (18.1% vs 39.7%; OR = 0.33, 95% CI = 0.29-0.39, P < .001) and less likely to die in an inpatient hospice unit (9.3% vs 16.1%; OR = 0.53, 95% CI = 0.49-0.58, P < .001) or a hospital (1.3% vs 7.6%; OR = 0.16, 95% CI = 0.13-0.19, P < .001)., Conclusion: Three are several differences between residents of assisted living receiving hospice care and individuals living at home receiving hospice care. A better understanding of these differences could allow hospices to develop guidelines for better coordination of end-of-life care for the assisted living population., (© 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.)

Context: Measuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists., Objectives: The Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care., Methods: The MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations., Results: We narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument., Conclusion: This consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S., Settings: Further development will assemble implementation tools for quality measurement and benchmarking., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Although much is known about solid tumor patients who use hospice, the hematologic malignancies hospice population is inadequately described., Objectives: To compare the characteristics and outcomes of hospice patients with hematologic malignancies to those with solid tumors., Methods: We extracted electronic patient data (2008-2012) from a large hospice network (Coalition of Hospices Organized to Investigate Comparative Effectiveness) and used bivariate analyses to describe between-group differences., Results: In total, 48,147 patients with cancer were admitted during the study period; 3518 (7.3%) had a hematologic malignancy. These patients had significantly worse Palliative Performance Scale scores (32% vs. 24% were below 40; P < 0.001) and shorter lengths of stay (median 11 vs. 19 days; P < 0.001). They were more likely to die within 24 hours of hospice enrollment (10.9% vs. 6.8%; odds ratio [OR] 1.66; 95% CI 1.49, 1.86; P < 0.001) or within seven days (36% vs. 25.1%; OR 1.68; 95% CI 1.56, 1.81; P < 0.001) and were more likely to receive hospice services in an inpatient or nursing home setting (OR 1.34; 95% CI 1.16, 1.56 and OR 1.54; 95% CI 1.39, 1.72; both P < 0.001). Among hematologic malignancy patients, those with leukemia had the shortest survival (hazard ratio 1.23; 95% CI 1.13, 1.34; P < 0.001), and 40.3% used hospice for less than seven days (OR 1.31; 95% CI 1.11, 1.56; P = 0.002)., Conclusion: Hospice patients with hematologic malignancies are more seriously ill at the time of admission, with worse functional status and shorter lengths of stay than other cancer patients. Differences in outcomes suggest the need for targeted interventions to optimize hospice services for the hematologic malignancies population, especially those with leukemia., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the U.S. shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), "here is what we do," and increase the focus on "this is how well we do it" and "let us see how we can do it better." It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: To define patient characteristics associated with hospice enrollment in the last 3 days of life, and to describe adjusted proportions of patients with late referrals among patient subgroups that could be considered patient-mix adjustment variables for this quality measure., Methods: Electronic health record-based retrospective cohort study of patients with cancer admitted to 12 hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness network., Results: Of 64,264 patients admitted to hospice with cancer, 10,460 (16.3%) had a length of stay ≤ 3 days. There was significant variation among hospices (range, 11.4% to 24.5%). In multivariable analysis, among patients referred to hospice, patients who were admitted in the last 3 days of life were more likely to have a hematologic malignancy, were more likely to be male and married, and were younger (age < 65 years). Patients with Medicaid or self-insurance were less likely to be admitted to hospice within 3 days of death., Conclusion: Quality measures of hospice lengths of stay should include patient-mix adjustments for type of cancer and site of care. Patients with hematologic malignancies are at especially increased risk for late admission to hospice., (© 2014 by American Society of Clinical Oncology.)

Background: Dying patients whose implantable cardioverter defibrillators (ICDs) continue to deliver shocks may experience significant pain, and the National Quality Forum has endorsed routine deactivation of ICDs when patients near the end of life. The overarching goal of this quality improvement project was to increase rates of ICD deactivation among hospice patients., Measures: ICD deactivation rates pre- vs. post-intervention; and clinicians' knowledge and confidence regarding ICD management., Intervention: A multifaceted intervention included clinical tools, education, and standardized documentation templates in the electronic medical record., Outcomes: The proportion of patients whose ICD was deactivated increased after the intervention (pre- vs. post-intervention: 39/68, 57% vs. 47/56, 84%; odds ratio 3.88; 95% confidence interval 1.54-10.37; P = 0.001). Clinicians' knowledge and confidence regarding ICD management improved (pre- vs. post-intervention median questionnaire scores: 5 vs. 9 on a scale of 0 to 10; Wilcoxon signed-rank test Z = -5.01; P < 0.001)., Conclusions/lessons Learned: A multifaceted intervention can increase rates of ICD deactivation among patients near the end of life., (Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: Textbooks report that patients with ESRD survive for 7-10 days after discontinuation of dialysis. Studies describing actual survival are limited, however, and research has not defined patient characteristics that may be associated with longer or shorter survival times. The goals of this study were to determine the mean life expectancy of patients admitted to hospice after discontinuation of dialysis, and to identify independent predictors of survival time., Design, Setting, Participants, & Measurements: Data for demographics, clinical characteristics, and survival were obtained from 10 hospices for patients with ESRD who discontinued dialysis before hospice admission. Data were collected for patients admitted between January 1, 2008 and May 15, 2012. All hospices were members of the Coalition of Hospices Organized to Investigate Comparative Effectiveness network, which obtains de-identified data from an electronic medical record., Results: Of 1947 patients who discontinued dialysis, the mean survival after hospice enrollment was 7.4 days (range, 0-40 days). Patients who discontinued dialysis had significantly shorter survival compared with other patients (n=124,673) with nonrenal hospice diagnoses (mean survival 54.4 days; hazard ratio, 2.96; 95% confidence interval, 2.82 to 3.09; P<0.001). A Cox proportional hazards model identified seven independent predictors of earlier mortality after dialysis discontinuation, including male sex, referral from a hospital, lower functional status (Palliative Performance Scale score), and the presence of peripheral edema., Conclusions: Patients who discontinue dialysis have significantly shorter survival than other hospice patients. Individual survival time varies greatly, but several variables can be used to predict survival and tailor a patient's care plan based on estimated prognosis.

Objectives: To describe the trajectory of functional decline after an individual is referred to hospice., Design: Electronic health record-based retrospective cohort study., Setting: Three hospice programs in the U.S. southeast, northeast, and midwest., Participants: Individuals in hospice., Main Outcome Measures: Palliative Performance Scale (PPS) scores measured at intervals between hospice enrollment and death, on a scale from 10 to 100., Results: In 8,669 decedents, there was an average 13.8-point decline in PPS score. After adjusting for baseline PPS score and length of stay in hospice, three distinct trajectories were identified, each of which consisted of two diagnoses whose rates of decline had 95% confidence intervals (CIs) that overlapped. The most rapid decline was observed for individuals with cancer (adjusted decline 8.44 points/wk; 95% CI = 8.03-8.82) and stroke (adjusted decline 7.67 points/wk, 95% CI = 7.08-8.29). A significantly slower decline was observed in individuals with pulmonary disease (adjusted decline 5.02 points/wk, 95% CI = 4.24-5.75) and cardiac disease (adjusted decline 4.53 points/wk, 95% CI = 4.05-5.05). Individuals with debility (adjusted decline 1.86 points/wk, 95% CI = 0.95-2.78) and dementia (adjusted decline 1.98 points/wk, 95% CI = 1.01-2.89) had the slowest decline. In an inverse probability-weighted sample of individuals who had a PPS score recorded in the last day of life (n = 1,959, 22.6%), 35.9% had a PPS score of at least 40, indicating some oral intake, variable mental status, limited self-care, and an ability to get out of bed for at least part of the day., Conclusion: Although functional status generally declines in individuals in hospice, this decline is heterogeneous. Some individuals retain some physical and cognitive function until the last day of life., (© 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.)

Background: Although many patients enter hospice close to death, some enroll for more than six months. In 2011 the U.S. Centers for Medicare and Medicaid Services (CMS) required that these long-stay patients receive a face-to-face visit by a physician or nurse practitioner to ensure that they continue to meet eligibility criteria., Objectives: This study proposed to determine whether the face-to-face visit requirement increased the rate at which patients were decertified from hospice., Design: The study was a retrospective cohort study in six U.S. hospices. Decertification from hospice within 10 months of enrollment was measured., Results: Of 23,638 patients, 11,788 (49.9%) would have been affected by the face-to-face requirement. In bivariate analysis, there was a significant decrease in the decertification rate after the requirement was implemented-371/11,788 (3.2%) versus 578/11,850 (4.9%); odds ration (OR): 0.63; 95% CI 0.55-0.72; p<0.001. In a multivariable logistic regression model adjusting for changes in patient characteristics and clustered by hospice, there was still a reduction in decertifications-3.4% versus 5.2%; OR 0.67; 95% CI 0.47-0.97; p=0.034. Although the impact of the face-to-face requirement varied among hospices, all hospices had a decrease in decertification rates (absolute adjusted reduction between 1.4% and 3.6%)., Conclusions: The face-to-face requirement may decrease hospice discharges, contrary to its intention.

Purpose of Review: There is very little high-quality evidence to guide clinical practice in hospice care. In the areas of medical therapy, patient-centered and family-centered outcomes, and patient safety, there are numerous high-impact questions for which answers are needed. Although randomized controlled trials are the gold standard for research, such trials are difficult, time consuming, and expensive to conduct in a hospice population. Moreover, they cannot examine the implementation of therapies in real-world settings. Therefore, there is a need for novel, complementary approaches to research in this unique population., Recent Findings: This article describes the initial experience of the Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE). CHOICE is a national network of hospices that use electronic health record-based data collection procedures to answer key questions relevant to clinical care and policy. By using a rich source of existing data to conduct observational studies, CHOICE is able to overcome many of the most significant challenges of randomized controlled trials in hospice. However, this approach also created unique challenges related to governance and privacy concerns., Summary: CHOICE is a growing research network that has the potential to make a contribution to the science of palliative care in a hospice population.

Purpose: To determine which hospice patients with cancer prefer to die at home and to define factors associated with an increased likelihood of dying at home., Methods: An electronic health record-based retrospective cohort study was conducted in three hospice programs in Florida, Pennsylvania, and Wisconsin. Main measures included preferred versus actual site of death., Results: Of 7,391 patients, preferences regarding place of death were determined at admission for 5,837 (79%). After adjusting for other characteristics, patients who preferred to die at home were more likely to die at home (adjusted proportions, 56.5% v 37.0%; odds ratio [OR], 2.21; 95% CI, 1.77 to 2.76). Among those patients (n = 3,152) who preferred to die at home, in a multivariable logistic regression model, patients were more likely to die at home if they had at least one visit per day in the first 4 days of hospice care (adjusted proportions, 61% v 54%; OR, 1.23; 95% CI, 1.07 to 1.41), if they were married (63% v 54%; OR, 1.35; 95% CI, 1.10 to 1.44), and if they had an advance directive (65% v 50%; OR, 2.11; 95% CI, 1.54 to 2.65). Patients with moderate or severe pain were less likely to die at home (OR, 0.56; 95% CI, 0.45 to 0.64), as were patients with better functional status (higher Palliative Performance Scale score: < 40, 64.8%; 40 to 70, 50.2%; OR, 0.79; 95% CI, 0.67 to 0.93; > 70, 40.5%; OR, 0.53; 95% CI, 0.35 to 0.82)., Conclusion: Increased hospice visit frequency may increase the likelihood of patients being able to die in the setting of their choice.

Objective: To determine whether a prognostic index could predict one-week mortality more accurately than hospice nurses can., Method: An electronic health record-based retrospective cohort study of 21,074 hospice patients was conducted in three hospice programs in the Southeast, Northeast, and Midwest United States. Model development used logistic regression with bootstrapped confidence intervals and multiple imputation to account for missing data. The main outcome measure was mortality within 7 days of hospice enrollment., Results: A total of 21,074 patients were admitted to hospice between October 1, 2008 and May 31, 2011, and 5562 (26.4%) died within 7 days. An optimal predictive model included the Palliative Performance Scale (PPS) score, admission from a hospital, and gender. The model had a c-statistic of 0.86 in the training sample and 0.84 in the validation sample, which was greater than that of nurses' predictions (0.72). The index's performance was best for patients with pulmonary disease (0.89) and worst for patients with cancer and dementia (both 0.80). The index's predictions of mortality rates in each index category were within 5.0% of actual rates, whereas nurses underestimated mortality by up to 18.9%. Using the optimal index threshold (<3), the index's predictions had a better c-statistic (0.78 versus 0.72) and higher sensitivity (74.4% versus 47.8%) than did nurses' predictions but a lower specificity (80.6% versus 95.1%)., Conclusions: Although nurses can often identify patients who will die within 7 days, a simple model based on available clinical information offers improved accuracy and could help to identify those patients who are at high risk for short-term mortality.

Background: Hospice is a service that patients, families, and physicians find beneficial, yet a majority of patients die without receiving hospice care. Little is known about how many hospitalized patients are hospice eligible at the time of hospitalization., Methods: Retrospective chart review was used to examine all adult deaths (n = 688) at a tertiary care center during 2009. Charts were selected for full review if the death was nontraumatic and the patient had a hospital admission within 12 months of the terminal admission. The charts were examined for hospice eligibility based on medical criteria, evidence of a hospice discussion, and hospice enrollment., Results: Two hundred nine patients had an admission in the year preceding the terminal admission and a nontraumatic death. Sixty percent were hospice eligible during the penultimate admission. Hospice discussions were documented in 14% of the hospice-eligible patients. Patients who were hospice eligible had more subspecialty consults on the penultimate admission compared to those not hospice eligible (P = 0.016), as well as more overall hospitalizations in the 12 months preceding their terminal admission (P = 0.0003), and fewer days between their penultimate admission and death (P = 0.001)., Conclusion: The majority of terminally ill inpatients did not have a documented discussion of hospice with their care provider. Educating physicians to recognize the stepwise decline of most illnesses and hospice admission criteria will facilitate a more informed decision-making process for patients and their families. A consistent commitment to offer hospice earlier than the terminal admission would increase access to community or home-based care, potentially increasing quality of life., (Copyright © 2011 Society of Hospital Medicine.)

Background: Job satisfaction is particularly important in the hospice industry, given the emotional and interpersonal challenges that hospice staff face in providing care to patients near the end of life and their families. However, little is known about the job satisfaction of hospice providers, or about variation in satisfaction among disciplines., Methods: Staff at participating hospices completed the Survey of Team Attitudes and Relationships (STAR) using an online user interface. The STAR has 6 domains that comprise 45 items., Results: Results were submitted for 8,495 staff from 177 hospices in 41 states. The mean total score was 28 on a 0-100 scale (range, 0-100; interquartile range, 8-45) and hospice-level scores ranged from 15 to 44. Nonclinical staff (n = 3260) and clinical staff (n = 5235) had similar total scores (28 for both). Among clinical staff, in a mixed effects model adjusting for individual and hospice characteristics, physicians had the highest total scores (adjusted mean 42; 95% confidence interval: 35-46) compared to chaplains (30; 28-33), bereavement coordinators (27; 24-30), nurses' aides (29; 27-33); nurses (26; 28-33), and social workers (25; 23-26)., Conclusions: There is significant variation in job satisfaction both among hospices and disciplines.

Objectives: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members., Design: Mortality follow-back survey., Setting: Death certificates were drawn from five states (AL, FL, TX, MA, and MN)., Participants: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death., Measurements: Ratings of the quality of end-of-life care, perceptions of unmet needs, and opportunities to improve end-of-life care. Two questions were also asked about the peacefulness of dying and quality of dying., Results: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33-0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53-2.72). They also noted better quality of dying than those without hospice services., Conclusion: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying., (© 2011, Copyright the Authors. Journal compilation © 2011, The American Geriatrics Society.)

Objectives: Early and progressive cognitive impairments of patients with Alzheimer disease (AD) hinder their capacity to provide informed consent. Unfortunately, the limited research on techniques to improve capacity has shown mixed results. Therefore, the authors tested whether a memory and organizational aid improves the performance of patients with AD on measures of capacity and competency to give informed consent., Design, Setting, and Participants: Patients with AD randomly assigned to standard consent or standard plus a memory and organizational aid., Intervention: Memory and organizational aid summarized the content of information mandated under the informed consent disclosure requirements of the Common Rule at a sixth grade reading level., Measurements: Three psychiatrists without access to patient data independently reviewed MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) interview transcripts to judge whether the patient was capable of providing informed consent. The agreement of at least two of the three experts defined a participant as capable of providing informed consent. Secondary outcomes are MacCAT-CR measures of understanding, appreciation and reasoning, and comparison with cognitively normal older adult norms., Results: AD intervention and control groups were similar in terms of age, education, and cognitive status. The intervention group was more likely to be judged competent than control group and had higher scores on MacCAT-CR measure of understanding. The intervention had no effect on the measures of appreciation or reasoning., Conclusions: A consent process that addresses the deficits in memory and attention of a patient with AD can improve capacity to give informed consent for early phase AD research. The results also validate the MacCAT-CR as an instrument to measure capacity, especially the understanding subscale., Trial Registry: ClinicalTrials.Gov#NCT00105612, http://clinicaltrials.gov/show/NCT00105612.

Context: Volunteers are a key component of hospice, and they are required by Medicare conditions of participation in the United States. Yet, little is known about the impact of volunteers in hospice., Objectives: The goal of this study was to characterize whether bereaved family members in hospice programs with increased use of volunteer hours per patient day report higher overall satisfaction with hospice services., Methods: A secondary analysis of the 2006 Family Evaluation of Hospice Care data repository with hospice organization data regarding the number of volunteer hours in direct patient care and the total number of patient days served. A multivariate model examined the association of institutional rate of bereaved family members stating end-of-life care was excellent with that of hospices' rate of volunteer hours per patient day, controlling for other organizational characteristics., Results: Three hundred five hospice programs (67% freestanding and 20.7% for profit) submitted 57,353 surveys in 2006 (54.2% female decedents and 47.4% with cancer). Hospice programs reported on average 0.71 hours per patient week (25th percentile: 0.245 hours per patient week; 75th percentile: 0.91 volunteer hours per patient week; and 99 th percentile: 3.3 hours per patient week). Those hospice programs in the highest quartile of volunteer usage had higher overall satisfaction compared with those in the lowest-quartile usage of volunteers (75.8% reported excellent overall quality of care compared with 67.8% reporting excellent in the lowest quartile. After adjustment for hospice program characteristics, hospice programs in the highest quartile had highest overall rating of the quality of care (coefficient=0.06, 95% confidence interval=0.04, 0.09)., Conclusion: In this cross-sectional study, hospice programs with higher use of volunteers per patient day were associated with bereaved family member reports that the hospice program quality of care was excellent., ((c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Feeding and eating difficulties leading to weight loss are common in the advanced stages of dementia. When such problems arise, family members are often faced with making a decision regarding the placement of a percutaneous endoscopic gastrostomy tube. The existing evidence based on observational studies suggests that feeding tubes do not improve survival or reduce the risk of aspiration, yet the use of feeding tubes is prevalent in patients with dementia, and the majority of nursing home residents do not have orders documenting their wishes about the use of artificial hydration and nutrition. One reason is that orders to forgo artificial hydration and nutrition get wrongly interpreted as "do not feed," resulting in a reluctance of families to agree to them. Furthermore, nursing homes fear regulatory scrutiny of weight loss and wrongly believe that the use of feeding tubes signifies that everything possible is being done. These challenges might be overcome with the creation of clear language that stresses the patient's goals of care. A new order, "comfort feeding only," that states what steps are to be taken to ensure the patient's comfort through an individualized feeding care plan, is proposed. Comfort feeding only through careful hand feeding, if possible, offers a clear goal-oriented alternative to tube feeding and eliminates the apparent care-no care dichotomy imposed by current orders to forgo artificial hydration and nutrition.

Objectives: To define the frequency of post-traumatic stress disorder (PTSD)-related symptoms among veterans who are near the end of life and to describe the impact that these symptoms have on patients and their families., Methods: Patients had received inpatient or outpatient care from a participating VA facility in the last month of life, and one family member per patient was selected using predefined eligibility criteria. Family members then completed a telephone survey, The Family Assessment of Treatment at End-of-Life, which assessed their perceptions of the quality of the care that the patients and they themselves received during the patients' last month of life., Results: Seventeen percent of patients (89 of 524) were reported to have had PTSD-related symptoms in the last month of life. PTSD-related symptoms caused discomfort less often than pain did (mean frequency score 1.79 vs. 1.93; Wilcoxon sign rank test, P<0.001) but more often than dyspnea did (mean severity score 1.79 vs. 1.73; Wilcoxon sign rank test, P<0.001). Family members of patients with PTSD-related symptoms reported less satisfaction overall with the care the patient received (mean score 48 vs. 62; rank sum test, P<0.001). Patients who received a palliative care consult (n=49) had lower ratings of discomfort attributed to PTSD-related symptoms (mean 1.55 vs. 2.07; rank sum test, P=0.007)., Conclusion: PTSD-related symptoms may be common and severe among veterans near the end of life and may have a negative effect on families' perceptions of the quality of care that the veteran received., ((c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)